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Hammy8241
05-10-2011, 08:47 PM
Of all the meds I have to take, even taking into account their side-affects, it’s the taking of one Alendronic Acid pill, once a week which fills me with dread. It’s a pill which I strongly resent, an intrusion into my lifestyle, an inconvenience, despite it’s benefits to me.

Yes, I know it’s just a pill, not even a big pill, just a quick swallow and it’s all over………..but it’s not!!

· You have to drinks loads of water with it.
· It has to be eaten first thing in the morning on an empty stomach.
· You have to wait 30 mins before you can pass anything else down your throat.
· You have be sitting/standing up for those 30 mins which means you can’t just wake up, take the pill and go back to sleep…… Oh no!

So. You have to wake up, get out of bed, drink loads of water, gag on the pill as it’s not coated , drink some more water and then prop yourself up for half an hour waiting and waiting for that cup of TEA!! How can man in this civilised world be expected to be able to do anything in the morning without a cup of Tea! For 30 mins the only reply to a cheerful wife’s questions is a sad ‘grunt’ – conversation is dead! And what about food!!!! Who in their right mind (or on pred) waits 30 mins before slobbering over breakfast. Breakfast mean your other meds which means life. Easy .

Whoever made/discovered this pill must really hate Englishmen! I would love to find the inventor and do something really nasty to them – tie them to a chair and make them sit and watch the whole series of ‘Dallas’ or something equally nauseating.

Of all that WG throws at me, this is the one thing which I hate. Even the Mtx injection is a joy in comparison.

Anyway rant over, Is there any meds you hate?

Geoff
05-10-2011, 10:11 PM
Whoever made/discovered this pill must really hate Englishmen!

I agree totally with you Old Chum. Having the Butler under ones feet for those 30 minutes, hovering with the cup of Earl Gray is all too much. It's just not Cricket!!

Sangye
05-10-2011, 11:37 PM
To me, nothing compares to pred. Even rtx, which leaves me trembling with weakness for a month and a half doesn't compare to pred. Stinkin' pred changes everything on the outside (in unpleasant ways) and everything on the inside (in unpleasant ways) and everything in the mind (in unpleasant ways). I can put up with just about anything, but the side effects and damage from pred really do me in.

There. That's my rant. :flapper:

delorisdoe
05-10-2011, 11:47 PM
To me, nothing compares to pred. Even rtx, which leaves me trembling with weakness for a month and a half doesn't compare to pred. Stinkin' pred changes everything on the outside (in unpleasant ways) and everything on the inside (in unpleasant ways) and everything in the mind (in unpleasant ways). I can put up with just about anything, but the side effects and damage from pred really do me in.

There. That's my rant. :flapper:

A friend of mine was just put on 50mg of prednisone for a poison ivy rash. The pharmasist was shocked at the dose. He does not believe me that it will effect his insides at that dose.

Jack
05-11-2011, 12:03 AM
An admission - I have been taking this stuff for a couple of years now in spite of suffering from most of the contra conditions mentioned on the instructions such as difficulty with swallowing, stomach trouble etc. I take it after I get up in the morning along with all my other pills, breakfast and coffee. However, I have never noticed any of the side effects warned of so I don't suppose it is doing me any harm.

Chris G
05-11-2011, 12:39 AM
I'm SO glad someone brought this up! I filled the darn Alendronic Acid prescription over a month ago, and have yet to take a pill. Every morning, I feel guilty as I glace at the untouched box on my kitchen counter, while preparing my morning coffee. How can I be expected to choose a pill over my COFFEE?!?!? The pill (and no doubt, my bones) are losing the battle.

Seems Jack has thrown caution to the wind, and he's still standing.......So, what would happen if I take the pill AND have my coffee (along with the required water)??? Anyone know?

Sangye
05-11-2011, 12:46 AM
.So, what would happen if I take the pill AND have my coffee (along with the required water)??? Anyone know?
The universe as we know it would cease to exist. And we would have you to thank. If we could find you in all the non-existence, that is.:wink1:

Chris G
05-11-2011, 01:21 AM
Damn, that's a heavy burden you just dropped on me........thanks a lot.

I mean........would the stupid drug still work if I take it with my coffee?

Jack
05-11-2011, 02:14 AM
Everything works better with coffee! :wink1:

As far as I can tell, most of the precautions are to minimise reflux problems but taking with food reduces the absorption so I would have thought that coffee was ok.

Lightwarrior
05-11-2011, 02:27 AM
To me, nothing compares to pred. Even rtx, which leaves me trembling with weakness for a month and a half doesn't compare to pred. Stinkin' pred changes everything on the outside (in unpleasant ways) and everything on the inside (in unpleasant ways) and everything in the mind (in unpleasant ways). I can put up with just about anything, but the side effects and damage from pred really do me in.

There. That's my rant. :flapper:

They are taking me down aggressively on my pred and it is making me crazy (okay, I'll admit I'm already crazy so correct verbiage would be crazier). I am going down 1 mg a week. I am at 6mg this week and all of my joints feel so raw and hurt. My Rheumy gave me vicodin with a percocet supplement, it doesn't touch the pain and I can't work with my mind "foggy" from pain killers. So I have to say my rant would be prednisone. Arghhhhhhhhhhhhhhhhhhhh

NicShaf
05-11-2011, 03:22 AM
I agree that Pred is by far the worst I have to deal with. Wegs is hard enough, but having to look and feel the way that Pred makes you feel just adds insult to injury.

Psyborg
05-11-2011, 03:29 AM
They are taking me down aggressively on my pred and it is making me crazy (okay, I'll admit I'm already crazy so correct verbiage would be crazier). I am going down 1 mg a week. I am at 6mg this week and all of my joints feel so raw and hurt. My Rheumy gave me vicodin with a percocet supplement, it doesn't touch the pain and I can't work with my mind "foggy" from pain killers. So I have to say my rant would be prednisone. Arghhhhhhhhhhhhhhhhhhhh

1MG a week at that level seems awfully aggressive. My doc has me going 1mg a month (though I do feel I could go a bit faster), but when I went faster I definitely got pain after the reductions.

delorisdoe
05-11-2011, 03:42 AM
many years ago when i was young i got sick of taking prednisone and cut my self to 10mg every other day for 3 days and then none. cold turkey. aparently that is not good and i am lucky to be alive. remember i was young.

gurinbasra
05-11-2011, 03:42 AM
Tuesdays are my Alendronate days and it's definitely the most inconvenient med to take but yet the easiest on my system. I pick Tuesday's because I usually work then and I just get up, take the pill with a reasonable amount of water, then just take a really long hot shower, dry off my hair, put on some makeup and before you know it, about 40 mins have passed by. Then comes the morning tea and that wondeful Prednisone! Must admit though, if I wasn't getting up to go to work, I wouldn't want to shower right away. I think I have a harder time revving myself up with a big chunk of tummy fat in one hand and the injection of Mtx in the other!

JanW
05-11-2011, 04:38 AM
The reason you don't eat until 30 minutes after the alendronate is that it is so poorly absorbed by the body (doc said something like 20 percent, I think) that they don't want anything else in your stomach. I take mine on Saturdays (don't drink nearly as much water as they suggest) and have suffered no ill effects so far. I take it right before I get into the shower so by the time I shower and dress I can get coffee as usual.

Sangye
05-11-2011, 04:54 AM
They are taking me down aggressively on my pred and it is making me crazy (okay, I'll admit I'm already crazy so correct verbiage would be crazier). I am going down 1 mg a week. I am at 6mg this week and all of my joints feel so raw and hurt. My Rheumy gave me vicodin with a percocet supplement, it doesn't touch the pain and I can't work with my mind "foggy" from pain killers. So I have to say my rant would be prednisone. Arghhhhhhhhhhhhhhhhhhhh
WHY are they doing that to you, LightWarrior? There is no reason to rush tapering like that and have you in so much pain you need vicodin and percocet. Rushing a taper can cause Wegs to flare and it's extremely hard on the adrenals. Grrrr.

Hammy8241
05-11-2011, 05:03 AM
.... shower, dry off my hair, put on some makeup !

;spose I could try this but not sure what my wife would say.lol

I've always injected my Mtx in my thighs - alway thought it would get lost if i tried the tummy:razz:I'll give it a go - big area!

Trouble is with the ancilllary drugs like Alendronate, folic and calcium, you don't/won't know if they are doing good until its too late. With the main two you know with days or maybe a week.

Lightwarrior
05-11-2011, 05:19 AM
WHY are they doing that to you, LightWarrior? There is no reason to rush tapering like that and have you in so much pain you need vicodin and percocet. Rushing a taper can cause Wegs to flare and it's extremely hard on the adrenals. Grrrr.

Why??? I think they hate my stinking guts (okay that's the pred talking) It is because I started having 4+ pitting edema bilateraly up past my knees and my rheumy said that was a side effect of pred. I felt like a giant swollen and unable to walk or move. Before lowering the pred this fast they tried lasix, didn't help added zaroxolyn (metolazone) and increased my PO K+ to 60 a day and my K+ still dropped to 2.8, which our wonderful lab didn't report to my Doc for 4 days. If I can't handle the drop then he said we will slow down to 1mg a month. I'm about ready to cry uncle.

(http://www.google.com/url?url=http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000658/&rct=j&sa=X&ei=So_JTZC0IPTRiALhtcnwBw&sqi=2&ved=0CBwQ4wEwAA&q=zaroxolyn&usg=AFQjCNFrS4SyVrzmLTkI4MOrDO54ixzT1Q)

Sangye
05-11-2011, 05:22 AM
From a holistic point of view it's better to inject into your thighs if possible. There are neurological points that correlate with the adrenal glands on the abdomen. When I was on Lovenox (injectible heparin) for 2.5 years I had to inject into those sites a lot. I still have painful nodules there. I think that may be one reason why my adrenals have not recovered.

pberggren1
05-11-2011, 05:23 AM
I for sure hate pred. The mind games it plays, the puffy face and other areas, pressure in the head, wanting to eat all the time, weight gain, it all sucks.

I also hate ctx. Mainly because of my bladder issues now.

And Voriconazole as well. I will be off it in 2 days! YIPPEEEEEE! And hopefully never have to go on it again.

Lightwarrior
05-11-2011, 05:25 AM
If a man is openly expressing an opinion, and there's no woman within earshot, is he still wrong?
Hammy the answer to this question is obviously yes. (LOL) :lol:

Sangye
05-11-2011, 05:26 AM
Why??? I think they hate my stinking guts (okay that's the pred talking) It is because I started having 4+ pitting edema bilateraly up past my knees and my rheumy said that was a side effect of pred. I felt like a giant swollen and unable to walk or move. Before lowering the pred this fast they tried lasix, didn't help added zaroxolyn (metolazone) and increased my PO K+ to 60 a day and my K+ still dropped to 2.8, which our wonderful lab didn't report to my Doc for 4 days. If I can't handle the drop then he said we will slow down to 1mg a month. I'm about ready to cry uncle.

(http://www.google.com/url?url=http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000658/&rct=j&sa=X&ei=So_JTZC0IPTRiALhtcnwBw&sqi=2&ved=0CBwQ4wEwAA&q=zaroxolyn&usg=AFQjCNFrS4SyVrzmLTkI4MOrDO54ixzT1Q)
Oh LightWarrior, I don't think you should do this to yourself. :sad: I have swelling like that and know how bad it can be. However, if you irritate the adrenal glands you will also cause huge swelling. Take it slow, let your body adapt and you'll get there. Remember, you gotta sneak away from the Wegs dog. :wink1:

Lightwarrior
05-11-2011, 05:30 AM
Oh LightWarrior, I don't think you should do this to yourself. :sad: I have swelling like that and know how bad it can be. However, if you irritate the adrenal glands you will also cause huge swelling. Take it slow, let your body adapt and you'll get there. Remember, you gotta sneak away from the Wegs dog. :wink1:

I've tried hard to keep that dog asleep and this seems counter-intuitive to that process. I'm at 6mg now, should I fight to do 1mg a month?

ArlaMo
05-11-2011, 05:33 AM
I'm just going to ditto Sangye. I hate pred...

Sangye
05-11-2011, 05:48 AM
I've tried hard to keep that dog asleep and this seems counter-intuitive to that process. I'm at 6mg now, should I fight to do 1mg a month?
If there is no compelling reason that requires tapering that fast, then it seems it's not worth the risk to do it. When I was originally treated with pred and ctx my lousy rheumy speed-tapered me and that kept the Wegs dog awake. It took 4 more years to get it to sleep and my adrenals never did come back online. You've been on it for awhile. Dr Seo always emphasizes how you have to taper it very slowly when you've been on it for an extended amount of time.

Chris G
05-11-2011, 07:00 AM
Dr Seo always emphasizes how you have to taper it very slowly when you've been on it for an extended amount of time.

How long is an extended period of time???

freakyschizogirl
05-11-2011, 07:05 AM
I HATE Pred!!

Never wanted to take Steroids but its that or die right? I hate what it does to my body and to my mind. I HATE Pred head, Pred rage and Pred moon face.

I used to be fairly intelligent, well i could construct whole sentences without long thoughful pauses, saying "oh, thingy bob" and could type like a "normal" person instead of mixing my words and spelling things phonetically instead of literally.

Widthofacircle
05-11-2011, 07:20 AM
Hi All
I was diagnosed 2 years ago and have been down the cyclo, pred, cellcept roads and indeed still am but isn,t it amazing that, similar to others here it,s the calcium pill that gets me. I am in Ireland and this pill is known as Fosamac here. Same requirements for taking in the morning, loads of water, stay upright etc.
However I find Pred really scary and thankfully am on low dosage now, 5mg, so have slowly but surely been returning to normal features as distinct from the stranger in the mirror I had become while on high dosage

Jack
05-11-2011, 07:20 AM
Pred seems to provoke the same reaction from us all. It keeps us alive and can reduce many symptoms, but at one hell of a price in long term health. Its side effects have reduced me to a cripple! :angry:

Sangye
05-11-2011, 07:20 AM
Sam, I hear you. Stinkin' pred. :thumbdn:

ChrisG, once someone has been on pred for a year or more, it's much harder to taper.

Sangye
05-11-2011, 07:25 AM
Widthofacircle, Fosamax is not calcium.

Widthofacircle
05-11-2011, 07:31 AM
Sangye
You are quite right. Just read the box. It,s 70mg alendronic acid as 91.37 mg alendronate ....and so on. I am not too well up in these matters but I do know it is to help stop damage to the bones caused by steroid usage and there is calcium in the bones, if you get my logic. Maybe it,s an Irish thing, hehe

Sangye
05-11-2011, 10:31 AM
LOL Interesting logic! :laugh:

drz
05-11-2011, 10:52 AM
I for sure hate pred. The mind games it plays, the puffy face and other areas, pressure in the head, wanting to eat all the time, weight gain, it all sucks.

I also hate ctx. Mainly because of my bladder issues now.

And Voriconazole as well. I will be off it in 2 days! YIPPEEEEEE! And hopefully never have to go on it again.

I am with you Phil on the Cytoxan cause of the repeated bladder infections and irritations and bottoming out on the
WBC and infections.

The Fosamax I don't mind too much but often forget to take it and then have to work at taking it the next day. I think my directions only say to drink 6-8 ounces of water or one regular glass. Then I stay up and do grooming and dressing routine and usually the half hour is up before I get ready to make breakfast anyway.

I find the pentamadine nebulizer meds the most hassle. It seem most of the time they screw something up and I have to either wait an extra half hour or hour while they get it sorted out. Twice i have had to come back the next day due to their screw ups. They have only got it perfect three times out of the ten times so far. They keep apologizing and have given me two free lunches of atonement, but I told the hospital apologist that I didn't want any more free lunches or apologies, I just want it fixed so it is done right according to the schedule. She called me today and assured me everything is set for my treatment tomorrow so we will see how it goes. Even when it is is done perfectly it still takes an hour so it is more time consuming. Good thing it is only every four weeks.

pberggren1
05-11-2011, 01:25 PM
I think once I get to a lower dose of pred, like 10 or 5, then I will quit the fosamax and just take my fish oil, calcium supplement, and strontium for bone support, and of course eating broccoli and spinach and romain and green peppers and onions and, well you get the picture.

vdub
05-11-2011, 02:30 PM
I think if I were taking alendronic acid, I would take it in the morn, and then cook a good breakfast while drinking warm water with a little bit of lemon. Cook the breakfast slowly and correctly while sipping the warm water and catching up on the morning news or reading e-mails that came in overnight. That should just about burn up the required 30 minutes, then hit the coffee while eating the great breakfast.

As far as i know, I don't think I have to taper of pred anymore. When I get done with it, I can just stop....

jeniban
05-11-2011, 02:42 PM
:predrage:i hated taking my weekly bone builder Actonel(risedronate sodium) so my Dr Changed it to a monthly dose. A lot less inconvenient.:biggrin1: The Pill i hate the most is pred. The jitters, unable to sleep, weight gain, Poor skin integrity, bruising and the reason i take Actonel, osteoporosis....:mad:

Lightwarrior
05-12-2011, 08:06 AM
If there is no compelling reason that requires tapering that fast, then it seems it's not worth the risk to do it. When I was originally treated with pred and ctx my lousy rheumy speed-tapered me and that kept the Wegs dog awake. It took 4 more years to get it to sleep and my adrenals never did come back online. You've been on it for awhile. Dr Seo always emphasizes how you have to taper it very slowly when you've been on it for an extended amount of time.

I went to my primary yesterday afternoon and then called my rheumy. He agreed to let me go back up to 7mg and then try tapering at 1mg a month. These last 7 weeks of 1 mg a week have been very tough on me. The people I work with say that I have been spinning. I hope I haven't pushed too hard. I wish I could retire and rest for a while.

Sangye
05-12-2011, 08:15 AM
That's a good idea, LW. I wish you could retire and rest, too. :sad:

drz
05-12-2011, 10:36 AM
I HATE Pred!!

Never wanted to take Steroids but its that or die right? I hate what it does to my body and to my mind. I HATE Pred head, Pred rage and Pred moon face.

I used to be fairly intelligent, well i could construct whole sentences without long thoughful pauses, saying "oh, thingy bob" and could type like a "normal" person instead of mixing my words and spelling things phonetically instead of literally.

I have often told people that i take "stupid pills" They make me look pregnant and make me stupid. That along with the "chemo brain" from the Rituxan IVs and Cytoxan make me feel fortunate that I still have enough cognitive function to be able to even log in here and type anything. Even before the WEGs I had lost 50 IQ points from hypoglycemic episodes so I must be getting close to zero I think.

Like my treating rheumatologist said-- prednisone (steroids) is a horrible drug to give you, especially at the dosages we had to give you, but without it you would be dead now. So we take it and get fat, moody and impaired in our functioning, but sometimes it makes us happy and keeps us alive, right?

Does this ever get any better

Sangye
05-12-2011, 10:46 AM
I don't get the good feeling from pred like many people. The high doses make me irritable and physically very weak. I hear people say they have a love-hate relationship with pred, but I can't find the love for it!

vdub
05-12-2011, 12:09 PM
I was on pred three times before being dx'ed. Each time was a relatively short duration, but semi-high dosage -- 60mg/day with a taper. Total time was about 2 weeks each time. It was good stuff during those times. I was higher than a kite, felt great, and totally awake for hours at a time. Each time I gained about 10 pounds, but then lost it in between each episode. At least that is how I recall it, but it was over the course of the past 3 years and my memory simply isn't the same -- neither is learning.

After my surgery and dx, I was put on dexamethasone. I don't remember how I felt when I was on it, because I was kind of in a "wide awake coma" if that makes sense. I was in the ICU for 2 weeks. I remained on dex for maybe 2 weeks after the surgery and then was switched to 30mg of cortef, which remains today.

HOWEVER, my cortisone is replacement stuff, so I don't know if it effects me different than others or not. I have so many drugs that I can't totally determine which ones are causing side effects or what the side effects even are. It might be that some of the aches and pains are caused by the wegs or maybe the mtx or maybe side effects. I do know this -- I can't remember much short-term stuff, some long-term memory is gone, I have lows and highs, I have days where I feel good and days that I don't, I don't learn as quickly as I used to, and I can be very aggressive (probably the testosterone). There is more, but, hey, guess what? I can't remember......

One thing that I haven't considered is that maybe I'm just a jerk.... Good possibility!

drz
05-12-2011, 01:56 PM
I find the pentamadine nebulizer meds the most hassle. It seem most of the time they screw something up and I have to either wait an extra half hour or hour while they get it sorted out. Twice i have had to come back the next day due to their screw ups. They have only got it perfect three times out of the ten times so far. They keep apologizing and have given me two free lunches of atonement, but I told the hospital apologist that I didn't want any more free lunches or apologies, I just want it fixed so it is done right according to the schedule. She called me today and assured me everything is set for my treatment tomorrow so we will see how it goes. Even when it is is done perfectly it still takes an hour so it is more time consuming. Good thing it is only every four weeks.

They screwed up today as usual even despite the phone call and efforts of two departments to make sure they had everything set up right. The respiratory department and pharmacy had both done their jobs well and doubled checked everything, but the admitting clerk at front desk had no clue. "Who are you, where do you go? what kind of treatment, I can't find your name on any appointment for today etc." She made three phone calls to get the info needed to check me in. I was more stressed than usual cause I really thought after they worked so hard last time that it might get done correctly this time so I was much more irate and complaining than before and demanded to talk to the CEO of the hospital. Their professional apologist for when they screw up was not working today so her assistant came to see me. She remembered me from some positive contacts years ago which might have helped and five minutes later I explained the history of my problems to the CEO who thanked me for the input and promised he would try get it fixed. He thought it was definitely a system problem, maybe problems in their computer scheduling system, or lack of training for the admission clerk but he said he would try get it resolved for my next visit in 4 weeks.

The pentamadine meds seem to have a bad taste and are a little irritating I think to the lungs, but its like the prednisone I guess as a necessary evil since I might need it to stay alive, as they think PCP would kill me if I got it.

marta
05-12-2011, 01:58 PM
Too funny vdub. Maybe I'm a jerk too. I'm hearing Milli Vanilli in my head "Blame it on the pred, weight keeps climbing, climbing...''

I don't like the alendronate because of the above noted restrictions - empty stomach, stay upright, loads of water..... but I also don't like the pred because of the metamorphosis that comes with it. Yeah I know it keeps us alive and all, but sometimes it feels like it's keeping someone else alive, a different creature that has taken over my body and mind. The cytoxin was a bit of a mind game too because of all the toxicity that comes along with it, "don't let children near it - even the residue", "toxic bladder" "toxic urine" (who knew I would one day take a drug that would render my urine into a weapon???)

MCC
05-22-2011, 08:18 AM
Hehe, I hated that pill too. I used to take it as soon as I woke up. Then I'd go for a shower, dry my hair etc, then it would be time for tea.

Chris G
05-23-2011, 09:11 AM
I FINALLY took my Fossamax. But I took it with water and my morning coffee. It's either that, or not at all, cause I can't function without coffee. I didn't die, or explode. Problem solved.

Sangye
05-23-2011, 09:26 AM
I didn't die, or explode. Problem solved.
ROTFL :laugh:

pberggren1
05-23-2011, 09:52 AM
After much consideration and talking with docs and holistic practitioners I have decided to go off Fosamax.

elephant
05-23-2011, 10:02 AM
I always drank coffee with my Fosamax. :w00t:

Lightwarrior
05-23-2011, 01:31 PM
I don't get the good feeling from pred like many people. The high doses make me irritable and physically very weak. I hear people say they have a love-hate relationship with pred, but I can't find the love for it!

Ditto, I can't find the love for it either.

MCC
05-23-2011, 05:47 PM
I FINALLY took my Fossamax. But I took it with water and my morning coffee. It's either that, or not at all, cause I can't function without coffee. I didn't die, or explode. Problem solved.

I think though that it basically doesn't work unless taken on an empty stomach...

Sangye
05-24-2011, 12:21 AM
ROTFL... Mandy. http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

Chris G
05-24-2011, 01:09 AM
I think though that it basically doesn't work unless taken on an empty stomach...

Fabulous......well I hope it does SOMETHING!

Eight oz. of water......nothing else to eat or drink, for one half hour. I downed the little white ball of dread, with 8 oz of water.....then by the time I brewed my coffee, 10 min had passed. I took a few sips, and tried to distract myself by hopping immediately into the shower.....another 5-10 minutes killed there....... I figure a few sips of coffee inside that 30 minute window can't do too much harm (yeah, ok, it was more than a few sips). But, at least I'm finally taking the damn thing........ While it sat on my kitchen shelf for over a month, I know for sure it wasn't working.

Sangye
05-24-2011, 01:24 AM
Omigosh Chris, that has me doubled over laughing. :lol:

ScreaminMeanie
05-24-2011, 07:26 AM
It's definitely the pred for me, too. When I first started on the higher dose (60 mg) last year, I felt SO much better immediately, but after a week of not sleeping, I wasn't loving it so much. Same thing with the solumedrol I've been getting with the rtx infusions - the first time I got a huge "high" from it, but the subsequent weeks, not so much. Also, there's such a noticeable crash from it. I get the awful intracranial pressure, too. Feels like my eyes are going to pop out and my head's gonna split open.

If there's any way I can make this glass half full, I'm hoping that this "pulsing" will help me start tapering off it. To be broached with my doc this week.......

Of course, I wouldn't mind getting off the mtx, either. I don't have super thick hair to begin with, and at least a third of it has fallen out. Evenly, so it doesn't look all "chemo-head" like when I was on ctx, but still. I hate it. I also hate giving myself shots. Even having been doing it for a couple months now, it still really squicks me out to stab myself with a needle.

Chris G
05-24-2011, 07:48 AM
Of course, I wouldn't mind getting off the mtx, either. I don't have super thick hair to begin with, and at least a third of it has fallen out. Evenly, so it doesn't look all "chemo-head" like when I was on ctx, but still. I hate it. I also hate giving myself shots. Even having been doing it for a couple months now, it still really squicks me out to stab myself with a needle.

I'll be doing my stabbing when i get home from work. It's beginning to gross me out too. Did your docs tell you how long you have to stay on the mtx? My 2nd of 2 rtx infusions is Friday - yours are finished, right?

ScreaminMeanie
05-24-2011, 08:12 AM
Yes, I did my fourth one on Friday. I see my doc this Thursday, and I'm going to ask what my prospects are for getting off at least one of them!

How are you doing? Have you noticed any improvement yet?

Chris G
05-24-2011, 09:55 AM
Yes, some improvement just in the last few days. For some reason Friday was a really bad day - very lightheaded, and no energy. Then out of the blue, Saturday was great (great by weggie standards). I felt good, and had a decent amount of energy. Yesterday, not as great - a little less energy, but still felt decent. Today, was also pretty good - my head was clear as a bell, and I was able to do my work without any trouble.

I don't see my docs til June 7. Let me know what yours tell you, so we can compare notes. What's your pred dose currently?
Damn! I just realized I haven't stabbed myself yet! I'm going upstairs to do the deed......grrrrrrr :mad1:

Sangye
05-24-2011, 10:24 AM
I'm glad you're feeling some improvement, Chris! :thumbsup:

ScreaminMeanie
05-24-2011, 11:22 AM
I'm on 5mg pred. When's your next rtx? I love that you're noticing some improvement. Makes me feel more confident about the improvement I've noticed in my own symptoms - especially the clearer head and better energy level! It's still a little up and down - was not so great Friday and Saturday, but today I felt weggie great, too!

Kathie28
05-24-2011, 11:33 AM
I have to go with the pred it is the worst. First of all if you don't get it down with the first swallow it tastes terrible!!! But then there are so many side effects. Right now my feel are swollen like I'm pregnant and my legs feel like they are made of lead. There is no way I can walk up stairs. In 2 more weeks I can drop back to 30 from 40 and I am counting it down. I was doing okay at that level but when I bumped up to 40 the lead weights came back just hate it.

Sangye
05-24-2011, 12:27 PM
I'm so sorry Kathie. Stinkin' pred. :sad:

Sangye
05-24-2011, 12:28 PM
I'm on 5mg pred. When's your next rtx? I love that you're noticing some improvement. Makes me feel more confident about the improvement I've noticed in my own symptoms - especially the clearer head and better energy level! It's still a little up and down - was not so great Friday and Saturday, but today I felt weggie great, too!
I love that-- "Weggie great." Definitely a keeper. :biggrin1:

vdub
05-24-2011, 11:46 PM
"Weggie great."
Yeap, gotta agree. Great quote! I believe i will pilfer that phrase if you don't mind....

Cindy
05-25-2011, 12:41 AM
I take Actonel once a month. I get up take my Cellcept, shower and do chores, then drink my coffee, wait one hour, then eat breafast, wait two hours, then take the Actonol, drink bunch of water, go work at the computer for two hours, then eat lunch. Of corse there are various other meds in the mix. It's all about timing . . . .

Oh, and let's not forget the round of meds that start at about 5 PM and continue until I go to sleep.

When I tell people how many pills I take they just look at me and stare :ohmy:

Chris G
05-25-2011, 02:26 AM
I'm on 5mg pred. When's your next rtx? I love that you're noticing some improvement. Makes me feel more confident about the improvement I've noticed in my own symptoms - especially the clearer head and better energy level! It's still a little up and down - was not so great Friday and Saturday, but today I felt weggie great, too!

Agreed....."weggie great" is a keeper.
I'm still at 20mg pred (booooo, hisssss), because the damn mtx wasn't working for me. So, I think I have a long way to go before I get off both the pred and the mtx (20mg also). They said they want to get me off the pred first - makes sense - but if the mtx isn't working anyway, let's ditch that too! (that's just me complaining.......I'll do what I'm told).

Today I feel a bit "foggy" and off balance, but i'm sure it's from the mtx last night.

My 2nd rtx infusion (of 2) is this Friday. I hope it doesn't make me feel crappy like the first one did - that inracranial pressure was a killer! What was that all about?!?!?!

If we're voting on this "rant" thread - my vote for worst drug is PRED !!! I both love it and despise it. :mad1:
With the humidity increasing, I sometimes do my hair differently - back off my face......now when I look in the mirror, all I see is CHIPMUNK CHEEKS!! Although I love the little furry critters, I hate the cheeks on me! :crying:

Lightwarrior
05-25-2011, 02:39 AM
Agreed....."weggie great" is a keeper.


Today I feel a bit "foggy" and off balance, but i'm sure it's from the mtx last night.



If we're voting on this "rant" thread - my vote for worst drug is PRED !!! I both love it and despise it. :mad1:
With the humidity increasing, I sometimes do my hair differently - back off my face......now when I look in the mirror, all I see is CHIPMUNK CHEEKS!! Although I love the little furry critters, I hate the cheeks on me! :crying:

I agree that Pred is the worst drug. I am grateful it saved my life but the side effects are harsh. i have not been a slim woman for too many years to count now, but the pred has made my size go from bad to worse. Yesterday I wanted to cry because my doc ordered an MRI of my shoulder and guess who couldn't fit into the MRI machine???? I was soooooooo embarrassed. I wanted to cover my face with ashes and hide in a cave (yes, I know that's a bit extreme and I didn't do it)

Daggar
05-25-2011, 03:22 AM
Pred - for what you can see
CTX - for what you can't

Chris G
05-25-2011, 03:32 AM
Oh Lightwarrior, I'm sorry, that must have been very distressing for you. I'm glad you didn't choose the cave!

I'm all too aware that I look terrible - I see people at work staring at me, and surely they're thinking "wow, she really let herself go!". And, ok, yeah, I had put on a few lbs BEFORE I was diagnosed. I used to think that I had been really lazy the last few years, but now I think it was the disease sapping my energy all along. I know that it's not possible for me to exercise right now, so I try to concentrate on getting better......I look forward to the day when I am able to get off the pred, get some exercise, and shed some lbs. Until then, I try to ignore it as best I can, and look to the future. Maybe I'm fooling myself, but that's how I get thru it.

delorisdoe
05-25-2011, 03:38 AM
I have so far skipped 2 school reuinions. I just dont want to feel like I need to tell them why-i hate telling people why.

ScreaminMeanie
05-25-2011, 03:58 AM
Oh Lightwarrior, I'm sorry, that must have been very distressing for you. I'm glad you didn't choose the cave!

I'm all too aware that I look terrible - I see people at work staring at me, and surely they're thinking "wow, she really let herself go!". And, ok, yeah, I had put on a few lbs BEFORE I was diagnosed. I used to think that I had been really lazy the last few years, but now I think it was the disease sapping my energy all along. I know that it's not possible for me to exercise right now, so I try to concentrate on getting better......I look forward to the day when I am able to get off the pred, get some exercise, and shed some lbs. Until then, I try to ignore it as best I can, and look to the future. Maybe I'm fooling myself, but that's how I get thru it.

Ah, this is so me also! I tend not to talk about the WG except to my closest family and friends (and a little bit to my bosses, just to keep them in the loop with what's happening with me and when I might need time off and/or can't make it to a night meeting, etc.), so I guess everyone else just thinks I got fat and lazy. I occasionally make references to things like "before my ankles turned to mush" in hopes they won't judge me too harshly! LOL

Chris G
05-25-2011, 04:56 AM
Ah, this is so me also! I tend not to talk about the WG except to my closest family and friends (and a little bit to my bosses, just to keep them in the loop with what's happening with me and when I might need time off and/or can't make it to a night meeting, etc.), so I guess everyone else just thinks I got fat and lazy. I occasionally make references to things like "before my ankles turned to mush" in hopes they won't judge me too harshly! LOL

What I really want to do is yell out "Stop staring! I know I've gained weight! I'm sick.......It's the pred I tell ya!!"

One day the pred will get the best of me, and I'll blurt that out...... only to find out I have mustard on my nose, or tp on my shoe :blushing:

Sangye
05-26-2011, 01:34 AM
My 2nd rtx infusion (of 2) is this Friday. I hope it doesn't make me feel crappy like the first one did - that inracranial pressure was a killer! What was that all about?!?!?!


I want to make sure people don't think that is true elevated intracranial pressure which is an actual condition. I have it. It's very different and can be life-threatening.

I think the eye bulging and headache symptoms you're getting are from the solumedrol, not the rtx. I get that within a few minutes of the solumedrol injection, which is given 30 mins before the rtx. I also get it on high dose pred. It helps to take a diuretic when you get home. You might ask your doc for a low dose of lasix or something, just for that first night.

Sangye
05-26-2011, 01:41 AM
Oh LightWarrior, how awful. I would have felt the same way. :sad:

Can you check and see if any of the university hospitals have the newer machines (not Open MRI, which is useless). JHU has a newer type of MRI that is larger than the old long skinny tubes. Much easier on the claustrophobia, too. Meanwhile, hugs to you my friend. :hug2:

Sangye
05-26-2011, 01:43 AM
Pred - for what you can see
CTX - for what you can't
Wish it were that straightforward. Pred really messes with your emotions, clarity of thinking, hormone balance, sleep patterns, bone density, stomach lining, etc... All invisible from the outside, like a private hell.

Chris G
05-26-2011, 01:54 AM
I want to make sure people don't think that is true elevated intracranial pressure which is an actual condition. I have it. It's very different and can be life-threatening.

I think the eye bulging and headache symptoms you're getting are from the solumedrol, not the rtx. I get that within a few minutes of the solumedrol injection, which is given 30 mins before the rtx. I also get it on high dose pred. It helps to take a diuretic when you get home. You might ask your doc for a low dose of lasix or something, just for that first night.

This could also explain why my eyelids and sinuses puffed up, right? I will try the diuretic trick for sure!

ScreaminMeanie
05-26-2011, 02:01 AM
I'm finding that I get the headaches and bulging eyes not only the day of/after the infusion, but again on Wednesday or Thursday of the following week. (Got it right now, which is what made me think of it.) I don't know what the heck that is all about. Hopefully my doc will have some ideas when I see her tomorrow - got a whole page of things to ask/talk to her about! :)

Sangye
05-26-2011, 02:02 AM
Yes, the solumedrol causes a huge amount of water retention, which generally affects sinuses, eyelids and the tissue surrounding the eyeball. If you get bad sweats the night of treatment the diuretic helps with that, too.

My other trick: Don't eat salt on the treatment day, especially not in the evening. That really helps keep the swelling and sweating down.

Sangye
05-26-2011, 02:03 AM
I'm finding that I get the headaches and bulging eyes not only the day of/after the infusion, but again on Wednesday or Thursday of the following week. (Got it right now, which is what made me think of it.) I don't know what the heck that is all about. Hopefully my doc will have some ideas when I see her tomorrow - got a whole page of things to ask/talk to her about! :)
I get that a lot when I eat salt. Do you eat a low-salt diet?

ScreaminMeanie
05-26-2011, 02:08 AM
I get that a lot when I eat salt. Do you eat a low-salt diet?

I do eat a low-salt diet. A lot of times I'll have a hard time getting to sleep if I've slipped and eaten something saltier than usual. I can't seem to correlate the headache/bulgy eyes with my salt intake, although they do feel similar.

Sangye
05-26-2011, 02:11 AM
Salt increases the Fire energy in the body, so it makes it harder to sleep. People who eat a salty snack in the evening are much more likely to get insomnia.

You might want to keep a food log and see if you can find a correlation. I have a couple food sensitivities that will cause it, too. MSG is a particular killer that is hidden in a lot of foods.

ScreaminMeanie
05-26-2011, 02:47 AM
I avoid MSG like the plague! Keeping a food log is one of those things I keep saying I'm going to do (and have done a few times in the past), but just don't seem to have the energy at the moment. Gonna try to do it anyway!

A few weeks ago I was blaming this on allergies - the pollen counts have been off the charts this spring - and then it rained on and off for a couple of weeks (during which I don't recall having this problem). Now it's been dry for almost a week and the pollen counts are sky high again. That could be it.

Sangye
05-26-2011, 02:52 AM
Oh yeah, definitely could be pollen. Go write it down. In the column next to your foods. :laugh:

Chris G
05-26-2011, 02:54 AM
I've had allergies since about age 25 - or I thought I did.......now I think half of it was wg puttering along, before I knew I had it. Anyhow, while we're on all these immune suppressing drugs, are we really be having allergy problems??? Surely, my 20mg daily pred is a much better allergy reliever than a claritin, right? I haven't taken an allergy pill since starting wg drugs.

ScreaminMeanie
05-26-2011, 03:01 AM
I don't think my 5mg is working as well as your 20mg. ;)

Sangye
05-26-2011, 03:03 AM
ROTFL... :lol:

Chris G
05-26-2011, 04:32 AM
I don't think my 5mg is working as well as your 20mg. ;)

Haha, my 20 trumps your 5! Do you want to raise??

ScreaminMeanie
05-26-2011, 04:40 AM
Some days, I actually DO!

Chris G
05-26-2011, 05:53 AM
Some days, I actually DO!

NO!! Don't say that! You're so close to getting off that nasty stuff! And the mtx too. I'm right behind you......closing in fast (I think I can, I think I can....)

ScreaminMeanie
05-26-2011, 07:01 AM
I know, I know! Just kidding.......kind of. I'm actually going to ask my doc tomorrow about the advisability of slightly upping my dose on days I know I'm going to have extra stuff on my plate - like night meetings for work - so that I don't hit the "pred wall" before the meeting even starts. Maybe take 1mg extra at lunchtime or something. I will report back what she says, in case anyone else is interested.

Daggar
05-26-2011, 07:28 AM
Wish it were that straightforward. Pred really messes with your emotions, clarity of thinking, hormone balance, sleep patterns, bone density, stomach lining, etc... All invisible from the outside, like a private hell.

Understood but that "C" word is most feared at this point especially for someone who had bladder issues beforehand.

delorisdoe
05-26-2011, 08:21 AM
Understood but that "C" word is most feared at this point especially for someone who had bladder issues beforehand.

I am going to offer my two cents.

first off i was on 100mg of daily oral prednisone for 3 months, 50 for another 6 and then tapered to 30 for at least another year after that.
I was on 100-150mg of cytoxan for 2.5 years.

i am i conclude an expert on this subject.

I hate prednisone. I hate it for all of the reasons sange listed. I hate it for more than those reasons. Cytoxan is different. I hated the hair loss, also, cytoxan left me for dead. Also, we cant forget that it could be the cause of cancer years from now. Anyone who has been on these drugs probably would agree that you dont spend much time thinking about what cytoxan could be doing but you spend alot of your waking hours dealing with the effects of prednisone AND thanks to the prednisone there are alot more awake hours in the night to think. You cant go anywhere without wondering if people notice the change in you-of course they do. Prednisone makes you a psycological mess. I would make up staff schedules in the middle of the night after scrubbing the floor and it would take me 15 minutes to do. The next day I would check it over and they made no sense. My temper was uncontrollable and I thought I was completely loosing my mind. I could go 5 days with as little as 2 hours of sleep a night and not be tired until day 5.

Haveing said all of this if my daughter who is 13 was diagnosed with a disease that could be treated by either cytoxan or prednisone I would chose prednisone for her. Too bad we dont have a choice between the two. which one would you chose.

Daggar
05-26-2011, 08:26 AM
A case of pick your poison - thankful they saved her life now but worried they'll take it in the end.

ScreaminMeanie
05-26-2011, 08:50 AM
Daggar, if it's any consolation, I'm 20 years beyond 8 months of high-dose cytoxan (which almost killed me at the time), but I've had no bladder problems. 34 at initial dx, 54 now. Who knows what will happen next year or the year after, but for now, 20 years of whatever I've got going on now seems like a pretty good trade-off for the 8 months of misery I went through.

I would only take cytoxan again, however, if my wegs became life-threatening and everything else failed to work.

pberggren1
05-26-2011, 09:38 AM
Daggar, if it's any consolation, I'm 20 years beyond 8 months of high-dose cytoxan (which almost killed me at the time), but I've had no bladder problems. 34 at initial dx, 54 now. Who knows what will happen next year or the year after, but for now, 20 years of whatever I've got going on now seems like a pretty good trade-off for the 8 months of misery I went through.

I would only take cytoxan again, however, if my wegs became life-threatening and everything else failed to work.

ditto to this

Daggar
05-26-2011, 09:53 AM
Thanks SM.... hopefully when she goes off it in July it is for good!

...and ditto the pred when she gets to that point.

Sangye
05-26-2011, 01:56 PM
Daggar, I didn't mean to diminish the effects/risks of ctx. I was on ctx twice and had bone marrow toxicity. I can't take it again. As bad as it made me feel, it was nothing compared to pred. From a holistic view pred is much more deeply damaging to the body. I'll be so happy when Holly can be off both of them.

Jack
05-26-2011, 08:36 PM
It has been over 20 years since I last took ctx, but I had a lot at that time and was told that I should not use it again. I did not take much by way of precautions against future side effects because we did not have the internet then so my knowledge was limited. However, I've got away without trouble since then. It is now the Pred that is killing me.

delorisdoe
05-27-2011, 01:04 AM
I totally have no ill feelings against the cytoxan I would just be so worried if it were my daughter on it as opposed to myself.

Daggar
05-27-2011, 02:25 AM
We see a lot of studies related to immune suppressants - haven't seen much in the way of an alternative to pred. Has anyone read anything that would indicate an alternative in the future?

Sangye
05-27-2011, 03:20 AM
No, there is nothing being proposed as far as I've heard. Corticosteroids are so much more powerful than any other anti-inflammatory out there.