Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: eija on January 08, 2013, 02:29:13 PM

Title: Finished prednison - symptoms worsening?
Post by: eija on January 08, 2013, 02:29:13 PM
I just finished tapering off prednison a week ago. The dosage was small for a long time (the last two weeks 2,5 mg every second day) and the tapering took several weeks in total. Now I'm wondering if I'm having stress symptoms or slowly going towards a flare:

Joint pains. They're clearly increasing even though still arent so bad that I'd need painkillers for them. My finger joints hurt at times again and my shoulders ache again. Also my hips have started disturbing my sleep again. Also my heels start to ache very easily, especically in the evenings when I'm sitting on the sofa with my computer and keeping my feet on the floor. It feels like having walked miles and miles on a hard surface.

Headaches. I'm prone to have recurrent migraine-like headaches. They cause me a lot of absencies from work and I did have them also during prednisone. Now I've been on sick leave since the end of November. At first the headaches were gone for weeks but since my working ability was put under study I've been having them again. I'm very nervous and anxious and worried about the study and the results so maybe it's that...?

Eyes. My eyes have been killing me, they're so dry and itch like crazy even if I've been splashing drops in them.

Skin. Yep, winter does its thing, too, but my skin is very dry too. And I think it goes with my air pipes, too because I have an intermittent dry cough and in the mornings I need to drink something hot and cough to get all the mucus out :P

I'm also tired, feeble and powerless. I'm wondering if things settle down after a while without prednisone - or are they just going worse, so that I eventually need to start it again?
Title: Re: Finished prednison - symptoms worsening?
Post by: Joe S. on January 08, 2013, 05:13:06 PM
I post so you can see what I am taking. I do not take Pred, I take supplements. You can PM me if you have questions.
Title: Re: Finished prednison - symptoms worsening?
Post by: lolo1979 on January 08, 2013, 05:51:22 PM
I think this is common after stopping prednisone -- speaking from personal experience as well as what many others have said. I think it will probably go away for you provided you are getting started on another DMARD?  Are you on plaquenil or anything else?
Title: Re: Finished prednison - symptoms worsening?
Post by: grammad97 on January 08, 2013, 06:07:33 PM
I just finished a second round of prednisone first was a 2 week high low taper starting at 40mg. At week 3 symptoms came raging back so doc put up to a 60mg to 5mg taper for 6 weeks. I am also on plaquenil 200mg 2x day and have been for almost 4 years.  My symptoms have come  raging back. Doc is going to try me on methotrexate at next visit since prednisone did not help as well as it should have.
Title: Re: Finished prednison - symptoms worsening?
Post by: eija on January 10, 2013, 12:12:10 PM

Thanks for the answers.

lolo - I started Oxiklorin the same time as Prednison, about 5 months ago. I believe Oxiklorin is equivalent to Plaquenil.

So, what you're saying is pretty much that if the Oxiklorin isn't enough then it's back to Prednison or moving on for Methotrexate?

Oh, well - I'll just hope the symptoms won't get worse than they're now.
Title: Re: Finished prednison - symptoms worsening?
Post by: irish on January 11, 2013, 08:23:30 PM
Actually, When you start the plaquenil and add the prednisone, docs often leave the prednisone dose the same for a few months as it takes months for the plaquenil to kick in. Don't panic at this point.

If you are having the symptoms again the doc will have to probably start up the prednisone again and then wait another couple of months and taper off again. Eventually you should get relief from the plaquenil. If after 6-8 months of plaquenil with not relief--or even longer as everyone is different you may find that methotrexate is needed. Do not panic about taking that. I took it for about 4 months and I was feeling so much better and then I had another health issue that made it necessary to quit the methotrexate. Darn was I mad!!! Good luck. Irish
Title: Re: Finished prednison - symptoms worsening?
Post by: eija on January 16, 2013, 10:55:49 AM
Thanks, Irish,

I have a prescription for prednisone so that I can start taking it again if I get a flare. But as I don't like taking meds and especially hate prednisone I think I'll have to be pretty darn sick before using that option ::)  However, I'm not panicking, just wondering :)

Just noticed I've only been on Oxiklorin for  4 months, not 5. So it might take a while before it starts kicking in. So far I haven't noticed much.
Title: Re: Finished prednison - symptoms worsening?
Post by: Ark mom on January 16, 2013, 01:11:28 PM
I have been on prednisone (10-20 mg per day depending on flares), waiting for Plaquenil to work since April of last year.  After six months, I was feeling good on Plaquenil and 10 mg a day, but whenever I went below 10 I would feel bad again.  That is when we decided to try methotrexate. 

Now, after a few months of that at 15 mg a week, I am tapered down to 6 mg of steroid, and feeling okay, not great, but okay. My next rheumy appt is in a few weeks, and I suspect he might raise my methotrexate dose a bit more.  I have been losing hair, but I gladly trade my hair for feeling good and being able to be a good mom.  My 5 yr old already told me that I will still be beautiful if I lose all of it.  LOL.

I hope you get things figured out so that you can feel good again!  Peace and hugs. 
Title: Re: Finished prednison - symptoms worsening?
Post by: eija on January 20, 2013, 09:32:18 AM
Ark mom, I too am losing hair, more than earlier. When I complained about it to my rheumy she dropped my Oxiklorin from 7/week to 6/week - but now the hairloss seems to be even worse. The problem is that when I complain that, people don't really take me seriously because my hair is v.e.r.y. thick and curly. But the other day when I washed it I first brushed it - a huge load stayed in the brush - and then in the shower the drain almost got clogged up. And as if that wasn't enough, after shower a third bunch got stuck in my hairbrush again!

Can't but love kids and their devotion and admiration to their moms. Sadly it'll fade away by puberty ;)

Have you had any side-effects from the prednisone?

My shoulders have been killing me again, especially at nights. Usually the pains come and go but today the shoulder pain seems to be a around-the-day-thing :P Also the arch in my foot has been aching and my finger joints don't like doing anything :(

My next rheumy appt isn't due until in the summer. Besides, I'm planning not to go back to the same one but to find a new one. No idea where, though...
Title: Re: Finished prednison - symptoms worsening?
Post by: ktfabian on January 21, 2013, 12:55:44 AM
I've been taking Medrol, a corticosteroid similar to prednisone, for almost 16 years. I know how bad that is, but so far, my bones are good and healthy and the side effects haven't been bad. I've been on a steady dose anywhere from 16 to 8mg. We've tried a number of times to wean off, but once I get below 6-8mg for any period of time, I'm a giant flare, despite taking plaquenil, Arava (a step or two down from methotrexate) and Rituxan infusions.

I get the migraine-like headaches that just about push me over the edge on a daily basis when the dose starts to go low. Even at a current 10 mg, the headaches get bad at times. I've just dropped to 10mg after being at 12mg for at least a year. I'd like to get off it, but I  start having serious problems being able to write and type when I've dropped lower as well as other flare symptoms.

Keep your fingers crossed that maybe this time I'll get off. But, I know that if things get bad again, my doctor will choose to increase my dose again.

I hope you start to feel better,
Title: Re: Finished prednison - symptoms worsening?
Post by: eija on January 23, 2013, 12:53:48 PM
That's what I "fear" - that the symptoms go away with prednisone but always come back after tapering. Headaches are my problem, too, but I'm not sure if prednisone helped them or not. Then again, my biggest dose was 7,5 mg. I have a beta-blocker for migraine prevention.

Fingers crossed for you to get rid of the stuff!
Title: Re: Finished prednison - symptoms worsening?
Post by: MaryBee7 on January 23, 2013, 03:14:54 PM
I can't get in the same room with Prednisone, intolerance is so bad.  Maybe I should be glad maybe not.
Title: Re: Finished prednison - symptoms worsening?
Post by: eija on January 26, 2013, 04:29:59 PM
MaryBee, I hate prednisone. I tastes AWFUL no matter how carefully you try to take it without tasting anything. Also it upsets my stomach and causes nausea (of course it might have been Oxiklorin, too, but somehow I blame prednisone more). I fear with no end that the side-effects like weight gain, bloating, unwanted hair-growth, osteoporosis etc. set in.

That said, after a couple of days on that stuff my fingers and muscles were painfree, only the side pain was left.

So yeah, hard to know what to think of it.
Title: Re: Finished prednison - symptoms worsening?
Post by: jazzlover on January 26, 2013, 04:35:05 PM
Predisone and other steroids can create problems of their own.
Title: Re: Finished prednison - symptoms worsening?
Post by: Styx on January 26, 2013, 05:41:46 PM
You may want to consider something stronger that Plaquenil such as MTX, AZA or MMF, particularly for the joint pain.

Prescribing corticosteroids for typical Sjogren's symptoms is considered controversial. IMO, the literature is pretty clear: don't do it. Even if it does help, it's nearly impossible to justify given the side effects.

Title: Re: Finished prednison - symptoms worsening?
Post by: eija on January 27, 2013, 03:50:03 AM
Styx yep, I hate the idea of corticosteroids. But if nothing else helps... I have an appointment with a new rheumy in two weeks, maybe he will find something else for me. On the other hand, many say that Oxiklorin/plaquenil may take even a year before it helps and I've only been on it a bit under five months...
Title: Re: Finished prednison - symptoms worsening?
Post by: eija on February 07, 2013, 04:56:14 PM
So, I went to my new rheumy. I quite liked him.

He said about prednison that it should be "saved" for if/when the internal organs or nerves get involved. I don't have anything against that because the stuff kind of scares me.

Oxiklorin (Plaquenil): He kept that as it was. Said that it's a good medicine and that it "may prevent the illness from progressing to the internal organs".

Ok. But where does that leave me? Yep - popping painkillers. But I guess that's what life is now with this uninvited pain in the a**: Learning to live and cope with pain.

That kind of left me feeling a bit "unhelped". He did give me a prescription for paracetamol because it's supposed to be more stomach-friendly than ibuprofein, and also gave me something to protect my stomach from the painkillers. But still. I'm not good at being sick or in pain. Even a small dose of either makes me unable to function. :P

About melatonin he said that he doesn't know of cases where melatonin would've caused problems for a person with an autoimmune condition. That it's a good medicine. I asked him because a doctor in the occupational health institute described it to me for "normalizing" my rythm and improving the quality of my sleep. I haven't started it and I'm not sure that I will. I'll discuss it with my gp first.
Title: Re: Finished prednison - symptoms worsening?
Post by: Pisces24 on February 10, 2013, 07:20:51 AM
Not surprised it is bothering you more when you finished the pred. It probably hit 2 days after you quit??
I was on chemo and the oncologist had me on the pred for 5 days after each chemo. Two days after I finished the pred., that is when the symptoms would hit.  But I never gained an ounce of weight w/it.
Title: Re: Finished prednison - symptoms worsening?
Post by: Rachel F. on February 10, 2013, 04:25:56 PM
Elijah have they checked your blood work for thyroid disorder lately? This could contribute to sleeplessness, dry skin, aches, fatigues... good to keep track of that thyroid!
Title: Re: Finished prednison - symptoms worsening?
Post by: eija on February 11, 2013, 04:41:54 PM
Pisces I didn't pay attention to when the symptoms came back but it was gradually after finishing the P.

Rachel yes, my thyroid levels have been checked at least three times during the last six months - last time was less than a month ago. So I'm blaming Sj√∂grens for my symptoms - the Occupational Health docs are blaming deprsession but I don't feel depressed, my mood is just fine  ::)