Ive been off pred for six weeks now, was on it for three years and did the slow taper. Was doing ok for a while, taking only Tylenol or Aleve but suddenly all of what I had three years ago is back. Can barely walk so using a cane, neck and shoulders so stiff and achy and groin pain is just horrible.
im only 65 and going to see a neurologist next week. I know my rheumatologist will want to put me back on the pred but so nervous about starting it again.
my question is should I just test the waters by taking 5 mil to see what happens or first have new blood work done and then start it.
worked so hard to get off the pred but cannot go on like this, the side effects for me were not to bad but I did lose lots of hair and got dry eye......but now my life is just pain day after day and I can't suffer any more.
thanks,
Sharyn
So sorry, I had the same experience. Had yo go back on prednisone, and get pretty low but then flares happen. I have not made it back to zero yet, but I keep trying,
I’m so sorry to hear you in such distress. Something very similar happened to me last year...I got down to zero pred but I was in a high stress contract position and over 3 months slipped into total flare. Wait for Eileen to confirm but I think the worse thing you can do is a 5 mg test the water strategy. Start with the clinical dose: 12.5 to 15 mg. Get your bloods done first. Then take the pred. You’ll feel better. Good luck! Let us know how it you get along....
Thank you Harrie, I agree to get blood work done first and waiting to hear from Eileen.
dont know what I'd do without this wonderful supportive group.
Thank you Bethune, good luck on your journey as well.
Sorry to complicate things, but I might disagree with Harrie’s comment. I to manage my way to zero, and then during the first few months I had a series of flares Which made me realize PMR was still in me, still lurking. It seems to me that taking a quick hit of prednisone to temper the flare makes a lot of sense. But not so much prednisone as to become addicted once again. I believe that if you take five or 6 mg over day or two, you’d be safe. I think if you give it a try, as expression goes, no harm done. It’s a test and only that. If it doesn’t work, you can always step up your dosage for a longer period of time. I’m not a doctor so take my observations for what they are.
I am sad for you and sort of understand how feel and you are bound to be feeling 'oh not this again. So have a good howl and then shout at the moon and relieve your feelings.
I would not wait, PMR only goes into 'remission' there is no cure, as you well know and why suffer. You got through it once and will do it again and this time with more knowledge about yourself.
You have been there, done it and can probably write the book. Putting it off means it takes a greater hold, there is nothing to get in its way and it can and will run riot and you could end up with its big sister GCA.
I well know how you feel, but other people I know well, when the PMR came back, it was easier the second time around, they knew what to expect, what to avoid etc.
This time you do not need to lose hair - ask for Folic Acid it helps to stop hear loss.
I would hit it hard and fast, start with 10mg and see how it goes, if that works, stay there if not up it to15mg,
Hi Sharon
So sorry to hear about your pain. I’ve been dealing with PMR and it’s coworkers only since January. So I’m in no position to give any advice. But I do know the frustration.. as I’ve had weeks almost completely pain free, only to wake up in horrible pain. Feeling like I’m loosing days of my life, to stay on my prednisone reducing schedule.
I’m 51, and don’t know if getting PMR at an earlier age will give me a better prognosis?
I’m constantly getting blood work. My biggest concern is from my primary, who is concerned about effects that prednisone is taking on my organs.
Good luck 🍀
"My biggest concern is from my primary, who is concerned about effects that prednisone is taking on my organs"
By no means as much as uncontrolled vasculitis would, believe me.
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
Yes - try 5mg and see if that works. If not - try 10mgs for a week and then 5mg. I say this on the basis that top experts suggest adding 5mg to where a flare happened. It gives you some evidence to discuss with whichever doctor you see - but really, a neuro for PMR isn't usually very useful judging by other people's experiences. It is, after all, NOT a neurological problem.
It is a very common occurrence - people force a reduction and then discover a few weeks later that that low dose they were on was keeping it all in check but without it the inflammation from the still active underlying cause of PMR has built up and they are back where they started.
You will probably find you can get back where you were before you stopped and on a very low dose - and get your life back without too many problems.
I had longer than you before it came back. I had to go back to 15.
Can you not get some bloods done urgently and if the indicate it is PMR avoid letting the pain get too much of a hold?
One of the more sensible things my doctor told me when I started pred was that many of her patients keep a supply of 1 mg pred on hand for just such an eventuality even when they are off pred, in case they need it. I think the idea is that eventually these occasional doses get less and less necessary and after a while the patient doesn't need them any more. What this does, of course, is allows you to keep control of any residual inflammation so that a true flare does not develop necessitating a larger dose to control and a whole new taper. This is what I expect to do if I ever get to "pred zero".
It could be that 1 mg or .5 mg was really all that was needed to keep your inflammation under control, but the disease was not fully in remission.
Well, Sharon, you can see the wealth of resources available in this group! I think Daniel’s point is well taken wrt starting with 5 mg as Eileen confirmed. I’ve tried the up-by-5 mg approach too but it didn’t make a discernible impact. I also tend to under-dose because I hate taking drugs but I’ve learned that a sub-clinical dose is counterproductive. So as as another respondent said, the last time I went in fast and hard with a 15 mg dose to deal with the pain. I immediately restarted the taper though, as soon as I had my body back. Then I put in for retirement— but that’s another story.
You’re in good hands with this group....hang in there, sweetie!
Hi Sharon sorry to hear that PMR has raised its ugly head again, were you PMR pain free up till this flare. If not what was the level you were pain free.
EileenH is far more knowledgeable than I, but I would use that pain free dosage plus 5 mg for 3 days, see if that reduce the PMR pain.
Thank you all, Eileen on my way for blood work then going to try 5 mil to see what happens, can barely move today and cried all night, the shoulders are burning and aching at same time and legs not wanting to move.....feel like a truck ran over me so I don't care what the effects I need some relief and will take whatever necessary.
HI Michdonn and thank you for your response.
im having blood work done in am tomorrow and starting with the 5 mil. My Rheumy is on vacation til July but he was kind enough to call me and order the tests.
he greed to take the pred for a few days to see if it helps.
i was about 75 percent pain free, after tapering down to zero almost two months ago I was tolerating the pain and an Aleve at bedtime helped but now it's just so much worse,
Hi Sharon, Why wait for the blood test especially when you are in such pain? So often the blood work does not rise much at all, if at all, as was my case, and I was practically crippled before I started pred. Please help yourself NOW! Good luck! Elinor
Hi Sharon, Why wait fo the blood tests when you are having such pain, which I sincerely sympathize with. The labs don't always show much of an increase, if any, as was my case, and I was practically crippled before PMR. Many doctors depend way too much on the blood test results, but you know how you feel. In your case I'd start with 10mg. to get yourself in less pain. It doesn't have to be forever. Good luck! Elinor (a 2 1/2 yr. PMR veteran)
Thank you, I'm taking this advice because suffering is the pits......its sheer agony waking up and not being able to move.
It's kind of upsetting coming this far but once I see I'm in less pain I'll stay at that dose for a while before tapering.
Wow, thank you Eileen for directing me to a useful website.
During my initial month of PMR hell, I ended up with horrible GI issues. That may have caused the concerns of my elevated pancreas, liver and kidney panels: now seeing a GI as well. Seemed to have happened so quickly. May have nothing to do with the prednisone.
Priorities have hit hard the last months; days with limited pain trump my moon face😜.
Thanks for your advice