Weaning pred question

[marta]

Hey gang,

Quick question - or not knowing me.

I'm weaning off the evil pred and feel like I am constantly energy depleted. I'm at 6.5mg going to 6mg next week and probably go at that rate (.5mg per month) for a while. I am achy, completely useless as far as energy goes, and dragging my butt around like it belongs to someone else - who's passed out (i.e. dead weight).

I just read a post by someone on Facebook who's at 2.5mg and is feeling the same. Does this mean I'll be conceivably feeling like this for the next 9 months? Wow, that would really suck if it's the case.

Just wondering what your experiences were and also if you have any tips that helped mitigate the "hit by a truck" feeling that I'm so not looking forward to dealing with for the next 9 months. I know that everything takes time with this disease, but I find this is probably the hardest thus far and knowing how long it will last makes it hard on the brain as well.:predrage:

Just looking for some insights as this is one aspect of the disease process I haven't experienced yet and am not super keen on.

Thanks.:sad:

[pberggren1]

You have been tapering slow and conservative which is good.

Did the truck hit just recently? If so then you may have to go back up to 7 or even 8 for a while. Some can have a very rough time tapering anywhere from 10 to zero. How do your labs look?

I remember Sangye going to see an endocrinologist about switching to hydrocortisone. It is more like our bodies natural one so it is easier to taper off than pred. I'm not sure how much Sangye is on now. She would know more about this than I. Give her a shout and see what she thinks.

[Psyborg]

My first time around at reducing I felt like that constantly. This time around I feel like the remission is more real because the pred reduction is going easier this time. I do definitely feel tired a lot but some of the pain I had last time isn't present this time...other than when the weather changes.

[Al]

Of course, Marta, there could be other explations. In the first place, the recent RTX stuff could be playing a role. Also, it is a clear fact you have been busily busting said butt lately. Perhaps it is really a matter of utter exhaustion. However, your pred dose is at that suspicious level: at the point the adrenals need to kick in. " (I have personally had trouble at the 7.5mg point.) I recommend reporting these observations in to the doctor.

Al

[Sangye]

That's how I feel every day, tapering or not--seriously.

It's probably not an option (or a good idea) to switch to hydrocortisone. You can only go on HC if don't need pred to control the Wegs at all. Also, you would only go on HC if you have to stay on steroids for adrenal reasons or to taper at very low doses.

How long have you been on pred, Marta? And what dose have you mostly been at?

[Red]

Me to i have no energy pred free 7 months !

[marta]

Thanks guys. I feel like I had a bit of a mental breakdown yesterday (first one in many months - maybe even over an year). I just feel like I can handle all of the crap that comes with the gig, and I can usually muster enough energy to get things done, but of late it's been impossible, and the constant aching is keeping me from getting on the treadmill or anything else to try and regain my old body back. It's really playing a number on my brain, mostly because I imagined that as the pred went down the condition would get progressively better, but it's not, I was much better a few months ago.

Al, I don't think it's from the RTX. My experience with that has been that it wipes me out for a day or two afterwards, but nothing significant beyond that. I was also thinking that perhaps going full out on February 29th for PJ Day might have used up my energy reserve, but I don't have functioning adrenals, so no energy to be used up. I have been dealing with a cold pretty much since then - now it's very low grade and just the occasional dry cough, but I imagine that might have something to do with it, but I'm quite certain that it's the pred.

Sangye, I can't imagine feeling like this for over four years or is it five now for you? That's insane. My heart goes out to you. You have had a gross go at this gig and yet you're still here helping people every day - thank you.
I don't think I would switch either. I know I just have to suck it and go through with the path I'm on. Kinda like running a long race. There will be walls, there will be mental blocks, but many others have gone through, so I have to do it too, right? I've been on pred since May 2010. Started at 60mg got down to 12.5mg by October 2010 when I had the flare, back up to 1500 for three days then 60mg and then it's been a very slow wean since then because we couldn't get it under control. My current doc is very conservative with the wean, which has been relatively painless and un-noticable until now. I trust her completely.

I know there is nothing to do except for put my big girl panties on and go through this gross wall, but I was hoping that some of you might have some coping mechanisms you've created for this part of the 'recovery' process. My dad said it was the worst thing in his life when he had to wean off pred last fall - he wouldn't wish it on his worst enemy. I think too that when I was sick sick, I had arranged for the regular everyday things to get done in various ways, and I wasn't working. Now I'm trying to get back to work, and dealing with a five year old, and her friends, and school and taking care of the home and I feel like I have less energy than I have throughout these whole two years. It's a bit demoralizing as well as physically difficult.

Thank you all for your words of encouragement and support. What an amazing group of people you are.

[Geoff]

Hi Marta,

Sorry to hear that you have hit a 'road block', especially after the 'highs' you have been on recently. It reminds me of last August when we were getting ready for Emily's wedding (in your case Rare Disease Day). I was cranked up and firing on all cylinders, then like you, straight afterwards, I went down with the worst cold I have had since DX. Its true to say that we have to be mindfull of the limited battery energy available to use as a result of this illness. As Phil and Al have intimated, perhaps a blood test to put your mind at rest and then give that brain a rest for a few days and regroup!!
The battle with the mind is as important as the pure medical stuff I believe in dealing with WG.

Good luck my friend!!:thumbup:

[marta]

Thanks Geoff. I remember you getting sick after the wedding. It was a huge surprise to me as I'm sure it was to you because things seemed to be going so well before.

I don't know if I'm being optimistic or naive or Polyannaish, but I refuse to believe that this is anything more than the pred wean. I will go out and do a blood test today or tomorrow just to make sure my liver is not causing the fatigue, and that will put my mind at ease from that perspective, but I think it's all the evil pred wanting to be my life partner and fighting with all it's might to do so.

No kidding about the battle with the mind. I seem to be on top of that most of the time, but yesterday there was a bit of a knock out from the opposing team. It seems like whenever that happens and my mind takes a beating, I end up on here for support from my friends that know exactly what I'm going through. I also try not to complain too much at home as I don't want to add any more stress to my loved ones than I already have. It's usually stuff they can't do anything about anyways, so why make them and me feel crappy if it's not necessary. So unfortunately for you, I end up on here when I feel defeated. Sorry.

Thanks Geoff and everyone else. I'm more thankful than I can express in words.

[Sangye]

Marta, do you feel unusually sleepy in the afternoon? If so, that's a sign that your body can't tolerate the lower dose. If it's just fatigue due to the pred taper it should ease up within a few days--less than one week.

You may have to taper even slower at times. It doesn't mean that you'll have to go that slow at every drop. During my last taper I was able to leap down from 10mg to 6mg all at once with no problem, but I had to crawl from 6mg to 5mg.

Also, pred causes imbalances in the brain chemistry. I can always tell if I've tapered too low or too fast if I start getting depressed and feel hopeless. As soon as I notice that, I increase the dose and it eases up. I suspect it may be a useful indicator for you too, Marta.

I've been feeling like this for nearly 6 years (it'll be 6 in June). It's really hard to take!

[marta]

Thanks Sangye, wow 6 years of feeling like this - ugggghhhhh!!!! If I could give you a big hug right now, it would be one of those awkward ones where you'd be thinking "OK, is she ever going to let go of me?"

I feel sleepy all the time, but I can't sleep because despite my body being a lump of junk, my mind is constantly going and wont let me sleep. I wake up tired. All the time. I took some morphine last night because not only does it get rid of the aches and pains, but also helps me have a sound sleep, but I only take that very occasionally as I don't want that to be my 'go to' drug for obvious reasons. I have enough crap in my body and am not interested in adding an addiction into the mix.

Like I said, my brain has been really quite good throughout with the odd blip but it usually passes very quickly and they are very few and far between. Yesterday I got whallopped by my brain. Mostly because I had in my mind that around 5mg when the adrenals start kicking in things might improve but then I read that a girl who's going through the same at 2.5mg. Then I did the math and got so bummed about how long I could potentially be feeling like this. I don't feel like I can function as a normal person, something I've been kinda feeling closer to in the past few months.

I'll see how I feel in the next few days and might go up a bit. It's just something I wasn't expecting to be this drastic. I knew that it would be tough, but I thought I'm tougher than it, but apparently I'm not as tough as I thought I was - ha ha. In fact I'm feeling quite whiny right now. Thanks for letting me wa wa on here and with your invaluable info. I'm gonna go look for a wa-mbulance... ha ha. Going out to get a blood test right now to make sure it has nothing to do with my liver. Will know tomorrow.

Thanks a ton.
m

[HopeinTN]

Marta,I’m sorry you are having a tough week, but this may make you smile.

Iactually went thru the self-checkout line at the grocery the other day, with aton of groceries that cost over $100. After I gave the cashier my $1.00 off coupon, I put my bags in the cartand proceeded to my car…without paying. No one stopped me. I didn’trealize what happened until almost 3 hours later. I headed back to the store to fess up and pay,praying that my picture was plastered on the door as wanted. Thankfully it wasn’t, but the same cashierwas sitting on a bench outside and I instantly thought I must have got herfired. She was just on a break and whenI said “I was up here earlier… and she replied sternly “Yes, I remember you”.

Anyway,I explained I was going thru some stuff and my brain wasn’t as sharp as it usedto be. She was scared she would get introuble, so she voided the whole transaction. Cliff notes version is that I didn’t have to pay for the groceries but Igave her the only cash I had ($20) for the pain and suffering I must havecaused. She was now afraid to go back inand ask how to re-enter without all my groceries.
Katrina

[NicShaf]

When I was tapering, I would feel like I got hit by a truck for a couple days, but within about 5 days, I felt like I adjusted and kinda normal (if you don't count the Pred side effects)
I think I remember it being worse for me when I was between 40mg and 10mg, every month I would go down 5-10mg and it was horrible for a couple days. I felt like I adjusted quicker when I was tapering under 10mg.

[drz]

I found for me when tapering under ten it seemed to take about 10-15 days most of time to sort of normalize after a drop. I would stay there another week before trying another micro taper. I used 1/4 mg drops to try minimize the enormous fatigue and this seemed to work well most of the time. Rather slow but helped me feel a lot better. I couldn't handle the 1/2 mg drops very well. I would also postpone a taper a few days if there was some high stress event coming up, like dental work or heavy medical trip where I couldn't afford the fatigue. I got down to 5 mg this way where i have remained for several months per my doctors advice for now. I also started my taper in late spring of 2010 from 70 mg. The early drops by ten a month seemed rather easy at first till you flare and then have to back up. I just talked with another GPAer at lunch who has Wegs lite but had a flare and got backed up to 40 mg again for another several month taper to try get back down to 10 again and will be getting RTX next week. That to me is the real discouraging part of the whole business of trying to taper pred down and off if possible.

[marta]

Ha ha Katrina, I so get that brain fog feeling. I've been forgetting words halfway through a sentence lately too. I am used to feeling on top of my game, even when I was sicker than sick, I still had my marbles intact.... this last month is questionable, and quite frustrating. I just feel like a half of me mentally and a triple me physically - like I'm carrying three of me around.

Nicole, I have felt the same throughout. When I go down if I feel anything at all, it's only been noticable for a couple days then it goes away. But I have to say that generally I haven't felt much at all during the drops, but this seems to be hanging on for a while. I have also been fighting a low grade cold or something since right after PJ Day, so almost a month - yeah, a month tomorrow - so that might have some bearing on the situation. I just went and got a blood test, so I'll go in tomorrow and get the results and see if anything is rearing it's ugly head, or if my liver is acting up. Ahhhh, how to become a doctor/specialist in a rare disease without going to med school. This is it.

This too shall pass, but I wish it would pass with less of a drag. What a bunch of fighters on this forum. A friend gave me a fridge magnet this Christmas - and she's an ultra runner for The North Face, the stuff she endures is insane - and on the magnet it says " I have met my hero and she is me". Coming from her this meant a ton, but it's funny because I see this as a long run and having to break through those few walls you have to break through on a long run, and I am not feeling very hero like these days, but I know one thing for sure, all of you guys are and this yucky thing brings out the best and toughest in us all. So here's to the super race of Weggie survivors.

[pberggren1]

Only you know for sure Marta. But with aching and fatigue like this it makes one wonder if it is just a cold or Wegs sneaking in again. If it were me I would check my labs just to make sure.

[Dryhill]

Marta, if it is any consolation every time I read what you are upto I get tired and have to go and have a rest! :flapper:

Jim

[marta]

I found for me when tapering under ten it seemed to take about 10-15 days most of time to sort of normalize after a drop. I would stay there another week before trying another micro taper. I used 1/4 mg drops to try minimize the enormous fatigue and this seemed to work well most of the time. Rather slow but helped me feel a lot better. I couldn't handle the 1/2 mg drops very well. I would also postpone a taper a few days if there was some high stress event coming up, like dental work or heavy medical trip where I couldn't afford the fatigue. I got down to 5 mg this way where i have remained for several months per my doctors advice for now. I also started my taper in late spring of 2010 from 70 mg. The early drops by ten a month seemed rather easy at first till you flare and then have to back up. I just talked with another GPAer at lunch who has Wegs lite but had a flare and got backed up to 40 mg again for another several month taper to try get back down to 10 again and will be getting RTX next week. That to me is the real discouraging part of the whole business of trying to taper pred down and off if possible.

No kidding the whole business of trying to taper and then being bumped up again to crazy levels is a huge bummer. I know that I will inevitably be on the high doses again at some point in my life, but I'd like to get off it before it happens again. Plus it's so hard to get off the stuff that it feels like a bully has come on the beach and stomped your sandcastle when you've been working on it all morning, except for our sandcastles take years to build. I'll see what my bloodwork says and make an appointment with the GP and see if I can get steroid drops as per your experience.

I know that when you're on a back-country hike and you have been hiking all day with a 50lb pack on, and you see the peak where you're going to stay the night, the trick to survival is to 'never think you're almost there' because inevitably something will happen where you might not be almost there. I had in my head that I was almost there, and now I got knocked off my high horse. Failed to follow my own advice. Oh well, live and learn. Over and over again - ha ha.

[marta]

Marta, if it is any consolation every time I read what you are upto I get tired and have to go and have a rest! :flapper:

Jim

Ha ha ha - that's too funny Jim. Well, now I'm tired too - :lol:
I know. I need to mellow out, but I feel like time is limited and I want to make hay while the sun shines, and it was shining before this. I hope I put a good dent in it, and that PJ day can take on a life of it's own. I have ideas too that I think would bring us miles ahead - not just us Weggies but all of us who have to fight for a diagnosis with autoimmune disease. I just spoke with my doc - before the hammer hit me on the head - and asked what the chances are of a grad student doing a study of the numbers in Canada for all of the autoimmune diseases - she said it would be a difficult task but she likes the idea and would think about how to get it done with one of her students. I have also been thinking about who I can talk to so that there is a testing protocol that people with a difficult diagnosis can undergo to eliminate AI disease. Start with a screen for the more common ones and as you pass each one go to more rare screens, but wouldn't it be great to have a protocol like that and so many people can avoid being made to feel like crazy hypochondriacs by a medical profession that also is in the dark about AI disease.

Incidentally, she loves what has happened with the survey, and wants to do an official one this summer. She's hired a grad student to help manage it, and wants all of us Weggies who answered the last one to go in again and answer the questions that a few doctors will put together. I can't imagine ever getting the numbers we got on the survey I have, but we can try. On my survey there are almost 700 Weggie replies. WOW!!! If we assume that WG hits one in 40K then it's a representation of 28,000,000 people, if we assume that it's 30K then it's 21,000,000. Again, WOW!!!

[pberggren1]

I seriously doubt that Wegs is one in 40K. It is more like one in 5K.

[marta]

I had a feeling you'd jump on this one particular stat Phil, as we've had this discussion before. I don't just pull numbers out of a hat, the 30 - 40,000 is a number that kept coming up when I was doing the initial research on Wegener's.
Here are some links to studies and info that I have not personally authored. The numbers come out to somewhere in the 1 in 30 to 40,000 overall, but if you look at it from a yearly incidence rate it's much much higher than one in 40,000

Prevalence and incidence of Wegener's granul... [Arthritis Rheum. 2009] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/19790134)
The epidemiology of Wegener's granulomatosis... [Arthritis Rheum. 1996] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/8546743)
http://rheumatology.oxfordjournals.org/content/35/2/142.short
Full Text: Diagnosis of Wegener's Granulomatosis in the ANCA Era (http://www.jrheum.com/subscribers/06/10/1923.html)
Wegener's Granulomatosis | Doctor | Patient UK (http://www.patient.co.uk/doctor/Wegener%27s-Granulomatosis.htm)
Prevalence and Incidence of Wegener's granulomatosis - RightDiagnosis.com (http://www.rightdiagnosis.com/w/wegeners_granulomatosis/prevalence.htm)
Wegener's Granulomatosis: Incidence (http://www.freemd.com/wegeners-granulomatosis/incidence.htm)

Grab a calculator and give'er.

[pberggren1]

I have already talked to 3 different Rheumies in Regina and they all have between 20 to 40 Wegs patients. Regina is around 190,000 and of course has much more in surrounding area. These are just 3 Rheumies and said there are many other docs that have Wegs patients as well in Regina. And those are the ones that we know about. In Swift Current there are at least 4 Weggies and we have a pop of around 15,000. My doc even says that according to his practice back in the UK the prevalance of Wegs was around one in 5K.

[marta]

yioi!

Anyways, I'd love to hear if any of you have tried and if so had any success with adrenal boosters or anything else. I imagine even the natural ones might have some sort of steroid type something - I know, pretty technical and scientific.

Thanks for all of your help.

[Sangye]

Marta, I do not recommend using supplements for the adrenals until you get below 5 mg pred-- and then only with the guidance and supervision of a holistic physician. I've tried several times over the last few years to use adrenal support supplements, but even in tiny doses they caused the Wegs dog to spring to life. Since I've been on HC, I've been able to use VERY small daily doses of a particular supplement as I taper. But it is really dicey, as the Wegs dog is starting to wake up from the rtx sleep.

Assuming that it's not Wegs activity creeping up, your symptoms may be due to the pred taper or it may be that your recent exertion is the culprit. Holistically speaking, pred is deeply depleting to the body. On higher doses most people don't feel the depletion, they feel energized. But expending a lot of energy at that time causes you to crash later. I've seen this happen so many times in this group. I don't know how you can avoid overdoing it when your body doesn't tell you that you are. Not only does pred "give" you energy, but it masks pain from overexertion. Fortunately for me, higher dose of pred makes me feel weaker or I'd definitely do the same thing.

[Al]

Marta, as far as statistics are concerned, you could both be right: The widely published figures (30-40 per million) could easily be too low because of under diagnosing. Furthermore, there are true clusters, for unknown reasons (perhaps something about the plains of Saskatchewan...? That and a higher sensitivity about Regina diagnosticians....?).

At any rate, here's what I think is happening to you: Your body thinks its daily fix of steroids is about 7mg, say. Coming down from that would require your adrenals to be coming back to life, which has evidently not happened. No harm yet to that, other than the fatigue, but it would be serious if the adrenals remain inactive once you get below this amount.

The other factor is the fact that you have a lot on your shoulders. Much of that is self-imposed, of course, just because that is who you are. Also, young Hana is in your charge so much of the time. There is a reason that parenting is a young persons' sport: We are built to take the stress better in our 20s. As an older and much sicker Mama than most, the inherent stresses are going to do nastier things. A lot pf pred might mask this, but now they can't shield you.


Marta, do you feel unusually sleepy in the afternoon? If so, that's a sign that your body can't tolerate the lower dose. If it's just fatigue due to the pred taper it should ease up within a few days--less than one week.For what it's worth, when I tried going below than 8 mg, it wasn't afternoon fatigue that did me in, but morning fatigue. Now, I am usually low IQ in the morning, but at that time, I would eat breakfast, then have to go back to bed. I wouldn't begin to function productively till late afternoon. This lasted until I wnt back to 10 mg. So we'll try this all again....

Al

[marta]

Thanks Sangye. I knew you'd have the right answer on this. My gut was telling me no, but I'm grasping at straws and it seemed like a good idea when Bri brought it up. I'll stay away and talk to my doc next time I see her - it'll be end of May but I think I might be singing this song for a while. Thanks for the note too. <3 U - like the young kids type.

Al, did you just call me old? Ha ha ha - it's OK though, I can take it cuz I'm pretty unreal for an old, sick mamma (we need to have a knee slapping emoticon - I would insert it here if we did.) :wink1: We (my mom and I) joke about child rearing being a young person's sport often. She had me when she was 18, and I had my daughter when I was 40 - slight difference. There is also a huge difference in how much attention the kid gets - she's got me wrapped around her tiny little finger, whereas when I was a kid, well, it was 'old school'.

My doc told me that the adrenals usually don't start waking up until 5mg, so mentally I was prepared to suck it up until there, but now I'm thinking there will need to be extra sucking it up. I've been quite ready for the 'hit by the truck' feeling, having read many other tapering woes, but yesterday was particularly bad, and I also read someone post the same experience at 2.5mg, and I panicked thinking that this will go on for at least as long as I was pregnant, and it freaked me out completely. I was pretty non functioning yesterday. My IQ level never seems to get up to par any more, and I too wake up tired. I seem to get my best sleep in the late night/early morning and if I could sleep in that would be best for how my body operates, but that is just not feasible right now - well it is RIGHT NOW because it's spring break.

[Al]

Hey, Marta, I would never be so insensitive as to call you "old"--or so disingenuous, given my own age. I called you older. Moreover, note, please: I left that comparative hanging. However, I will observe that my mother turned 40 just after I was born, and I know that I gave her far more grief than she needed. However, I further observe that she lived into her 90s, with her marble collection intact and even growing.

I, too, hate it when my mind goes foggy. This mostly happens in the morning. Funnily enough, around about bedtime--that is, when the lights go off, the brain goes sproing! But, oh--those pred dreams as dawn sets in!

It is a good sign that you can still write in your characteristically babbly style. Yet your nagging "cold" concerns me. This is not a good thing for a Weggie. Garlic soup is my own recommendation--that and rest, if that is possible during spring break.

Al

[marta]

Al, I know that you wouldn't, I just couldn't resist because of earlier conversations we've had. It was a nudge nudge wink wink kinda thing. Your momma sounds like a cool cookie after my own heart.

I know exactly what you mean. Yesterday I literally couldn't walk from one side of my house to the other (and I live in a 780ft square house, so not a whole lot of distance) without feeling like I've ran a race, I went to bed with a body fully exhausted and couldn't fall asleep because my brain just wont stop going - got up and watched TV for a few hours. Here I am tonight, tired and at 11:13pm typing away.

Babbly indeed, I don't think the Wegs Dog could ever knock that out of me. I honestly try to keep it short, but it seems to be an impossibility.

Lastly, mmmmm... garlic soup. Recipe please. I eat a lot of garlic, Eastern European background and all, but I've never had garlic soup. Tell me more.

Rest, I'll work on. I promise.

m

[Al]

My mother was pretty amazing, Marta, continually re-inventing herself, even in her last months. Quite the example.

Here's how I make garlic soup: I use a low-sodium yellow curry paste (this is hard to find; you can use the saltier stuff if you need to), heated in some sesame oil with minced garlic to taste. When hot, I cut it with "Lite" coconut milk and low-sodium vegetable broth, letting it come to a near-boil, whisking often. (I buy these at Trader Joe's in quantity; the prices are very good there, but you can make your own, of course.) If I am in the mood for more protein, I throw in some tofu slices. Then I squeeze in some fresh lime. That's all! But I add some toppings: sliced green onions, cilantro, and slightly roasted peanuts or cashews. Easy and delicious! My wife loves it, which is a good for my domestic tranquility. It does make my head sweat, but, somehow or other, I have managed to avoid all colds and such for more than a year. You know, garlic is not good for dogs; maybe it will keep the Wegs fella from getting too frisky.

Al

[marta]

I'm trying it out tomorrow. That sounds delicious. Thanks.

Of course your momma was pretty amazing, look at the son she raised. No nudging nor winking on this statement.

Good night brotha. Now I'll try and go to sleep.

[Al]

....Of course your momma was pretty amazing, look at the son she raised. No nudging nor winking on this statement....Good night brotha. Now I'll try and go to sleep. She had to be, to raise a reprobate like me.

Nighty-nightly. Sleep tightly--and long, my friend.

Al

[Sangye]

These are the signs/symptoms I experience when the pred is too low or when I've outrun the dose I'm on:
- extreme low energy and fatigue easier than usual
- teary for no reason
- depressed for no reason; feel hopeless (not typical for me)
- sudden and profound sleepiness (like I was given anaesthesia)
- physically and mentally feel like I'm staggering around--like it's 3 am all the time
- I break out into an unusual kind of sweat with the slightest exertion, like rolling over in bed. I call it my "small pore sweats" because it feels like a zillion tiny beads of sweat. I don't feel hot or flushed with those sweats.
- My face swells like a moon face

For me, these are 100% accurate indicators of adrenal trouble. They're accurate even on HC. If I experience a few of them for 3 days while tapering, I know it's time to increase the pred or HC again and try again later.

[marta]

Thanks Al, and thanks Sangye.

I just got my blood test result from yesterday and everything seems to be within normal range. My GGT is a little high but nothing worth writing home about and my eGFR is a little low, but again, not noteworthy. Soooo, it must be the 'roids'.

Actually what you mention above Sangye is quite descriptive of what I've been feeling - even my face was freaking me out because it looked more moonlike the other day. I will do 7mg today and go from there. Thank you all for your help. This has been one of those weird exercises that I wasn't too interested in participating in, but here we are.

Thanks.

[Dryhill]

Al, how dare you! You do not like me mentioning the v word or t****r sauce, so now you go an mention garlick soup. Garlick is ok in cooking but garlic soup :thumbdn:

Jim

[Dryhill]

For what it's worth, when I tried going below than 8 mg, it wasn't afternoon fatigue that did me in, but morning fatigue. Now, I am usually low IQ in the morning, but at that time, I would eat breakfast, then have to go back to bed. I wouldn't begin to function productively till late afternoon. This lasted until I wnt back to 10 mg. So we'll try this all again....

Al

Most mornings I get up, have breakfast, potter about sorting things out, prepare my lunch time salad that I take to work, then I generally go and have an hours sleep before going to work. So very similar to Al, BUT I am on 10mg of pred .... what am I going to be like on lower doses?

Jim

[Al]

Thanks Al, and thanks Sangye.

I just got my blood test result from yesterday and everything seems to be within normal range. My GGT is a little high but nothing worth writing home about and my eGFR is a little low, but again, not noteworthy. Soooo, it must be the 'roids'....

I think so, Marta. Good that the liver is in good shape, but one note of caution regarding the slightly low eGFR. This is inferred from creatinine clearance, meaning that the latter number is a little high. So I think you don't want a long wait before re-doing the renal panel. The present rate is, we hope, a minor blip, but it is nice to confirm this, especially since all Weggies are at risk for kidney issues.

Al

[Al]

Al, how dare you! You do not like me mentioning the v word or t****r sauce, so now you go an mention garlick soup. Garlick is ok in cooking but garlic soup :thumbdn:

Jim

Gotcha! Maybe, Jim, you can follow the advice in your signature...?

Al

[Al]

Most mornings I get up, have breakfast, potter about sorting things out, prepare my lunch time salad that I take to work, then I generally go and have an hours sleep before going to work. So very similar to Al, BUT I am on 10mg of pred .... what am I going to be like on lower doses?

JimYou say you do the night shift?

Al

[Dryhill]

You say you do the night shift?

Al

No used to but now start as early as I can make it (seldom before 11am and anything upto 1:30pm) and work through to the end of the commuter rush hour, which is around 7:30 - 8:00pm.

Jim

[Psyborg]

I thought maybe I was having an issue with fatigue, and was wondering if I was tapering too fast. But as I've had no other issues I don't think that was it. Then I discovered the Celexa (for fighting the Pred Mood swings) has a side effect of drowsiness. I think the Pred had been masking that, though I could be wrong. Of course tapering Celexa isn't straight forward as stopping either...darn drugs.

[marta]

I thought maybe I was having an issue with fatigue, and was wondering if I was tapering too fast. But as I've had no other issues I don't think that was it. Then I discovered the Celexa (for fighting the Pred Mood swings) has a side effect of drowsiness. I think the Pred had been masking that, though I could be wrong. Of course tapering Celexa isn't straight forward as stopping either...darn drugs.

I remember the docs telling me that the treatment for WG is almost as bad as the disease. Thus far, it hasn't been much of an issue for me, but I get it now. I've just been lucky. I just went back on MY drug of choice two days ago and it seems to be doing a little bit of the magic I was hoping for - it's coffee. I stopped it a couple of weeks before diagnosis almost two years ago, and then the docs told me I can't have any once I started the treatment, but I haven't heard anyone else being told the same thing. I decided that it's kinda hard stopping it so I'll just stay off it (it was easy when I did stop because the WG pain was trumping any withdrawl headaches, so it was just good timing) but now it's actually helping a little I think, and I can go back to my addictive ways. Baby steps forward. I'm feeling a little better this week than last, so I'm celebrating the redirected trend.

BTW. Al, I tried your garlic soup before I left Jasper (I'm in the city now as Brian's going under the knife tomorrow for knee surgery) and it was OK. I'm sure the proportions of ingridients were off, but I can see how the flavour could be improved by just having the right amounts of each ingredient - I just wung it - it'll take some tweaking to get it just right, but I definitely see the potential.

Thanks all y'all.

[Al]

Baby steps forward, Marta, beat the socks off no steps at all. Anent the soup, yes, it is all in the tweaking for taste. You may need more salt than I do, for instance, or hotter (or milder). Also, I forgot to mention that I always serve it over brown rice (I like jasmine or basmati best) or really good rice noodles.

Please give my regards to Brian. See if he wants to relax with a little football.

Al

[marta]

I concur. Celebrate any forward movement!

I will tweak on with the soup although no salt - trying to keep that stuff away and hopefully get my skinny face back before I turn 50.

I will surely pass on your regards to Brian, although I don't think he's capable of relaxing. He wants to be back at work on Friday and Saturday so no football for him.

Take care and I will be bugging you again once I get some energy back. I already have some ideas to get going with the Autoimmune project - actual on the ground tangible things that can help people right away. We also need to talk about the book. I just need to get some energy back... c'mon caffeine.

[pberggren1]

I used to love my morning coffee. Can't say I miss it at all though. I quit it about 2 years before Wegs came along. My doc said probably a small cup once in the morning would be of little consequence. He said he always has a small cup every morning. He does not think he could live without it.

[Sangye]

Oh no, Marta coffee is NOT a good idea. Coffee works by stimulating the adrenals to make adrenaline. But when the adrenals are already depleted, having coffee is like whipping a tired horse. At first the horse runs faster, but as it becomes more and more worn out it slows down. For most people with weak adrenals, this shows up as needing more and more coffee to function at the same level and starting the day in progressively worse shape.

[Psyborg]

Hmmm...that's probably my problem. Though I'm drinking energy drinks instead. Noticing less benefit over time, and dead tired in the afternoon. The bad part is that's when I'm at work and need to have some sort of coherence.

[Pete]

Hello All,

I'm also tapering off pred. I was at 40 mg/day in February and had been tapering off at -10 mg/month with no I'll effects. This past Friday, I went from 20 down to 15. I began experiencing cramps in my hands on Saturday and Sunday (at least I was excused from helping do the dishes after our family's Easter feast!). My hands feel better today. I try to keep my potassium level up by eating 2 - 3 bananas a day and taking 100 - 300 mg of potassium supplements. Does anyone have similar symptoms and successful treatments?

My current meds for wg are 100 mg cytoxan, 15 mg pred, and 1/2 bactrim daily.

Docs are now a bit concerned about what cytoxan may be doing to my bladder. I have a urinary/renal ultrasound and cystoscope scheduled in two weeks to see what may be causing blood in my urine. Hope whatever they find is easily treated.

Pete

[pberggren1]

Pete, how long have you been on ctx and pred?

It might be that you are getting too much potassium. I think potassium is a bit hard for the kidneys to filter and if you have kidney involvement then that could be the reason.

I had blood in my urine as well the last time I was on ctx. The ctx caused hemorrhagic cystitis in the bladder. It went away after I went off the ctx.

[Pete]

Hi Phil,

I've been on ctx and pred for about 15 months since shortly after dx in Jan 2011. Fortunately, no kidney involvement so far. Pulmonologist suspects hemorrhagic cystitis from ctx. Hope that's the worst thing it could be. Not sure about immunosuppressants other than ctx though.

I was on immuran for about 10 days in Jan 2012, and I didn't tolerate it well. May have been coupled with beginning to wean off pred at the same time. May try it again beginning next month if I can handle no more than 10 mg/day of pred.

Hope all is well with you. I really appreciate the wit and wisdom of the folks in this forum.

Regards,

Pete

[Al]

Pete, I would recommend holding back on the extra potassium until they check out the blood in the urine and do the ultrasound. If the kidneys are challenged, bet not to overdo the electrolytes.

Al

[pberggren1]

Pete, 15 months on ctx? SERIOUSLY?! This is dangerous. One should not be on ctx for longer than 3 months unless absolutely necessary.

Do you see a Wegs specialist? If not I highly recommend one get on your case ASAP.

If the ctx is not working at getting the Wegs at bay then you have to try another drug, possibly Rituxan.

[Sangye]

Hmmm...that's probably my problem. Though I'm drinking energy drinks instead. Noticing less benefit over time, and dead tired in the afternoon. The bad part is that's when I'm at work and need to have some sort of coherence.

Oh man, energy drinks are the worst. Don't even go near them unless you want to destroy your adrenals. Even healthy people will wreck their adrenals with those drinks.

[Sangye]

Pete, if you've been on ctx for 15 months and you still have active Wegs, it isn't working. Ctx will work fairly quickly--in a matter of 3 months or so-- if it's going to work. Keeping you on ctx for 15 months is horribly dangerous and tells me the doctor is clueless.

Also, there's no need to eat that much extra potassium. You're probably getting cramps from salt depletion-- very common with pred. If your salt intake is already normal to high, then it might be vitamin B6--also commonly depleted by pred.

[Psyborg]

Oh man, energy drinks are the worst. Don't even go near them unless you want to destroy your adrenals. Even healthy people will wreck their adrenals with those drinks.

Any suggestions on getting off the drinks? I really do quite literally crash without the caffeine now :(

[drz]

Any suggestions on getting off the drinks? I really do quite literally crash without the caffeine now :(

Are naps an option for you? I find them essential for me to help me keep going.

[Sangye]

Bob, try weaning off over the course of a couple weeks. Cut down by 1/4 at a time. Normally I'd tell someone to take longer weaning off, but they are so damaging to the adrenals I think it's important to get you off them faster. See if you can do part over a weekend and just sleep it off.

[Pete]

Had a urinary/renal CT scan and cystoscopy yesterday. No anomalies were noted in either test. Urologist thinks the blood in the urine a few weeks ago was the tail end of the UTI I had.

Down to 15 mg/day of prednisone and feeling fine. Will go to 10 on 5/1. I see my pulmonologist on 5/16. Will discuss a less toxic immunosuppressant as well as referral to a WG specialist. I'm satisfied with the care I'm getting but want someone who sees more than the occasional case to look me over and provide any needed guidance or treatment.

Getting ready to go outside and wash a few windows.

Best to all!

Pete

[Sangye]

That's great news, Pete! :hug3:

[Al]

This is good, Pete. And let us know whom you engage for expert opinion...!

Al

[Jaha]

Pete,

That's good news. I highly recommend going to Cleveland Clinic, for your Weg's specialist. I have been going there since July 2010 and feel that they are treating my wegs with all the right procedures available.
Jana

[Pete]

Pete,

That's good news. I highly recommend going to Cleveland Clinic, for your Weg's specialist. I have been going there since July 2010 and feel that they are treating my wegs with all the right procedures available.
Jana

I'm going to ask my pulmonologist at OSU for a referral. Who do you see at the Clinic? Psyborg sees Dr. Villa-Forte.

Pete

[Jaha]

I also see Dr. Villa-Forte. She is easy to communicate with and makes sure you understand her instructions.
Jana

[Debbie C]

My dr. is weening me off pred. I was at 10mg and he put me down to 5. I feel like I'm shaking inside. I went to see a kidney dr. today just to make sure everything was o.k. there and to get est. with one. He said I should probably go back up to 10mg again for a couple of days then drop down to 7.5 then 6 then 5. But he said if I can tolerate stay the way I am... I just don't know how long this is gonna go on for. I keep getting headaches and feel crappy. I probably should do what he said instead of what my reumy did

[Debbie C]

well I couldn't take those "WITHDRAWAL" symstems anymore, I had to break one of my pills in half. I thought instead of going back up to 10mg. since its been 4 days ,I'll stay at 7.5 for a few days then try again. My nerves were getting the best of me and I keep getting headaches,so maybe this will help.

[Al]

well I couldn't take those "WITHDRAWAL" symstems anymore, I had to break one of my pills in half. I thought instead of going back up to 10mg. since its been 4 days ,I'll stay at 7.5 for a few days then try again. My nerves were getting the best of me and I keep getting headaches,so maybe this will help.By way of comparison, Debra, I, too, had trouble going down to 5 mg--more itching, headaches (which I had not had since beginning pred), and fatigue--particularly in the morning. My doc (a nephrologist) bumped me up to 10 mg, and will try a slower taper.

Al

[Sangye]

Debra, I'm glad you didn't stay at 5mg for longer. Those symptoms are good indicators that you tapered too quickly. You'll have to decide for yourself, but usually it's best to go back up to the original dose and stabilize there before tapering again. It usually only means a delay of a few days but is well worth it.

[Dryhill]

Debra, when you feel able to start tapering again try alternating between 7.5mg and 5mg daily or two or three weeks. Hopefully that will allow your body to get used to the lower dosage.

Jim

[Debbie C]

Well I went back up to 7.5 mg ( I really didn't want to go all the back to 10 since I was off it for 4 days ) I've been on this for about 3 or 4 days now,I can't even remember. My mind is shot. I feel the swelling on the inside of my mouth going down and my lips keep tingling and I still feel like I'm shaky but I've been trying to not think about it.HA HA. I go to CC to see the dr. tomorrow so we'll see what he says. He'll probably be pissed at me since I haven't started taking the MTX. We are also under a winter storm watch and supposed to get 3-5 inches of snow,of all days, I'll need to take extra anxiety pills !

[Sangye]

I hate to tell you this, but if you're still not feeling back to normal after these 3-4 days then you're gonna have to go back to 10 mg. I did the same exact thing a couple years ago. I let it go too long and tried increasing the pred dosage just a bit. By the time I couldn't take it anymore it was too late. I had to go all the way back up and stay at that level for 6 months to let my adrenals recover before starting again.

Dr Seo said if I had caught it within 2 or 3 days I would have been okay. I could have increased just to the last dosage and hung out there briefly before tapering some more.

[annekat]

It sort of seems like it would make more sense to just taper more slowly in the first place, like 1mg. at a time, or 2.5mg. at the most, instead of wondering what's going to happen when you jump from 10mg. to 5mg. and then finding out in a negative way. I'm still hanging out at 10mg. and have no idea what kind of taper my doc is going to try. I will argue for a slow taper. But then, the pred doesn't bother me like it does some people, especially at this dose. I do realize the importance to my body of getting off it eventually.

[Sangye]

It can happen even with a very slow taper, Anne. I had been reducing by 1/4 mg every few weeks at the time. I was fine at 1.25mg but once I dropped to 1mg it was all over. The trick is in recognizing the symptoms and correcting it fast enough. I didn't know what to look for so I didn't correct it in time.

[annekat]

It can happen even with a very slow taper, Anne. I had been reducing by 1/4 mg every few weeks at the time. I was fine at 1.25mg but once I dropped to 1mg it was all over. The trick is in recognizing the symptoms and correcting it fast enough. I didn't know what to look for so I didn't correct it in time. Thanks for that info. For me, it seems like all the more reason to do a slow taper to begin with after 10mg and especially after 5mg. Maybe not THAT slow, though, but not rushing into trying to taper fast just for the sake of getting off pred sooner. I realize it will be tricky, as will be knowing what to look for, and I won't assume that just because I've gotten down to 1 or 2 mg., I'm out of the woods.

[Debbie C]

Well I went to CC yesterday and he said I am in remission !!!!:biggrin1: He wants me to drop off the pred 1mg every 2 weeks until I get to 5mg. and stay there for a little while.He uped the MTX that the other reumy I see here from 7.5 ( which I never did start taking ) to 15mg and also wants me to take flosamx (sp) for my bones since I have osterporoses (sp again ? DAH! )
I still am getting real bad headaches and he seemed to think it was from sinuses. I had an appt. with my gp today and he wants me to go this week and get in MRI of my brain since I had a infartic stoke and about 4-5 tia's last year. I am also having a terrible time trying to catch my breath so I am going to call my reumy tomorrow and see what he says.
Just when u think you are doing good more @#&% happens.
OH ALSO when I went to get my script filled the pharmacist told me again to watch the prilesec because it increases the doseage of MTX BUT what got me is he said his mother was on MTX and ending up getting Hogkins-lymphonma and died and he always wondered if it was from the MTX!!! I think its time it up my anxiety pills!!! And they call this remission

[Psyborg]

Good news bad news...

The good news is I finally finished my taper. Nice having less pills to take.

But the bad news is I think I'm starting to flare. Not sure the weather has been weird...but the pain reminds me of two years ago. Weirdly this is like almost exactly two years from my initial bout with this. But I'm getting weird migratory pain, and pain on the parts of my body that are in contact with the bed at night. Instantly remembered that when it started happening. Kinda hoping it's the weather or maybe its just the last of the pred reduction, but it doesn't feel like the pred reduction pain I had on and off with the taper.

[pberggren1]

Keep a close eye on things Bob. If it is worse by Monday I would definitely contact your doc about it. Are you having any other symptoms? I hope this is just a bug of some sort and you feel better soon.

[Psyborg]

So far not much else. Nose is a bit runnier than normal, but its never been part of my issues. I'll keep an eye on it. Really it could be just the weather maybe (crosses-fingers). :)

[pberggren1]

I hope it is just a passing thing as well Bob. Keep us posted.

[Al]

So far not much else. Nose is a bit runnier than normal, but its never been part of my issues. I'll keep an eye on it. Really it could be just the weather maybe (crosses-fingers). :)Yes, Bob, it could be the weather,or whatever. But you've had Wegs long enough that you know what should be checked out, yes? I would say that the chances of a flare are high enough that you should assume that you need to get checked out ASAP. That's my opinion, anyway.

Al

[Sangye]

I agree, Bob. Don't wait. Go get labs done this week. Weather doesn't cause migratory pain.

[Psyborg]

Pretty sure it's a flare, but it still really mild compared to the first time around. Got a call in to the dr this morning.

[Al]

Pretty sure it's a flare, but it still really mild compared to the first time around. Got a call in to the dr this morning.Okay, Bob. We're ready for your report....

Al

[drz]

Pretty sure it's a flare, but it still really mild compared to the first time around. Got a call in to the dr this morning.

Are you still on some maintenance meds? Some times the residual symptoms will wax and wane a bit but the Imuran or similar drug and prednisone will contain it well enough so it will eventually retreat again. But close monitoring is important to be sure it doesn't get away. i have had to increase my azathioprine sometimes during these minor upsurges in symptoms. Some times not.

[Al]

Are you still on some maintenance meds? Some times the residual symptoms will wax and wane a bit but the Imuran or similar drug and prednisone will contain it well enough so it will eventually retreat again. But close monitoring is important to be sure it doesn't get away. i have had to increase my azathioprine sometimes during these minor upsurges in symptoms. Some times not.Interesting. For me, increasing the AZA does nothing to slow an active flare, though the right dose does seem to keep the flares at bay--knock on something arboreal....

Al

[Psyborg]

Sorry, she called me back last night, I've not been great about posting lately:p Anyway, no pred was short lived. I'm back to 30 mg a day. She's hoping the immuran with the pred will put the wegs dog back to sleep.

[Carol]

After a failed attempt these are the things I did to get off Pred. It may sound a bit whacky but it worked like a breeze.
1. I waited until the weather was warm
2. Every day I spoke to my adrenals firmly numerous times a day for them to start working again.
3. I rubbed the area of my adrenals
4. I went to a compounding herbalist and over the counter she said no worries and mixed up a mixture.
5. I continued to meditate regularly. Kelly Howell is one of the ones I use.

wow it was easy. couldn't believe it!

Hope this is helpful.
Carol from Australia

[Pete]

Hi Carol,

Glad to hear you're off pred. Hope you can stay off it. I'm now at 10 mg/day and holding. I go to my doc on 5/16 and the plan is to change from cytoxan to something else - probably rituxin. I'll stay at 10 pred until I know how I respond to rituxin and then start tapering at 1 mg less every two weeks. As long as I continue to feel good, the taper will continue. If not, back up and try again.

[Sangye]

Sorry, she called me back last night, I've not been great about posting lately:p Anyway, no pred was short lived. I'm back to 30 mg a day. She's hoping the immuran with the pred will put the wegs dog back to sleep.
Dang it, Bob. :sad:

[Sangye]

Carol, it's great that you got off pred and I hope you get to stay off! :hug3:

Unfortunately the same plan will not work for everyone. Either the adrenals don't come back online fully or pred is needed to keep the Wegs dog asleep.

[Psyborg]

Dang it, Bob. :sad:

I'm honestly pretty upbeat about it. I did get to 0, so I know my body will do it now. I think it's timing. I know that the doctor hoped that Immuran would keep things at bay, but evidently not. She did ask me to call back in two weeks and give an update and discuss starting to taper again. Assuming that I don't end up coming back into flare symptoms, in which case I'll have to go to Cleveland for tests and probably will end up getting another RTX dose.

[Debbie C]

I'm still at the 10mg., I haven't started weaning down yet. Since I was in the hosp. over the weekend I have really been overly tired,still with headaches and real dizzy at times. I was wondering if I was becoming anemic. I don't know what all blood tests they ran in the hosp. I think I will call my dr. in the a.m.

[Al]

I'm still at the 10mg., I haven't started weaning down yet. Since I was in the hosp. over the weekend I have really been overly tired,still with headaches and real dizzy at times. I was wondering if I was becoming anemic. I don't know what all blood tests they ran in the hosp. I think I will call my dr. in the a.m.Debra, of course your doctor should fill you in, but you can always ask the hospital duty nurse for a copy of your tests. In fact, it is a good thing to do in all cases.

Al

[Psyborg]

Sitting at work an hour early this morning. Stupid Pred! :)

[Psyborg]

Got another call into the CC today. The pain subsided quickly with the Prednisone, but other symptoms are creaping in. Swelling, fatigue, and dizziness have returned. /bleh

[pberggren1]

Where is the unlike button?

[Psyborg]

Can I unlike Prednisone? :) Wait I have to like it first right?

[Debbie C]

Debra, of course your doctor should fill you in, but you can always ask the hospital duty nurse for a copy of your tests. In fact, it is a good thing to do in all cases.

Al

Yea Al I always do get a couple of all my blood work and I also I a discs made of all the scans I have done. I just didn't do it before I left the hosp.,but I will get them.

[Debbie C]

I called my pulmy and said I was still having alot of problems breathing and should I use that singular inhaler they told me use at the hosp. for my copd and he said use nothing...."Just try to relax" ,well its a little bit hard when u can't breathe but I didn't use anything. So yesterday my 2 sisters and I went for a walk in the park. I have walked this same path a hundred times but when I tried walking up the slight hill I had to stopped 3 times to try to catch my breath and it seemed like I couldn't get enough air in my lungs , then a got a stapping pain in my head and had a headache all nite long. These docs all think I have a major anxiety problem and don't believe me when I tell them I can't get enough air so I told my pulmy he better up my aniety pills cuz these aren't cuttin it if that's all it is. He'll see me next month !!! In the mean time I think I'm gonna try Monday to go from 10 to 9 mg pred and start that MTX next week.

[Sangye]

Debra, something is not right. Do you have tracheal stenosis? (I've forgotten)

Always trust your own assessment more than any doctor. I've had numerous doctors tell me that shortness of breath was anxiety when it turned out to be hemorrhaging lungs.

[Al]

Debra, something is not right. Do you have tracheal stenosis? (I've forgotten)

Always trust your own assessment more than any doctor. I've had numerous doctors tell me that shortness of breath was anxiety when it turned out to be hemorrhaging lungs.I agree with Sangye, Debra. If anxiety is "all" it is, that is pretty dangerous anxiety for your lungs and other parts.

Al

[Al]

Can I unlike Prednisone? :) Wait I have to like it first right?It's all evil stuff, Bob. And fobbed off on a sick person, no less. Hang is there!

Al

[Psyborg]

Feeling better today...other than sick to my stomach. Nothing wants to stay peaceably in my stomach today lol.

[Debbie C]

Debra, something is not right. Do you have tracheal stenosis? (I've forgotten)

Always trust your own assessment more than any doctor. I've had numerous doctors tell me that shortness of breath was anxiety when it turned out to be hemorrhaging lungs.
Sangye..I don't know what my problem is,all I know is something is definately not right but when they do x-rays and measure my air at room intake everything shows up fine. All my blood work comes back good (KNOCK ON WOOD!!!)
Surely if I my lungs were hemorrhaging it would show up in some x-rays-right? I'm am trying to stay very calm ,so my aniety doesn't get the best of me and I'm just thinking its copd and I may need to use a inhaler when it gets bad. I see my primary dr. on Tues. for my hosp follow-up and see what he says. I don't even know what tracheal stenosis is :predrage:

[Sangye]

My x-rays looked only slight off even when my lungs were completely filled with blood. The CT was horrible. That's happened repeatedly with me-- x-ray doesn't look so bad but CT tells the story.

[Sangye]

Feeling better today...other than sick to my stomach. Nothing wants to stay peaceably in my stomach today lol.
Are you taking an acid-blocker, Bob? Necessary with high-dose pred.

[annekat]

Sangye..I don't know what my problem is,all I know is something is definately not right but when they do x-rays and measure my air at room intake everything shows up fine. All my blood work comes back good (KNOCK ON WOOD!!!)
Surely if I my lungs were hemorrhaging it would show up in some x-rays-right? I'm am trying to stay very calm ,so my aniety doesn't get the best of me and I'm just thinking its copd and I may need to use a inhaler when it gets bad. I see my primary dr. on Tues. for my hosp follow-up and see what he says. I don't even know what tracheal stenosis is :predrage: Debra, my pulmonologist didn't think there was much wrong with me, my breathing function test was OK, etc., and there wasn't much evident on the x-ray. It took a CT scan for them to see the lung involvement that turned out to be Wegs. I wasn't exactly hemorrhaging, but there were numerous cavitary lesions, and I was starting to cough up a little blood. I don't think I have tracheal stenosis, narrowing of the trachea, and those who do can tell you more about it. What breathing problems I currently have are, I think, caused by the discharge from my sinuses collecting in my trachea and bronchial tubes. When I manage to cough it up, my breathing clears. It has all gotten a lot better, so that I rarely have that feeling of not being able to get enough air. I sure hope you don't have stenosis, but I think there is a whole section of posts on it somewhere on the forum.....

[Psyborg]

I don't really have a proper stomach...so prednisone has never caused much upset.

[Sangye]

I don't really have a proper stomach...so prednisone has never caused much upset.
But prednisone still does damage. Not all damage is symptomatic early on and it may be the reason why you're finally having symptoms.

[pberggren1]

Trust me Bob. You have to be taking something while on any dose of pred to protect your stomach.

[Dryhill]

Bob, Sangye and Phil are right pred's got some nasty side effects.

Jim

[Al]

Sangye..I don't know what my problem is,all I know is something is definately not right but when they do x-rays and measure my air at room intake everything shows up fine. All my blood work comes back good (KNOCK ON WOOD!!!)
Surely if I my lungs were hemorrhaging it would show up in some x-rays-right? I'm am trying to stay very calm ,so my aniety doesn't get the best of me and I'm just thinking its copd and I may need to use a inhaler when it gets bad. I see my primary dr. on Tues. for my hosp follow-up and see what he says. I don't even know what tracheal stenosis is :predrage:Debra, unless you have clear-cut granulomas or other masses, the CT scan (or xrays) will not indicate too much. it might indicate "gound-glass infiltrates" or similar, but it will have nothing to say about hemorrhaging. For that, a bronchoscopy is usually required, for a visual confirmation.

Al

[Al]

I don't really have a proper stomach...so prednisone has never caused much upset.Bob, Pred is still a nasty drug, even if it doesn't make like immediately miserable in a direct way. It still seems suspect to me.

Al

[Psyborg]

Just weird that this just started. I've been on a bouncing dose for 2 years now, but the stomach issues just started in the last month or so. I'll follow up with my doctor.

[Sangye]

Debra, unless you have clear-cut granulomas or other masses, the CT scan (or xrays) will not indicate too much. it might indicate "gound-glass infiltrates" or similar, but it will have nothing to say about hemorrhaging. For that, a bronchoscopy is usually required, for a visual confirmation.

Al
Al, CT scans show hemorrhaging. That's how my case was dx'ed initially. CT has always been accurate in showing if my lungs are bleeding. I only had a couple of small granulomas several years after dx. I'm not a granuloma-maker.

[Al]

Al, CT scans show hemorrhaging. That's how my case was dx'ed initially. CT has always been accurate in showing if my lungs are bleeding. I only had a couple of small granulomas several years after dx. I'm not a granuloma-maker.Sorry-You are right. In my case, however, the CT scan did not show hemorrhaging until the blood was gushing, and it showed clear after the PEX had done its magic, so the scan had neither predictive value nor suggestions how to proceed. I do know that the pulmo was somewhat surprised that there were no granulomas, but "only" ground-glass infiltrates. (It is, by the way, the no-granuloma situation along with P ANCA and only minor upper airway involvement that leads me to favor an MPA diagnosis rather than classic WG,)

Al

[Debbie C]

Al. what is groung-glass infiltrates ? Sorry to keep asking questions..maybe you should just write a book on this stuff( one in plain english so I can read and also show my docs !)

[Al]

Al. what is groung-glass infiltrates ? Sorry to keep asking questions..maybe you should just write a book on this stuff( one in plain english so I can read and also show my docs !)
Ground glass infiltrates, or ground glass opacities, is one description of lung xray presentation. On the scan, presentation is kind of hazy, like ground glass (or wax paper). This is pretty nondescript, and can suggest a multitude of diagnoses. Generally, though, it indicates either inflammation, or interstitial lung disease, or both. For me, these "hazy" possibilities surely delayed my WG diagnosis by several months, as the pulmos involved assumed ILD, rather than inflammation, and went barking up that tree for a long time before I decided the raccoon was up another tree altogether.

Al

[Debbie C]

Thanks again Al for explaining things to me.:cool:

[gunnyl]

I took my last pred about 2 weeks ago and I hit the wall the last couple days. I think it is finally getting out of my system and man the fatigue reminds me of when I was sick and starting chemo. When I got to 5 mg my doctor brought me down 1mg at a time. I pushed a little faster than her instructions and I am off now but it's not been easy by any means. Hoping the fatigue will wear off in the next week so I can get back to myself and start working out again. Don't have the strength right now. I was good for the first week with no pred but I am really feeling the effects now. I won't ask how long it takes because everybody's body is different and I have bounced back pretty quick through most of my transitions.
I'm down to 189 lbs, was at about 210 when this whole thing started. Never gained any weight from the pred so that was a good thing. I am only taking MTX and Folic Acid now...was able to ditch the BP meds too! Since my weight dropped so did my BP.

[pberggren1]

You may have weaned too fast gunnyl.

I'm curious where DFW is?

[gunnyl]

pberggren1, I did wean off faster than I was supposed to and I knew I would pay for it but I have always been about pushing myself past limits. I can deal with the fatigue for a few days! I have been juicing and eating a lot of organic fruits and vegetables and my labs have been clean for several months now. I take my meds but I add to the recovery and my nefrologist is so impressed he went out and bought a juicer!
DFW is Dallas/Fort Worth in Texas.

[pberggren1]

WOW! Maybe I should dig out my juicer. I got one a couple of years ago but have barely used it because I've just been too sick.

I have learned not to push myself too much because then that is when I get sick again. I hope you don't have to go back on the pred.

[Sangye]

I took my last pred about 2 weeks ago and I hit the wall the last couple days. I think it is finally getting out of my system and man the fatigue reminds me of when I was sick and starting chemo. When I got to 5 mg my doctor brought me down 1mg at a time. I pushed a little faster than her instructions and I am off now but it's not been easy by any means. Hoping the fatigue will wear off in the next week so I can get back to myself and start working out again. Don't have the strength right now. I was good for the first week with no pred but I am really feeling the effects now. I won't ask how long it takes because everybody's body is different and I have bounced back pretty quick through most of my transitions.

Very bad idea. It's not just ordinary fatigue, it means your adrenals aren't kicking in. If a pred wean is done correctly then you shouldn't notice anything when you stop. I toughed it out for 2.5 years after I went off pred. (I didn't know better) And now I'm having major problems getting off of it.

[annekat]

Very bad idea. It's not just ordinary fatigue, it means your adrenals aren't kicking in. If a pred wean is done correctly then you shouldn't notice anything when you stop. I toughed it out for 2.5 years after I went off pred. (I didn't know better) And now I'm having major problems getting off of it. I'm curious why gunnyl was OK for the first week after weaning pred too fast. Does it stay in your body that long when you quit?

[pberggren1]

I think so drz. Usually if you are tapering too fast it hits you in 2 or 3 days.

[Sangye]

I'm curious why gunnyl was OK for the first week after weaning pred too fast. Does it stay in your body that long when you quit?
Pred is not like most drugs, where the imbalances caused by the drug stop once the drug is stopped. The actual pred leaves the body within a day, but the depletion from it can persist for years (or indefinitely). This is the case even if the adrenals come back on as expected. There is a big difference between medically functioning adrenals and subclinical adrenal exhaustion.

In gunnyl's case, it can take a few days to really hit bottom if the pred is too low or you taper off it too fast. I'm sorry to say that denial is a big problem with most of us, especially when it comes to getting off pred. (I include myself in this, since I've really screwed myself up more than once when rushing a taper.) Fatigue from an overly fast taper can hit you like a brick, or it can gradually increase each day until it suddenly becomes quite obvious. I suspect that's what happened. It might be that gunnyl's adrenals were able to kick in enough to carry him for a few days, but not enough to withstand a week of life's stresses.

[pberggren1]

Thank you very much Sangye for clarifying this. I know I have been in denial about many things about this darned disease for sure. But now I will not taper fast, that is for sure. I have come to the realization that I may never get off pred and that does not make me upset any more.

[drz]

It might also explain why stress can so easily over load us or exhaust us or even bring on a flare. Our adrenals can't keep up with the stress we feel.

[Sangye]

It might also explain why stress can so easily over load us or exhaust us or even bring on a flare. Our adrenals can't keep up with the stress we feel.
That is exactly right, drz. MDs don't acknowledge subclinical function of the adrenals (or anything else, actually) so they are unlikely to figure this out. Dysfunction is a gradual process in most cases. Even something like a blood clot that makes its presence known acutely has usually been quite awhile in the making.

[annekat]

That is exactly right, drz. MDs don't acknowledge subclinical function of the adrenals (or anything else, actually) so they are unlikely to figure this out. Dysfunction is a gradual process in most cases. Even something like a blood clot that makes its presence known acutely has usually been quite awhile in the making. Sangye, could you define "subclinical" in this context? I found one definition for it that didn't quite fit. Thanks.

[Sangye]

Subclinical means lab tests are within normal medical range. In holistic medicine we look at the usual medical range but we also have a much narrower range for most lab tests to assess the true function of the organ/system. So, a test that is at the top or bottom of a medical range might be way out of holistic range. Basically we're looking for disease as it forms, long before it even turns into a diagnosable disorder. Medicine says if your lab tests are fine and you don't have obvious symptoms then you're healthy, as if disease magically appears one day without warning.

In addition, medical lab tests are not the only way to assess health. In holistic health we use a much wider range of tests, which allows us to pick up imbalances early on. Finally, many medical lab tests have been used and interpreted by holistic doctors for some time but are only now being used by medical doctors to evaluate for disease. Homocysteine levels are an example of this. Holistic docs have been saying for many years that this is a better indication of heart health than cholesterol screening. MDs are just starting to use it routinely (But they're not giving up the cholesterol myth-- big bucks to be made with cholesterol-lowering drugs).

[annekat]

So, by not acknowledging subclinical functioning of the adrenal glands, are you saying that the glands are functioning at a lower than optimal level, but the MDs are treating them as if they are functioning normally? Because the test results say so to them? But a holistic doc would be somewhat alarmed or concerned at that level that the MDs think is OK? I guess that is what you are saying..... makes sense to me.

[Sangye]

Yes, that's it. The majority of Westerners have subclinical adrenal exhaustion to some degree, but endocrinologists would disagree since their labs are likely within medical range. It's the number one thing I treated in practice.

[annekat]

Yes, that's it. The majority of Westerners have subclinical adrenal exhaustion to some degree, but endocrinologists would disagree since their labs are likely within medical range. It's the number one thing I treated in practice. Thanks very much. Makes me want to look into seeing a holistic doc. Not specifically for Wegener's, but for some reason that may come along.

[pberggren1]

Thank you very much Sangye for shedding more light on this already complicated topic.

I strongly suggest to everyone having a good holistic doc on your team. I see a naturopathic doc from time to time and I even convinced my mom to go see her for some accupuncture. I also go see a chiropractor on a regular basis. I treat him like I treat oxygen. I could not live without either.

I personally would never go on cholesterol lowering drugs. I would far rather clean up my diet. My cholesterol has never been anywhere near being high though. I have it checked each year but I think I will ask my doc to do the homocystien one as well.

[annekat]

I need a clarification on docs. Are a holistic doc and a naturopathic doc two different things, or is a naturopathic doc one kind of holistic doc? If the latter, what are other kinds of holistic docs? Are chiropractors considered holistic docs?

[Sangye]

I just explained it to a friend yesterday-- very common confusion!

Holistic medicine = an umbrella of many different treatments and remedies that don't use drugs or surgery. Views the person as a whole, instead of just looking at one symptom, organ, system, etc....

Holistic doctor = any physician trained and licensed in some form of holistic medicine. Examples are chiropractors and naturopaths, as well as acupuncturists who have a doctorate degree (not very common)

Chiropractic physician/ Chiropractor = a physician with a doctorate degree in Chiropractic. DC degree. Trained and licensed to diagnose all illnesses, but cannot directly treat all illnesses. (ie, They can't treat cancer but can provide nutritional and other forms of support for someone with cancer). Trained to work on the spine, extremities, soft tissue and nutrition. Some techniques are more involved than others and use advanced clinical nutrition, craniosacral work, acupuncture and much more. States have varying laws governing the scope of practice, but in most states chiropractors are considered primary care doctors.

Naturopathic physician/ Naturopath = a physician with a doctorate degree in Naturopathic medicine. ND degree. They are trained and licensed to diagnose all illnesses, to treat using a wide variety of holistic remedies, as well as to prescribe pharmaceutical drugs. Only 16 states recognize naturopathy, which is a real shame.

Homeopathy/ Homeopathic medicine = a type of holistic remedy. It uses ultra-diluted substances to treat physical, chemical and emotional imbalances. Many holistic doctors use homeopathy. A licensed practitioner is called a "homeopath." A homeopath is a holistic doctor who uses homeopathy, a holistic remedy.

[Sangye]

I found this info on a website of a naturopathic doctor here in Maryland. It's helpful for those who might go looking for one. Since naturopathy isn't licensed in Maryland, an ND can have a practice but cannot diagnose or treat disease. They can educate patients about illnesses, though.

Caution: Naturopathic Physicians are currently not licensed in the state of Maryland and as such, anyone can call themselves a "Naturopath" or a "Naturopathic Doctor". There is a group of practitioners in the United States who call themselves naturopaths or naturopathic physicians that do not have the formal training necessary to obtain licensure or membership in the American Association of Naturopathic Physicians (http://www.naturopathic.org/) (AANP). Some may be certified by organizations that sound official or similar to the AANP. Certification is not the same as licensure. These "doctors" are not regulated. As with all health care choices, educate yourself. It is important to check the education and professional references of your doctors.

[annekat]

Thanks very much for that explanation and clarification, Sangye! :smile1:

[Psyborg]

I'm officially having a flare again, saw Dr Villa Forte yesterday. Oddly feeling a bit better the last 4 days...so Prednisone is doing it's thing. She surmised that it's just time for another round of RTX and has it ordered. Hoping that Immuran will keep me in remission alone this time, but pretty much know what I'm looking for now. I misplaced the first couple symptoms thinking they were related to citralopram (Night Sweats, and Fatigue) so really this started the beginning of April. So lowering down to 0 on ye olde pred was probably not a good combo with that.

[Pete]

Bob,

Hope you continue to improve. Night sweats and fatigue are my symptoms of the onset of a flare also. I pay really close attention to those.

Seeing Dr. Villa-Forte at the end of June. Doing well so far at 10 mg/day of pred and 50 mg/day of cytoxan. Off bactrim altogether for now with no adverse effects. I will stay at these levels of medication until I see Dr. Villa-Forte. Hoping the upward trend continues for me.

Pete

[Debbie C]

I just took my second dose of 15mg. MTX on Tues...didn't do so well as last .I have been having, not a headache but my head hurts,and having more stomach issues. I think I'm going to get my blood work done tommorrow. I was gonna want for my 3rd dose my I just don't feel well. Going down to 7 mg. of pred on Sunday

[Dryhill]

I'm officially having a flare again, saw Dr Villa Forte yesterday. Oddly feeling a bit better the last 4 days...so Prednisone is doing it's thing. She surmised that it's just time for another round of RTX and has it ordered. Hoping that Immuran will keep me in remission alone this time, but pretty much know what I'm looking for now. I misplaced the first couple symptoms thinking they were related to citralopram (Night Sweats, and Fatigue) so really this started the beginning of April. So lowering down to 0 on ye olde pred was probably not a good combo with that.

Bob, I hope you get RTX soon and that you go into remission quickly.

Jim

[annekat]

I just took my second dose of 15mg. MTX on Tues...didn't do so well as last .I have been having, not a headache but my head hurts,and having more stomach issues. I think I'm going to get my blood work done tommorrow. I was gonna want for my 3rd dose my I just don't feel well. Going down to 7 mg. of pred on Sunday I just started my MTX this week... seemed to make me drowsy, which was one of the side effects listed on the info sheet. I thought you were starting at 7.5mg? I'm on 10mg/wk and 10mg daily of pred. I have been tapering CTX for the last few months and am going to stay on 25mg. for a couple weeks along with the MTX. I found some posts in the archives where people have done this, and also some medical literature online indicating it is OK. Other than the drowsiness, no real nausea but a little more indigestion than usual.

[pberggren1]

I hope the Wegs gets under control fast for you Bob. Will u stay on Imuran while on rtx infusions or just pause it?

[Psyborg]

RTX works like a champ for me, so I'm pretty confident it should again. I think I'll stay on Imuran with the RTX as she kept me on MTX with it last time. My only concern is that maybe Imuran isn't strong enough to keep me in remission by itself. Not sure what to think on that...MTX isn't a great one for me due to the pre-existing liver issues. It never spikes my enzymes, but they do weird stuff constantly.

[pberggren1]

How much Imuran are you on Bob? I'm on 150.

[Psyborg]

150 here as well.

[Psyborg]

Back up to 40mg...I hope they finally get me scheduled for the RTX infusion this week. I know the insurance finally approved it. I can say for sure now that the Pred screws up my eyes. Yesterday I noticed I can't see red clearly out of my right eye. Fine from the left though...weird. My head feels groggy constantly at this point too.

[mishb]

Come on RTX hurry up

Even though we don't wont Bob to see red, he may do so if he has to continue this way much longer :biggrin1:

I hope things improve for you soon Bob

[Psyborg]

Finally got the RTX yesterday. Insurance company did everything dumb they could think of I think :p

Got home...exhausted. Thought I'd try to stay up late enough to not wake up at 3am again. Then the house caught on fire...entertaining evening. I'm a little worried about my fingers I burnt right after a immune suppression.

No serious damage or injuries FYI, but some blisters on my fingers where hot plastic burned me through my gloves as I ran a burning fan out of the house.

[annekat]

Yikes! I'm glad the fire wasn't serious, but what a night for it to happen, right after your first RTX. I hope the fingers heal soon and aren't much of a problem despite the immune suppression.

[mishb]

Wow Bob, you are certainly having a fantastic time of things lately ....NOT
Goodness. I guess it was lucky that you decided to stay up.
I'm glad everyone and everything is okay......and I'm also glad that you finally received the RTX

How about trying for a nice, easy, uneventful, next few weeks...I think you are due for that :thumbup:

[pberggren1]

Bob, we have enough fire to play with......geesh......lol.

[Sangye]

Oh my gosh, Bob. I hope everything is okay. For Pete's sake, a house fire.

Have your fingers blistered?

[Psyborg]

Yeah, everything is ok. Just a few blisters on the back of my fingers where the plastic melted onto the gloves I was wearing. Overall I was lucky that I was home or we'd have lost the house most likely.

[Sangye]

Do you know what caused the fire?

Did you inhale smoke or chemical fumes? I hope your lungs are okay.

[Psyborg]

A fan in my daughters room. Found out after the fact that it was recalled last year for causing fires. Not sure how anyone would ever know such a thing though, it's not like you'd keep track of registration on a $15 fan :/

Yeah I did get some fumes, but so far everything seems ok. I decided to get out when the fumes started getting thick.

[pberggren1]

I'm just glad you and your family are safe.

[Psyborg]

Thanks guys...that was one rough day :) I appreciate the kind thoughts.

[Sangye]

I always wonder about recalled products like that. Some stores put up notices of recalls but they are small, and who would check it every week? I'm glad you and your family are okay, Bob.

[Dryhill]

Bob, I know you were having trouble seeing the colour red before the RTX, but having a fire seems a drastic way of checking if there was any improvement. Seriuosly I am glad you came out of it as well as you have.

Jim

[Sangye]

I wonder if he saw the firetrucks. :wink1:

[Dryhill]

I wonder if I could use that as an excuse for not stopping at a set of traffic lights? Trouble is it might scare my passengers too much, mind you it might sober up the drunks.

Jim

[Psyborg]

Definitely saw fire trucks :) And I think I've completely derailed the thread. Sorry about that guys. Back onto my taper. The nurse suggested starting the taper again, but that once down to 5 to take it extremely slow as low dose prednisone keeping a flare in check is better than completely depleting the B-Cells if we don't need to. I really want off Prednisone, but that does sound pretty reasonable. I'll flow up with the Doctor next full follow up. I figure it will take me a good while to taper down to 5 anyway.

[drz]

Definitely saw fire trucks :) And I think I've completely derailed the thread. Sorry about that guys. Back onto my taper. The nurse suggested starting the taper again, but that once down to 5 to take it extremely slow as low dose prednisone keeping a flare in check is better than completely depleting the B-Cells if we don't need to. I really want off Prednisone, but that does sound pretty reasonable. I'll flow up with the Doctor next full follow up. I figure it will take me a good while to taper down to 5 anyway.

My Wegs consultant and my Wegs treating doctor both agreed it would be safer for me to remain at 5 mg while on the azathioprine in order to help prevent another flare so i have been there for several months and no flares either. To get down to 5 mg I was going down a 1/4 mg every 10 days or so--very slow but had no serious problems with taper either.

[Dryhill]

Definitely saw fire trucks :) And I think I've completely derailed the thread. Sorry about that guys. Back onto my taper. The nurse suggested starting the taper again, but that once down to 5 to take it extremely slow as low dose prednisone keeping a flare in check is better than completely depleting the B-Cells if we don't need to. I really want off Prednisone, but that does sound pretty reasonable. I'll flow up with the Doctor next full follow up. I figure it will take me a good while to taper down to 5 anyway.

I am reducing to 7.5mg per day by taking 10mg and 7.5mg on alternate days, and doing this for three weeks. My doctor increased my weekly doseage of Methotrexate from 20mg to 25mg to help compensate for the reduction in Pred.

Jim