I just found this board and have so many questions -- and am so afraid I have this. I'd greatly appreciate hearing from others more exprienced with PMR and chronic muscle pain. The symptoms I have are just so on target:
muscle pain so bad it burns, even around my rib cage when I breathe; centered on neck, shoulders, legs -- and sharp pain in certain places (arms, joints, soles of feet). I can't wear shoes because of a pinched nerve feeling on the bottom of my feet; I have terrible fatigue, stiffness, and am sore all over. No energy. I just want to lie down all the time but it doesn't help -- it seems to make it worse. And the cold here in Boston is ravaging me.
I developed this three weeks ago so my PCP is still thinking it may be a virus -- though he has run certain tests that came back normal -- but not a set test.
Can someone with experience with PMR tell me (1) what may have set it off and (2) if you think I have it.
The onset was sudden -- low-grade headache and stiff shoulders and neck; it set in Jan. 25 and hasn't let up. The odd thing is I'd been on prednisone since June for AIT (Amiodrone Induced Thyroiditis). I was hypo- then hyper- thyroid. My thyroid was shot. It's been a long haul but I "saved it" and it looks like it's going to return to normal. I did this by stopping the Amiodarone and taking prednisone (with Bactrin, Calcium and Vit D) for 6 months. Now my thyroid has returned to its normal mildly hypo- state and I will add a small amount of Levoxyl next week.
My adrenals were tested and are fine so I quit the 5 mg of prednisone one week after the muscle pain begain; however I had dropped from 7.5 mg to 5 mg the week before onset.
And a month before -- at the end of December -- I stopped taking premarin after 13+ years.
I'm thinking the prednisone actually left me open to PMR by 1. supressing my immune system, 2. weakening my muscles and 3. erroding my bone density. Then I suddenly stopped both premarin and prednisone (which may have been masking the PMR). Stir in the bone-chilling cold were having here and it was a recipe for... disaster (PMR).
I've suffered so much with the a-fib and thyroid problems over the past year, I just can't face this pain! I don't know if it's temporary -- or if I even have it -- or what to expect.
I REFUSE to go back on prednisone. The bloating made me look 80 yrs old, the weight gain was dangerous for my heart, and it depressed me.
I took some premarin today and feel a little better.
I know this is a little rambling but, basically, I wonder if long-term use of prednisone can actually trigger what it's used to treat? Is that weird?
Any advice will be greatly appreciated.
Thanks very much!
Julia
How long were you on prednisone when you reduced from 7.5 to 5 mg per day? If you were on it more than a few weeks, a drop like that could very well be responsible for the pain and extreme fatigue. Then going from 5 mg. to nothing was a very big and sudden jump for someone who had been on it for a while. It might be best to talk to your doctor about the withdrawal symptoms when weaning from prednisone. I'm not sure of when it becomes dangerous (possibly life threatening) to stop suddenly, but I believe it's if you've been on it for more than 3 or 4 months. I don't know what test they do for the adrenals, but I suspect it would still be a shock to the system to stop prednisone suddenly.
I agree with Ruth. Any sudden stop in pred. after you've been on it for some time is not a good idea, unless you were at 1 mg. maybe when you stopped. If you were at 5 and stopped suddenly, that is not so good after having taken it since June. You shold check with your dr. I know also, that when you stop pred. after being on it for some time, the "withdrawal" symptoms can be much like PMR symptoms, so it would be hard to tell which it is. Again, check back with your dr., and maybe ask for a sed rate test.
Reni
Julia
If you Google "tapering prednisone" you can see that you have to be careful when tapering. You have probably gone much too fast and therefore you have bad side effects.
In my case (I have been on 5 mg a few months and have just gone down to 3.75 = half a 5 mg pill and half of a half) I havenīt noticed any side effects of prednisone for almost a year, but twice I had fatigue when I tried to taper down from 5 mg before.
Ragnar
Julia, they dropped the prednisone dosage too fast. I'm with everyone else. it will throw you into a very painful relapse. Unfortunately doctors are administering this drug from hell without knowing all they need to know about it. I hate it too, but you have to taper very slowly or you will be right back at a higher dosage than you could have been.
When you get down to 10mg and you even drop 1 mg, that's 10%. You can't drop 2 1/2 when you're down that low. It's too much. When you are at 5 mg going to 4, that's 20%. So, it's actually a much larger percentage when you get down to the smaller numbers than it was at the beginning.
Also, I was just in formed by a new forum member on another thread today that thyroid imbalance causes muscle pain. I'm excited about researching that since mine is out of whack.
Bless you child. We all know how frustrating it is.
Thank all of you so much!Hi, Julia - It's quite possible that the pain and fatigue are from prednisone withdrawal and that you don't have PMR. You should talk to your doctor, one way or the other, but if I were you, I would go back to at least 5 mg. and set up a program to taper off more slowly. Most rheumatologists recommend tapering by only 1 mg. per month once you get below 10 mg or so. If your adrenals are working, you may be able to taper faster. You can try 5 mg one day, 4 the next, for a week or so, and if you're fine at that level, try going to 4. The doctor can make recommendations, but ultimately, you are the one experiencing the pain and fatigue so you are the one who can judge whether you are tapering too fast. Good luck to you!
(Nobody likes to be on prednisone, so it's a question of the lesser of two evils! How much pain is it worth to you to be off of prednisone immediately? Only you can decide!)
Julia,