I haven't been chatting in the last six months since I have been very, very slowly tapering off for the third time. Since I was going so slowly, all was well. I finally reached 1 mg a month ago and stayed on that for a month and then 1 every other day. I was off for only three days when I had the worst night ever. I felt like my entire body was burning up and it felt like nerve pain. My arms and hips (especially) and legs seemed numb and on fire. My SED rate was 29 (last week) and doctor said he didn't want me to take any more Prednisone because it was a dangerous drug.. I don't remember this severity when I had flairs before but then I was not on the drug for that long. I first started exhibiting symptoms six years ago and went from doctor to doctor and suffered tremendously. I was not diagnosed until November 2015 and have been on Prednisone ever since. Start dosage was 20. After first taper, started at 15. After second taper started at 10 and from there to the present tapering very slowly. I know the doctor is not going to give me any more Prednisone. He wants me to tough it out. If I knew this was normal I would, but it scares me. I don't want to go back to a full-blown episode. ARE THESE WITHDRAWAL SYMPTOMS (one week after discontinuing drug) NORMAL? Any one want to comment.
Robin
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Robinre
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Normal? No. But many people have found that 1mg/day is plenty of pred to keep the inflammation under wraps - within weeks or a few months of stopping pred altogether the inflammation has built up to the stage it is causing symptoms again. A sed rate of 29 says there is inflammation - that is high, even for our age and should be checked again to see if there is a rising trend.
Your doctor is a bit of a numpty - the inflammation of PMR/GCA does longterm damage to the vascular system as well as causing pain and disability. 1 or 2mg/day of pred will do no damage in the long term. I've been on pred for just 10 years now, for a lot of the time I have been at above about 10mg and have no identiable problems - no osteoporosis, weight gained but lost again, my skin is fine, bruising has more to do with anticoagulant therapy, etc, etc.
“Since I was going so slowly, all was well” - that says it all really! As PMRpro says a very small amount is doing you a lot more good than harm. Pity your doctor doesn’t realise that! And as for “toughing it out” - could be doing more damage to you.
Having read your previous posts and potted history, think it’s time you got a doctor who understands PMR and will treat you in the correct way!
I despair sometimes when I read the comments some doctors make about Pred. We all know it’s not a nice drug, but what is? And it does what it’s designed to do.
I bet if some of them had GCA or PMR they wouldn’t think it “dangerous” then, and it’s not a very professional thing to say to a patient.
Good luck, and please keep us informed of how things go for you.
I have told the doctor exactly that. He also said 29 SED rate (current) was normal and not high and when I said that my SED rate was at bottom of chart before I became sick, he disputed that and said that it was never below 22 and so I am sending him a readout of my chart showing a reading of 10 (bottom of chart). My highest reading was 48 when first diagnosed. Thanks for the replies.
This is very sad. 1 mg of Prednisalone has negligible side effects. I would happily stay there forever. Find another doctor. The body needs what it needs. Toughing it out is insane. The inflammation may well spread.
Has he not offered you any other non steroid medication to help ease the pain and neuropathic symptoms ?
Or are you already on something for nerve pain that he has increased?
It seems unusual that you would have such a rapid and severe reaction in inflammation to finally getting to 0 as just a side effect of withdrawal , especially as you took the last stages so slowly.
But then withdrawal symptoms can have terrible side effects too , just not usually at that severity on such low dose levels.
Your inflammatory marker was obviously showing some level of inflammation , did the GP take any other blood tests to establish if it could be from some other cause , like an infection or other joint issue inflammation.
I don't know why they think toughing it out without some form of support is going to help you succeed in staying off the steroids , it might have been better for you to continue even a tiny dose taper like some people have spoken of at 0.5mg , just to get you past this sort of reaction .
Especially if the PMR has finally limited in activity , just to cover the bases and prevent a flare of any form of inflammation causing you ongoing discomfort or new problems.
Take care , and rest well through it , but if the symptoms aren't reducing go back and get some proper help. Better to stay on a low dose for a while , or get another appropriate treatment for the specific inflammation involved, than get to the point that it's uncontrolled and you have to return to a higher dose.
This is such a good point. The doctor could be thinking of other issues affecting his patient and not just limiting diagnosis to PMR- certainly not telling her to get on with it. That’s what we were told in the bad old days!
My very sensible doctor told me right at the start of the PMR/pred adventure that I would have a lot of say over the taper process. Also that she had patients who even when they were "off" pred kept a supply of 1 mg tablets on hand in case they needed them. Assuming there is no other condition causing your current flare I think PMRpro is right, you simply needed that 1 mg to keep things in hand.
You do say that you've tapered off three times, which rather suggests that your PMR never did go away properly. If it can be managed with 1 mg, no doctor should be concerned about that. And eventually it is very likely to go into true remission.
I agree with others here - and I'd 'sack' your doctor who clearly knows very little which is not helpful at all !! Unfortunately this is still an all too 'common' story here - medicos who are not well informed - at best it can be unpleasant even cruel to 'patients' at worst it can be downright 'dangerous' and possibly amount to negligence when people with GCA (for example) end up losing eyesight. The real irony is in their efforts to get you off a drug they somewhat niavely consider 'dangerous' (it has been shown to be not nearly as problematic as previously thought) they can end up encouraging multiple 'flares' which then mean people end up taking a greater cumulative dose in the long run. I can only encourage you to be as assertive as you possibly can be when negotiating all this - remember it is you and your health at stake and you must advocate for that as they wont be losing sleep like you are !
Get a new Dr and next time you get to 1 only taper by .5. When I got to 5, I only tapered by .5 every month for fear of flare. I never did have any, but it took a little longer. Now off since Nov, 2018. Pmr on prednisone for 2 years.
Makes me sooo angry those doctors telling YOU what to do. I have been taking 1 mg for six months now, and if I try two days on 0.5 my pain is so severe, I go back to 1mg again....I tried again today..0.5 which I managed ok...1.00mg tomorrow and then... take it as it comes... I know the moderators don t like me saying this, AND the less doctors involvement the better, all they do, well most of them when I read these stories on line, is making people wonder whether what they feel is OK... of course it is OK, of course it is the truth, because YOU are experiencing it...you need SUPPOT not a war. A.ida.
You wrote: I was not diagnosed until November 2015 and have been on Prednisone ever since. Start dosage was 20. After first taper, started at 15. After second taper started at 10 and from there to the present tapering very slowly. I KNOW THE DOCTOR IS NOT GOING TO GIVE ME ANY MORE PREDNISOLONE. He wants me to tough it out.
Go back and take someone with you to help you deal with this:
Write down in this order:
Date Diagnosed after struggling for six year and how old you were when diagnosed.
Now 6 years later you are four years older
The adrenal glands have been asleep since two weeks after your first dose and need to wake up and it can and does tkae up to a year before they become fully functional.
You need to be sure that they have woken up now and started to do their job again. If they have woken up then you will know and so will the GP and it will prove that the inflammation is being caused by PMR and as PMRpro says 1mg could have held it at bay, but
A Synacthen Test will tell you and the Doctor what stage they are at.
Insist - if you stop the pred altogether and they have not (which is quite rare) started up then adrenal crisis.
You are going to have to spell it out to him (I presume it is a him) in words of one syllable.
I had no problem getting that test I did not even know it existed and when I was given the appointment it was arranged by my GP and Consultant once I was down below 5 mgs and nearly 5 years with pred and 5 years older. I asked PMRpro what it was...............
Thank you so much for your reply. I just read it. I did what you said and copied your information. I will take it to my doctor when I next go. I still have about two weeks left of 1 mgs. I am trying every other day to make them last
because I know the doctor will not renew my prescription without seeing me. And in the U.S, it takes about 2 months to see a doctor.
Hi there, I had been on Prednisolone for 8 years, had my last one 6th July last year. I have since developed PMR but my rheumatologist hasn’t given me Pred. I developed diabetes 2 after being on them so long. I may have to go back on them if Hydroxychlorquine doesn’t due the job. Steroids are evil, but desperate symptoms need sorting and they do the job. Good Luck
Hydroxychloroquine alone won't sort PMR and for most people pred at PMR doses need not be evil when you know how to use it right and manage the effects.
There is very little that I can 'add' to the above which is all really sound. I am GCA sufferer so slightly different problem, however, the reduction has been too quick and was based on my 'acquiescing' to toughing it out when I got to 5mg/day. By 3.5mg/day - so 4 months later, I was having near permanent headaches, and severe lack of energy (though as family pointed out, looked well, lost weight, etc, but this does nothing when inside is melting down!). Interestingly, the biomedical evidence was being ignored by the GP where CRP and ESR were both rising throughout the period to a point where I was nearly triple what I had been when on 6mg/day. Fortunately, review by new GP has put me back to 5mg/day and almost immediately felt stronger and more resilient. GPs are fine when they listen, but if they only follow the book, it is fdifficult to see how they help you in your circumstances. Good luck with next steps.
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