Introducing Myself

I am female and in my late 50s and had never heard of PMR until last year. The stiffness and pains in my upper thigh/ hip area and upper arms/shoulders came on quickly in March 2014 while we were on a holiday. I could barely turn over in bed, get in and out of the car, or raise my arms to wash my hair or apply deodorant, couldn’t reach round my back to fasten my bra (something I have been able to do since my teenage years!) The severe fatigue was a huge limitation for me as well. Doc prescribed pain relief and anti-inflammatory medication as my ESR levels were normal and my CRP was slightly raised but it just got worse. The only time I had any relief was when I was given a corticosteroid injection for a frozen shoulder but the pains came back within 2 weeks. In March 2015 I eventually had a consultation with a rheumatologist who was certain that I had PMR. After only 8 hours I felt an improvement with 15mg Prednisolone and 3 days on I felt an amazing difference. I don’t think I was ever tested for Vitamin D deficiency. I am so glad to have found this group.

17 Replies

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  • Hi teecee46,

    Welcome - how familiar your story is to many of us.

    You are lucky in that your diagnosis came reasonably early in your journey considering your age and ESR/CRP levels! Some of us had to wait much longer to discover what we have.

    Glad you are feeling an improvement in pain, long may it continue. There will be days when you feel down, but this forum is full of brilliant people who understand what you are going through, and will do all they can to help you through the difficult times - and celebrate with you when days are good. Take care. DL

  • How on earth did you put up with the pain for that time? I got to the point where I could hardly move with the pain and was on the verge of booking a one way ticket to Switzerland! I am sure I would have been in a wheelchair in a care home if I had had to wait a year. It took around three months to get a diagnosis and that was bad enough. I did not get a vit D blood test initially as my rheumatologist did not think it was necessary, he was pretty useless though. My GP arranged one when I asked her, at the same time as I was having an ESR and CRP test. It is also a good idea to get a DEXA scan to check your bone strength, as steroids can sometimes affect bones. I also take vit D and calcium supplements, my rheumatologist forgot to give them to me and then blamed me!

  • Believe me Piglette it was a nightmare. One of my GPs was very dismissive as my ESR levels were fine. She told me that I didn't fit the criteria for a referral to a rheumatologist and that it was most likely wear and tear and I'd just have to live with it! Like you, I felt that life was not worth living if I was going to always be in so much pain. I truly believed that if anything had happened to my husband I would have been unable to live independently and could foresee the need for a wheelchair and carers. My other GP (I'm in a 3 doctor practice) took pity on me and referred me in January. When I checked with the hospital I discovered that the waiting list was an optimistic 8 months and that I was only on the pre- waiting list so it could have been a year before a consultation. I managed to get a private consultation (I would have sold everything I owned to pay for it!) and it feels like a miracle. I know there will be struggles with tapering and my muscles need strengthening again but for the first time in a year I am feeling optimistic!

  • I went to see a private rheumy in the end too. He may have not been much good, but at least he gave me steroids immediately. I still cannot believe the relief, as you say a miracle. My muscles were really weak after not being able to move much, but slowly they seem to have improved. The rheumy was mad keen on me reducing as quickly as possible, he had only given me 5mg pred tablets so I had real problems reducing and had flare ups. I no longer go to him.

  • I had PMR pains for 14 month before being offered steroids, One GP did say it looked like PMR but bloods were normal, so he arranged Physio & antiinflammatories, Then after 6 months referred me to Fheumy who spent 8 months investigating before agreeing I had Atypicdl PMR at the age of 46. 4 hours after first Pred dose I was running up the stairs. Drs need educating re bloods bring normal in 20% of cases. I have just been diagnosed with GCA with normal bloods after 2 years if GCA symptoms, frustrating. I wouldn't wish my last 2 years on anyone. Hope you have a flare free recovery 😃 Runrig x

  • LO teecee46. I think you will find most of newer folk with this strange illness had never heard of it. I still have trouble giving it its full name, I have just served my first 12 months on this strange journey.the good news is you have come to right place for any info you need.with advice from these Forums i manage to get from 15mg to 4mg, then the Cold from hell struck with advice from the folk [girls] i went back up to 7mg i have now booked a full blood test for next week.i was given vit/d from dr at the start. just to say in my opinion?? i found i get more correct info from the forums than the Drs etc. Dont be afraid to post for any info you need.Hope this post makes some kind of sense, pred brain. Best wishes for your journey

  • Yes I recently had a cold and I'm back at square 1. Pain, headaches. Stiff. Sick and tired of being in pain and exhausted.

  • I too never heard of PMR until Jan. Now I'm reading everything. I've been in pain for years and last year found I had a stroke. My eye dropped and headaches and stiffness in my neck, arms and lower back.

    Finally blood work revealed pmr, prescribed prednisone but tapered off too quickly.

    More full blood work recently to see what mil I should be on.

    Always exhausted. Recurring headaches . Just want relief.

    Glad I found this site as well

  • Bloodwork won't tell you what dose - you have to start about 15mg and reduce very slowly to identify the lowest dose that manages the symptoms. Everyone is different and it will also differ at various stages of your journey. There is only one certain thing and that is SLOWLY is the way to go about it.

    As described here:

    healthunlocked.com/pmrgcauk...

  • Your symptoms remind me of my own - a year ago now. By the time I saw my Dr I knew what I had since my mother also suffered with PMR. I was relieved that I had some sort of diagnosis for dire fatigue, inability to move in bed, awful pain & stiffness which made me often burst into tears with frustration and confusion with what was going on in my body. The Prednisolone 30mg daily worked swiftly. I realise now I am on a journey. Reducing steroids by 5mg monthly and then by 1mg was going well and I got to 7mg but increasing stiffness a couple of months back seems to be a flare up. I hoped to get through it but advice from Dr and reading posts here suggested I should increase (maybe by 5mg?). However I went back to 10mg last week and feel much improved again. These posts do assist you in informing and help you to make a decision in conjunction with advice from Dr. Since my starting dose of 30mg quite high, it seems a slow reduction is necessary. Did I go too fast? I am desperate to stop the Prednisolone but Now I am going to take it steadily and slowly. PMRGCAUK and this forum have enabled me to feel slightly more in control. I think it's important to keep exercised but posts here stopped me from overdoing it. I have also reduced to 4 working days. Trying to convince my husband I should stop work completely!

  • 7mg is also a sticking point as that is where your body has to start making its own natural steroid again and it takes some time for it all to settle down again, the whole feedback system swinging back and forwards like a pendulum coming to rest.

    You may not get to zero - you are looking for the lowest dose that does the job. That might be 8mg or it might be 4mg - or it might just be a short stop at 8mg before being able to get lower.

    Have you seen this?

    healthunlocked.com/pmrgcauk...

  • I had undiagnosed PMR for 5 years - too young, no abnormal bloods. Then it went totally berserk and it still took 6 months for a rheumy to give me pred - but not because he thought it was PMR. Six hours after the first 15mg dose I was almost back to normal - but he didn't want to listen. A GP I hadn't seen before agreed PMR fitted the bill. Once I worked out the problems I kept having were due to reducing in too big steps I worked out this reduction plan

    healthunlocked.com/pmrgcauk...

    which got me down to 4mg with no problems at all and has been used successfully by a lot of patients on the forums. There is another similar version elsewhere. Both are being used/studied by consultants, mine may be used in a study.

  • Welcome Teecee,

    I too am relatively new to all this & despite having worked in the NHS for 10 years had never heard of pmr.

    I was lucky that my GP knew what it was immediately & put me on 20mg of pred straight away (both my CRP & ESR were through the roof) I have good days & bad, feel sweaty & exhausted most of the time, a bit stiff & fluey sometimes too. Like everyone has said, on here you will find a place to moan & ask advice.........or just so you don't feel alone sometimes.......it helps you through the darker days. I had a really bad day yesterday (after two really hectic night shifts) but now I know to forget what needs doing at home & just have a lazy day, a warm bath, lots of sleep & something good on the telly to take your mind off it all. I'm down to 15mg now & reducing by 1mg next week for a month.

    Wishing you a smooth journey & lots of luck. Pam

  • Hello Teecee46. I am female and was 85 last week. Like you I had never heard of PMR either. I was diagnosed in March 2014 and started on 15mg prednisolone a day. I have never managed to reduce and because of my blood test results the doctor has increased this to 17-l/2mg. I am desperate to start reducing so I can eventually stop steroids. My worst symptom is fluid retention, my legs and feet start swelling up as soon as I get out of bed in the morning and I also have fluid on my lungs which makes me very breathless. My next worst symptom is fatigue, even after a good night's sleep I wake up exhausted. Steroids have also had an effect on my skin, which is very thin, dry and rough. I agree that this forum is amazing, just knowing that other people are going through the same things as me helps. If DorsetLady is reading this, shortly after I was diagnosed I moved from Devon to Dorset. Do you know if there is a support group here?

  • If it is your GP that is dealing with this I think you really need to ask for a referral to a specialist. Whilst some people need more pred than others if there is that much difficulty in reducing the diagnosis of PMR needs to be queried. Several other things can cause the symptoms, the PMR we discuss here is the only one that responds so typically and quite dramatically to 15mg pred and if you can't reduce - and you still seem to have considerable symptoms - then it isn't being typical and you need the considerations of a specialist.

  • Thank you for replying. My GP has sent me for a chest x-ray which showed my heart was slightly enlarged, and now she is sending me to a cardiologist. Is that the specialist you mean, or do you suggest a rheumatologist? I notice that several people have a "rheumy" but that has never been suggested to me. I have an appointment with the GP this week and will ask her, but would appreciate your advice.

  • A rheumatologist - if you are having so much difficulty reducing it suggests it might not be PMR but another form of arthritis and your GP may be out of their depth. A GP can be quite adequate for someone with uncomplicated PMR who gets the symptoms under control easily and then is able to reduce to below 10mg with few problems. If the patient has anything that is atypical (age, not usual symptoms for example) or it later proves difficult in any way then a rheumy should be asked. Some GP overestimate their knowledge and it should never be felt shameful that they had to "ask a wo/man what knows" - refusal to do that when a patient is struggling is in some ways arrogant in my opinion.

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