Prednisone withdrawal

[Debbie C]

As you all know I have been saying I was going to start weaning of the 5 mg of pred. ( since my dr. said it would be o.k. ) Well Sat., I took 4 1/2 mg. and ended up having a horrible headache,yesterday I did the same but by mid after noon my head was killing me,my ears were ringing so loud,body aches all over and I was freezing.I couldn't take it so today I upped it to 5 1/2mg. But I still feel bad and am freezing. I've had sweats on ,with a robe over that and covered with an afgan drinking hot tea in front of a space heater !!!!!!!!!!! I called my dr. at Cleveland and he said I was having withdrawal systems and to go up to 7 mg. until I felt better than back down to 5. I now wondering if I should just "man" up stay at 4 1/2 until this passes otherwise I'll never give off the crap:sad:

[windchime]

I'm having some of the same symptoms trying to taper. I'm trying to tough it , but I'm not sure that is wise because of the adrenals. On the other hand I don't want to go back up to 20 mg when I'm down to 10 and have been for several weeks. Still having the side effects though. I feel your pain. Good luck. :hug1:

[annekat]

Wow, Debra, it is amazing to me that 1/2mg. could make that much difference, but I certainly believe it, having read of other cases like that on here. As to whether you should "man up", I don't know.... I guess I'd follow your doc's advice, especially if he/she is at Cleveland, but I hope you can get back down to the 5mg. soon. Then I suppose the next time you try to taper from there, you might have to start with 4.75mg!

[pberggren1]

Oh crap.....that sure sucks hun. Um, could be withdrawl. Some people have a very hard time tapering off. How long have you been on pred? How long at 5mg? This could also be a fluke and you could have an infection somewhere? What were your recent labs like? How long ago? I would go for labs tomorrow to see what they are like. I think I would also take your doc's advice and go to 7mg for a bit.

[pberggren1]

I remember Sangye switching to HC. I think she was able to get off that as well. Maybe you need to see and Endo doc like she did.

[annekat]

I just had to go back to 20mg. for at least a couple of weeks, after being at 7mg., because I'm apparently having a small flare. It doesn't feel much like a flare to me, it feels like sinus pressure from seasonal allergies, complete with tinnitus and vertigo, which can happen with WG, too, but I'm not getting any joint pains, rashes, or anything like that... maybe a few mild "chills" kind of feelings, that's about it. So I'm kind of arguing with my doc about the allergies thing, but he feels the rise in inflammation is enough that it is WG activity. To me, could be some of both. I see ENT on Monday and will see what he has to say... I think he's more open to talking about allergies and might prescribe me something for those instead of just letting them be supposedly treated by the pred and MTX that I'm on. Sorry if I'm straying off topic, but my doc thought the taper I was doing on the pred caused the rise in inflammation.

[pberggren1]

What are your numbers at Anne?

I went back on pred on Thursday at 40mg.....took my last dose today, it was driving me nuts...literally. I could not take the fast thinking anymore. And pred wipes me out now. It used to give me wings like Red Bull but now I just crash hard mid day. Got a lung infection again so back on Azithromycin for a week to see if that clears it up. I did have a mini flare in March but got a dose of RTX. I think it was enough to put it down again.

[annekat]

What are your numbers at Anne?

I went back on pred on Thursday at 40mg.....took my last dose today, it was driving me nuts...literally. I could not take the fast thinking anymore. And pred wipes me out now. It used to give me wings like Red Bull but now I just crash hard mid day. Got a lung infection again so back on Azithromycin for a week to see if that clears it up. I did have a mini flare in March but got a dose of RTX. I think it was enough to put it down again. The only number I got was inflammation is 64, up from 35, I guess that would be the SED rate, no? I get those things mixed up and did not get a copy. So I guess that sounds like a pretty big jump, but I don't feel that bad. Just don't like the occasional dizziness and worrying about getting vertigo. I haven't minded the 20mg. pred., though I did feel a little hopped up the first day or two. I don't know how I'd handle 40mg. I know what you mean, any given dose of pred gives more negative effects than it used to. Will tell more after my ENT appt. on Monday.

[pberggren1]

Sounds more like an ear infection Anne with the increased ESR and dizzy spells. I always check my ESR, CRP, WBC and PR3 at least monthly. When I feel like crap I go check it right away and then weekly until I feel better again.

[Debbie C]

Phil, what do you mean your last dose of pred was today.Are u going from 40 to 0 ? What is HC ? I just had all my labs done last week and everything was good except my lipid panel.chlorestoral high but my sed rate was at 11. Here it goes from 0-20. So Anne if yours was 64,that's high,unless yr lab measures it differently. I never thought 1/2 mg. would make such a difference but I have felt like crap for 2 days. I don't know what I will do tommorrow. Cindy ,I sure don't think I could do this for a several weeks like you,are u sure u are not having a flare?
Good luck at yr ent appt. on Monday,Anne !

[pberggren1]

Ya, just wanted to take some high dose pred for a few days to take the edge off the inflammation. HC is a different steroid similar to pred and usually easier to taper off of.

[annekat]

Sounds more like an ear infection Anne with the increased ESR and dizzy spells. I always check my ESR, CRP, WBC and PR3 at least monthly. When I feel like crap I go check it right away and then weekly until I feel better again.
I have no ear pain, but there's been a lot of pressure across the whole sinuses, in which case there can be a small amount of ear pain. I've had ear infections before and it doesn't feel like that. It feels the most like sinus pressure I've had in the past from seasonal allergies. I've been tested and have some pretty severe ones. That might not explain that much inflammation, though, and an infection hasn't been ruled out, though the WG doc doesn't feel I have one. There was a CT scan of the sinuses which didn't show anything too alarming, but I'm going to wait and comment on that after I talk to my ENT. He may have a different point of view on possible infections, too.

[pberggren1]

Ya, could be sinus infection spreading to ears via e-tubes.

[annekat]

Phil, what do you mean your last dose of pred was today.Are u going from 40 to 0 ? What is HC ? I just had all my labs done last week and everything was good except my lipid panel.chlorestoral high but my sed rate was at 11. Here it goes from 0-20. So Anne if yours was 64,that's high,unless yr lab measures it differently. I never thought 1/2 mg. would make such a difference but I have felt like crap for 2 days. I don't know what I will do tommorrow. Cindy ,I sure don't think I could do this for a several weeks like you,are u sure u are not having a flare?
Good luck at yr ent appt. on Monday,Anne ! I think 64 is high, too, because I think the last time I had a flare it was at 53. But I feel less bad than I did then, except for the sinus pressure and dizziness and stuff. Which lends credence to Phil's idea that it could be an ear infection, or some kind of infection, more than a flare. But I just don't feel that infected. Don't know what to think and will see what the ENT says. I know I have a high pain threshold so might not feel the pain from an ear infection the way some would. I know the pred is making me feel a little better overall, after 4 days at the higher dose.

[annekat]

Ya, could be sinus infection spreading to ears via e-tubes. I've had sinus infections before, too, and it doesn't feel much like that; if it is, this time the sinuses aren't draining well at all so I'm hardly getting any discharge. My interpretation is that whatever it is, the sinuses are blocked from the pressure, which could also cause the ear problems, dizziness, etc. I swear, I have had this kind of thing before from seasonal allergies, it's just that this time it is worse than ever. I have not ruled out your idea of an infection, though, or a combination of those things. Plus a little increase in WG activity thrown in for good measure. We will see.

[pberggren1]

Just keep in mind infections will never present exactly the same way each time. All 14 of my lung infections in recent years have all been different.

[annekat]

Deb, just deleted a post that was slightly wrong. Checked the Mayo site and they say normal SED rate is 0-22 for men and 0-29 for women. So your 11 is within normal range, and we already knew my 64 is high. Mine has been as low as 23 and last time was 35, and at my last flare was 53. My doc says it was over 100 when I was first dx'ed, but I don't know how much over.

[annekat]

Just keep in mind infections will never present exactly the same way each time. All 14 of my lung infections in recent years have all been different. Yeah, just like Wegs will never present exactly the same way each time. Makes it all pretty interesting to try to figure out!

[windchime]

Cindy ,I sure don't think I could do this for a several weeks like you,are u sure u are not having a flare?


I think it's a combination of a few things. I've had problems with allergies the last couple of weeks. Pollen has been bad down here. I had a GI thing Sat that I've felt the after effects of even yesterday. I go to Mayo in Jax today, but I will only see the Pulm as they were unable to get me in with a Rheumy. So I'll see what he says. Good luck Debra.

[annekat]

I'm glad you mentioned allergies, Cindy, and I know you did before.... Pollens have been bad here, too, and I've been suffering more than usual. The doc treating my Wegs assumes that any allergy symptoms would be taken care of by the pred and immunosuppressant I'm on, and what I'm having must be from the Wegs. Although I may be having a flare, I think he's wrong about the allergies, that they are in there, too, and it is frustrating. I can always try OTC stuff, but think I should have a prescription for something better, specifically for the allergies, and he is not into it. I'll see if I can get some help from my ENT on Monday. I'm sorry you are having allergy problems, but it does reinforce my point of view.

[pwc51]

I did a crash withdrawl from pred - 10mg to zero in 2 months having been on varying doses for over 4 years. I have to say I did not feel particularly good through the process from feeling absolutely great at the beginning. It is probably 3 months after hitting zero that I felt half reasonable again. It is hard to put my finger on how I felt - just 'not good' is the best I describe! I often thought I should restart the pred but knew how keen my rheumy was to get me off them so persevered. As ever with WG I feel I live on a knife edge but it is good to know I have an opportunity to go back to pred as one of the weapons in the future.

[Debbie C]

Wow ,I don't see how u did that reduction so fast, from 10 to 0. This reduction by 1/2 has got me couch bound.I'm going up to 6 today and try again in a couple of weeks.

[Alysia]

Wow ,I don't see how u did that reduction so fast, from 10 to 0. This reduction by 1/2 has got me couch bound.I'm going up to 6 today and try again in a couple of weeks.

Hi Deb. I am sorry for this tough time you had :sad: I hope that today you will already feel better. I can't get down from 5mg to 4mg. it cause me joints pains, ears aching, more nose "productions", more coughing and stomach pains. all these are my wg-symptoms.
I still try to take 4mg for 1 day from time to time to make my body used to it. if I take it only one day then I dont feel any change.
please update us how are you. :hug1:

[Alysia]

I think 64 is high, too, because I think the last time I had a flare it was at 53. But I feel less bad than I did then, except for the sinus pressure and dizziness and stuff. Which lends credence to Phil's idea that it could be an ear infection, or some kind of infection, more than a flare. But I just don't feel that infected. Don't know what to think and will see what the ENT says. I know I have a high pain threshold so might not feel the pain from an ear infection the way some would. I know the pred is making me feel a little better overall, after 4 days at the higher dose.

Hi Anne, I hope the pred can help you to overcome this. thanks God you are going to your ENT soon. please update us what he said. :hug2:

[annekat]

Alysia, I wonder if it would work to alternate days of 4mg. and 5mg. Or to go 5, 5, 4, 5, 5, 4, or something like that. Or just staying at 5mg. for the rest of our lives is not the end of the world, I guess. If I can get there, it will be an accomplishment, for sure.

[annekat]

Hi Anne, I hope the pred can help you to overcome this. thanks God you are going to your ENT soon. please update us what he said. :hug2: Thanks, Alysia, I will definitely share what the ENT says and does. He's kind of a quiet guy, so I may have to pry some explanations out of him. But a very nice man. I still think allergies are involved, and he may agree... I'm still arguing with my WG doc about this. But I also think I have either a flare or an infection, and it would be nice to find out which, or maybe it is both. I've been doing OK but today I feel especially stuffed up. Have taken an anti-vertigo pill just in case. I get daily reports of pollen in the air, and today is high, although I'm not sure if they are the specific ones I have problems with.

[Alysia]

I went back on pred on Thursday at 40mg.....took my last dose today, it was driving me nuts...literally. I could not take the fast thinking anymore. And pred wipes me out now. It used to give me wings like Red Bull but now I just crash hard mid day. Got a lung infection again so back on Azithromycin for a week to see if that clears it up. I did have a mini flare in March but got a dose of RTX. I think it was enough to put it down again.
I am sorry Phil, no peace yet :hug1:14 lungs infections are really too much :sad:
I hope that stopping the pred after 6 days without gradually going down is ok, like you said :confused1: but worried-me, and not knowing enough, I wonder about it still...
after all, with wings or without them, we want you to feel good :wub:
Michelle, what do you say ? others ?

[annekat]

I personally would not take 40mg. pred for 6 days, after being off it for awhile, and then just stop. Pred is cheap. I would do some sort of taper to make it easier on my body. Maybe 30 for a few days, then 20, then 10. Then maybe you could stop if your adrenals are functioning on their own.

[Debbie C]

yea,that seemed like a big jump to me also,I think phil you should have tapered at such a big dose even if it was for a few days. Anne, I may try that 5,5,4,5,5 thing and see how I feel. I went to 6 today and still don't feel right

[mishb]

I personally would not take 40mg. pred for 6 days, after being off it for awhile, and then just stop. Pred is cheap. I would do some sort of taper to make it easier on my body. Maybe 30 for a few days, then 20, then 10. Then maybe you could stop if your adrenals are functioning on their own.

I agree that a taper, like the packs you can get, would be a better idea than just stopping cold turkey from 40 to zero.
I don't like it and I know the 40 would get the inflammation under control quickly, but who's to say it is going to stay that way.

We all just worry about you Phil ......you do have enough to deal with already.:crying:


Deb C, it has been about 18 month for me to get from 5mg to 3mg.......and sometimes I still take a 5mg just to take the edge off. It's not actually pain as such, just aches.
I did it by quarters and then back up again, then quarter to half and then back up again......and yes, I agree, you can certainly tell the difference

Don't we just love that little white pill - best of wishes to everyone that are on it, or trying to get off it :hug1:

[Geoff]

Hi Debra,
I feel your pain and concern. Tapering pred was my Holy Grail but after 6 years of continous use its fast appearing as tho its not to be. Like you i am stuck at 5mg and have never got below 4.5mg. It was put in context by one of the special team at Adds who said "so what if you do stay at 5mg?"
There are more important things to worry about like staying alive and how your football team is doing!! Dont let it stress you out, play the game and roll with the punches, enjoy your life..

[Debbie C]

[QUOTE=mishb;82462]
Deb C, it has been about 18 month for me to get from 5mg to 3mg.......and sometimes I still take a 5mg just to take the edge off. It's not actually pain as such, just aches.
I didn't realize it took that long for u. I was thinking this would be a breeze and then when I felt like crap on just a 1/2 reduction ,I thought I was just being a wuss.breaking those pills in half is hard enough,it will be crumbs if i try quarters.How long have u been at 3 now ?

[Debbie C]

Geoff that sounds like someone who has not been on preds!!! I would like to enjoy my life and I would like to try without these but who would of thought that being so low would be harder to get off them than being so high on them !!!

[annekat]

Geoff that sounds like someone who has not been on preds!!! I would like to enjoy my life and I would like to try without these but who would of thought that being so low would be harder to get off them than being so high on them !!! Deb, at 5mg, are you feeling any bad side effects from the pred? You know, the jitteriness, big appetite, moonface, etc. For me, at 10mg. or lower, I really don't feel anything. But I'd still like to be off them because I know it would be better for my body. If I can get down to 5mg. I'll feel OK about staying there indefinitely, I guess, if it will help me avoid flares.

[pberggren1]

I am okay everyone. Taking 40mg for 6 days then quitting is safe. No worries there. I didn't take any today and am just fine.

Anne, taking the pred one day and skipping the next is prob the way to go to get your adrenals to wake up. That is how I taper pred when coming off a long stint.

[annekat]

I am okay everyone. Taking 40mg for 6 days then quitting is safe. No worries there. I didn't take any today and am just fine.

Anne, taking the pred one day and skipping the next is prob the way to go to get your adrenals to wake up. That is how I taper pred when coming off a long stint. But might it not be different for someone else? Seems to me it wouldn't hurt to do a quick taper from 40 on down while on a short stint. That's how my docs always had me do it for sinus infections pre-dx. You are so seasoned at this, you know what you can handle, but someone else might not.

Maybe the alternating thing, one day on, one day off, would work for Deb and Alysia if they really want to get below 5mg. and be free of pred. But there, too, I'd be wary that they might not handle the day off as well as you do, so should be cautious and prepared, maybe not do this on days when they have to work or be out in public doing things that might sap their energy.

[pberggren1]

It is true I might be experienced and knowledgeable about the pred thing but the fact remains that the adrenals don't start to shut down until about day 10 for most people. Some people just have a hard time tapering after being on for months or years. It would be hard to taper the pred by going a no dose on alternating days if it wipes you out and you need to work. One has to try and see what will work best for them, and that is the hard part.

[mishb]

[QUOTE=mishb;82462]

I didn't realize it took that long for u. I was thinking this would be a breeze and then when I felt like crap on just a 1/2 reduction ,I thought I was just being a wuss.breaking those pills in half is hard enough,it will be crumbs if i try quarters.How long have u been at 3 now ?

Deb, I have been on 3mg now (sometimes adding a 5mg in) since January 2013.

My rheumy basically said what Geoff's has said.
He said, my guess is that you will never be off pred and will always alternate somewhere between 5 and 3, for the rest of your life - and so what if you are

It's not a problem for me - I feel that pred was/is my life saver.

[annekat]

It is true I might be experienced and knowledgeable about the pred thing but the fact remains that the adrenals don't start to shut down until about day 10 for most people. Some people just have a hard time tapering after being on for months or years. It would be hard to taper the pred by going a no dose on alternating days if it wipes you out and you need to work. One has to try and see what will work best for them, and that is the hard part. Could you explain about the 10 days, Phil? They shut down 10 days after what?

[pberggren1]

They start to shut down after 10 days of starting the pred. So if I started the pred on April 10th at 40mg then by April 20th the adrenals would start to shut down and see that they don't need to make our natural pred anymore.

[Debbie C]

Anne,I feel fine at 5, I would just like to get off them. I don't think I could do what Phil mentioned by skipping a day. I was a mess when I just went down 1/2 let alone none.I took 5 1/2 today and tomorrow will get back to my 5 and stabalize for a bit and see, who knows I may have to stay at 5.
I go for a bone denisity test today, I hate to hear the results of this one.

[annekat]

They start to shut down after 10 days of starting the pred. So if I started the pred on April 10th at 40mg then by April 20th the adrenals would start to shut down and see that they don't need to make our natural pred anymore. Oh, I see, you mean 10 days after starting high dose pred when you have been off it off it for awhile or have never been on it. So if I did a "short stint" taper of 50 for 5, 40 for 5, 30 for 3, 20 for 3, 10 for 3, and then off, back when I was just being treated for sinus infections and not WG, then I'd be at higher dose pred for more than 10 days, thus the taper. So you had been off pred long enough to just do the 40 for 6 days and stop, I get that. Thanks.

But the people like Deb and Alysia and me who have been on a long stint and never come off it will have to be a lot more careful, even after 10mg. or 5mg. And everyone is different, of course; some are able to get off it easier than others.

I'm just repeating all this to clarify it in my mind. I remember Sangye saying that after 20 days of higher dose pred, and I think she said 20mg. or above, that your adrenals would have shut down completely. That fits with what you say about them starting to shut down after 10 days. I could be wrong about exactly what she said, so feel free to correct me (yes, I know, you always do!:wink1:).

[annekat]

Anne,I feel fine at 5, I would just like to get off them. I don't think I could do what Phil mentioned by skipping a day. I was a mess when I just went down 1/2 let alone none.I took 5 1/2 today and tomorrow will get back to my 5 and stabalize for a bit and see, who knows I may have to stay at 5.
I go for a bone denisity test today, I hate to hear the results of this one. I guess the only way to do it would be on a total vacation where you had no responsibilities and someone waiting on you hand and foot, and had medical supervision available in case of emergencies! It's good to know how this goes for you in case I ever try to do it myself.

Good luck on the bone density scan! I think I'm due for one of those myself.

[Alysia]

thank you, our Dr. Phil :wink1: for the info :thumbup:
Deb, good luck at the bone density test. I hope it will be ok. :hug2:
Anne, you remain mysterious :flapper: what did your ENT said ?
Michelle, for me2, pred is life-saving and good friend. but I am lucky not to suffer from it like others, I sleep good with it, even on high doses, and not gaining weight. I just don't like the cocker spaniel face it made after the moon face :rolleyes1:

[annekat]

Anne, you remain mysterious :flapper: what did your ENT said ?
Alysia, I did not see my ENT yet.... I see him on Monday. I will say that my WG doc was not overly alarmed at my sinus CT scan, although I'm not at all sure the correct conclusion has been reached (especially after talking to Kirk yesterday). And he still doesn't think my allergies need to be dealt with as long as I'm on the WG meds. I disagree and am waiting to see what the ENT says. It is true I have a high SED rate, or CSR, of 64, which would indicate a WG flare and/or an infection more than allergic inflammation. But I still think the allergies need to be dealt with and I think my ENT will agree. I will tell more after the ENT appt., when I will have a more complete picture.

[jvilner]

Question- need to take ACLASTA infusion for bones because of all the prednisone. I can't take it in pill form as will irritate esophagus and already have swallowing problems from ears. This is done once a year. Anyone had experience with this med?


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[Debbie C]

Sorry I can't help you on that, I never heard of Aclasta.

[Debbie C]

I guess the only way to do it would be on a total vacation where you had no responsibilities and someone waiting on you hand and foot, and had medical supervision available in case of emergencies! It's good to know how this goes for you in case I ever try to do it myself.

Good luck on the bone density scan! I think I'm due for one of those myself.
Well I just came back from vacation ( although I wasn't weaning from the pred ) but I think I need to be sedated for about a week or until all the symtoms go away,thats the only way I'm going to get thru it.

[annekat]

Sorry I can't help you on that, I never heard of Aclasta. i'm figuring it is something like Fosamax or Boniva, and the generic name of the drug is alendronate sodium, or it would be something similar. I take this in a weekly pill but have heard these things are available in a monthly or yearly form and can only assume it is a similar drug for promoting bone growth or stronger bones. I'm not sure how I feel about it as there are some warnings in the patient literature about some long term negative effects that can happen. I would look up Fosamax or Aclasta or alendronate in the archives and see what people have said in the past. i would also do some web searches, they can be very helpful, and see what people are saying but be sure to visit some good medical sites like Medscape or the Mayo Clinic site, or the ones that always pop up, like WebMD and I forget the others. Wish I could help more but am not sure I understand the problems.... I do know my doc says I should not take it for more than 5 years. If we are talking about the same drug.

[annekat]

Just checked on Aclasta, the generic drug name is different than the one for Fosamax, but they are both in the biophosphonate (sp?) family of meds and sound like have some similarities. So just Google Aclasta, and maybe someone here will know more about it.

[jvilner]

Yes you are all correct. That's the drug. I did google it. Matter of fact that's what made me nuts. Do much contradictory info. Also why I asked on the forum. Want real ppl info. Guess just everyone's reaction is different. I am trying to look in bright side and be happy there's a solution for me as I can't take it in pill form. Keep yr fingers crossed for me!!


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[annekat]

Yes you are all correct. That's the drug. I did google it. Matter of fact that's what made me nuts. Do much contradictory info. Also why I asked on the forum. Want real ppl info. Guess just everyone's reaction is different. I am trying to look in bright side and be happy there's a solution for me as I can't take it in pill form. Keep yr fingers crossed for me!!


Sent from my iPhone using Tapatalk If you want current discussion on this topic, I suggest you start a separate thread on it that will catch more people's attention who might be using it or know more, with whatever words in the subject line that you think will get a reaction. This thread we are on is about prednisone withdrawal, a different subject, although it's true that we tend to stray off topic a little. Some searches of the archives could be valuable, too.

I can only tell you that I've used Fosamax weekly in pill form for a few years with no negative consequences that I know of. I don't know if there are any differences in the risks between the infusion or pill method. I have not had a bone density screening since starting so can't address whether it may have helped.

[jvilner]

Thanks annekat. I'm still trying to figure out how to navigate the forum. I write from my phone.


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[Alysia]

Thanks annekat. I'm still trying to figure out how to navigate the forum. I write from my phone.


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from the phone it is more complicated. you should write about the med under medication.
I also don't know about that med. good luck.

[RudiK]

Back in Ocober 2013 I "talked" my doc into "weaning" me off the preds. At the time I was on mg, and we did taper off, by December 2013 I was off of preds and felt good. Unfortunately by the end of January 2014 I had relapsed this time with lung involvement, so now I'm back on 20mg preds and 2g cellcepts. If all goes well, will slowly reduce the meds by the end of April. I guess no more getting off of the preds for me,I will stay on some preds for the rest of my life.

[annekat]

Thanks annekat. I'm still trying to figure out how to navigate the forum. I write from my phone.


Sent from my iPhone using Tapatalk You're welcome. I just use a laptop and don't know how different it would be on a phone. For me, if I want to start a new thread, I'd go to the top left of this page and click Forum, which would take me to the main page with the list of categories. Then I'd choose Medications, which would take me to the most recent posts on that subject. Then I would click Post New Thread at upper left of that page, and would get a screen on which to start the new thread including a title. Write the post and click Submit. And for searching the archives, I think there is a search window at upper right of every page. I know your topic of interest has been discussed here in the past, probably several times. Some of us who have been here awhile still get confused sometimes about how to navigate the forum. Good luck!

[Debbie C]

RudiK,sorry to hear you had a flare and had to start all over. Did you not have involvement in your lungs before ? What mg. were u on when you started to wean off? I am going to try again but I am going to wait a bit,I may get the results of my bone denisity test tomorrow:scared:. I got my Vit D results and they were barely suffiect and my dr at CC said thats o.k.. I think I may up those this week. Never a dull moment with wg !

[windchime]

I ended upping my pred back to 20mg as 15mg wasn't helping the fever and muscle aches at night.:crying: Felt better last night. Still had a little fever, but not as high. Hope all goes well tonight. No muscle aches yet. :thumbsup: Will discuss with docs on Thursday.

[pberggren1]

Damn Cindy. Do you think you have a lung infection or some other infection? Will you go for labs early this week so you got some fresh numbers for this new doc? I so know how you feel sweetie. It just plain sucks.

[Pete]

I ended upping my pred back to 20mg as 15mg wasn't helping the fever and muscle aches at night.:crying: Felt better last night. Still had a little fever, but not as high. Hope all goes well tonight. No muscle aches yet. :thumbsup: Will discuss with docs on Thursday.

Just wondering if you might be overkilling the fever and muscle aches with pred. Have you tried aspirin or ibuprofen?

[Alysia]

I may get the results of my bone denisity test tomorrow:scared:. I got my Vit D results and they were barely suffiect and my dr at CC said thats o.k.. I think I may up those this week. Never a dull moment with wg !

I am thinking about you Deb, any results ? how are you so far ? :hug1:

[Alysia]

I ended upping my pred back to 20mg as 15mg wasn't helping the fever and muscle aches at night.:crying: Felt better last night. Still had a little fever, but not as high. Hope all goes well tonight. No muscle aches yet. :thumbsup: Will discuss with docs on Thursday.

Cindy, fever is not good. please listen to Dr. Phil.

[windchime]

Have new labs. Nothing is yelling at me. Sed rate 24. I can take IBUprofen for the aches and the fever, but if they are being caused by pred reduction will it eventually go away?

Debra how are you doing now, better?

[pberggren1]

Not a good idea to take ibuprofen Cindy, especially with pred. Sed rate of 24 is a tad high, so you have inflammation for sure. What is your WCC and CRP?

[windchime]

Not a good idea to take ibuprofen Cindy, especially with pred. Sed rate of 24 is a tad high, so you have inflammation for sure. What is your WCC and CRP?

wbc= 4.1 x 1000 normal is 3.5-10.5 x 1000

No CRP in the massive amount of blood work he did unless it's called something else.

[annekat]

I just got a "health alert" by email from Johns Hopkins about SED rate, or ESR. I can't be sure everyone can see this if they aren't registered with the site, but here it is: What Is an ESR?: Johns Hopkins Health Alerts (http://www.johnshopkinshealthalerts.com/alerts/arthritis/SED-Rate_6821-1.html?s=EAH_140414_00T&st=email)

What got my attention was that it says for people over 50 years old, the upper limit for "normal" ESR is 20 for men and 30 for women. I have seen different numbers thrown around for this, so I guess it depends on whom you ask. I have very little understanding of this subject, so am sharing this as a "for what it's worth" kind of thing. I don't know if another top medical site might give different number ranges.

[pberggren1]

I just hope you get to feeling better Cindy. I hope this new pulmy doc at Mayo has some new ideas for you. I know how you feel hun.

[windchime]

Thanks for the info Anne, it gave me an idea. I usually have high uric acid levels and haven't been able to take allopurinol because of the CTX. Maybe that is causing everything. Will ask doc on Thursday.