It's been about a year since I've stopped taking prednisone. (Due to severe osteoporosis) I have some serious problems with my lower back and neck too. Because of these other painful conditions it wasn't until this past five days that I realized that a considerable amount of my pain is related to my PMR. In the past month, in an effort to get me better after having pneumonia my pulmonologist prescribed 20 mg prednisone daily for 5 days. These past 5 days have been glorious. Almost without pain at all. But all good things must come to an end and today was my first day without prednisone. I thought it might take a day or two but it hit me hard today. The fatigue is astronomical and the pain is creeping back. I am not looking forward to going back to what I was dealing with just five days ago. 
Prednisone, the drug you love to hate!: It's been... - PMRGCAuk
Prednisone, the drug you love to hate!
Oh what a shame. I do feel for you. I wonder if you would be a candidate for Actemra/ Tocilizumab or Methotrexate for the PMR inflammation ?Nothing seems to relieve like Pred though.
I've tried them all and nothing helped
I know why you gave up pred, but the danger to the bones is much reduced at low dosage. What was the lowest dose you were okay on when you took pred regularly? If it was 5 or below it would be good if you could get back onto a dose like that, it might take a little while to get there, and if it helps at least you'd have better quality of life. 🤗
I did try taking 5 mg a day for quite a while. And in fact, my rheumatologist permitted me to take up to 10 mg on occasion but not every day. I did not find it help me at all and the side effects were just not worth it. In fact when I started 20 mg it didn't help me immediately like it used to. It took a couple of days for me to really notice a difference. I must have a lot of inflammation in my body. I know my inflammation markers are always high. I take aspirin everyday but it's not enough.
Would agree with HeronNS, a small dose might be enough to keep the PMR at bay without doing too much damage......sometimes you have to balance the risks v the benefits......and a better balance might be less day to day pain.
I know what I’d opt for, but it’s your choice of course.
Unfortunately a low dose did not help me at all. I took 5 mg every day and was allowed to add another five mg occasionally. And all I got were the side effects without the benefits.
Again would agree with HeronNS, is it actually PMR?
Good point. My inflamation markers are high and with my pain being in my neck shoulders and lower back I assumed that it was PMR. Maybe this is something else. I have an appointment with my rhuemy coming up and I'll have to discuss this with her. TY
I am afraid that I do not know much about it at all. I was placed on Prednisone after the diagnosis of PMR. I know that my pain was almost immediately gone. So my doctor took me gradually of it. During an operation, I had flare up and my doctor placed me on Prednisone again after my blood test showed a re-appearance of markers for inflamation. This time prednisone did not seem to act as before. After a couple of week, my doctor increase the dosage and a week later sarted taking me gradually off. I was told one cannot stop pred all at once. Not being a doctor i cannot explain why.
That is all I know of Prednisone.
Hope you feel well soon!
So what was the longest you ever took prednisone?
“I was told one cannot stop pred all at once. Not being a doctor i cannot explain why.”
Because once you’ve been on Pred for more than a couple of weeks, your body stops producing cortisol (Pred is chemical equivalent). Therefore to avoid an adrenal crisis you need to wean off the steroids slowly to encourage your adrenals to start working again.
If you are on steroids long term like we are with PMR or GCA you should carry a medical card so that in a medical emergency everyone is aware of that fact.
These medical cards are not available to me. I don't know if that statewide or countrywide.
This is what is used in UK, (fir anyone in steroids, no matter why) - sure there must be something similar in US - just look on lines and download -
Oh no Amkoffee ! Same old dilema, again. 😱. I would like to say it is good to see you are still around, if only it wasn't on a (horrible health), web site. I have never found any other miracle cures, so unfortunately I can be of no help, other than the same old choice, prednisone-pain relief, no prednisone-no pain relief. I keep on trying other things tho....just in case. Take care of yourself.
It was several months ago when I decided enough was enough I'm done trying everything and getting nowhere. There just is not a good replacement for prednisone.
A friend gave me a voucher for a new treatment recently. I had a wonderful pain free week after it. I was cautiously optimistic, and had to suppress my bubbling internal excitement. I went for a second treatment, and it had the opposite effect to the first treatment. Burst my bubble again. I will however try it again a third time, in about a month. I will wait in hope.
Oh I can't stand the anticipation! Please tell me what treatment you had?
I did not want to mention it on here till I try again. I wasn't sure whether it would be acceptable on the site tho. Part of it was Reiki, part massage and a russian machine🙂
If it works, you can mention it, along the lines of - “it worked for me, so might be worth considering” ..so long as it doesn’t appear you are actually promoting it.
Thanks. I am certainly keen to give it another try as I am feeling better than I was a few weeks ago.
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