i self diagnosed after I was told by rheumatologist in Florida almost a year ago that there was nothing he could do for me and referred me to a pain management doctor. Long story short and 7 months later when I returned to him after a blood work up he admitted when I saw him the first time I probably had the beginning of PMR.
i can't seem to find a doctor either GP or rheumatologist familiar with this condition.
i started on Prednisone 20 mg about three months ago. Overnight I became a new person. I felt wonderful. In a matter of two months I gradually went down to 10 mg. where I was not great but OK. When I went to 9 I had a flareup and was put back on 20 mg for two weeks- then dropped to 15 for a couple weeks. When I went back to 10 after two days the fatigue and lower back pain returned but no discomfort in my upper body.
Its a weekend so I put myself back to 12 and 13 with no results.
in the meantime I developed a mild UTI and got meds for that at walk in clinic.
im thinking about increasing to 15 to relieve the pain because the last time I had this problem and called rheumatologist his nurse told me to go to 20 but he later told me that he didn't believe it was a PMR flareup but something else perhap because the pain was only in my lower back, groin and thighs and
this time the pain is in the same area.
i would like to know if the flareup can strikethe lower body which is where it originally.
Also the rheumatologist originally told me the feeling of fatigue is not a symptom of PMR. My GP knows even less.
id just like to share this experience with those who understand.
I believe Eileen and/or Lodger will provide some valuable information for you. Because I am in a flare, with down time on my hands, I decided to make a "graph" of my prednisone medication since my diagnosis 15 months ago. I have always said that I started around 10 mg...stayed there for about a year and then successfully tapered down to 7 mg. In looking at my graph, whch indicates the dose, number of days on that dose, and how I was feeling, I came to realize that the whole first year was actually a yo-yo ride up and down on the prednisone!! Not huge adjustments...just a mg or two....but enough to make me have some bad episodes. These up and down doses were my effort to start getting off the prednisone as soon as possible! I also had a rash episode that put me on the Medrol pack, didnt work, so I yo-yoed up to 80 mg and back down in 10 days.
The only stability has been the tapering regimen suggested on this forum...with the exception of...when you are at 7 mg you have to be be very careful. Best advice is on this forum!
Those symptoms of lower back, groin and thighs are the only place
I had pain when I was diagnosed with PMR......your guy really needs
to study about PMR because fatigue is a large part of it. It is hard
to know what to do with docs are not familiar with this disease.
I have a GP and fortunately he seems to get at least a large
part of what happens with PMR
I despair about some of the medical profession's knowledge of PMR. You do seem to have got into yoyoing which is not a good idea. Ideally you should just slowly reduce of course. A group of doctors in UK recommended staying on 10mg for a year which they felt reduced future flare ups. You need to go back to where you last felt comfortable and when you feel OK start reducing again but much more slowly perhaps in smaller steps. Not more than 10%.
Fatigue, pain and under the weather feeling are all part of the symptoms of PMR. Pred helps reduce the pain bit.
Thank you so much for your response.
The last dose I felt comfortable on was 12mg. I have been back on that for two days but feel no relief. How long does it take to adjust,to the comfortable dose?
Severe burning groin pain and thigh muscle soreness & stiffness were some of my first symptoms & it was a while before it hit my shoulders. And boy, did I have the fatigue!! Sounds like your doc needs to go back to school--I think he missed the chapter on PMR.
I had asked my GP if she ever had any other patients with this condition and her answer was, no. I have a feeling the rheumatologist doesn't either. I don't think it's as common in the States and if it is patients aren't speaking out. I wanted to join a support group but can't find any iin this area of Florida or for that matter, any within the state.
Thanks Vicki for answering.
I'm in Spokane, WA and I'm the only person I know that has PMR.
There are some others on the forum who also live in the US. I tried to find a support group here too, but could find nothing. Thank God I found this forum, because I've learned waaaay more here than I have from my doctors. Keep checking back here and reading the new and the old posts--you'll find a lot of support & information about PMR & prednisone here. It's so helpful to know that others are going through the same things we are, so you don't have to feel so alone in this battle.
I asked around to all my friends when I was disgnosed with PMR....found 4 friends who had it...one still has it. They, in turn, said they knew other people who have had it. Men and women...altho the men seemed to have had an easier time....? All live in the U.S. It is discouraging to think you are the only one! After the PMR is gone (!), people actually almost forget they had it.
All these other people also had a very difficult time getting diagnosed.
Again, kudos to this forum!😊
To be down to 10 after 3 months starting at 20 is too fast and probably the cause of your problems. However - there are other things that mimic PMR pain and are often found alongside them. They are relieved at higher doses of pred but the pain returns at lower doses and I suspect that is the other reason for your problems. Have you access to a physiotherapist or to a Bowen therapist? If so try that - the possible problems I'm talking about are myofascial pain syndrome and piriformis syndrome. Google them to get the details and see if anything matches what you are experiencing.
Next on the list - find a competent rheumatologist because anyone who tells you fatigue is not part of PMR hasn't got a clue. It is due to the autoimmune component that is the underlying cause of the symptoms we call PMR. The pred doesn't have any real effect on that and you MUST rest and pace yourself to manage that yourself - a daily nap time can help a lot.
Go to this thread
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
where you will find links to other resources - including the "Bristol paper" which someone has already mentioned. Their reduction scheme is 6 weeks at 15mg (their starting dose), 6 weeks at 12.5mg and then 1 year at 10mg. If you can get the lower back issues sorted using physical therapies (I'm including Bowen there) I would suggest maybe going to 15mg until the symptoms are fully under control (that doesn't mean no pain, it means they are stable) and then try the Bristol reduction. If that is still too much, there is a very slow reduction scheme in the replies section which has worked for a lot of people. Many use it below 10mg, other have used it from 15mg. But above all, STOP YOYOING THE DOSE!
PMR isn't uncommon in the USA - but it probably is very uncommon in the southern states. In Europe, too, it is more common the further north you go - partly due to the fact it is more common amongst communities with Scandinavian genetic histories and they tend to be in the north of the US too. Many studies were done in Olmsted County. Minnesota so it is present in the US literature. If you can find a GP who is willing to listen and learn, take the "Bristol paper" to them and ask them to facilitate that reduction scheme, preferably in combination with mine, the "Dead slow and nearly stop" - it is approved of by both GPs and rheumatologists who have seen it and it is hoped it is to be used in a study in the near future.
Look too at the other forums and links - you will find a lot of information on the NE PMRGCAUK support group site and it will save me writing it all out here yet again! Then come and ask specific questions and someone will try to provide an answer or advice for you. There are no doctors here, just people who have walked the walk and some who work with support groups and research groups. But we do know what we are talking about.
I had never heard of PMR until I was diagnosed. I found one person who has it, since then my family say they have come across other people who know of people who gave it or have had it. I suppose it is something people don't talk about. Probably a lot of my friends do not know actually what I have.
Do all go and look at the northeast of England support group site. They made a DVD 6 years ago called "You are not alone" and just recently issued a booklet called "Living with PMR and GCA", written by patients for patients and also available at cost for non-members of the group. They have newsletters online and a helpline. It was founded as a result of 5 ladies meeting on this forum about 8 or 9 years ago who then started working to create the charities because then this forum was the only support available.
Many people think they are the only person with it - but you would be surprised. I met a lady from the lake District in England with PMR on a campsite in the Italian Lake District! A chance comment led to her saying "I take pred for P...." and she was amazed when I completed her sentence.
Except for a skin condition on my arms - so far I am not aware that I have any other side effects from the prednisome. Although the skin condition has no physical effect it is downright ugly. Since I live in a warm/hot climate
other than covering my arms with long sleeves does anyone know of a way to control this. I have very fair skin and the slightest bang or touch to my arms causes a red almost purple blotch that takes about two weeks to
disappear. Since on predisone the condition is 99% worse than what it had
been. Is this something I have to live with or is there a remedy?
I would choose my blotches any day over the pain but just curious.
Hi Audrey,
Like you, I have the skin thing from Prednisone, even though my skin is fairly dark and I normally tan easily, but am covered up to avoid stares. I am told Biotin helps the skin and hair.
I concur with all said above concerning slow reduction. I reduced very slowly and had no flares. The less Pred I take, the slower the reduction. Right now at 5.5. BTW, I cut the 1 mg pills in half to get the .5 mg increments. I stay on a dose for at least a month or 6 weeks and make sure I have no symptoms. The Dr also asks for a SED rate and then suggests I reduce, if the bloodwork is normal. This works for me, but we are all different and we react differently to medication and reduction. I started with 20 mg in December 2013 after being undiagnosed and misdiagnosed for 3-4 months. Finally found a rheumy, who understood the condition by going through my health insurance list of rehumatologists and checking on each name on the internet. My current rheumy has a website and PMR was one of the conditions she treats. I had no idea what that was, so I looked it up and Bingo! I made an appointment with her and did not tell her what I had, just waited for her to tell me and she said PMR. She had looked at all my previous bloodwork and then ordered a CRP and SED rate. My previous bloodwork, which had been done twice, ruled out RA, Lyme and some other autoimmune diseases that blood tests would indicate.
I live in the DC area and know 3 other people in my immediate circle of friends, who have had PMR (now in remission). Like Eileen, I found out by chance, through conversation. I also know of someone else, whom I have not met, who lives in Maryland.
Good luck! This is a great group of very supportive people and it is so good to know one is not alone!!
Lots of emollient cream such as Doublebase in the UK - someone will tell me what it is in the US - will help. You apply it after a shower to keep the moisture in the skin - and don't use soap or anything that makes a foam to wash with.
And it will improve as the dose goes down.
I get the bruises on my arms....i've been told it's because
my skin has lost it's elasticity. I'm probably older than you
78 and counting and a lot of people ask me if I'm on blood
thinners (no) but look like I've been in a fight and probably lost.
The PA in my Dermatologist office told me to rub coconut
oil on my arms at night. It works somewhat. The bruises
are smaller. I also rub Arnica Gel on the bruises and that
helps make them go away somewhat faster. I'm assuming
the bleeding just below the skin surface is what you are
refering to.
I have the same problem, the vascular surgeon told me it was a side effect of pred and tough! It does seem to have improved as I reduce I am currently at 10 mg. What is your dose?
Creams do not seem to actually make any difference sadly, although they may help thin skin. The purpura appears out of nowhere looking really ugly and then slowly fades over a couple of weeks. I have quite fun trying to see which are the newest! Interestingly one arm seems to be worse than the other for some unknown reason.
I only get them on one arm, left just above my watch strap! Or should that be got - very rare now.
I've been on an anticoagulant for 3 years - no worse though. Keeping the skin moist often does seem to make it that bit more resistant to knocks but it is from inside it happens ...
That is interesting, I tend to get them mainly on my forearms. I am not sure what causes them, they can appear while I am sitting in an armchair. I did to a test by scratching myself (mind going!) but that does not cause them I don't think. I will have to do more research or more scratching!