Prednisone Weaning: All my aches, pains, and swelling are back FULL FORCE!

[KRNLMBCH]

Hi everyone?it's been pretty miserable here for me lately.  I've been on Plaquenil (400 mg) and 10 mg. prednisone since October.  From Octrober through February, I had a whole THREE days of feeling quite "normal".  As soon as I told my Rheumy I am see improvements in my hands, joint function, swelling, pain, dryness, etc. she started the taper.  Drop down 1 mg every 2 weeks?I am now at 1 5mg plus 3- 1 mg (total 8mg) and I'm dying!!!  I felt crappy at 9!  I feel like I'm doing a total backslide!  I know I've heard how difficult prednisone tapering can be, but I didn't think it meant all your joint, pain stiffness, swelling, etc. came back!?  Is this normal or does it mean I should not be getting off it yet?  I am so miserable.  My life is back to "barely functioning" and in constant pain!  I'm desperate for any info. or similar experiences.  Unfortunately, my rheumy (as I've said before) explains NOTHING.
Karen

[litliwlowa]

Karen

Has anyone checked your adrenals? Such as cortisol?

I ask as even tho I wasn't on prednisone as long as you have been, when I finished a high dose taper back in January (on 9 days), geesh it was like being hit by a Mack truck withi a day or two after last dose of taper. My endo suspected adrenal insufficiency, I was suppose to go back in the following week for cortisol plasma test which was delayed by the weather we were having. Anyway, about a month after is when he did am plasma cortisol - which was quite a bit lower than my norm(which 8am cortisol for me runs slightly above high end normal) but finally at least within normal limits at midrange.

Sounds like your rheumy is tapering you down slowly, which is good. But if you continue to feel this way, suggest having that conversation on checking adrenal function with rheumy.

My endo explained to me that when on prednisone, which in effect is the same hormone as cortisol (corticosteroid), the adrenals tend to stand down on their production of cortisol. It sounds odd that you would only have three days of feeling quite "normal" between October and February on Prednisone.

If your rheumy doesn't want to "go there", consult with your PCP or with an endocrinologist. Actually, the better idea would be consult with endocrinologist - adrenals also fall under endocrine specialty. It is a bit strange that your "everything" was better on 10 mg, then when dropped to 9mg thereafter that your "everything" is flaring so much as you continue to be slowly tapered down off prednisone.

Amanda

[Carolina]

The Theory: 

1.  When we take Prednisone, we feel lots better, because it does away with the inflammation that causes pain, depression, etc. It also suppresses our immune system (which can be good or bad)

2.  When we take Prednisone our own Adrenal system STOPS producing the hormone (cortisol) that has some of the same effects.  Long term our own Adrenal system can completely STOP WORKING.  AND taking long term Cortisol can hurt our bones and other systems in our bodies.  It makes us feel good but it isn't 'good for us'.

3.  When we stop taking Prednisone, our own Adrenal system has to rev up (or start producing Cortisol) again.  This is not an easy or pleasant process.  I got definite withdrawal symptoms when I started cutting back, after only two months of regular use of Medrol (methylprednisolone) and I was only taking the equivalent of 5 mg of Prednisone daily.  This is a very very difficult process.  This is why doctors do NOT want to put people on Prednisone long term.  But sometimes it HAS to be done.

4.  So we are cutting back the artificial Cortisol (prednisone) and hoping for our own Cortisol.  But it will never be as much or as effective as the artificial cortisol.

This is the "rock and the hard place"  The rock is Prednisone, the hard place is how we feel because of our Immune Mediated (autoimmune/immune deficiency) conditions.

Karen, I wish there were an easy answer.  I don't have one.  I don't know what my doctor will do long term, and she doesn't either.  Right now I take 2.5 mg of Medrol a day (the same as 3 mg Prednisone). 

I felt so much peppier and better even on a low dose of methylprednisolone every day for two months.  Now that I am cutting back, I'm much tireder, much more depressed, having more pain.  And my doctor would like to see my off Methylprednisolone completely.

I do know of people who take 2.5 mg of Prednisone every day, or every other day, long term. 

But you aren't even close to there yet. 

I hope others chime in who have been on long term steroids, for better or for worse.  I'm sure you've Googled what steroids do to your body.  You know why your doctor wants you off.

Hugs,  Elaine (Carolina)

[littleone]

My wean from a 6 month, high dose course was BRUTAL....I did even out thou as my adrenals kicked back on (this felt like it took forever but was probably ab a month).

[Velcro]

Unfortunately, it seems to be the normal

My wean was rough as well and yes, I hurt more now.

[Ark mom]

I had this same problem.  I was on 10 mg of prednisone, which controlled most of my symptoms, while trying to find a med that worked.  Every time I tried to taper down from 10 mg I would feel terrible and would be in bed again.  Terrible.

Finally, I found a med that is working better for me, and for the first time in two years, I am able to taper down below 10mg.  I am down to 6.5 mg right now.  This is a HUGE deal for me, HUGE.  Even though I still feel some joint pain, jitteriness, extra fatigue, etc. right when I make another decrease, just as Carolina mentions, for me, it is mild and abates after 3-4 days.

Perhaps, you should discuss the possibility with your doctor that plaquenil, a relatively mild drug, is not enough to control your disease.  You will probably never find a drug that is going to make you feel normal, but there is a good chance that you could find one that helps you more than plaquenil.  I still take plaquenil, as it can be used in conjunction with many other medications. 

I really hope you get feeling better soon.

[littleone]

Arkmom - Congrats on finding some relief. That is simply awesome. Can I ask which rx is working? Cellcept?

I loathe, abhor, despise pred but I am feeling so badly that it actually crossed my mind today. I wont do it but hope to find a non steroidal alternative.

Have a great night.

[Ark mom]

Little one, yes, I am feeling better on Cellcept.  Prednisone is the drug I am taking with the most dreadful side effects, and so I am quite satisfied to be reducing the quantify of THAT. 

[KRNLMBCH]

Thank you for your experiences.  I didn't realize there were other choices "drugs" than Plaquenil.  I will definitely bring this up on 4/4 with Rheumy.  Honestly, Plaquenil or (Plaquenil with Prednisone) has worked wonders on my joint, hand, thumb, wrist pain.  Nothing, however has worked on my chronic painful, swollen area under my chin and down center of throat!  No Dr. (My GP, ENT,  2 Rheumy's, 2 different Otolaryngologists, and maybe 1-2 others I can't think of right now) has had a clue as to what is causing it.  They just feed me pain meds.  Whatever it is that's causing this chronic swelling, pain, pressure (with redness over swollen areas) could also be the culprit causing the extreme fatigue, brain fog, general feelings of blah, with "zilch" for energy.  I heard it could take up to 6 months for Plaquenil to work and I just reached 4 months and when I said began to feel normal, I meant, I had 3-4 days IN A ROW where I felt normal.  CONSECUTIVE days of feeling normal (as normal as one can be with A.I.) is something I have not felt since way before October and starting Plaq. and Pred.
 I always follow the great advice I get here and I am going to contact an endo. and talk to my Rheumy about maybe trying a different treatment plan.
Again, Don't know where I would be without all of you!

[warmwaters]

Perhaps you could also look at a slower taper. I'm one of those people who "over responds" to many meds. My rheumy knew that, and so had me go down 1 mg per month for my Prednisone taper.  Just another thing to talk over with your doctors.