I am new to this forum this week and never planed to have an issue so early on!
I live in Providence, Rhode Island, USA and I don't know anyone with PMR. So glad I found this group!
On December 18, 2017, I was diagnosed with PMR and put on 20mgs of Prednisone. January 17th she cut it to 15mgs a day. January 27th went on 10mgs per day and ws=as told I would be on that dosage for a year!
Today her office called and told me to go to 5mgs per day. After reading so many of the postings this week (I'm so glad I found you) I think maybe this is a little aggressive. Does anyone have any thoughts?
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AltonBay
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I agree with you, it is aggressive and I don’t recognise the treatment protocol that she has you on. Is there some doubt about your diagnosis?
How do you feel?
It is usual with PMR to be prescribed 15-20 mgs of Prednisone initially and be on that dose for about 6 weeks. You ought to experience quite a dramatic relief from pain and stiffness. Then we recommend a very slow taper of no more than 10% of your dose, waiting at each stage to ensure the symptoms are settled.
This disease can last between 2 and 5 years, sometimes much longer. The aim is to get to the lowest possible comfortable dose to control symptoms while the disease runs its course.
Please take some time to peruse the site. It seems that you are going to have to be armed with a lot of knowledge. I really don’t want to see you suffer unnecessarily. If you do these steep drops, I am afraid you will.
Welcome to the site btw it seems that you will need us.
Thank you for your speedy and confirming reply. I will continue to explore. The diagnosis was based on exam, blood work, xrays, history and interview. I have been a patient at this practice for 17 years. She didn't share any doubts at the time.
What Sheffieldjane said. After 10 mg the drops have to be small and no more frequent than once a month. Many of us find as we approach the lowest dose that continues to control our symptoms that we have to taper extremely slowly. Pred does not cure the disease it only controls the symptoms until the disease burns out in its own good time, as Sheffieldjane says.
Were your symptoms controlled well at the beginning? How are you feeling now?
We started at 15mgs and went to 20 because I wasn't getting relief. I don't have pain now. Sleeping is an issue. Weakness in legs, climbing stairs, getting very little exercise (tried to blame the cold New England weather!)
This is the most round-about illness I have encountered in my 76 years! The speedy taper did make me question the plan! I have been reading books, cruising the internet and this site is tops!
Welcome! I have to say your doctor is confusing me if I'm reading this right. One month on 20mg, 10 days on 15 mg, then 3 months on 10. Now a drop to 5mg. Have you been seen since diagnosis? Had blood work? How does she decide that you're ready for a lower dose? How have you been feeling? Most of us try to be on a somewhat regular schedule, allowing changes for how things are going and often a resting dose somewhere along the way.
I'm assuming this is your primary doctor? You might want to do some research and find a good rheumatologist. I have a one i trust in Old Saybrook CT. not sure if that's helpful as it would be out of state for you and some insurances get picky about those things. Let me know if you're interested.
I agree that I have to find a rheumatologist. I'll explore Providence tomorrow. I will let you know if I need help finding someone. Good to know you are close by. Thanks for your suggestions
Hi AltonBay, I'll let the site experts address your taper questions... but as one who's Rheumy tried an over-aggressive 1st taper down (back in November 2017) BEWARE! I have GCA & PMR, and went from 60mg to 45 mg way too fast. I hit 45 and though I would die! Had to go up to 80mg to get same relief 60mg had been giving me! It was a nightmare.
Best of luck on this, what I suspect is an unwelcome journey... I hope your time here is short and positive!
PS I'm from Worcester, Ma.. had relatives in Providence and West Warwick. I live in the UK now.
As others have said, a strange way of reduction. Your primary doctor obviously hasn’t much idea of how to treat PMR. Unfortunately it’s doesn't react like most illnesses to medication, in fact the medication is only controlling the inflammation caused by PMR, not doing anything for the disease itself! So in essence as long as you have the disease you need to be on the correct level of Pred for YOU, and you won’t do that by reducing in big steps, you’ll go below that level.
Welcome to the club none of us actually wanted to join. I too was a victim of aggressive tapering. I was encouraged to drop from 10mg to 7.5 result was a massive flare, five months later I have now reduced to 9.5mg. No more big steps for me, just a very slow drop. Resting here for the time being as I have other health issues. Try looking at some previous posts on this subject I think you will find that big steps take you backwards. All good wishes.
Her office is crackers!! That is the sort of reduction protocol when using pred in many other conditions - probably also for flares in rheumatoid arthritis and other autoimmune disorders. It won't work in PMR unless you are exceptionally lucky.
From 10mg you need to go more slowly - it MIGHT work dropping to 5mg but it is more likely to lead to a flare and then you might have to go back to a higher dose to manage it.
is a study done by a top PMR expert at the Mayo Clinic so reputable (and American! You would be amazed how many doctors in the US think it is a different disease there than here in Europe...) And shows that PMR dose pred isn't as risky as they all seem to think so being on your way down from 10mg after just a few months is just fine.
I doubt they will be interested in this paper as it is from the UK - although the 10mg for a year fits with its recommendation
and we think it is still a bit fast, but it does achieve a flare rate of 1 in 5 compared with 3 in 5 for the sort of approach many doctors use in PMR (mostly not as aggressive as what you are being threatened with).
Speak directly with the doctor and say you'd rather go more slowly as she suggested originally. And you have some back-up medical literature...
Hi AltonBay just read your post. I live in Washington DC and was diagnosed with PMR/GCA last summer. Started with PMR but then got GCA (it is related). I am seeing a Rheumatologist so you might want to go to one. I started out with 60 mg of Prednisone, but I was having double vision due to the GCA. Anyway just a thought. Johns Hopkins, Baltimore specializes in this. You could also call them. Good luck.
I’m in the US also. North of Boston. And your name reminds me of Alton Bay NH.
I had my first flare tapering from 10mg to 9mg. I can’t imagine what a drop to 5mg would have felt like. Ouch. I think that’s ridiculously aggressive unless they’ve decided you don’t actually have PMR
Once I found this amazing group online I got quite an education. My rheumatologist was very supportive when I said I wanted a much slower taper. There were no more flares as I dropped in small increments over 2 years, listening to my body, backed up by blood tests. I’m sitting at 4mg for the foreseeable future. Lower than that and the pain returns. My rheum isn’t worried nor my endocrinologist.
I have not seen anyone since the day I was diagnosed in December so I don't know what they are thinking. I now realize that I have to be more vocal on my own behalf.
This group is a lifesaver for me right now. I am looking for a rheumatologist. I went to my GP originally not aware of the need for a specialist.
In the UK PMR is generally managed by GPs - in the USA many seem unwilling to take on the responsibility of managing the patient. If you have GCA - you need a specialist. No ifs or buts.
Hi AltonBay, I live in Warren, MA, originally from Worcester, and I don't know of anyone with PMR in my area. The closest I found are a couple of people, from this forum in New Jersey and another from CT and now, you. Your doctor should have started you on 20 mg and reduced from there, slowly. I agree with everyone here, see a Rheumy and go slow with the taper. Also, since you were just diagnosed it might be premature to taper right now. I had to go to Tufts Medical to get my diagnosis after the first 4 area doctors didn't know what I had. I was diagnosed in Sept of 2016 after 5 months of pain and now, I'm down to 6.5 mg Pred. Yes, the New England winter was brutal, especially on my knees but I've been able to reduce in the last couple of months. What is interesting is that my doctor recommended Ibuprofen for minor aches and pains due to Pred withdrawal and some days it works. Good luck, be patient and good to yourself.
I just read your note about living in Providence, RI. I am in Bridgewater, mass (about 30 miles from you) and have had PMR since December 2017. I would also love to talk to someone local who shares this condition.
I was diagnosed December 18, 2017! Small world! This last month has not been an easy one as I had to retreat backwards to my starting dose. I am kind of down and working on turning my frown face into a smiley face.
We live in Providence on the East Side. Our grandchildren all live close by, some in town, some a short drive away.
It took a while to settle on a caregiver with like goals and now she has run off and had a baby! I haven't met with her temporary replacement yet. She did say that I would like him. Oh, my husband is having a knee replacement on the 3rd of December too boot!
On a happy note, I am happy to make your aquantance and look forward to getting to know you.
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