Body Pain 4 wks post Prednisone

Let me see if I can be more clear:

Was on 20 mg. Prednisone for Polymyalgia for about 1.5 - 2 years.  Almost immediately after getting off the Prednisone entirely, I was diagnosed with GCA.  Started at 40 mg., went up to 60 mg. and reduced down and back up and down again over the course of about 3 years.  Took my last 1 mg. tablet on Aug. 24th.  Body aches and weakness were not too bad...difficulty climbing or going down stairs or climbing in and out of cars.  Now my muscles ache even more and more weakness.  Tired and no motivation to do anything and I am a very active person, have been even through all the Prednisone.  4 mile walks (reduced to 2 after a back fracture) and 2-3 days a week of Pickleball.  Doing nothing now due to lack of energy and body aches.  Dr. does not think it's withdrawal, but I kind of do think that.  Just wondering what others have been through after getting off long term high dose Prednisone.

Have you been checked to find out if your adrenal glands are functioning fully?  You may need a maintenance dose of pred just for that for a while longer.

Not yet.  My appt. with Endocrinologist isn't until Feb, but Rheumy sent up my blood tests to see what he thinks and if he wants to get me in earlier.  Was also thinking along those lines although I hate having to take any Prednisone at all.  If it's just a matter of time, I can deal with the aches.  Was just worried that it wasn't withdrawal from the Prednisone.  Thanks for responding.

Don't know if this would be relevant in your case, but when I first started on pred, my GP (I've not seen any other medical ppl other than the eye doctor) said many patients keep a supply of 1 mg tablets even when they are "off" pred which they take as they need to.  Eventually the idea is the need happens less and less often and eventually they don't take pred any more.  It sounds to me like a continuation of a dead slow taper just to keep pred withdrawal or any lingering PMR in check until the disease is finally in complete remission.  I haven't got to that stage yet, so can't vouch for its effectiveness, but it does make sense to me.

That's a good and reasonable thought.  The thing is, the very last pill I took after the dead slow method when I was 5 days off and 1 day on, made me feel worse than the days I hadn't been on any so am not anxious to try another one.  Would not surprise me if that was my endo's recomendation.  Just glad to know these symptoms probably are withdrawal and not something else.  Don't know where you are on y our dosage, but with you luck with it.  Thanks for response.

Your response to my query needs a much longer answer and a tiny bit more information please.

When you went into remission with your PMR, did you have any aches and pains or were you completely pain free?

If the former, then if it was still lurking and not in remission, this could explain the onset of GCA.

What was the date you were diagnosed with GCA.  It is still unclear to me for how long you have been treated with pred for GCA. It is clear you stopped your pred on 24th August 2016.

I see you have you been referred to and Endocronologist for a Synacthen Test  - is it possible your GP could expedite this test?

When you respond I will answer as quickly as possible.

I don't think I can be anymore clear than I have been with the exception of answering your question about Polymyalgia.  No, when I went off Pred for Polymyalgia, I was not having any more pain.  I was having headaches which is why I was biopsied for GCA.  I've asked my Dr. if she thinks it can be my Polymyalgia coming back but my markers are clear.  By the way, just out of curiosity since you asked for clarity about this, what does it mean in the UK when someone "gets off" something? Here it means they were on something such as a medication and then then they got off of it.  How many meanings can there be?

I smiled at the 'get off', it can mean so many different things in the UK.  Although a small island it has many accents and dialects.  Even I can get confused just being 50 miles away from home.

Thank you for the answer re PMR.  I did wonder if the PMR had raised its ugly head again along with the GCA.  The ESR and CRP can and do not always be raised.

It sounds as though  you have a good Rheumatologist and I sincerely hope that when this problem is solved you come back and tell us all the result.   We live and learn.

I don't think I can help anymore except to say that I do hope you get

That's an interesting comment.  I'd been finding as I tapered that at a certain point in the taper I also would find I didn't feel so great the day after taking the higher dose.  I've reached my lowest possible dose for the time being, which seems to be 3.  I didn't have any days when attemptng to taper to 2.5 when the higher dose made me feel worse.  That could be another signal, one to keep in mind when I'm ready to attempt another reduction.  

Thanks lodger...your response evoked a smile from me too...those two words can be used here too as slang for something totally different...just didn't think anyone would go in that direction.    Take care.

I can be of no help here, but I am courious.  The pain and lethergy I have every day sounds like what you are describing. I have not taken any meds from the doc what so ever as yet, and wonder if this is just how the disease feels.  The pain never completley goes away, you just kind of get used to doing things differntly. 

Definitely do a lot of sittling, not motivated to do anything; I have trouble getting my house clean and I was a clean freak before. I just cannot do it. 

I hope it is just withdrawal, but it sure sounds like how I feel and I have never been on seroids. Your thoughts?

Hi Dee,

i think you got lost in the shuffle, here.

you really should start your own discussion.

i am not clear as to whether you were diagnosed with PMR, or not.

If you were, and are refusing to take meds, that's a different discussion, altogether, and it's important for you to explain your situation, from the beginning.ThenThese wonderful, and most knowledgeable people, can give you good feedback, regarding your problem.

Barb

thanks, I'm new to the board.

So was I, 2 1/2 years ago.

None of the Rheumatologists, in my area, knew enough about PMR.

Luckily you have found this discussion group.

They will help you.

when you ask your question, again, be sure to give the entire history of what is happening to you.

good luck,

barb

dee53012

If you have never been on prednisolone, how can you think it is 'withdrawal'?

Withdrawal from what?

PMT if left untreated can and does lead into GCA and that is something no-one ever wants to encounter.

PMt should read PMR.

I also meant to add at the end of encounter  - something I would not wish on my worst enemy.

I have Polymyositis (am I in the wrong place for this disease?)

Ihave not taken any drugs as yet. Doctors have made so many mistakes with diagnosing me. I don't trust the system much.

I  was told by the doc that I needed high dose steroids or the disease will get worse.  I am just not sure the the docs are right about the drugs being better then not having them at all.  Maybe early death is better then 20 extra years of living with terrible side effects.

I am new to this disease stuff and the forum so please be patient. I have never been on anything like this. All the letters used are a bit confusing to me.  GCA, PMT, PM, CD, yadda yadda. 

I was attemtpting to compare the person who had the same painful muscle discription that is going on with my muscles even though I have no tbeen on the drugs.  I'm just saying that it may just be the nature of the beast, I have NO IDEA! The disease itself makes the muscles smaller, but the pred.  Maybe I am wrong, I don't know, I am just trying to decide if taking high dose drugs is the best for me. 

Sorry to have troubled you all here if I am in the wrong place.

Hi Dee, I was trying to find out if there is a forum on Patient for polymyositis and I couldn't find one.  With regarding whether PMR or prednisone cause the muscle wasting, in my experience, and I'm just one person, it's the pred.  When I was in the very midst of undiagnosed PMR there were a lot of thngs I couldn't do because of pain and restricted range of motion, but I could shovel snow, no problem.  Anyone who has ever shovelled snow for an hour or so knows this is no mean feat.  Since being on pred for well over a year I feel I am a little stronger at my current low dose than I was a few months ago, but in no way am I as strong as before treatment.  I can do all the tasks which require me to reach or bend or stretch or turn, which were limited with PMR, but I just don't have the same strength even to open a jar, let alone shovel the driveway, mow the lawn, or carry a heavy load.

I looked up polymyositis and it seems the disease causes muscle wasting, so it is very different in that respect from PMR.  Loss of strength in PMR prior to treatment is probably from an inability to exercise, not a direct effect of the disease itself.

Hi Dee,

My thought is that you should probably see a doctor.  Both my brother and I have had PMR.  Mine was much more severe...extremities pains were awful, neck and shoulders were on fire, my head felt awful and  I also felt like I had mumps.  Stopped right away on 20 mg. of Pred.  My brother also went on Pred. but on a lower dose for a much shorter time. Just sayin' different people get different degrees of things.  So you could have PMR...or one of a zillion other things including depression.  If it doesn't bother you that much and doesn't interefer in your life, that's great, but if it does, I would definitely get checked.  Good luck and hope you feel better.

I don't know about that Anhaga.  I was extremely active before I got PMR walked 4 miles at least 3 tmies a week with sprints in between and also worked in a deli part time lifting heavy machinery and walking back & forth enough at work to add up to miles.  I don't think PMR is from a lack of exercise, although I don't know what does cause it.  

Hi Dee,

Sorry...I didn't see this particular message of yours before I responded to see that you have Polymyositis.  Don't apologize for being on this site.  There may be a better site for you but I think everyone  just wants to be as helpful as can be and the suggestion someone made that you might not be on the right site I'm sure was not a criticism, but an effort to help you get to where you might get the most helpful information.  It sounds like a terrible disease so if Steroids will help, I'd go for it.  I managed to organize a social group with 4 or 5 events a month with 50 or 60 people in attendance the whole 5 years on Prednisone..  It took a lot of work and I had to be at all the events.  Sometimes I dragged myself out of bed, but when I got there I felt better.  There were only a few time I just couldn't make myself go.  What I'm trying to say is, yes, the side effects aren't great, but they aren't constantly awful.  Prednisone (as much as I dislike it)  allowed me to live a life I couldn't have lived if I hadn't gone on them.  Hope some of this makes sense.

Sorry, Anapp, if I wasn't clear.  PMR is not caused by lack of exercise.  I meant that muscle wasting was not caused by PMR.  Some people say they lost strength but it seems those are people who were undiagnosed for a long time and became unable to exercise enough.  

15 months ago, I had a biopsy of a rash on my hand. The lab stated it was indicitive of polymyositis, but a muscle biospy was needed to confirm. I know I have celiacs and will be tested for pernicious anemia. 

I have been through two rheum doc, after waiting MONTHS to see them,they both retired a month or less after I met them for the first time. Gerr.  My new MD is looking into getting me a new one, but it is slow going. 

I am certialy depressed when I have migraines and muscle pain, but when the pain is gone I am fine.  Pain causes depression, at least for me.  

 

After losing almost 3 stone I went to the hospitalwhere they gave me fluids, and when they let me up to use the restroom, I passed out, hit my face on the commode.  Yes, they admitted me, put me in ICU and intubated me because I was not able to breath on my own for 4 days. I don't rememerb any of it except my face hitting that pot.  

So yes, I would say I am troubled by this disease, but still, I am scared to take prednisone/steroids.  The more I read, the more I don't think I want the drugs. I do not judge others for taking it, it is a very personal decision. 

I do want to talk with a rheum doc, but it is not an option now.  It is in process though. 

Thank you for taking the time to share with me. I appreciate it. It is very lonely when you have to stay home most of the time. I am older and many of my family and friends are dead now and my husband died in 2010.

Making friends when old and too sick to get out is just no fun.  There's just not a lot to live for at this moment.  

Thanks again,

D

Dee, I hope you get some answers soon.

❤

Thanks Anhaga.  Appreciate the clarification.  Actually, my Rheumy said Prednisone could deteriorate your muscles.  I seem to have lost both muscle and strength post Prednisone.  Since it seems to worsen day by day, I hope somebody comes up with something soon.  So glad for this forum.  

You have certainly been through a lot, Dee.  I understand the depression and with the pain and inability to do things due to physical and mental condition, but please do not give up hope.  Don't know where you are but keep fighting to see a doctor and keep coming on here or other forums where you can get some support.  I know it's not enough when your head is in a bad place, but it's something.  And I appreciate your decision not to take Prednisone.  I've refused certain meds before myself.  I don't know much about polyomisitis but if Prednisone could make you feel better and give you your life back....maybe something to rethink?  

Keep the faith.

 

I wanted to thank you and everyone here who has been so helpful. I will make greater strides to talk with a rheum doc (if I ever get a new one!) again. I read the symptoms of PMR and it is not it. My symptoms are much more in line with polymyositis. Thankfully, after some searching this site, I found a small group here that puts all the muscle diseases into one lump, so thank you all. 

I am glad you have found the group you need, and wish you well on your journey!

Yes, that's my point.  I've certainly lost muscle strength since starting pred.  My doctor was a bit sparing of her warnings of side effects, only concerned, apparently, about bone thinning.  I was proactive about the eyes and the blood sugar, but only found out about muscle myopathy through personal experience and others mentioning it on the forums.

Think I was not clear either.  I was active both before Prednisone and while I was on it.  Only fatigue during reductions interfered and then I'd be active again.  I think you are right about Prednisone causing muscle weakness.  My Rheumy did mention that at last visit.  Not good to hear.  Hope they can be built up again.  I'm not one to sit around...unless I'm really tired.