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capabayan
05-20-2008, 09:45 AM
Oh the dreaded side effects of prednisone!!! What ones do you struggle with the most? And how do you deal with each one as it comes?

I'll start off - thankfully I haven't had too much trouble with a huge appetite, which I've heard touted as one of the biggest side effects. Maybe I'm just too stubborn to let myself overeat, and have learned to "go to bed hungry"... maybe it just didn't hit me as hard as it does some people. However, the 2 that I have the hardest time with are not sleeping and weight gain.

As far as the weight gain goes, I found that it helps to re-do my wardrobe as the finances allow, so I actually have clothes that fit and make me feel attractive. My friends and family know why I look chubby and they don't care (as in, they love me anyway) so I've found that when I take time for myself and work on my appearance - but don't slave over it - I feel so much better usually. Still have my days, but when my esteem is up it doesn't bother me as much.

But for the lack of sleep - I had chronic insomnia before the WG started, and was able to mostly keep it under control with melatonin. Now that barely even does anything. I hate taking sleeping pills because I feel even more drowsy the next day - and you all know the constant level of fatigue we have anyway, so that doesn't help at all. I still take the melatonin, because it at least aids in the quality of my sleep, although not in the quantity... any suggestions other than sleeping pills?? I am not an emotional person, but some days it's almost more than I can handle to go without good sleep for so long. Having my hubby to snuggle against helps tremendously, but he sometimes has to work 24 hours shifts or go away for military duty.... Suggestions??

andrew
05-20-2008, 12:51 PM
I'm not on pred anymore but I remember there were two side-effects that annoyed me equally, largely because my wife and I were living with my parents at the time :D

I had most troubles with weight gain and mood swings.

We were living with my parents because I was too sick to work. I was a total food vaccum and was constantly hungry. My dear Mother, God bless her was (and always has been) worried about me putting on weight. She would follow me into the kitchen and monitor what I was doing and stop me if she thought I was eating the wrong thing or eating too much. No amount of explaining would help (note that I was 35 at the time :D). This, of course is where the mood swings came in. I had some 'full and frank' outbursts as a result. She stood her ground though and I got nowhere :)

I think in the end that may have inspired my move back to full time work and a place of our own :D

As for the insomnia, I loved it! I could surf the net all night and be fine the next day. I enjoyed it so much I actually missed it when I was tapered off the pred!

By the way, Mum and I get on fine!

dalzielette
05-20-2008, 02:17 PM
Oh, steroids. Why else am I awake at this time while my family has been in bed for at least a good hour and a half?
Lets just state that my family is a sleeping family. On a healthy day, as in when not in relapse mode, I need at least 8-10 hours of solid sleep to function well; but this round of drugs have done a doozy on my body. I now can go to sleep whenever, but I am pretty much guaranteed to wake up every hour (1, 2, 3, 4) until morning. And I wish I was able to function well without the sleep, but for some reason I wake up tired and take naps during the day. Sleep has definitely been an issue with the steroids. I tried sleeping pills also, for about a month, but over the last week I have dropped them because, like you said, they made me feel even more tired the next day. Not to mention, between the sleeping pills and the pain killers (Darvocet because of the Sinus pain and headaches caused by the steroids) I wasn't able to function on a decent level, and my ability to articulate verbally was very low. I am a blonde naturally, but man, I was beyond ditzy on those drugs.
And yes, the weight gain. I had problems with steroids and weight gain in my previous years (mainly in high school) but for some reason this bout didn't cause any irrational cravings... yet. It was actually when they put me on the cytoxan daily that my stomach became unsettled and made me want to eat.
I guess those are my major three this time: insomnia, headaches, scatterbrainedness. Then again, i have been getting so used to the way i feel on these drugs, everything seems normal.

Gwenllian
05-21-2008, 12:02 AM
I was chatting to my mum once, and I described steroids to her as 'my friend, my enemy.' :)

I absolutely HATE steroids. I first went on them when I was 14 years old, and I hated the side effects so much, that once I came off them I told the doctors I never wanted steroids again, and to put my request down in my notes "do not give this patient steroids.'

I did however, when I started to lose my sight in 2007 following the birth of my daughter. The weight gain was sooo depressing, I just couldn't stand it. And the insomnia was awful too, - I would be up at 3am doing all the ironing, like a crazy woman!:D

The urge to eat though, is absolutely incredible. I feel so strongly about steroids, that it drives my consultant crazy.

witho
05-25-2008, 02:00 AM
Gwenllian - you are so right when you say "my friend, my enemy"! An amazingly powerful drug, but boy, does it mess with you!

It was great to get an appetite back (I hardly ate for a couple of weeks before I was diagnosed) but it was just insatiable! In the 4 month period after coming out of hospital, I gained about 15 kilos and had a real moon face.

Since tapering onto a lower dose, the weight gain has levelled off and now I'm swimming and running again, it does seem to be coming off, but oh so slowly!

On higher doses, I had muscle twitches at night, insomnia and terrible trembling. I remember shortly after coming out of hospital, I had to write a cheque for some repairs to the house - my handwriting was so shaky! I ended up paying by online banking, because I just couldn't do it.

And then there's the mood swings - over emotional, euphoric - you just never know.

Now I'm on 12.5mg every other day, and not suffering any side effects. Probably still a bit over-emotional at times, but I was a bit like that "before pred" anyway. Hopefully, in September they will decide I'm well enough and can come off altogether...

Gwenllian
05-27-2008, 04:14 AM
Hi Witho

I didn't know you could take pred every other day, my doctor never gave me that option! Do you find the weight gain/side effects are much less now?

witho
05-27-2008, 07:30 AM
Yes, I think the weight gain has lessened. I'm hoping that by keeping up the running and swimming, I can start to lose weight again in earnest. It does seem to be very slow progress though.

Regarding alternate days - well, I guess they know what they're doing! I've been on alternate days for several months now and it hasn't been a problem for me. Not sure why he chose that instead of, say, 5mg per day... maybe it's a good way to get your body used to being without it?

andrew
05-27-2008, 06:17 PM
y... maybe it's a good way to get your body used to being without it?

I think that is the case. I was tapered off the Pred this way.

debbie
06-18-2008, 12:13 PM
My side effects are much the same....the weight gain is what I had the most problems dealing with...which I am sure contibuted to the mood swings. But now that I have somewhat accepted my moon face and that someday my face will hopefully go back to normal, I am a happier person, which I have also found I am sleeping much better.

capabayan
07-09-2008, 03:58 AM
I am really frustrated right now with prednisone!! I finally got down to 20 mg, which means the weight gain is supposed to stop (according to my doctor)... and it did for a while. I actually lost about 4 pounds. But all of a sudden in the last 2 weeks I've gained it all back - now my shorts that I bought a month ago don't even fit anymore! And the mood swings have come back worse than before!!
I feel bad, because my husband just got back from spending 2 months in boot camp, and I'm crabby so much of the time (totally abnormal for me)... I cannot WAIT to get off the pred!!

Sorry, just needed to vent to people who would understand....

andrew
07-09-2008, 06:00 AM
Urk, sorry to hear that. I think the trouble is that your doc raised your expectations too high.

I saw no change until I was completely off the Pred. However, there are others that see changes on low doses. Everyone's different though and it's going to be trial and error too see where you stand as far as losing the effects from Pred. I guess you already worked that out though.

Does your doc have any plans when you are reducing again or is it a 'wait and see' approach?

You need to feel better. I suggest going shopping and buying yourself a couple of t-shirts :D:D:

http://www.zazzle.com/prednisone_fear_me_shirt-235295171467716427?gl=restful

http://cure4lupus.org/product_pages/clothing/tees/predwar.htm

Also found this while I was searching for the t-shirts: http://idliketobuyabowel.blogspot.com/2007/11/joy-of-prednisone.html

I like the part where she says:

"I'm sure some of you reading are familiar with Prednisone, the corticosteroid designed by Beelzebub himself to provide miraculous results overnight at the cost of your long-term sanity and general health."

capabayan
07-10-2008, 12:45 AM
Wow, thanks, I desperately needed that laugh! I think I'm gonna get me one of those pred bunny tshirts :)

I should hopefully continue to taper off soon. Because of the issues I just had with my white counts, the doc wants to wait another month or two before going down anymore, just to make sure things are stable. But then, hopefully, we'll continue dropping, very slowly I'm sure. I just hope my body can handle being on lower doses!!!

Chica
07-19-2008, 11:30 AM
Ugh. I never realized how much you could hate something so essential to survival. The weight gain, the ravening hunger - my mom and I often joked up how I lovingly sidled up to the fridge looking for pickles or olives or ANYTHING! The moon face, the buffalo hump, the hair in unwanted places, the stretch marks - actually stretch canyons. I put on 70 pounds in a matter of months. Now that I'm on the maintenance dose of 5 mg, the weight has gone but not the scars. Inside and outside. I will forever feel like I don't recognize myself in the mirror. The trembling, the hot flashes, the insomnia, the mood swings are enough to make you feel crazy - I actually verged on paranoid some days. But when it takes away all the pain that is involved in severe inflammation, prednisone is like manna from the Gods! Consider it simply a lifelong love-hate relationship. Can't live with it, can't live without it. I do try to avoid higher doses at all costs if I can....but sometimes it's just unavoidable. Remember there is always a light at the end of the tunnel and eventually that prednisone is going to do what it's meant to and you won't need to take so much anymore.....

Carol
07-21-2008, 04:19 PM
I seem to sleep OK for the first part of the night then am awake about 3pm. I find the best way is to cheerfully get up, make a cuppa (that's when I drink my Herb robert tea)and actually achieve something - fold washing, unpack the dishwasher, get some paper work done while I'm up - that is always a positive to go back to bed with. This achieving something is also good in that when you need a rest the next day you know you have put in time over night. Allow yourself something semsible to eat - I really needed that snack in my early days - maybe you are having a blood sugar drop. Sometimes having something sensible for late supper helps too. I meditate regularly so I think I don't need as much sleep during the night because of this.
Regards
Carol

crackers
12-20-2008, 12:27 AM
when i started on pred @60 mg a day i looked in the mirror one morning and a total stranger was staring back at me.it just seemed to happen overnight. the weight gain was something i also was not prepared for.my weight had always been around 10 stone and for a 50 something very active and fit.suddenly i was craving chocolate bars and cakes, things i'd never eaten previously.sleep was another problem,i'd go to bed and wake up 2 hours later but because of the fatigue caused by wg i was knapping thru the day.the fatigue is also the reason i'm not getting enough exercise.you just can't win can you?

capabayan
12-20-2008, 03:25 AM
Now that I'm on the maintenance dose of 5 mg, the weight has gone but not the scars.

I'm finally down to 10 mg, and have been for a few months now. Unfortunately none of the 40 pounds I've put on is coming off... even though the stretch canyons are most definitely appearing!! For someone who has always been on the smaller side, being overweight is quite depressing at times! What I really need now is an exercise buddy - but most of my friends work outside the home and want to do more than just walk once around the block, which is all I can handle right now. Oy!!

crackers
12-20-2008, 04:35 AM
I certainly know where you are coming from with the mirror John says the same thing,it didn't help when he went to a clinic and one of the nurses said well you have certainly got the moon face associated with steroids if i had been there i would have insulted her too.
Hugs to you all
Sue xx

nordberg
02-21-2009, 06:56 AM
These purple spots on hands and arms....not raised, not painful, appear, then fade, then new ones appear. Are they from Prednisone or Cytoxan or the WG itself ? They actually look like little old man liver spots..... just what I needed. N.

andrew
02-21-2009, 07:13 AM
From my experience, unlikely related to the meds but more to the WG. How long have these spots been appearing? Have you reduced any meds (particularly Pred) at or about the same time as getting the spots?

Sangye
02-21-2009, 07:19 AM
I agree with Andrew. I've had them on my legs since before the Wegs was diagnosed. They're common with Wegs, and usually indicate active disease. I had tons without the meds. Being on Cellcept only, I still get a fair amount, but mostly just when I'm overtired (which is almost every day *sigh*).

Carol
03-08-2009, 11:51 AM
My purple lesions were an early indicator of the disease so I was on no drugs at all at that point. In fact although they tooked terrible - on my knuckles, raised and watery they were a very good signal that something was drastaically wrong. At the same time I had red lesions on my legs and arms which looked like ringworm and also small watery blisters on my face. I'm actually quite grateful for them as I sat in the doctors surgery stripped down to bra and nickers (fortunately had the good balck ones on that day) and doctors kept coming in for a look and making suggestions about what tests they could do on me. I was an interesting specimen in a country surgery! They have gradually faded.

crackers
03-08-2009, 01:09 PM
when i saw my rheumy a couple of weeks ago she was bemoaning the fact that i had no lesions,that if i had some she could at least take samples from them.i,like an idiot, apologised for not having any.:o
john.

andrew
03-08-2009, 03:00 PM
I can send you some of mine by Fedex next time they show up if you want. I have no need for them.

Sangye
03-09-2009, 12:21 AM
I can send you some of mine by Fedex next time they show up if you want. I have no need for them.

ROTFL.....

I also seem to have a lesion surplus. I'm willing to pay for shipping, and will give you a volume discount. Buy now!

Offer only applies for a limited time. I mean, I could drop dead any day, you know.

crackers
03-09-2009, 12:31 AM
thank you andrew and sangye for your very generous offers but i feel i must decline.as for the suplus lesions you could set up a website,lesionsrus.com for example.sounds like a winner to me.:)
john

Sangye
03-09-2009, 12:47 AM
Wow, John, you are one cool customer. Alright, your clever bargaining tactics have triumphed. I will give you them for FREE. I will even pay you a small gratuity for taking this excess inventory off my hands (and legs, and mouth, and....).

crackers
03-09-2009, 01:34 AM
sangye i have wrestled with my conscience but i just can't bring myself to come between yourself and your lesions.i know how close you've become to them over the years and couldn't live with myself knowing what i'd done.the thought of you lying in bed at night not knowing if they are being well looked after or not would be too much for me to live with.so you live happily ever after with your skin buddies. ps you could always send me the occasional photo to let me know how they are doing.
john.

nordberg
03-09-2009, 01:44 AM
These spots are not raised or wet. They do not hurt any more than a freckle and go away after a week or two. This "disease" is too varied to be just one thing judging from all the experiences I have read here. Perhaps it should be called W's Syndrome. I know where this came from in me, know it as well as I know anything about me or my life. For pneumonia I was given a drug, Levaquin, that I am violently allergic to. When my body went ballistic, doctors loaded me up with prednisone in large doses and then blood transfusions. The only symptom I have are the nodules in the lungs which show up on x rays. They appear to be shrinking slowly. I will get a new reading a week from Monday on my every two month visit to my pulmonologist. In the meantime, it's snowmobile and ski season so life goes on. N.

andrew
03-11-2009, 07:25 AM
I LOVE snowmobiles!!! They have to be the greatest thing on the planet...aside from jetskis :D

Good to hear that those nodules are reducing. Agree that pretty much everyone has a different response to either the disease or the drugs in some subtle way. Would be great to see a cure someday...or a vaccine!!

coffeelover
03-11-2009, 10:18 AM
Oh the wicked pred......My side effects that I do not like are the prednisone cheeks (weight gain too) and the problem I had with sleep. Since I have tapered down to 20 mg I am sleeping better but needed blood pressure meds and a sleepign medication called Trazodone to keep me slleping for more than 3 hours at a time. I now only wake up one time per night (in a 6 hour period) and find that do able.
I just really hate the way I look. But, have accepted that as my new norm for a while as someone in this support group told me to do. It was a great thing to say to me and mood is much better.
I was just explaining my mood swings to my husband the other day and asked him to please check prednisone online and the side effects. Since then, he seems to be trying to understand my ever changing ups and downs. I really like the ups.......which is where I am at right now.
It is nice to know that others suffer from the same issues. Good luck to you all!

jola57
03-11-2009, 10:25 PM
Good that you are on an upswing. here I am 4:00 in morning blogging and web surfing. I can't cuddle to my hubby of 25 years and sleep alone, all because of the pred yet being without it is unthinkable. I too hate my look, especially when I was on my cruise vacation and had to wear my fat clothes, but life goes on.

coffeelover
03-12-2009, 03:09 AM
Jolanta,

I too sleep alone. We have a waterbeds which I just love, but since my trach surgery I get bouts of heatburn and GERD and prefer to sleep upright. I think we need to go bed shopping......:)

jola57
03-12-2009, 03:47 PM
Heartburn - my almost constant companion - what is he doing in your bed??

Jack
03-12-2009, 05:34 PM
I too sleep alone. I cough all night so I'm not a very pleasant person to share a bed with. :(

Sangye
03-13-2009, 01:40 AM
I have a suggestion for heartburn that even gets rid of my cellcept heartburn. Twice a day, drink 2 oz of Aloe vera gel mixed in water or juice. Make sure you use the gel, and whisk it to dissolve (there will still be some blobs). It's bitter, so you can add a little juice to hide it, or just get used to it. You won't believe how well it works, and it also heals your entire GI tract. Make sure you refrigerate the open bottle of gel.

I'm sure you know heartburn can cause or worsen a cough. Maybe if it decreases it a little, you can sleep better!

Jack
03-13-2009, 05:21 AM
Thanks for the sugestion Sangye, but I take Lansoprazole for acid problems and it works very well. I certainly know about it if I run short!
My cough is caused by Bronchiectasis which I am told is not connected with Wegener's, but I think they are wrong!

Sangye
03-13-2009, 05:28 AM
Yes-- it occurred to me that anyone on higher doses of pred, really needs a pharmaceutical acid blocker. Pred can cause gastric bleeding, and there's no natural way to prevent it if you're on higher doses. I forgot!

I agree with you about the bronchiectasis being linked to the Wegs somehow-- maybe part of the disease, part of the lung's reaction to the disease, or a drug side effect. I think MDs sometimes get caught up in the "We can't prove an exact link" thing and they just shut down all evidence to the contrary.

coffeelover
03-14-2009, 07:42 AM
I understand your frustration. I still ahve a trach in for another 3 months or maybe more and I can handle that better than the Prednisone. I am also on 20 mg and still suffer from the weight gain as well.
Someone on this forum told me to try to accept the new normal and that includes the pred UNFORTUNATELY!:(

crackers
03-14-2009, 09:16 AM
yes i'm afraid pred is a necessary evil.i've been on it for 2 years now and every time the rheumy tries to wean me off i have a flare up.can't live with it can't live without it...........or is that women:)john

Luce
03-14-2009, 10:30 PM
So annoyed right now! I've been tapering the pred since I was diagnosed 5 months ago and had got down to 10mg, which Ive been taking for the last month. My face had almost returned to normal and I was so pleased everything was heading towards remission really quickly.
However, I had my usual weekly blood test yesterday and my consultant rang to tell me that my ANCA had shot up from 23 to 170. So I have to up the pred to 30mg and may have to switch back to cyclophosphamide as the azathioprine isn't working.

I could think of quite a few swear words right now....

Sangye
03-15-2009, 12:52 AM
I'm so, so sorry-- I know what that's like. Frustrating, infuriating, and at its core, terrifying. It feels like you barely start to climb out of the hole, like you're just letting yourself get hopeful again, then WHAM! back in the lousy hole. :mad:

I forget if your rheumy is a Wegs specialist. If not, it would be worth consulting with one. Going back to cyclo is not something to do lightly, and there are many alternatives. Be well--

Luce
03-15-2009, 01:56 AM
Rheumy, had to snigger at that. I'm only being treated by a nephrologist as I had kidney involvement and he made the diagnosis so he won the battle with a rheumy and got to keep me as a patient. I saw the rheumy once while I was an in-patient who explained WG and I haven't him since as the nephrologist thinks he can handle this by himself.
As I'm in England I have to play by the NHS rules and don't get to choose my treatment, I rely on referrals to the correct specialists.
I don't wanna go back on the cyclo either, I'm only 25 and didn't get a chance to do anything regarding fertility before starting treatment, so the less I have now the more chance I hacve of being able to conceive in the future.
There was a vague mention of another drug which I assume might be methotrexate but as the consultant still hasn't rung me I'm still in the dark.

Thanks for understanding, it is infuriatingly frustrating that I'd made back to work full time for 2 months and now that might have to change.

On the plus side I only had a chest x ray on Monday and there weren't any new holes and what was there before has shrunk considerably, and the blood test showed my kidney function is still within normal ranges at the moment.

Sangye
03-15-2009, 03:15 AM
I don't know anything about the NHS of course. I do think it's vital to have a Wegs-specialist rheumy working with you. Can your neph refer you? I don't know any doc who can handle Wegs without other specialists. You should see an OB/GYN oncologist about fertility issues as soon as possible.

Jack
03-16-2009, 05:58 AM
I'm only being treated by a nephrologist
So am I, but he is also head of department and runs a multi-disciplinary vasculitis group so I know I'm in good hands. I was originally admitted by Rhumatology, but they handed me over when I suffered renal failure. I don't think Rhumatology have a monopoly when it comes to treating Wegener's.

Sangye
03-16-2009, 06:22 AM
You have a Wegs-neph, which is not what most people have, so yeah, you're in good hands! A typical neph doesn't usually have the skills to manage Wegs alone. I don't know what Luce has.

Luce
03-16-2009, 07:09 AM
Luce has a headache...

My guy still hasn't rung me so I don't know where I am at the moment!
I'm not sure if my guy is Wegs-savvy or not really. He has told me that he has come across it before and that I would be receiving the same treatment whoever I saw. He ordered the plasma exchanges for me as well so I kn ow he's pretty clued up but is it enough?
As for fertility I did see a gynae and he basically said he couldn't do anything for me until I had been off the chemo/immuno-suppressants for a few months when he would then perform a fertility test and advise appropriately.

I will keep you updated when I know more myself, which I hope is sooner rather than later.

Sangye
03-16-2009, 07:23 AM
Your doc is definitely not Wegs savvy. Everyone needs individualized treatment-- not just what he can look up in the books or in recent research. It's way more complicated than that.

I had no computer access for many months after my diagnosis. So all I knew was what my rheumy told me. He said Wegs was extremely rare, and that he'd treated about 6 cases in 12 years. I thought that was pretty good. He did say it might be good to get a second opinion at Mayo, but I didn't trust my intuition (which was screaming at me to get to Mayo or somewhere bigger). Not only did I have terrible damage and complications under his care, but I've since learned I never would have had to go thru cytoxan if I'd been at JHU. I can't emphasize enough-- you need a Wegs specialist. Even at Mayo in Arizona had nothing compared to a true Vasculitis Center.

Jack
03-19-2009, 11:37 PM
I've been taking prednisolone for over 20 years now and have been stable on 10 mg for some time. I was on 5 mg for a while, but it was not quite enough to ward off some of my symptoms. The down side has been -

Weight gain - but now I'm suffering from weight loss!
Moon face - much reduced once my dose came down.
Osteoporosis - in spite of taking Calcium etc. my bone density is down to around 50% and I can break ribs real easy!
Cataracts - in both eyes, both ops had to be repeated due to complications.
Mood swings - I used to be very much in control of my emotions, but not any more.
Inability to handle stress - a thing I used to be good at.
Thin skin - like paper.
Bruising - without even knowing that I've knocked myself.
Digestive problems - perhaps not all down to the steroids.

Other than that, it's a great drug! :rolleyes:

Sangye
03-20-2009, 12:27 AM
(Which reminds me of an old joke--"Other than that, Mrs Lincoln, how did you enjoy the play?")

Sheesh, Jack, that's tough stuff. When I was on pred (and ever since--guess it can take years to convince the body), I felt like I was physically and emotionally very fragile. I even described it as feeling like I was made of rice paper. Very hard to explain to anyone who hasn't been on it.

As far as mood swings and inability to handle stress, you probably know this but there's a lot psychiatry can do to rebalance those chemicals. "Mood stabilizers" in particular might be just the thing. The imbalancing effects of pred are profound throughout the body, including the brain. It goes way beyond just drug side effects.

Doug
03-20-2009, 01:34 PM
I will be so happy when I can find where I am in this! The matter of specialists is very, very important, as others have noted. At one point, I had a pulmonologist, an renalogist, a rheumatologist, and an allergist poking and prodding me at the same time. In my instance, the rheumatologist was the head of the University Hospital (U. of Colorado) in Denver. He never visited me with fewer than three other staff. The renalogist (also a department head) came around with two other doctors. Two other doctors came around with 11-12 other doctors ("baby docs"- residents, etc.). I was there, I guess, for their edification. The allergist came over from National Jewish Hospital- Denver, and over-saw a kidney biopsy done by an Oxford Fellow in the Renalogy Department at UHD. I never quite figured out the connection. The pulmonologist regularly (daily) compared notes with the Rheumantology Deparment Head until I came back to Nebraska, where he returned to being my primary care doctor even now. I don't live in an area noted for readily accessible medical care- Denver is a good four hour drive from my home. Though it is important to have a doctor with experience with many Weggie patients in his or her career, I think it is even more important for the patient to establish that the doctor has that background. Even as sick as I was when I went to Denver, I had no problem bringing the topic up. It turned out the Rheumatology Department there was the one with the greatest expertise in treating our kind, and my primary care doctor, on his own, had established that, too. My treatment was what my pulmonologist characterized as "aggressive" (I was drugged to the max, but my blood work was monitored closely). My biggest problem- other than barfing my guts out in the early stages (ever take your medications, vomit them into your mouth, and swallow the vomit back rather than lose you dosage?:()- was wildly fluctuating red and white blood cell counts. Anyone on injected Procrit? I had such severe anemia most of the time I was on Cytoxin that I had weekly Procrit injections from roughly February 2004-May 2005, as best I can recall. Of course, I had the issue of blood in my urine or high creatinine levels, noted elsewhere. That was the scariest symptom to me. Everytime I saw my pulmonologist at the start of my treatment and he said "Your creatine is high," I knew I was hospital bound, like it or not. The renal issue was part of why I spent my month in University Hospital in the transplant ward! The Cytoxan suppressed my immune system, of course, and dialysis with plasma pheresis (especially the later) strips you down to pretty much no immunity. The renal issues were the cause of the aggressive treatment. What I can't figure out, my fellow Weggies, is how my treatment, mostly the same as all the rest of you- I mean, all the treatments and drugs you mention are pretty standard treatment-, left me weak, immuno-suppressed, but back at work in three months with pretty much no complaints other than physical weakness, yet many of you, who live in areas close to major centers of medical care, have nightmare stories to share about, well, you name it. Praise God! That's all I can think to say. The NHS issue is scary. God be with you on that one!

Doug
03-20-2009, 01:45 PM
p.s. How many of you had plasma pheresis as part of your treatment? Though it was characterized to me by my pulmonologist as experimental for Weggies (in 2004), the doctors from Rheumatology indicated it had been used successfully there on "several" Weggies. The standard practice there at University Hospital-Denver for this phase of treatment was one week of dialysis, one day off, dialysis and plasma pheresis immediately after, one day off, a final treatment of dialysis and plasma pheresis immediately after. Some institutions, my rheumatologist told me, did as many as nine total treatments (the last for with plasma pheresis), by UN-C doctors found anything over seven was overkill. I feel guilty to be thriving so well when others of you still are suffering hell.

jola57
03-20-2009, 06:12 PM
I think that to best answer your question about the multiple states of the disease in us all is that this crazy illness affect everyone differently. I never suffered the horrors of being in a hospital because of being so far gone, yet 2 and 1/2 years later and I'm still on 40 (hurrays I lowered this week)pred and chemo (for the next 3 months) then onto aziatropine. I still consider myself very very lucky that the disease is kept in check. I am glad you are in remission, that is all that we can hope for and knowing that some of us can achieve it is good enough to keep us hoping to get there.

Jack
03-20-2009, 11:31 PM
I had plasma pherisis when first diagnosed, but since I went on to suffer renal failure, perhaps it did no good.

By the way - I have had no problems with the British NHS system. I get treatment on demand from one of the countries major teaching hospitals and its all free! :) As with anything else, it probably depends very much on the individuals involved.

Luce
03-21-2009, 04:22 AM
I had 6 plasma exchanges back in October when I was first diagnosed and in hospital for 2 weeks. I was originally going to have 12 but after 6 my ANCA had pretty much been reset so it seemed a little pointless to carry on. When the machine didn't clot I quite enjoyed the plasma and found it quite therapeutic to be sat on the machine for a few hours a day.
As for the NHS, although I don't necessarily agree with every aspect of my treatment I cannot fault the way I was dealt with in the beginning. The plasma exchanges cost the NHS somewhere in the region of 35,000 but there was never any hesitation in getting me the treatment and of course I could never have afforded it myself.
The only thing I grumble about regarding the NHS is that I am still being treated by the renal team when my kidney function is completely normal. Having spoken to everyone here what I need is a Rheumy but I seem to be a curiousity for renal and they're not willing to hand me over.

Jack
06-18-2009, 05:43 AM
Thought I would revive this thread as it is already called "Prednisone".

My dilema is this - I currently take 10 mg of pred / day, but have been taking it for so long now that I'm getting quite badly affected by side effects (pretty much all of them!). My consultant says that I could try cutting down a bit, but I can feel that I'm quite near the edge with the state of my Wegener's - nose a bit runny, fluid in my ears, joints a little stiff. I've just got myself a prescription for some 1 mg pills so that I can cut down at 1 mg / month aiming at 7 mg / day, but I'm scared! Should I give it a try?

crackers
06-18-2009, 06:11 AM
jack i know you don't need me to tell you this but there comes a point when the medicine becomes a bigger problem than the disease.you could get some 2.5mg tabs and along with your 1mg tabs drop it by half a mg instead of one.you've been on pred for so long the slower the reduction the better.
john.

jola57
06-18-2009, 02:57 PM
Jack, I'm with John on this one, take it down realy slowly. .5mg per month might be better. I started tapering from 50 in march to 15 now, so it took me 3 months, but as you know its the 10mg mark that is the worst. Last year when I tapered too quickly from 10 to 5.5 I flared up in 3 weeks!!!!. Now I will sit with 15 for at least couple of months . Go down nice and easy. Good luck. Also alternate as in 10mg one day 9.5 next for 3 to 4 weeks then 9.5 and 9 for 3 to 4 weeks . I realy realy hope this works for you

coffeelover
06-19-2009, 08:38 AM
Jack,
I agree with John. The slower you taper the better.

I am sorry you have to agonize over this decision...I have confidence that you will know what will work best for you and remember....we are all here cheering you on whatever your decisions.
Lisa

Jack
06-19-2009, 03:05 PM
OK. I'll start today. :)

0.5 mg / month and my body will never notice!

crackers
06-19-2009, 06:22 PM
good luck jack.
john.

Derek
06-19-2009, 07:15 PM
Jack

I hope it all goes well

Derek

Doug
06-20-2009, 10:21 AM
Me too. With all you've experienced, Jack, it would be great to read, some near day in future, that something went well, that Prednisone was in your past, that that "new normal" was a state where you felt good enough to dig into unfinished yard projects (no pun- just a random collection of words in some intelligible order), maybe walk a block, whatever your heart desires. You are much too young for the body you now have! I realize one has to have realistic expectations, so let us see what comes about! :):):):) + : )

Jack
06-20-2009, 03:17 PM
Thanks for all your support! :)

Jack
06-25-2009, 03:28 PM
I've dropped to 9mg of pred for a week now and I'm really not sure that I'm going the right way. My legs hurt even more and my left arm has started to hurt too (that's a new one). I think I'll give it another week and then perhaps consider increasing my dose instead. :eek:

jola57
06-25-2009, 03:40 PM
Jack, alternate with 9.5 and see how that goes

Doug
06-26-2009, 03:15 AM
Jack-

Do you determine your dosage on Prednisone? My doctor lets me do that with Furosimide, but that's not as critical as Prednisone. Just curious. I know you have years of experience with all the therapies, probably know as much as or more than many doctors and nurses about these things. :)

Regardless, more power to you on reguating your Prednisone dosage.

Jack
06-26-2009, 05:29 AM
Under normal circumstanses, all my medication is a result of agreement between myself and the consultant. But of course, he can interpret the test results better than I can and has a better knowledge of the medication and its effects. Generally, this means that I go along with his recommendations although on the odd occasion I have expressed a preference for a slightly different regime.
At the moment, we are both aware of the conflicting effects of my Prednisolone dose and have had a debate as to whether it should be increased or decreased. Both have their up and down sides, but we decided that trying to lower it would be a good move. However, the past week with a reduction of only 1mg has not been good. In fact, this afternoon, I gave in and took an extra 5mg :(.

The pain in my arm has improved already! I feel like a junkie!

Think I'm going to change my mind and increase my dose slightly even though it is storing up even more problems for the future. It is all a case of balance with quality of life now.

crackers
06-26-2009, 05:39 AM
jack my rheumy told me two weeks ago that i am steroid dependant and that's after two years and three months.
john.

Doug
06-26-2009, 07:18 AM
Under normal circumstanses, all my medication is a result of agreement between myself and the consultant. But of course, he can interpret the test results better than I can and has a better knowledge of the medication and its effects. Generally, this means that I go along with his recommendations although on the odd occasion I have expressed a preference for a slightly different regime.
At the moment, we are both aware of the conflicting effects of my Prednisolone dose and have had a debate as to whether it should be increased or decreased. Both have their up and down sides, but we decided that trying to lower it would be a good move. However, the past week with a reduction of only 1mg has not been good. In fact, this afternoon, I gave in and took an extra 5mg :(.

The pain in my arm has improved already! I feel like a junkie!

Think I'm going to change my mind and increase my dose slightly even though it is storing up even more problems for the future. It is all a case of balance with quality of life now.

It is so important to be both an informed Weggie as well as a Weggie who discusses his issues with his doctors, such as you do, Jack. I hope new Weggies in the forum note your methodology, adopt it, and thereby establish the best possible medical practitioner~Weggie relationship they can.

The longer I am on this forum (and I've only been on it since April!), the more things start to repeat, the more I start to repeat myself. For example, a video link I posted a bit back was reposted recently by someone, who like me, felt it bore viewing. Frankly, it was such a good presentation of the WG story and how it can kill if not diagnosed and treated in a timely manner, that it probably needs to be reposted from time to time to assure that the story isn't forgotten. To that end, meaningful repetition to assure those coming into the forum are adequately oriented, according to need, makes sense, and makes me less concerned about repetition.

Jack, may your Prednisone issues settle down soon! I can't imagine the depth of your frustration, though the sense of it is clear enough.

jola57
06-26-2009, 04:50 PM
Jack, we are pred junkies and unfortunately because of Weg we just don't know if its the withdrawal or flarup that is causing the pain. I suspect it's a bit of both. I regulate the same as you with consultation with my doc and I recomend it to everyone that feels comfortable with "self" medication. Wanting to get of pred sounds great but it is not as simple as it sounds. So do take is slow and easy, up it when necessary and then lower it by bits. Hope it works for you.

shazny
06-26-2009, 09:32 PM
Jack I hope you manage to get the balance right. I have been on pred now for the last 10 years. The maximum dose is 100mg daily when my scleritis flares up - unless of course you count the pulses given to me when admitted - and the minimum i can get down to is 5mg/day. I have only been off four times in the last 10 years but each time i have had flare ups that have required me being admitted within a week of stopping so unfortunately i too am one of the pred junkies. I am currently taking 10mg/day which i have reduced myself with my specialist's knowledge but don't feel i will get much lower than this. The weight gain really has been the biggest downside for me, i have gone from a 5'10" trim 63kgs to a hulking 110kgs currently. Other than that the mood swings and sleepless nights are not too bad. I hope you manage to get your body to some sort of even keel with the pred jack and i'll keep my fingers crossed for you.

Sangye
07-14-2009, 03:12 AM
Jack, where are you at now with the pred?

Jack
07-14-2009, 03:39 AM
I dropped from 10 to 9 for a week, but developed pains in my elbows and the legs were no better so I made the decision to go the other way. :eek:

I've been taking 12mg for the past couple of weeks and the pain in my arms went away almost immediately. I keep thinking my cough is a bit better too, but then I have bad days too. :(

I know its a trade off between how I feel now and the damage that pred causes, but I think quality of life is more important at the moment.

Thanks for inquiring. :)

Sangye
07-14-2009, 03:42 AM
It's so hard--seems like either way is a deal with the devil. At any rate, you're right-- you've got to exist in the here and now. I'm glad you're not in major pain.

Jack
07-14-2009, 03:47 AM
You're going to wear your keyboard out today!:eek:

Sangye
07-14-2009, 05:06 AM
Or wear out my welcome back! You guys might start calling my ISP and asking how much it'll cost to disconnect me again!! :D

andrew
07-20-2009, 11:50 AM
Duane: Moved your post here: http://www.wegeners-granulomatosis.com/forum/new-member-introductions/341-what-can-i-expect.html

It'll get seen better there :)

Jack
07-22-2009, 03:32 AM
I saw another Neurologist today and he thinks my best bet for recovering the mobility in my legs is to have another go at reducing the steroids. I've already dropped from my 12mg dose down to 11mg and today dropped it back to 10mg. I'll give it a week and then go for 9 again!

Sangye
07-22-2009, 03:42 AM
That's good news! I hope the decrease goes well this time. Our bodies really do have an amazing ability to regenerate and recover.

Jack
07-25-2009, 06:27 PM
Damn! Even getting back down to my original 10mg is now giving me some grief. :(
I'm going to stick with it this time though. I'm sure its the steroids that are doing me no good in the long term. Perhaps a bit of pain now will pay off later.

Yes, I know that is the opposite to my attitude a couple of weeks ago. Well, I've changed my mind this week. OK? :rolleyes:

crackers
07-25-2009, 06:50 PM
stick with it jack.good luck.
john.

Sangye
07-25-2009, 11:51 PM
yes, i know that is the opposite to my attitude a couple of weeks ago. Well, i've changed my mind this week. Ok? :rolleyes:

okay. :D

(I'm only adding these additional words below because apparently I'm so long-winded I never knew there's a minimum message length of 10 letters.)

Doug
07-26-2009, 05:23 AM
As "they" say, "It's so crazy it might woik ["work" in Bronxese)]!" Hope so, Jack. I feel your frustration.:)

Carol
07-26-2009, 10:04 AM
Hi Jack, I'm interested that the doc thought that the pain in your legs is caused by the Pred. My docs just shrugged and didn't know what caused my legs to wobble. I thought it was the Wegs but maybe it's the pred. I have been going slowly down with my Prednisolone BUT at 8 mgs I am becoming stiff and had the funny shivers again. Thought I was going well with my reductions. I'll stay on the 8 and just see if I get any worse,maybe this body will adjust. I've had some stress lately and wasn't able to do my usual meditation - flat IPOD while I was away from home.

Jack
07-26-2009, 01:47 PM
Hi Carol, sorry to hear that you suffer from Flat Ipod. I don't think there is any medication available for this. :(

;)

I have been searching for a very long time for the reason behind the muscle wastage and pain in my legs and have been to every specialist I can think of. All the tests they do return a negative result, but the common reaction is, "Its probably the steroids". Hence my dilemma with reducing my dose - I feel better if I take more, but fear that I am doing even more damage. I'm now considering increasing my pain relief medication to something more serious than the occasional Paracetamol (helps quite a bit). This is also I route that I'm not too keen on. :(

Sangye
07-27-2009, 12:38 AM
Jack, since they've ruled out overt nerve disorders, I think it's a given that the muscle wasting is due to steroid myopathy--ie, destruction of muscle fibers. It usually affects the larger limb muscles.

This explains the weakness, but how does this cause pain? Picture bringing one leg forward in walking. To pull the weight of the leg up, forward and against gravity takes tremendous coordination and strength at the level of the muscle fibers. In myopathy, many fibers are missing or impaired, so the remaining ones have to do much more work. If enough fibers are impaired, the entire muscle might not contract properly. The end result is pain. This isn't rocket science, and I just can't believe the MDs are so confused.

When someone who's really out of shape begins exercising, they have pain because their muscle fibers have atrophied from disuse. In myopathy, some muscle fibers have atrophied and some have been destroyed, so there's something to work with if you go very slowly.

I'm gonna nag you to find a pool. You're not ready for swimming or anything close to that. You can do the smallest leg movements while standing or floating on support equipment and have no pain. It'll go a long way to building the existing muscle fibers, which should decrease pain on land. From a neurological perspective, you're rewiring/re-stimulating brain-to-muscle pathways, which often delays or prevents further degeneration of an area.

Also, on land we tend to live in very limited ranges of motion, especially with chronic illness, weakness, etc.... Being in water allows you to greatly expand those ranges, which stimulates more joint receptors and nerve endings.

I think this can help you decrease the pred and control the pain without painkillers (or at least with fewer). I don't see any way it could harm you.

Jack
07-27-2009, 02:01 AM
Oh no! Sangye is going to nag me! :eek:

What you say makes a lot of sense Sangye and I don't know why no one I have seen has tried to explain it. Your explanation of the pain mechanism fits the facts. If I try to go up a step without assistance from my hands, it is the pain that stops me as I start to exert my leg muscles. The same goes for walking, but to a lesser extent.
I'm aware of the danger of getting into a vicious circle with lack of exercise and this is one reason why I might explore the pain killer route.

I have no excuse about the use of a pool. I have mainly been put off by my own lack of confidence in my body image, but I've just looked on the Web and find that both of my local pools have disabled clubs with exclusive use.

Sangye
07-27-2009, 03:00 AM
Yeah, the body image part-- no getting around that. It was (and still is) the only thing I dread about going to pool PT. The therapy pool is in a regular gym, alongside a lap pool. So there's quite a mix-- fit people, disabled, seniors, etc.... Except for the young, fit people, ain't no one looking too good.... :D

Once I'm in the water (and I waste no time getting in there, let me tell you!), I don't feel so bad. In fact, once I'm in, my ability to move more like a regular person lifts my spirits so much that I almost stop feeling like a sick person. It's the one time I feel like I'm back in the Land of the Living. The PT always has to make me get out. I want to stay in forever, because everything is so easy in there. Even sitting on the steps takes so much less effort! :)

Doug
07-28-2009, 04:30 AM
With my "Body by Prednisone" (think Goodyear blimp....), I take some comfort in the fact that though I am a horrific sight naked (eeee!) or in a bathing suit, at least I don't have to worry about drowning: all that excess fat makes me unsinkable! Ha!:):):):) + ;{)

Jack
08-14-2009, 06:33 AM
Well, I dropped from 10mg to 9 with no ill effects so went down to 8 to see how that was. I've been feeling OK! :)

So yesterday, full of enthusiasm, I dropped to 7mg. Today, I feel crap! :(

I've just taken an extra 1mg and think I will stick with a daily intake of 8mg for a while longer. :o

Doug
08-14-2009, 06:39 AM
Good for you! I hope the 8mg works well enough you can try that 7mg again soon!:)

jola57
08-14-2009, 07:28 AM
Too fast no good. I know how much we all want to wean ourselves of off the dreaded pred but do take is sloow.

Sangye
08-14-2009, 07:41 AM
Jack, you know this already for sure, but try either staying at one level for a few weeks, or do the alternating day thing when you do drop (8 mg, 7 mg, 8 mg...). Maybe a combo of the two. But I'm still SO happy you're able to lower it!

Jack
08-14-2009, 01:52 PM
Knowing something and taking your own advice are not always the same thing! :rolleyes:

I needed a small kick in the butt to remind me to behave myself with the pred reduction and I got it. It is 4:45 in the morning at the moment and I'm watching TV, but feeling much better. Can 1mg of pred really do that? My intention now is to stick with 8mg for the next month. My agreement with my Consultant was that I would aim at getting down to 7mg by November by whatever means suited me best, so I have plenty of time.

Sangye
08-15-2009, 12:00 AM
I often give good advice. Wish I listened to myself. :o

Doug
08-15-2009, 10:35 AM
Good that you are on an upswing. here I am 4:00 in morning blogging and web surfing. I can't cuddle to my hubby of 25 years and sleep alone, all because of the pred yet being without it is unthinkable. I too hate my look, especially when I was on my cruise vacation and had to wear my fat clothes, but life goes on.


I just am not clever enough to exit and recover where I was before! I've tried sopme strategies: none worked! Anyway, for swimming exercise (think "therapy") contact the Canadian Red Cross and see what they might offer in your area for adapted aquatics. They may not have any program in Mission, but they may be able to give you more information on this type of swimming. Also, http://adaptiveaquatics.org/

jola57
08-16-2009, 01:34 AM
Both our boys went thru the CRC to get swimming ribbons to almost life gurad, and Mission swimming pool has excercise for aged etc, it's just that the water is sooo cold to me. I am going to Harrison Hotsprings for the weekend and wallow in the hot springs for two days -- oh bliss

Doug
08-16-2009, 06:28 AM
Both our boys went thru the CRC to get swimming ribbons to almost life gurad, and Mission swimming pool has excercise for aged etc, it's just that the water is sooo cold to me. I am going to Harrison Hotsprings for the weekend and wallow in the hot springs for two days -- oh bliss

Youch! I know what you mean about the cold water! Harrison Hotsprings sounds blissful! There are hot springs a couple hours and more in Wyoming (Thermopolis) and South Dakota (Hot Springs, at Evan's Plunge, a popular spring-fed swimming pool). Another possibility, motels with swimming pools that people can use at particular hours (usually early morning) their clients aren't using them. Your local CRC might know of such resources. In the meantime, enjoy Harrison Hotsprings!:o:p:)

lbrant
08-16-2009, 07:03 AM
I have question to ask all of you. My mom was diagnosed a month or so ago with Wegners. She has suffered tremendously with major muscle weakness. She finally saw her W.G. specialist and he said she had Prednisone Myopathy and that the injection that she thought was the chemo drug was actually a high dose of Prednisone to jump start her right before she left the hospital. She has been on 80 mg of prednisone every day since then and her weakness and imbalance ( to the point that she fell over twice ) has amplified each day. Has anyone here ever experienced this and from what I read it could take weeks to months to regain her muscle strength and she may actually need physical therapy. If anyone has info regarding please contact me here or directly through my email . She is 70's year old and we are also dealing with memory loss with her .

Jack
08-16-2009, 07:33 AM
I seem to have steroid induced muscle myopathy and now have difficulty with walking, but this has only occured after more than 20 years of use. As I understand it, the sudden onset type such as you describe your mother having is much more common. It is also reversible when the dose drops below some sort of undefined threshold. Sorry to be of little help, but information on the subject seems to be thin on the ground.
I have also been through several years of tests from every hospital department imaginable to rule out all the other possible causes. Has your mother had a definite diagnosis? It appears that this can only be done by a process of elimination. If this has not been done, I would be reluctant to accept a doctor's guess.
As for memory loss - Wegener's can also affect the brain, but I'm unsure of the symptoms. As with most things Wegener's related, they are probably different in every case.

Sangye
08-16-2009, 08:37 AM
I encourage you to get your mom into physical therapy as soon as possible. I don't technically have steroid myopathy, but even more than 2.5 years after stopping steroids, I have almost no muscle mass and have a very difficult time forming any. I've only recently started pool physical therapy and it's wonderful. I'm not falling anymore. I should have been put in PT way back and I wouldn't be in this shape. My Wegs specialist is the one who finally mentioned it.

lbrant
08-17-2009, 07:42 AM
Jack and Sangye thank you both for your quick replies. This is very hard for me because my parents live 4 hours away from me and my sister is dealing with most of this. to complicate things my dad has just finished radiation treatment for throat cancer. An update as of today, My mom was sent to the emergency room because she seemed to be disorientated and her blood pressure had plummeted. The ran tests and gave her some fluids and oxygen and she seemed to improve. Unfortunately this hospital does not deal with W. G so she was transported to another one . As of this moment the doctor there said that they have not found anything on the blood test and he would run a few more tests. He also told my sister that she has become deconditioned and that could be the cause of her lossing her breath when she walks. We have talked to mom about physical therapy and she is fighting it but maybe we can convince her to use a cane or walker to help her feel more secure so that she can walk more. I will relay your message about the physical therapy especially the pool type. Keeping our fingers crossed that they figure out what has caused this new development. She is also on Cyclophosphamide and Batrium along with her thyroid medication and blood pressure meds.

Sangye
08-17-2009, 08:07 AM
Why is she fighting physical therapy? I can understand fighting the drugs, procedures, etc... We ALL get pretty sick of that stuff!

I hope they figure out why her bp dove. You've got to get a Wegs specialist involved. Not just a doc who's heard of Wegs or maybe has treated a few patients with it.

Cindy M
08-17-2009, 12:02 PM
Hi Gwenllian, I noticed under your name it says Ritixumab success. On August 6th I did my first round of IV with ritixumab. I haven't really noticed any improvement. I have been experiencing a bit of an upset stomach. I was wondering how long before you felt better? Was it immediate or did it take some time? I go for my second round on August 20th.

Sangye
08-17-2009, 12:07 PM
And Gwenllian, you must have had your baby by now. Boy, girl? How did it go?

Jack
08-17-2009, 05:12 PM
I think I can understand why she is fighting physical therapy - at her age and being that unwell, she just wants to be left alone.

Sangye
08-17-2009, 11:53 PM
That makes sense. Even at my age, I often want to curl up in a corner.

Plus, a lot of people think PT is only exercise, so if they're already struggling to get around, they can't imagine doing more.

jola57
08-22-2009, 01:02 PM
My mom has some osteoporosis and for ages has been complaining about pain in all her joints and muscles. Nothing has ever been found besides just 3 to 5% osteoporosis. I think she has firbromyalgia. She has always been active in community service and still is now and then, BUT she shuffles when she walk, walks extremely slow, and hates any type of excercise. Talking to her about excercise you would think I am committing a crime. In the past year she has fallen 4 times, thankfully just suffering from some bruising. She takes insulin everyday for the past 6 months, but would do better if she was on a diet and excercise. There is just no talking to her about it or letting her know that if she picked up her feet higher she would have better ballance. Talking to our parent will always be the same as when we were little kids, so having a third person with authority might do the trick. She does listen to her doc but it lasts only for a few weeks.

Shannon T
08-22-2009, 02:00 PM
Well I had been able to reduce to 10 one day and 5 the next; however my hearing loss has increased greatly so the E,N,T put me on 80 for 3 days, 60 for 3, 40 for 3 then 20 for 3. There is a chance for some hearing to return with this big dose. Hope so. Very hard to work if I can't hear my clients or the court.

I had just started to look like myself again, w/o the round face, and to lose weight so this is depressing.

I did get hearing aides I can function with less insecurity. Asking people to repeat is boring for them I know. But now I can hear and I am so grateful.

I hate the weight gain and the rounding of the face most of all. Vanity. The rest of it I don't notice. I'm not all that emotionally consistant to begin with so I doubt I would notice mood swings as unusual. Gained about 15 pounds but I am tall so it could be worse. However I still struggle to stay in the game and resent the setbacks.

I have remained up late all my life so wouldn't notice that either. I do feel more energetic and I like that effect. As I said, it could be worse.

Jack
08-22-2009, 04:26 PM
BUT she shuffles when she walk, walks extremely slow, and hates any type of excercise. Talking to her about excercise you would think I am committing a crime ...........There is just no talking to her about it or letting her know that if she picked up her feet higher she would have better ballance.

I think you are on a loser there! That is exactly how I walk and I'm only 54 with full knowledge of the benefits of physiotherapy.

Sangye will nag me again now. :(

jola57
08-24-2009, 03:42 PM
Pick up those feet Jack, Hut 2,3 4, hut,2,3,4. If pain is causing the shuffle so be it, but if just being aftraid of falling down ...

Jack
08-24-2009, 04:28 PM
It is the pain and lack of muscle that is the problem. I move very carefully in order to avoid falls which I know my bones could not take.

Sangye
08-24-2009, 11:35 PM
(Hey! I just noticed a response I posted has disappeared! It was funny, too.)

Minus the funny part : it was a reminder to take advantage of what you've got when you've got it. Jack, you have a pool you can use now, but that may not be true in the future. Anything can happen. A couple public pools here have been closed for a year while they do major repairs. Or you could get sidetracked and not be able to get there.

Exercising in the pool will go a long way to helping you keep some bone density.

So along the lines of what Jolanta said, "Splash, 2,3,4, Splash,2,3,4"

coffeelover
08-25-2009, 11:01 AM
Lets give Jack some ideas on an exercise that he may like. So far....he hasn't liked what he has been asked to do. Is water a like or dislike?

How about getting a WII and playing tennis or bowling? I like that and it doesn't seem like exercise. AND if you play against yourself then there is no competition either.....that is a plus for me.

LIsa Wnat to have coffee again Jack?

Jack
08-25-2009, 05:32 PM
I'm not feeling very receptive this morning, so perhaps i should not post. It is starting out bad today and I just want to sit and be left alone. :(

Things will improve as the day goes on.

Sangye
08-25-2009, 11:34 PM
As one of my old Arizona friends once told me, "You go tuck your head under your wing and rest. You'll feel better soon." Take care, Jack. :)

capabayan
08-26-2009, 12:09 AM
How about getting a WII and playing tennis or bowling? I like that and it doesn't seem like exercise. AND if you play against yourself then there is no competition either.....that is a plus for me.

Speaking of Wii's... has anyone here tried the Wii Fit? We are trying to save up to maybe get ourselves a Wii for Christmas and I have been eyeing the Fit board & stuff. Is it worth it??

Jack
08-26-2009, 12:32 AM
My daughters saved up and bought themselves a Wii and also the Wii Fit game. They are 13 and 18 years old and the novelty does not seem to have worn off! They play with it quite often and say it is good fun. From what I can make out, there are a good range of activities ranging from easy to challenging.

Although I spend a good deal of time on the computer, I can't stand computer games and have a life long disinterest in sport so it has little appeal to me.

By the way, after treating myself to a lazy day, I'm feeling much better than I did this morning. :)

DuaneHart
08-26-2009, 01:26 AM
We got ourselves a Wii and the Wii Fit and found it to be great! There is yoga excercises that I really like, stepping, hula hoop--just alot of fun things to do. Plus with the balance board it tracks your weight and how often you use it, etc. I thik anything you can do to get yourself moving is a plus. Also, Jack, its not really like a computer game since your are actually very active and moving while using it.

Shannon T
08-26-2009, 02:36 AM
What is a balance board? I go to a PHD in Houston for balance lessons and one of the things that I do is I walk on a board with eight springs. Similar? So the Wii Fit is a good idea? My balance is poor but at home noone will care if I look silly.

General inquiry: Has anyone had hearing loss that continues to change although on pred and chemo? My hearing aides don't seem to help as I thought they would and I wonder if that might be due to continuing hearing change? Has anyone had hearing significantly restored? That would be nice.

Sangye
08-26-2009, 02:41 AM
Shannon, being in the pool has helped me with balance so much. I was falling all the time before. One of the simplest things you can do (in the shallow end, of course), is just walk forwards, backwards and sideways. You can also stand on one foot to stimulate the nerve endings for balance. Very easy in the pool and it does carry over to land quite well.

capabayan
08-26-2009, 02:42 AM
General inquiry: Has anyone had hearing loss that continues to change although on pred and chemo? My hearing aides don't seem to help as I thought they would and I wonder if that might be due to continuing hearing change? Has anyone had hearing significantly restored? That would be nice.

Wow... that would WONDERFUL if it did come back! My hearing was the first thing to be affected and with the hearing loss came severe constant ringing in the ears. Unfortunately the ringing is actually worse than the loss sometimes, since it masks whatever I might be able to hear otherwise. It also means hearing aids wouldn't do a thing for me (most likely).
I have had one ear regain a small amount of hearing since I've been on the meds... nothing drastic though.

Sangye
08-26-2009, 02:49 AM
I think I've heard some people say some of their hearing returned. I guess it would depend on the extent of damage and the reason for the hearing impairment. I don't have ear involvement, but I notice when the Wegs is a little fired up (even just for one day) my ears feel plugged, like they need to pop and can't. I assume that's just a mild inflammatory response. Maybe that's the type that improves.

Shannon T
08-26-2009, 02:49 AM
How do you manage with the hearing loss? Have you learned to read lips? How long have your ears been impaired? My ENT just put me on a great big dose of pred to see if I could get some improvement in the right ear which has become more damaged within the last month or so. 80 - 3 days, 60 3 day, 40 for 3, 20 for 3. I had been down to 10 a day before this.

Shannon T
08-26-2009, 02:53 AM
Thanks for the suggestions regarding balance and the pool. I will stay in the shallow end. I am the person who had the near drowining incident in the deep end. But I will do whatever it takes to get balance. I hate the cane.

capabayan
08-26-2009, 02:55 AM
Shannon - I've never been able to read lips!! I guess I've just gotten used to not hearing *everything* in a conversation... being able to pick out the important points more or less and figure things out from context. Of course my closer friends/family know the trouble I have and I do tend to ask them to repeat themselves more often than I would someone who doesn't really know what's going on with the WG.

crackers
08-26-2009, 08:45 AM
i've had hearing problems for the last few years.if i'm watching tv i only understand about 50% of what is said,so i've invested in a good set of headphones which has solved that problem.if somebody speaks to me with their back turned i ask them to turn around and repeat it.my wife reckons i'm lip reading although i've never learned it.maybe my eyes are compensating for my ears.
john.

Doug
08-26-2009, 12:18 PM
i've had hearing problems for the last few years.if i'm watching tv i only understand about 50% of what is said,so i've invested in a good set of headphones which has solved that problem.if somebody speaks to me with their back turned i ask them to turn around and repeat it.my wife reckons i'm lip reading although i've never learned it.maybe my eyes are compensating for my ears.
john.

Don't you have Closed Captioning in the UK? It's great for hearing impaired people, and all US televisions made after a certain date (several years ago) come with the capability. The technology is out there. If not, it's something to lobby for in the UK or EU, whichever parliament is concerned with human rights or handicap issues.

jola57
08-26-2009, 01:34 PM
I have simply adjusted to the fact that my hearing is not that good. The ringing is worse of course when all is quiet, but with ambien noise I hardly hear it. On note, when I burp (yes burp) it clears for that split second, so i assume it is good news and only inner ear swelling is what creats the hearing loss. As far as hearing aids, I tested one and it does help both the hearing loss and the ringing. Apparently the aids compensate for the ringing by "distributing" it between the ears thus creating a "vacuum" which in turn truns"off" the ringing. So Shannon try hearing aids, I decided not to get one since I seem to be doing OK without them and only have a real hard time where there is a lot of ambient noise like a noisy restaurant or a ball game.

fester500
08-26-2009, 08:24 PM
Hello, everyone,

I was wondering how people's hearing loss first presented? I've been getting pain in my right ear several times a week since September (when this current flare first started). The pain affects both the inside and outside of my right ear. Sometimes my hearing on that side is muffled and noises like me crunching on some food, seem especially loud. The ear also 'pops' a lot, like I'm on an aeroplane, but never actually clears.

I've had hearing tests and eardrum-pressure tests, which were all fine. The only finding by an ear-nose-throat specialist was that my right ear drum is clouded. All my major nasal symptoms (bleeds and crusting etc.) are on the right-hand-side, too.

Does this sound familiar to anyone?!

Thanks!

Jack
08-26-2009, 08:37 PM
Yes, all sounds very familiar and it was only when I had an MRI scan that they confirmed that the problem was caused by a build up of fluid in the ear. I have decided to give grommets a try to relieve the pressure, but if that fails I'll get a hearing aid.
I'm waiting for the date of my operation, but it is considered to be low priority.

fester500
08-26-2009, 09:44 PM
Thanks for the reply! Do you also have nasal symptoms on that side? Or are both your ears affected?

My ENT doctor said that he doesn't like using grommets on WG patients as they end up with 'constant drainage'. I guess it depends on their different experiences.

I think I'll have to try and get an MRI on a day when the symptoms are worse.

Jack
08-26-2009, 10:10 PM
My first visit to ENT over this problem ended as yours did with nothing much found. I had the MRI scan as part of another investigation and this showed up the problem. Also, it has now escalated and is apparent on hearing tests.
I have had a huge amount of trouble with nose, sinus and throat problems in the past, all associated with Wegener's so the ear trouble is not unexpected. Previously, my right sinus was slightly the worst and the left side of my throat.

I'm not expecting great results from the grommets, but they are easily reversible so it has got to be worth a try.

jola57
08-27-2009, 03:45 PM
Jack, my hearing test last year and followup this year showed that I have 35% hearing in my left ear and 75% in my right. I honestly can live quite well with this, and my job is 90% listening to people on the phone and at meetings. Gromets are fine but with the drainage and most importantly, having to be very careful of water getting in, I totaly decided against them.

MCC
01-14-2010, 06:50 PM
Can I ask how soon you all noticed symptoms such as weight gain and moon face on prednisone?
I've been on 50mg for a week and so far nothing major.

And regarding the weight gain, from what I read I was under the impression it was because of the increased appetite. Are some of you saying prednisone has made you gain weight without eating more?

Cindy M
01-14-2010, 07:34 PM
I think it took about a month before I notice weigth gain, but I can't quite remember. I do know that my appetite increased. I was overweight and struggling with weight when this disease struck. I do tend to eat out of stress, depression, etc. I believe that alot of my weight gain is because of not trying to control it, feeling sorry for myself and allowing that to be the permission to over eat. Wish I could do it all over again and be a little smarter. It's so much easier putting the weight on as opposed to taking it off. The moon face took a bit longer. I thought at first that maybe I might be lucky and not get the moon face, but unfortunately it does come. There is some weight increase just because of the predisone, making you retain more.

capabayan
01-14-2010, 07:45 PM
Yeah the weight gain and moon face are not immediate but they are imminent. Not only does prednisone cause the aformentioned increased appetite, it also causes water/fluid retention.
It also doesn't help that, if you're on pred for a while, you probably have some health issues that prevent you from exercising regularly (no energy, etc).

Unfortunately, the weight gain is inevitable. But if you can try to exercise regularly - even just walking for 10 minutes a day at the beginning - it will be a big help in staving off some of that extra gain.

jola57
01-14-2010, 10:17 PM
Hi Mandy, I guess it took about 2 to 3 months for me, but I was regular weight at the time and took only 25mg. Now I am 210lb and can't shake it. This is, for me, one of the worst symptoms but you have to get used to it. It took me 3 years to accept it and not be embarassed. I used to shun my friends because of the moon face and weight but this christmas I made an effort and invited some friends for supper. So I'm out of the closet so to speak. My face has a tendency to round anyway so the moonface and prednisone roll (on back of neck) is horrible. You can see the before and after in my profile. Don't be dishartened better be pain free than pretty.

elephant
01-14-2010, 11:21 PM
I have been on Prednisone on/off my whole life ( 30 years). In the last 18 months I have been on Prednisone 60 mg ( flare's and such), I noticed that after a month my face got rounder. The weight gain is different for everyone. I gained 10 pounds, but I did walk , even walked in my house ( going to the dining room to the family room to the kitchen) and then started slowly on the treadmill. I did eat like a horse. I seem to have a big appetite and didn't gain much weight. I met a couple of people who said they lost weight on Prednisone! Wow!

onatreetop
01-14-2010, 11:48 PM
I have been taking it for 7 monthes and have gained 25 pounds to date. I have noticed that if I exercise 20-30 minutes a day I dont gain. If I miss I gain. The food craving is bad but I am a stress and evening eater to so none of that helps me. I have also noticed that this moon face goes up and down with the right amount of water intake 3 -4 qts water and the exercise. If Idont workup a really good sweat once a day the face is so moon like it is pain. So sweat I do and it helps release more of the leftover toxin I beleive. Pred does stink. It is like a train to fast then to slow and bump along the way. But if it is going to save my life I am on for the ride!
I was checking the most common side effects out a while ago and they were the neck/ throat / top of shoulders, behind the neck like a hump, face and abs. I have this lump where my collar bones met under the front of my neck that I never had even when prego with the twins and heavier!! They called them fat pads! Lovely pred !!! Like I need more padding!!! I might look like a couch in five years if i am not careful.

Carol
01-15-2010, 01:56 PM
I lost my moon face at between 6 and 7 mgs. The pred made me ravenous. I would start to eat my food before my husband got to the table, just couldn't help myself and then I got into the habit of eating quickly. I also craved carbohydrates. I found that if I had homemade cake - no frosting - at least I knew what I was eating and I wouldn't over eat it as opposed to chocolate. I'm now well so it's all OK. All I need is the self discipline - now Christmas is over I can start to think straight again. It's high summer in Australia, the prawns are running so it's late nights chasing them, and the veggie patch is looking good, and no excuse for not exercising after this last lot of vistors go home.
In 3 months I'm to go down to ZERO Pred - quite scared about that. Will wait until we have done our big trip to Las Vagas, an Alaskan cruise and then 3 weeks of driving south from Seattle to Los Angeles via National Parks etc.. Very excited about our trip and driving on the WRONG SIDE of the road over there.
Regards Carol

MCC
01-15-2010, 02:34 PM
Thanks for your replies. Seems so minor when faced with a serious illness, but I am dreading the moonface.

jola57
01-15-2010, 03:00 PM
Ah moonface thau name is vanity. I can laugh now but just a few months ago I could cry. Mandy, I am glad you found us and we can share our pain. The moon face is inevitable, I dont think any of us got away without having it. It is the most dreaded side effect of the prednisone. Just remember, everyone thinks that overweight people are funny, so don't mislead them and get your humor back and out front. :)

MCC
01-15-2010, 03:25 PM
:D Thanks.

Not doing so well on trying not too eat too much- just had vegan walnut cake! :)

jola57
01-15-2010, 03:30 PM
If you read some of my older posts ( not necessary and probably hard to find) you would see how one sandwich ended up being 2 or 3. Hunger was my best friend and did not leave my side. I still remember how good it felt to eat scrumptious food and how wonderful everything tasted. I ate foods I always hated like cooked spinach

Carol
01-15-2010, 03:31 PM
Having a moon face didn't worry me too much but of course I celebrated when it went. I made the decision to bless my drugs, that I was so lucky to be in a country where the drugs were available and that they were making me better. People you know, know that you are sick so don't pass judgemnts on you and the ones you don't know, it doesn't matter about. I just went about my life not worrying about my face. My skin is so good now even tho I have lost the moonface. It certainly didn't seem to long term affect on my skin.In fact everyone says my skin looks fantastic.
Each time I take my tablets I give gratitude to them and the doctors who have prescribed them. It's an awfull illness but there can be huge improvements over time and the drugs are the basis in this recovery.
Regards Carol - Australia

jola57
01-15-2010, 03:34 PM
I totally agree

Jack
01-15-2010, 05:57 PM
The moon face effect is no joke. I thought that I was completely lacking in vanity, but I found it upsetting to catch my reflection and not recognise myself!

Sangye
01-15-2010, 10:47 PM
The moon face really got me, but it mostly disappeared at lower doses. (My face still swells when I'm stressed ever since pred--even for the 2.5 yrs I was off it). It's the moon butt that gets me down the most.

elephant
01-15-2010, 10:52 PM
When I had my moonface, people thought I was in my 20's! I wanted to kiss every toe on their body. I didn't because of my immune system being suppressed. Recently my sister said," you don't look so young anymore!' Oh well.

onatreetop
01-15-2010, 11:44 PM
My face like the moon is quarter full in the morning , half in the afternoon and than brillantly full and can light the night sky by the pm!!!! I have found , unless in bad pain, that I laugh with the people around me or that notice. Not many of my friends have actually said anything. they wont talk about it unless I do but.........................i have a laugh it off attitude or make jokes about it. I am also known as " pred head" with my closer friends. Only my doc friends or wives notice it change most of the time. I gauge the swelling by the lack of wrinkles around my eyes. And how low my chin hangs down!!!

Doug
01-16-2010, 03:03 AM
When I had my moonface, people thought I was in my 20's! I wanted to kiss every toe on their body. I didn't because of my immune system being suppressed. Recently my sister said," you don't look so young anymore!' Oh well.

Nothing like a sibling to bring us down to earth! Ha!

I had the fatty hump on the back of my neck as well as the moonface. It was discouraging, but, as I became more familiar with the side effects of Prednisone through study on the internet and follow-up questions with my doctors, I took an attitude less hard on myself. I admit to fighting vanity, though!

MCC
01-18-2010, 03:46 AM
I'm so hungry Ive barely been able to sleep.

Have seen that dandelion tea can help with fluid retention- so might help the moon face. As can a low sodium diet and drinking lots of water so I will give that a go. Also apparently caffiene and lemon in water can help.

pberggren1
01-18-2010, 08:01 AM
I would stay away from caffiene Mandy. It constricts the blood vessels. Us Weggies don't need that.

Jack
01-18-2010, 08:19 AM
I need it.

It is the only thing that keeps me standing up!

(but I do try to keep it down to a few cups a day ;) )

Sangye
01-18-2010, 09:07 AM
Mandy, I would definitely avoid or limit your caffeine intake as much as possible. There's really no way to avoid the moon face and it will disappear as you lower the pred dosage. But adding caffeine now will add to the long-term adrenal depletion caused by pred. (Caffeine is also an appetite stimulant-- 'nuff said.) When you take pred, it depletes the adrenals terribly. This isn't just a temporary side effect of the drug. It causes long-lasting (and often irreversible) depletion. The more you beat on your adrenals while on pred, the worse off you'll be in the long run.

MCC
01-18-2010, 03:29 PM
Oh no, I shall try and cut down then. I only really have 1-2 cups a day. To be honest I haven't been told to avoid anything food or drink wise- even alcohol, and I even asked if I should. Fortunately I am vegan so I think I have a reasonably healthy diet. Were you told to avoid certain things?

How soon did you all start having prednisone reduced? I am going down from 50g to 40g today. I was only on 50g for a 1.5 weeks, and did not have to have the pulse IV.

Symptoms wise from the prednisone I feel really wired. I couldn't sleep last night and I kept thinking about food. My weight hasn't gone up yet, and I have slight moon face.

elephant
01-18-2010, 11:28 PM
Mandy, the rheumatologist usually reduce the prednisone like this...50 mg for two weeks, 40 mg for two weeks, 30 mg for two weeks, 25 mg for two weeks, 20 mg for two weeks, 17 1/2 mg for two weeks, 15 mg for two weeks, 12 1/2 mg for two weeks, 10 mg for a month, then it goes down slowly....like 9 mg for one month and keep decreasing it one mg each month and some are decreasing it even slower....like 9 1/2 mg for a month and then 9 mg for a month. Everyone is different. Some Rheumatologist do the taper different from this one. This is just a example. Hope this makes sense.
Actually my rheumatologist had me on 50 mg for a month a first and then did the above....
Mandy that is normal for you to stay up at night with that high dose of Prednisone. I thought about food 24/7! I still think about food quite often. I watched tv at night. I felt like I could not read, too hyper!

Jack
01-18-2010, 11:45 PM
Our bodies produces the equivalent of 5 - 10 mg of pred naturally and it is this production that shuts down and needs time to recover as you lower your dose of pills. With some people (probably me) the natural production can never restart and so we are stuck with taking 5 - 10mg for life.

moyan
01-19-2010, 03:09 AM
Hi somebody who knows (and all of course): Am I right in assuming not only does the skin get thin with pred, but also the membrane(?) that keeps the blood in the veins? My arms look like a pet chicken has hacked all over.

elephant
01-19-2010, 06:00 AM
Prednisone does havoc to the whole body. It treats the inflammation, but somehow makes a mess of our tissues/bones. Yes it does thin the skin, as a RN I have seen this with all patients on long term prednisone. I would have to go back and read my medical books to see what prednisone does at the cellular level.

moyan
01-19-2010, 06:11 AM
Such a little touch makes such a big mark! Thanks, el

lteague
01-19-2010, 10:23 AM
Hi everyone, It's been most helpful in reading about others who have WG. I'm currently on the Prednisone tapering roller coaster. LOL I'm grateful to be alive and on the Prednisone/Cytoxan ride. I've got the moonface, thicker around the mid section, little hump, mood swings, etc. I remember telling my Pulmonologist on my first follow up visit after hospitalization. It was a good thing I was somewhat large to begin with and hadn't started that major diet for my 30 year class reunion next summer so no one really notices the physical changes as for the mood swings they were already being experienced due to menopause. I find a sense of humor helps plus a very supportive husband.

elephant
01-19-2010, 12:03 PM
Laura, how long have you been on Prednisone and Cytoxan? I feel your pain. I have been up and down with prednisone like a wild roller coaster ride too.

lteague
01-20-2010, 04:30 AM
Hi Elephant, I've been on these medications since end of Sept 09. Got lab results today which are good. Get to taper Prednisone again next week. HOORAY! Another wild ride :)
and I don't have to visit an amusement park LOL. My daughter got to see the craziness when we visited our home state of Kentucky at Christmas. My hubby had warned her and other family members prior to our visit LOL
How long have u been diagnosed with WG?

elephant
01-20-2010, 04:38 AM
I was Diagnosed July 2008, but had it for over 30 years. Misdiagnosed but was on immunosupressant drugs on/off because they thought at first I had arthritis and then later developed kidney failure and that put me on high dose of Prednisone and cyclosporine. Now I am on cyclosporine, cellcept and prednisone. Tapering off the prednisone, but will see. My sinus does not like it.

Sangye
01-20-2010, 10:16 AM
Elephant, every time I think of you being misdiagnosed all those years, I think how amazing it is that you survived it. You're a walking miracle.

elephant
01-20-2010, 11:44 AM
I am a walking miracle and just happened to be on drugs to suppress the immune system to probably keep the disease a little quiet. Even when I was on Cyclosporine and Prednisone, the WG was popping up but very sneaky quiet but I knew something wasn't right. I did blame it on the meds. Just look at all the side effects. Geez so confusing and the doctors thought I was nuts. Anyways, I have to count my blessings. Today I was able to walk, that's another blessing, eat...thats another blessing, sleep.... thats a double scoop blessing, breath...that is the cherry on top of that blessing... have more...but I would put you all to sleep...
Sangye, your a walking miracle too. All those blood clots and walking around like that. WOW! Life is full of miracles..

moyan
01-20-2010, 01:07 PM
!!! All I can say!

Sangye
01-20-2010, 03:15 PM
Yeah, I'm definitely a walking miracle. Lungs hemorrhaging for 3 months, tons of blood clots, elevated intracranial pressure, more lungs hemorrhaging, and way too many other disasters to list!

coffeelover
01-21-2010, 02:08 PM
YOu walking miracles are truely amazing! Your inspiration and determination continue to enlighten my days. Keep up your good work!

moyan
01-23-2010, 07:02 AM
Hi, it makes mer angry to see how other docs taper preds! I was on 60 mg for at least half a year and then down 10 every 3 months. Asked doc to check thyroid gland, collar hurt, LOL. Now I know better and will teach my doc how to taper pred.
Also, by chance, landed on an Alzheimer test and found that there are
many similarities between pred and Alz

elephant
01-23-2010, 09:47 AM
Sorry to hear that Moyan. Make sure you get your eye's checked out. I have glaucoma now because of the prednisone.

Doug
01-23-2010, 11:21 AM
And I was dropped once a month, same levels you were on, moyan. It would be interesting to be in on the discussions doctors have with other doctors, have the same conversations they have with specialists, wouldn't it!? The reasons for such variation have to do with each of our degrees of WG, but it would be interesting nonetheless to know what determines why one weggie gets one level of treatment while another gets another level.

MCC
01-25-2010, 02:17 PM
Mandy, the rheumatologist usually reduce the prednisone like this...50 mg for two weeks, 40 mg for two weeks, 30 mg for two weeks, 25 mg for two weeks, 20 mg for two weeks, 17 1/2 mg for two weeks, 15 mg for two weeks, 12 1/2 mg for two weeks, 10 mg for a month, then it goes down slowly....like 9 mg for one month and keep decreasing it one mg each month and some are decreasing it even slower....like 9 1/2 mg for a month and then 9 mg for a month. Everyone is different. Some Rheumatologist do the taper different from this one. This is just a example. Hope this makes sense.
Actually my rheumatologist had me on 50 mg for a month a first and then did the above....
Mandy that is normal for you to stay up at night with that high dose of Prednisone. I thought about food 24/7! I still think about food quite often. I watched tv at night. I felt like I could not read, too hyper!

Thanks for this. I'm down to 25mg of prednisone now.

I am very hyper, I feel like I have to be doing something all the time- even cleaning! My boyfriend doesn't mind the food obsession too much as I he gets to try my baking. I made some bread yesterday for the first time which turned out pretty well.

Also sleep only 6 hours a night, but it's not making a difference to me during the day.

Forgot to add I felt really full of anxiety at the weekend. Heart pounding, and felt stressed and troubled for no particular reason.

onatreetop
01-25-2010, 03:19 PM
I am holding at 30mgs since right after xmas. My blood prressure is ok but my pulse not okay.I had to start taking valuim with the pred. I take 10mgs at a time 6am, 11am and between 3 and 4pm. If I awit longer I dont sleep much. 2mgs of valuim with each dose. I am not boucing off the walls anymore. But when it wears off I can feel it hard. headache shaking fun fun!!! Red swollem face and neck!! Pred head.

renidrag
01-25-2010, 09:00 PM
Has anyone gone from 10 mgs prednisone to 5mgs for two weeks and the 2.5 for two weeks then done? This seems to be a lot faster than most I have read in this thread.
By the way I am still waiting for the 65 pounds I gained to start falling off.
Dale

Jack
01-25-2010, 09:53 PM
I could not get from 10 to 7 over 3 months. I tried several times. :(
If you have been on 10 or more for a significant time, dropping it to nothing over a 4 week period is asking for serious trouble.

elephant
01-25-2010, 10:46 PM
With the WG disease it seems even more difficult to get off the prednisone. Last year I tapered way to fast and had to keep bumping it back up. When I went to 10 mg to 7 1/2 mg of prednisone, I noticed a huge difference and had to go back up to 10.
Reindrag, if you can walk start walking... start off slow...15 minute walk every day....then increase 20 min walk a day...this is a less invasive way to exercise without pulling something. I studied obesity and eating disorders back in college....research shows that incorporating exercise everyday will maintain weight and weight loss. But with Wegeners we have to listen to our body and if we are tired then we stop and rest. Actually if your able to walk...you will be ok walking..
Prednisone increase's the Blood Pressure and Pulse ...I am on a beta blocker to slow my heart rate....

Sangye
01-26-2010, 03:02 AM
Mandy--your symptoms are typical of pred. Like Elephant says, you may have to take meds if you have high bp. You also might need meds for anxiety and/or depression. Very typical result of pred.

As hard as it is, do your best to curb your eating. The weight doesn't start to pile on for a couple weeks and then it usually increases quite fast. Weight gained by pred is not easily lost. I used to be able to increase my exercise and drop weight (not easily, but doable with sustained effort). I can't budge more than 5 lbs with pred. I was off it for 2.5 yrs and lost only 10 lbs--mostly the initial water loss. This happens because pred changes the underlying hormone balance in the body, turning it into a fat-making machine basically. Pred stimulates fat accumulation and causes muscle mass to be lost.

Sangye
01-26-2010, 03:11 AM
Dale,
Yeah, that is WAY too fast. Quite dangerous. You may be able to get off pred altogether, but you have to take your time once you get under 10 mg. Elephant's recommended taper is right on, according to my Wegs doc. Alternating days seems nutty because we don't do that with other drugs, but it works great with pred.

My Wegs doc said once you're at 5 mg, the best way to drop is by 1mg per month. No faster than that, but slower is okay.

MCC
02-05-2010, 11:37 AM
I've been in hospital this morning for cyclo and discovered I've put on 2kg in a week! :( I've been on prednisone for 4 weeks now, and this is the first weight gain, but it's a lot for a week!

Am upset about this as I am dreading my weight going up and up uncontrollably. I'm down to 20mg prednisone now from 50mg, but that is still a relatively high dose.

I think I will try to start excercising more and try to resist the hunger, but the nurse said I will basically put on weigh whatever I do.

elephant
02-05-2010, 12:08 PM
Mandycc, your not going to get bigger and bigger and bigger. As long as you eat healthy like fresh fruit and vegetables, lean meats, yogurt, high fiber foods that will fill you up. Exercise is good, but try to gage it to how you feel that day. As the prednisone is reduced it will come off slowly. Everyone reacts differently to Prednisone, I have been on high doses of prednisone many times and gained 10 pounds ( I was on 60mg of pred then weaned down then had to go back up again).
Prednisone can just take over your mind and you feel like eating everything in site. It's frustrating, I know. Being on Prednisone makes you more anxious and nervous too.
Just start out tomorrow as a new day. ;)

MCC
02-05-2010, 12:20 PM
Thank you, and I am sorry to whinge about something so relatively silly- I KNOW my health is more important that putting on weight, but although I feel quite well with the Wegener's I am finding it increasingly hard to come to terms with all these changes, drugs and hospital visits. I actually cried after I was weighed! I guess I am all over the place with emotions being on prednisone.

snooz23
02-05-2010, 01:01 PM
Just for another perspective...I have been on various doses of pred. for the last 8 months and have not gained a pound....actually I have lost quite a bit. I think the stress, anxiety and depression just override everything for me and I just have no desire to eat. And I have also radically changed my diet, because my integrative med. doc. dx w/ celiac disease (no more wheat, gluten,etc), so I have changed my eating habits.

jola57
02-07-2010, 05:13 PM
Mandy we all go thru the weight gain and we all moan about it. Welcome to the family. Take hart that it is temporary and when you taper down so will the weight - slowly but surely.

coffeelover
02-09-2010, 08:30 AM
I was on pred for over a year and recently took my (hopefully) last dose. So far so good....but I see a mayo doc next week, so time will tell. Anyway, I too was freaking out about the weight gain, but worked diligently on eating the correct foods and exercising when I felt good enough. I have been off pred for over a week and feel some disappointment in not losing the weight I gained while on pred yet, but I know that I am so impatient and tend to be a perfectionist.
I am still eating the correct diet, exercising regularily and continuing to remind myself where I have been and trying not to push myself to hard. I intend on losing some of the weight, but If I don't I have decided that I DO like the way I am and if I do have to go back on pred, then so be it.
BTW-my last 10 mgs of pred, I went down 2 and 1/2 by the week until I was at zero. Workded ok for me.
lisa Coffeelover

Ivelisse
02-09-2010, 09:03 AM
I totally understand.
I'm only 17 &since I've had Wegners (15y.o)my steriods have been high then they bring them down and then right back up if I get sick again.
It's extremely hard,I have self esteem issues &have fallen into serious depression because of my weight.I've gained over 50 pounds in a year and half.I was really skinny before I got diagnosed &now my face is puffy &really round and i'm overweight for my age. I'm always hungry,it's crazyy.&My mood swings are terrible,I'm fine one minute &the next no one can speak to me. It's really annoying,right now I'm on 10mg of Medrol and I can't wait to go back to the Rheum Doctor's to see if they can bring them down.

elephant
02-09-2010, 09:41 AM
Hi Ivelisse, I was on high doses of Prednisone when I was a teenager too. I understand what you are going through. It is tough because even though you have this Wegener's disease and know it can kill you if you don't take your medicine..... you still want to fit in with everyone else. The weight will come off once the prednisone is reduced. If your able to exercise, I would start walking everyday a little bit at a time. This will help your depression and you will burn some calories. It is very Normal for you to be moody and crazy! We all understand. I am still on prednisone but when I go up to a higher dose of prednisone people know!
Ivelisse, are you on other medicines for your Wegeners like methotrexate, cellcept , imuran, cytoxan ...
Ivelisse hope you feel better...it will get better ...Really...

Ivelisse
02-09-2010, 04:30 PM
Thanks.
I'm on Myfortic for my Wegners but I have other complications like rightside heart ventricular failure and a pacemaker &defibrillator.&Kidney failure due to the Wegners as well so I take about 25 meds a day..

elephant
02-09-2010, 10:41 PM
Ivelisse, at age 15 I developed kidney failure. At that time my creatine was a 2.0 and stayed there for a while and then creeped up slowly and finally got a kidney transplant... my brother gave me.
Ivelisse, I guessing the Wegeners affected your heart. I get my heart check out yearly. I have always had chest pain and heart palpitations. So I am on blood pressure medicine to decrease the heart rate as well.
I am on cellcept and from what I know myfortic is the same but a coated version.
Ivelisse, are you on a waiting list for kidney transplant?

MCC
02-10-2010, 06:53 AM
I totally understand.
I'm only 17 &since I've had Wegners (15y.o)my steriods have been high then they bring them down and then right back up if I get sick again.
It's extremely hard,I have self esteem issues &have fallen into serious depression because of my weight.I've gained over 50 pounds in a year and half.I was really skinny before I got diagnosed &now my face is puffy &really round and i'm overweight for my age. I'm always hungry,it's crazyy.&My mood swings are terrible,I'm fine one minute &the next no one can speak to me. It's really annoying,right now I'm on 10mg of Medrol and I can't wait to go back to the Rheum Doctor's to see if they can bring them down.

I am sorry about your depression hun, it must be very hard being at school too and dealing with Wegener's so young. What dosage of prednisone are you on now?

I am grateful for the understanding of everyone on this forum x

MCC
02-10-2010, 06:56 AM
Since my dosage of prednisone has gone done to 20mg I have started to get a runny nose in the last few days. At first I thought I was getting a cold, but now I'm wondering if it is a return of my symptoms, as I had a constant runny nose through the Wegener's affecting my sinuses.

I am seeing my doctor tomorrow for a check up so I will speak to him, but in the meantime do you think a return of symptoms is a sign that the pred dose is too low to work? Did anyone else find this?

Jack
02-10-2010, 08:30 AM
After having severe sinus and nose involvement in the early days, all the symptoms disappeared when I was taking cyclophosphamide and pred. When I was in remission and taking milder drugs (Myfortic and pred.) I had a slightly runny nose and had to blow it several times a day, but this was nothing at all by comparison to the full blown Wegs condition.

elephant
02-10-2010, 08:35 AM
Mandy it could be a cold or sinus infection. Just keep an eye on it. It is so annoying isn't it! Be persistant! I tell myself this all the time!

Sangye
02-10-2010, 09:19 AM
I'm always suspicious of a return of any indicative symptoms when lowering pred.

MCC
02-10-2010, 09:35 AM
Thanks for your replies. I'm thinking it could be a return of symptoms because it's been like this for 3-4 days without developing into a full blown cold which I would have expected to have happened by now. I guess I'll see what my Doctor says tomorrow.

Lets hope it's just a mild cold!

MCC
02-11-2010, 02:39 PM
My boyfriend has got a cold now, so am assuming that is what mine is. My doctor doesn't seemed concerned anyway, he says 5 weeks into my treatment I am doing well - white cell count has gone down slightly and my kidney function is good...so it is looking likely I will only need 6 treatments of cyclo.
And I have lost a kg! But they were different scales.

elephant
02-11-2010, 10:37 PM
Good for you Mandy. Hang in there. Probably is a cold. Hope you feel better soon.

DuaneHart
02-15-2010, 01:11 PM
We have had the WII Fit for almost a year and now just bought the WII Fit Plus and really enjoy it. The Wii Fit Plus has alot more aerobic things to do, plus it asks questions after some of the activities so it also works your brain. There is one game where you stand on the balance board and you have to move your hips to the left, right, front or back to break balloons that have numbers on them in order for them to add up to a certain number that shows up on the screen. Really makes you think and is a fun way to really get you moving! I also need to be careful of falling but I have no fears while using the Wii. It is definately worth the money!

Sangye
02-15-2010, 01:15 PM
How are you doing these days, Duane?

elephant
02-15-2010, 10:53 PM
That is great Duane! My kids love the WII too. I always believe in finding a activity that you enjoy! :)

DuaneHart
02-16-2010, 02:40 AM
I'm doing okay. I am on the pred taper- down to 12.5 mg for next 4 weeks then down to 10. I've just started getting another sinus infection so am going to the dr today. I'm still waiting for the day that I will feel good.

Sangye
02-16-2010, 04:41 AM
I'm glad to see you're doing the taper slowly. I hope you start feeling good any day now. Today, for example. :D

MCC
02-22-2010, 12:42 PM
I wondered how long people's prednisone side effects continued with a lowering of the dosage? I am now on 15mg and my doctor says that the hunger and moon face should get no worse only better as I've come down from originally being on 60mg. I am less hungry, but still hungry!

Sangye
02-22-2010, 12:44 PM
It's very individual (aren't you sick of hearing that by now?). The hunger lessens, but maybe not that much once you get below 20 mg. At 4mg I have to control what I eat. My appetite is about 30% more than when I was off pred.

MCC
02-22-2010, 12:46 PM
Thanks for a very quick reply! I find really I am never not hungry, but it is not such a raging hunger now and I can put up with it to an extent. I'd love to enter an all you can eat contest, I'd win hands down.

Sangye
02-22-2010, 12:48 PM
Yeah, that's how I feel. It's not torture to avoid overeating, but it does require my constant attention.

elephant
02-22-2010, 10:25 PM
I have been on and off prednisone for 30 years. There was a 10 year period when I was not on Prednisone and I still had a huge appetite. Thank goodness I kept active. Actually too active walking over 40 miles a week at a fast pace. That was the only way to keep my weight stable. People always told me," You eat like a man!" I am currently on 10 mg of Prednisone and still like to eat...I do walk about 20 miles a week. The last two weeks I have not exercised, due to cold that my whole family has. I know it is a cold because it is thick yellow on/off with some blood ( too much blowing), my daughter and son have the same thing. My husband is getting over a cold/pneumonia.
I highly recommend exercising....and concentrate on eating whole foods....make a effort everyday...two fruits... three serving of veggies ( 1/2 cup cooked veggies is one serving)..one cup of raw is one serving...Oatmeal with fruit will fill you up too. Drink water afterwards...
I do have a degree in Nutrition and Dietetics, so I know basic nutrition and I did take a Master's course on Obesity and Eating Disorders ...
Studies show people who exercise for life will keep their weight down...I could go on...

moyan
02-23-2010, 01:02 AM
Hi, now I know I am in trouble: I do NOT like fruit and vegetables, my comfort food with pred is baby arrowrootcookies! I also know, after trying to lose weight all my life, that losing starts in my head. I have to program myself and I have noticed, that after a period of normal eating, it takes a while for my tummy/body to get used tio smaller amounts of food.

moyan
02-23-2010, 01:04 AM
P.S. I do what I can excercising, but with a hip that doesn't like me and a sore back...............

elephant
02-23-2010, 12:54 PM
Moyan that is all you can do. You do the best you can with what is going on with you mentally and physically. Your funny arrowroot cookies. Yum. Moyan do you like blueberries? You could blend a cup of light vanilla soy milk with a cup of frozen blueberries or other berries and blend in a blender. You could also add half of a banana ( that equals one fruit) to the blueberry smoothie. Drinking V8 is good too. Hey I will find ways to sneak veggies and fruit into you...Hee hee :>)

moyan
02-24-2010, 12:24 AM
Hi elephant, thank you for your advice. I am a very good old geeser when it comes to veggies and fruits: always have them at hand and dump some here and there. The frozen ones are easy to just add, learned that when kids were little, hehe.

moyan
02-24-2010, 12:27 AM
PS With kidney problems no bananas and V8 has a lot of salt. Latest idea is to mix good veggies in blender, cook a bit and add to food.
(Blah)

elephant
02-24-2010, 12:39 AM
Sorry Moyan, I forgot you had kidney problems. Yes those are too high in potassium. I remember 21 years ago I was on a low salt, protein and potassium diet. It was very hard and I lost weight. I know how hard this could be, because many fruits and veggies are high in potassium.
I drink the low salt V8, but it is high in potassium. Are you needing a kidney transplant? What is your creatinine level ( blood work).

moyan
02-24-2010, 12:46 AM
I forget the #, but when first found, docs were very scared and sent me same day the lab report came in to the hospital. Was down to 50%, but has since gotten better and stabilised and all is fine. Have a kidney specialist that I see every 6 months, but if something comes up..............

jola57
02-25-2010, 03:33 AM
Moyan, who is you kidney specialist. I am going to see dr. Constantine in Abbotsford, a nephrologist. don't know if he has seen any weggies. Has yours?

moyan
02-25-2010, 04:26 AM
Hi Jolanda, kid doc is dr. Starko, #203, E Columbia, don't have the street #, across from Royal Columbian where he also works. 604 525 9666 office.
I don't know if he has other Wegs, but he seems to generally know what he is talking about.
Also was once to an ENT that I really felt good about. Right questions and right answers.
Next week your rheumo, and I will not talk about him, not fair when he can not put his bit in :)

MCC
02-25-2010, 11:58 AM
I have now put on 6 pounds after 7 weeks on prednisone, but after talking to my doctor about it I'm am no longer as bothered as I was. I lost around 14 pounds through being ill before my diagnosis, so I was always going to put some weight back on anyway. I am going to up my excercise from now on.

I also have a moon face which is noticeable to me, but not as bad as I had thought it could be (here's to it not getting worse).

Sangye
02-25-2010, 12:05 PM
I hope you only get better, Mandy.

I gained 40 lbs in my first 4 months on pred. I started on 1,000 mg IV pred (1,250 mg oral pred) and was completely immobile. You should have less weight gain since your pred is lower and you can exercise.

Don't overdo it, though. Pred makes you more likely to tear tendons and ligaments. (The Achilles tendon is the most common. It can completely tear off the heel bone. BAD injury.) Also, the pred gives you the illusion of strength but your body is not as strong as your pred head thinks it is. :)

jola57
02-25-2010, 06:21 PM
He is young and has a lot to learn but I like him and so far feel comfortable. If I need better care or info I can always get other opinions, but for now both of us seem to agree on a regimen that works.