Rheumatologist now not sure I have PMR?!

After 6 months of Prednislone and several trips to outpatients, blood tests and xrays, my Rheumatologist thinks it may not be PMR after all.

As ESR rate not responding to treatment at all.

I have constantly aching neck, shoulders, arms and fingers/hands, with stiff knees. I feel constantly like I am getting the 'flu but nothing happens, my once thick hair my hairdresser commented how fine it now it feels, and it's falling out, and my thinking/memory is all wooly!!!

Just getting used to the PMR diagnosis and it's back to the drawing board !!!!

Back in 3 weeks for yet more test results,

wondering what other illness it could be?

Help !!

Karen x

19 Replies

oldestnewest
  • hi Karen

    in my eyes dosnt seam too interested, i have the same symtems as you except my hair is not falling out, i carnt walk far or do alot without being worn out or in alot of pain, i have a bleed and inflamation behind my left eye so my vision is not good in that eye. what is your esr level ?

    I asked my Reheumatoligist to do a full body scan but he looked at me as if im mad!

    Steph

  • Hi Steph, it's 34 and has been since Christmas.

  • Hi Karen,

    My eldest daughter has recently had symptoms very similar to yours. Her GP thinks it may be Fibromyalgia, but in the mean time has given her Naproxen at full dosage per day. She has certainly improved after being on them for about a week and has been able to go to work. She is due to see a specialist in a few weeks time. PMR and Fibromyalgia often have very similar symptoms, but one of the ways PMR is diagnosed is by how quickly a high dose of prednisolone knocks out the pain and stiffness. For me 30mg of pred took the pain away in 3 hours. With symptoms of pain and stiffness mainly in the areas of my shoulders and hips my rheumy said I was a classic case and ,therefore, had no probs with my diagnosis - PMR.

    Did pred do any good in the first place regarding your pain? What dose were you put on and what % did you reduce by? If you reduced too quickly and it is PMR then the side effects could have caused pain. I believe that too rapid a reduction in dosage of steroids, no matter what you are suffering from, can cause hair loss, the body can go into shock mode, but my hair has also changed since I have been on pred. Although each hair seems a little finer, I have grown even more head hair and it is slightly curly. I have reduced my doses of pred very gradually so, no shock mode. I have been on pred for 20 months and still look pretty much like my old self. To try and help my body I take a multivitamin, and oil of evening primrose which is good for the skin and hair every day.

    Pats.

  • Thanks Pats.

    I was originally on 15mg on 1st March this year , and now reduced down to 7.5mg, the pain was knocked on the head within 24 hours of the first dose and kept away until it was gradually reduced to the 7.5mg.

    I also have problems with dizzyness, balance and co-ordination due to virus damage to part of my balance sensors in the brain 10 years ago.

    And I had just embarked on a major weight loss plan in the January of this year, as my weight was well over 21 stones. I don't want to increase the steroids - and it is an option my Rheumatologist has given me, as I want to get the weight off (nearly 4 stones now) and it is my choice he says at this stage.

    It's not Fibromyalgia as I didn't have the tender spots when I was prodded all over by the doctor!

    I would be happy and settled if the diagnosis was PMR, it's just the worry that it now may be something totally unknown and maybe more scary!

    Glad your hair is now ok ! mine has gone frizzy at the moment!

    I was looking at the side effects of Prednisolone - and they are the same as the symptoms of PMR so how can you tell what is what !!!!!!!?

  • Hi Kazzy,

    Your initial response to steroids was very good - a good indication that you had PMR. I presume all was quite good until you got to ---

    7.5mg eh! That rings a bell with me. I have reduced quite successfully twice until I reached 7mg - a couple of weeks to get over the drop and then my body got back on kilter. But the sticking point has been around that dose. 6.5mg first time and 7mg the 2nd time. What's going on we might ask?

    When when we are well our adrenal glands make between 20mg and 30mg of natural steroids. When we are put on prednisolone for more than a few weeks our adrenals grind to a halt and stop working. Prednisolone is 4 times as powerful as our natural steroids. Lets do the maths,

    7.5mg of pred is equal to 30mg of adrenalin which is our body's natural top dose.

    5mg of pred is equal to 20mg of adrenalin which is our body's natural low dose.

    What could be going on? Well, after a few weeks on pred our adrenals just go to sleep. They are completely incapable of producing adrenalin.

    The pituitary gland, which is the master gland of the body, will be prompting our adrenals to "get it on", but the adrenals have been asleep for quite a while, and will find it very hard to wake up and get going. We have to coax them very gently to wake up and produce. It may take quite a while, but I have realised that it will take some time and I must be patient.

    I don't know what your diet regime involves, but is it stressing your system out even more.

    When the pred is reduced below 10mg it should not have much influence on your weight. I cut out salt and sugar(including fruits) and eat refined carbs, lean meat, fish and lots of veges. I now weigh approx 6 pounds more than I did before PMR.

    The extra pounds fell off me below 10mg of pred.

    I'm so glad you do not have Fibromyalgia.

    If your rheumy has suggested you increase the pred then my guess is he still thinks you have PMR and are reducing too quickly. If this is so, then you don't need to increase the dose a lot to get relief from the pain etc. You could try 2mg and see what happens. If the nasties go away then you will know it's the drop in pred that caused them. If you still have pain then go up again, until you feel OK. By the way, I am allowed one dose of ibuprofen to help the pain on bad days.

    All the bad symptoms you have had are just the same as the ones I have suffered.

    Mine went within a few days of increasing the pred.

    My hair drives me mad some days. It seems to have a mind of it's own. I know what you mean, the wetter the weather, the frizzier it gets. Tomorrow I'll try a new colour!

    Pats

  • Thanks Pats for your very detailed response!

    My diet includes lots of fresh fruit and vegetables, lean meat, fish, pasta and rice and so far have lost 3 stones 10 1/2 pounds since January and dropped 4 dress sizes, with about 3 more stones to go. The weight loss has given me my self confidence and self esteem back, and despite the grottiness of PMR (or whatever it is!) feel fantastic - can't imagine what I would feel like struggling with the weight I was and the illness too.

    I was thinking about increasing my dose as a trial - I go back for more test results on 15th October (and after researching the blood tests I think SLE is one of the illnesses he is testing me for). In the meantime I am taking my Daughter on holiday, she has Downs Syndrome, and I was wondering how I would manage, feeling as rough as I do, so I will give a bigger dose a go.

    Will let you know what happens.

    Good luck with the new hair colour tomorrow!

    Thanks again,

    Karen

  • I have RA and PMR and have been diagnosed for 7 yrs. My medication was methotrexate for RA then Arava later and 8 panadol daily for PMR. Early in the diognosis I did the Prednisolone treatment and it was effective but I was weaned off it 2 yrs ago. I now have been taken off the Arava as I have developed problems with my feet ..utter sensitivity and soreness, plus terrible sensations of grit and sand around my feet. The Arava has not been replaced and I am suffering all over....even my eyes are awfully painful.

    . At present , it would appear that there is nothing for me , as my type of breast cancer is not compatible with many of the RA medications (the cancer was oestrogen related) I can fully identify with your story and I often think I'm getting the 'flu. I try to keep positive, which is hard, but I do find that keeping busy and active whenever possible is a help.

    Wishing you and all the other suffers of this dreadful complaint all the best,

    Diane.

  • Thank you Diane,

    So sorry to hear of your bad experiences and your awful pain - mine is nothing in comparison.

    Sending you a hug x

    I keep as active as possible - and I love singing, I am in a choir and it has been so rewarding and a fantastic boost. After a good sing on a Friday morning I feel on top of the world!!

    Take care,

    Karen x

  • Hi Karen,reading your post would have been me 8 months ago, i had 2 and a half years of hell going up ad down on steroids but my specialist kept going and left me on 15mil for 6 month and then i had methexotrate and came down to 5mill .pmr fine now,just a few times i think but i have a couple of other bits and maybe something called meralgia paresthetica but hopefully i will be sorted,hope you get sorted soon.best regarda mick bell

  • Thanks ever so much for replying, Mick.

    I think I was settled with the diagnosis of PMR and the fact that it is all up in the air again that upset me.

    I can only go forwards, and get it sorted (hopefully!!!)

  • i know how you feel,same happened to me,best of luck...

  • Thanks !

  • its helped me reading abou everyone am in my second week of steriods and doctor put me back up 2 5ml daily to be reduced by 2 every week for month till i see rematoliagsist. 31st october. i got chest infection and cramps in my legs. i take other medications and pain in kneck shoulders arms but i can lift them now They help, i try keep busy so its early days for me i still have the blurry vision but keep checking his.

    i find i eat small amounts and drink lots fluid water. i am in wheel chair as ostiopersis in my lower back which never eases up. I do feel better though instead those terrible pains all day night.Hope tih may help please let me know. jacqueline

  • Hello Jacqueline,

    Thanks for your response.

    I am getting my results tomorrow afternoon from the rheumatologist , so hopefully I may know something then.

    Had to increase my steroids by 2.5mg in the last fortnight, now back on 10mg as I was getting lots of pain in my shoulders and arms, plus I was looking after my Daughter who had a nasty chest infection,luckily I didn't get it.

    See what tomorrow brings!

    Take care,

    Karen

  • hi Karen Good luck tommorow afternoon i go on 31st october.

    I am on 5ml daily and cutting down again next week. i haven't been to bad but my knck and shoulrstill ache heavy arms today.

    i think chest infection to hasn't helped. Plus overdoing it as i try to hrd despite other things wrong with me. more rest i think. The weather can affect you as well i have found specially rain and cold. Food wise i seem to be okay not eating as much.

    my legs get cramps though and hopefully will pass.

    hope your daughtr much better. i drink lots water. Best wishes Jacquelinex

  • Hello Jacqueline,

    Just returned from the Rheumatologist ,and PMR has been confirmed as the diagnosis , I am relieved as at least I know what it is now for sure.

    Going to try reducing the steroids again over the next 3 months, see how it goes !

    I think rest is the key to this illness too - which is easier said than done!

    My Daughter is much better thanks , hope you start to pick up soon too,

    good luck for your appointment,

    Karen x

  • Hi Kizzylizzy

    I have been diagnosed with both PMR and Rheumatoid Arthritis for some years now and from my experience the attacks come and go . Perhaps you have R.A as well. All the best,

    Di.

  • Thanks Di,

    Getting my latest results on Wednesday - had to have a full body CAT scan now !

  • Karen, I really feel for you as this whole business can be difficult for even the best of specialists to completely identify. It sounds to me as though you have Polymyalgia Rheumatica but I have a friend who had those

    symptoms and it turned out later to be Lupus.

    Try to keep positive and if possible be active without overdoing it.

    I know when I'm in for a dose of RA because I feel that I'm coming down with flu but It doesn't happen

    All the best and try not to worry as I'm sure the answer will come .

You may also like...