Hi. I am new to this site. I have had PMR 3 years and GCA 2 years. I have been on presnisone for 3 years, first 10 mg for the PMR, then started with 60 for GCA and am now finally down to 1 mg. The last 5 mg has been awful. My GP has given me every test in the book to find out what is wrong and the rheumatologist thinks that as long as my sediment test is fine, nothing is wrong. Neither doctor has ever mentioned any of the symptoms that I have as part of the disease and neither has ever mentioned the word "flares". I have come to think of myself as a hypochondriac until I started reading what you guys are writing.
So my question is - what happens in a "flare"? What are the symptoms of a "flare"? How long do they last and what do you do about them?
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dawnsgca
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What is a flare? A flare is a return of the symptoms that were originally diagnosed as PMR - or a few additional ones if you are unlucky!
It can happen for two reasons. Either way, the result is that the dose of pred you are on is not enough to manage the symptoms being caused each day by the ongoing autoimmune disorder that underlies what we call PMR and GCA. The symptoms are not the disease - they are the signs of that underlying disorder that causes your immune system to attack your body by mistake, as if it were foreign not self.
The disease process may be steady and your doctor tells you to reduce your pred dose too far or too fast - and you overshoot the dose you need to keep you reasonably symptom-free. Or you may have identified that dose and be happy enough for some time - and then the activity of the autoimmune disorder increases for some reason - maybe you have an infection or you have an accident, emotional stress, physical stress. The immune system is upset and kicks your body harder. The result is increased symptoms. Since you are still on pred - you may not have raised blood results, some people just don't.
Below 5mg your body also has to start to produce its own corticosteroid. After a couple of months on high dose pred your adrenal glands stop producing the body's own corticosteroid, cortisol, because it knows there is enough steroid present in the body. Once your reduce below about 10mg the body has to start to top up the level to the amount the body needs. The adrenal glands have to wake up and start to work - and they may be a bit reluctant or the rest of the very complex feedback set-up struggles to get fine-tuned again. The slower you reduce below 5mg the better the body copes to keep up. Low corticosteroid levels cause quite typical symptoms.
Without knowing more about how you feel, what your symptoms are, it's difficult to say more. Tell us - and we'll comment!
Thank you for your reply PRMpro. Reading your post made me have a good cry. I have felt so useless and stupid the last few months because I can't explain to my doctors or myself why I don't feel good. Your reply was such a relief.
I did forget to mention that about 1 1/2 years ago, the doctor put me on 9 mg of methodextrate once a week so that we could reduce the prednisone.
My symptoms - the PMR started with muscle pain. By the time I admitted that something was wrong and that I needed to see a doctor, I could hardly move, especially in the mornings. Along with that, I needed to take a nap because I would suddenly feel exhausted in the late mornings and could not stay awake.
When I started with GCA, the symptoms were that I thought I had a sinus infection; the symptoms were basically the same. After that, the napping continued, but other than that I felt pretty normal until I got down to about 6-7 mg. of prednisone. The last 6 months is when I have really felt sick - daily, as I reduce the prednisone - as I said until I am at 1 mg now.
The symptoms now - dull, all-over headache almost constantly; blurry vision, sore throat, confusion, overall exhaustion, joint aches (especially in the morning) - these all every day. But the wierd thing is that my 5-6pm, they almost always all go away and I feel like the old me. Also, in addition to these symptoms, I often get sick to my stomach, dizzy and sometimes my breathing is somewhat labored. I also seem to get low grade fevers every few days. Also, my pulse tends to go high at times (115).
A couple of things to note. I quit my part time job last week. I thought between working, grandchildren care, volunteering and just life, maybe I just need to slow down. So far, I have not improved. Another important thing is that 6 months ago, I remarried after 15 years of living alone. Marrying at 68 and learning to live with another person then can be stressful. Could that possibly add to the problem?
I hope this helps. I would appreciate any opinions. If the stress from getting married has added to my health problems, would higher doses of prednisone help?
Also, if you recommend raising the prednisone dose, how do I convince my rheumatologist when she bases my care only on the sediment tests.
It's difficult to say - but I think a ACTH stimulation or synacthen test might be a good idea for a start. That would show whether your adrenal function is potentially OK - because what you describe could be typical of poor adrenal function.
And yes - the stress of readjusting to sharing everything with a stranger after 15 years of peace and quiet (if you see what I mean) could well be enough to stress you out enough to struggle for a lot of the time.
How do you convince your rheumy? If I knew that I could be a very rich woman! You are in the USA aren't you? Do you also have an internist? Or who is your PCP? You could start with them to get them to assess your adrenal function and ask them what they think about that aspect of things.
And one thing you can try is a few days of 5mg and see how you feel. If it doesn't help at all you can stop and go straight back to 1mg without any problem (well, no more than you already have). But if it makes you feel much better - it is either adrenal insufficiency or PMR. Either way - the answer is the same: a higher dose of pred in the first instance. Adrenal insufficiency is probably better managed using hydrocortisone which you take more than once a day but that is a detail at present.
But I'm sure others will be along to offer their thoughts later too.
One more question for now. You have been more helpful than you realize. Do my symptoms all sound like typical symptoms? What about the symptoms reducing or leaving in the evening? Is that normal?
I don't know I'd say it is normal - after all, what is normal when you are ill? But the production of cortisol in the morning is to allow your body to get going for the day. If you aren't producing enough you will struggle - but I think another shot of cortisol is usually produced in the afternoon and maybe by then it is enough for you to feel better. I'm not an endocrinologist so don't quote me on that!
But I do think it is perfectly reasonable to go to your PCP and ask for an endocrinology referral because what you describe COULD be poor adrenal function. It is a very complex thing - it isn't just the adrenal cortex, the pituitary, hypothalamus and other organs are involved too.
And if it is PMR, by the time you have got through the day you do often feel much better in the evening. I used to, even without being on pred at all.
To me, my flare up was worse than my original symptoms. I had been lowering my dose of pred to quickly and then Wham! I increased my pred from 3.5 to 9. It has taken me six weeks to feel better. I expect if I had increased my pred even more it wouldn't have taken so long. I'm only guessing. I couldn't get to see my Rheumy so I made the decision myself. I am so careful now. Wish my doctor and Rheumy were the experts on me. "I" shall be the expert on me, soon. I haven't got to the point where my adrenals need to wake up yet. That might be a brand new challenge to me. It's all new and this is my second time around with PMR, with 13 years in between. I guess me being older and my body not the same, the symptoms and treatment are different. I wish you all the best dawnsgca.
If you were down to 3.5mg then you were well beyond the point where your adrenal glands have to wake up and would have noticed before then if they weren't functioning well.
You're absolutely right PMRpro. But I didn't know why I was getting progressively worse. I was on 3.5 mg for 4 days,( 4 before that. )My Rheumy encouraged me to decrease the dose 1mg a week as he wasn't convenienced I had PMR after all. I did lower the dose a bit slower than that but 3.5 was the point where I couldn't stand it anymore. I then discovered this forum and I have learned so much so quickly. Very sharp learning curve.
My doctor wasn't sure if I had PMR but I assured her I had. I am now on 5 mg and struggling but I certainly feel better evenings. Some morning's I have trouble moving the bed clothes, I am just so sore and my hands swell up too!
Your reply was just brilliant. I am slowly reducing and have been in a bit of pain last few days. I started on 10 mg and each month have been reducing. I am now down to 2 mg.. I feel great but has been a bit rocky dropping from 3 mg to 2 mg.
Going slowly is definitely the way to go. This site is amazing, I just love all the feedback we receive. Take care xx
Could a bad cough and torrential rains be related to increased PMR pain? Decreased Pred 1 mg to 15mg on Wed. How long before Pred withdrawal symptoms are ruled out for increased pain?
Any infection can and if you are weather-sensitive so could the (presumably) low pressure bringing the rain.
Withdrawal symptoms usually start immediately after taking the lower dose and then improve over a week or two. That's why my reduction plan only challenges the body with the new dose one day at a time, going back to the dose you know is OK inbetween. It takes my body 3 challenges and then it decides OK, I'll stop complaining.
Thanks for your quick response. I seem to be fine the first 2 days after a reduction then have some increased discomfort. It happened after last reduction but went away after a few days. I toughed it out! I think decreases are more challenging now. I will take more time before changes. Two weeks of new dose may not be sufficient. Must remind myself not to rush.
I think there will be some left-over effect from the previous dose so it may take a couple of days. But it suggests you are getting closer to "your" dose - in which case 2 weeks is short to be sure it is still enough.
If it increases, go back immediately. If it is stable or improving give it a bit longer. You can always go back, wait a couple of weeks and try again. Maybe even just try 1/2mg - as you lower the dose the % change increases. Never more than 10% is a good rule but even it can be too much for some people. Only you can tell.
I think 1/2 mg decrease is a good plan. Glad to have a strategy. It took so long in the beginning to get relief. Started at 10mg then got up to 25 over a few weeks of suffering. Stayed there for quite sometime before reducing. I think I am became sensitive to change when I hit 16.
Flexibility is really important in the PMR arena. Not easy for someone who always counted on predictably! Glad I don’t have to face this alone. Couldn’t live without your advice and that of others on the forum.
And welcome, very good advice from PMRpro as always, and no you are not a hypochondriac- just a patient who has not been very well advised by her medical team!
If your reductions from 5mg have been awful, then either the inflammation caused by your GCA/PMR is not under control (not high enough dose of Pred) or your adrenal glands are not working again, or more likely - a combination of both!
If you come back with specific problems, we can and will help.
You asked first what a flare is and it probably is different for everyone but we would agree it was the worst we could feel. I had aches and pains described online for so long I thought it was The aging process. I'm 67. Then my hands swelled and hurt very bad and I knew it would get worse as I have had this 2 times now. It was misdiagnosed 13 years before so when what I call a flare is what happened next. I felt like a wave of heat moved over my body and down my arms. Overnight I lost all my strength and had such pain I could not turn over in bed. I needed help getting to the bathroom. I lost all my appetite and threw up if I ate. My arms felt like glass that would break. None of the painkillers touched this pain and it took 2 months to see an RA. The doctors assistant I was given was fresh out of school. I suffered needlessly for too long without Prednisone. That's what I call a flare. A flare up might be some of the pain returning.
Dawn, welcome. I consider myself very lucky to have found this site soon after getting PMR. It has kept me from feeling scared, alone and confused by this strange illness. It is so hard to stand up to professionals who seem to think they know how we should feel. Is it a headache or GCA? Is it the illness or a side effect of the Pred?
I was diagnosed Dec. 12, 2016 and am tapering by .5mg a week now. Tomorrow I'll be at 15. I've found that two days after a taper I'm in a down mood. No particular reason. But it has been consistent. And if I overdo, I can feel the muscles ache even though I my markers are way down and I have full range of motion. I overdid last weekend, not a lot, but too much for the PMR me and the last few nights I've awakened between 5:30 and 6 am feeling a faint version of the cytokine dumping that was very painful before the Pred. took hold.
I have a good working with my rheumy. I may hold off on the taper tomorrow morning if I don't feel quite right or if it happens again tonight.
However I may feel in the morning, I've always felt normal in the evening. Even before any treatment.
Hello dawnsgca..Thank you for putting this post on and i wish you well , in 13 years with PMR i have often been made to feel like a hypochondriac. Stress is definetely a big factor. PMRpros answers to your post are so wonderful reading , when i read the replies on this Forum i know i am not alone but just can't achieve my goals .Good Luck and just keep fighting . trish29
Hi PMRpro. Or anyone else that might know,I wonder if there are any meeting houses around Surrey that might have help for people like myself that have had PMR a long time and just can't get down on the steroid?? I missed the last meeting at Chertsey as my Eldest Brother was very ill in Hospital but unfortunately died on the 20th Feb..we haven't had the funeral yet its next Weds 25 Feb..i have been trying my hardest to stay strong but strange enough the day he died i went down that night with an awful cough virus. I had got down to 15:05 steroid but had pain particularly in my upper arms and shoulders so i put myself up to 16mg but on Monday night this week i had a horrible flare to my right leg again so at the moment i am just resting and up to 17mg steroid and feel better this morning and the pain is less. I haven't been able to have my Bowen Therapy because my partner had a small eye op so couldn't drive but i have an appointment tomorrow and looking forward to that. I don't have an appointment with Dr Hughes until the 4th May and all i get at my GP practice is different Locums who aren't very sympathetic towards PMR. A year ago my goal was to get to 12:05 mg before my next appointment with Dr H and here i am back to 17mg , Just tearing my hair out but trying to stay calm because there is no way i want to miss the Funeral . Best wishes and i hope you had a lovely holiday ..trush29
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