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  3. Polymyalgia Rheumatica and GCA

Shifting attacks of Polymyalgia

  1. I am new to this site and find reading other patients' reports both comforing and helpful.

    I have had PMR for ten years but was not diagnosed early. A Rheumatologist put me on 20 mg Pred and the effect was miraculous. As I gradually lessened the dose, the aching began a little. However, I was apprehensive of being on steroids and wanted desperately to lose weight - so I reduced the amount of Pred until I was off it over 2 years.

    Since then I have been up and down - returning twice to steroids for relief. My doctor won't prescribe the higher dose so have been on 7.5mg reducing to 2mg which I am on now.

    Recently the Polymyalgia seems to be shifting its attacks from lower back to right leg and now to my shoulder. Can anyone else tell me if physiotherapy or accupuncture will alleviate the pain?

    For the first time I feel very worried because I have a new little grandchild who I love looking after whenever I am needed. Of all times to be unable to use my arm freely, this is the worst!

    I hope to start physiotherapy soon and am looking into acupuncture. I wonder whether trying so hard to stay off steroids is sensible in the end? Would welcome any comments and thank everybody out there to whom I send my best wishes for their own recovery.

    Cosima

  2. hi and welcome i am sure you are well informed on pmr having had it for so long ,and i do understand your concerns about weight gain i think we all have those ,how ever the bottom line is if this pain is pmr and not some other problem then steroids are the only answer to control the inflammatory process causing the pain and you are on a very low dose which is probably not holding the pain ,physio may keep the joint from stiffening but it can also agrevate the inflamation so its a fine line you tread ,pmr is always a balance between movement and rest !! accupunture can sometimes help but it is also known to make the inflammatory process worse so another fine line i am afraid ,i used to do accupunture on cancer patients but never had a pmr pt in fact never met a pmr pt in all my years of nursing till i got it myself and boy has that been a steep learning curve .i do hope you can sort out your pain treat steroids as a friend not an enemy and you will be able to enjoy you grandchild lots of luck carolk

  3. My experience of physio whilst suffering from PMR was by way of simple massage techniques and heat treatment only, both of which proved successful with a long-term upper arm muscle which my rheumy attributed to muscle atrophy from the steroids. In fact we had a physiotherapist speaking at our last PMR/GCA support group meeting and his advice was that a lot of their manual therapy techniques are contra-indicated with patients on long term steroids,and massage has to be very gentle if used at all.

    It does sound as though you may not be staying on a sufficient dose of steroids for long enough to get the inflammation under long-term control. Many of us reach a sticking point when reducing down through the lower doses which proves we have gone one step too far for now and we need a few more months at whichever previous dose controlled the symptoms.

    Congratulations on the new little grandchild!

  4. hi and thank you both for responding so quickly! I think I knew deep inside me that the pmr pain can only really be controlled by a higher dose of steroids. Your advice to 'treat sterioids as a friend not an enemy' is a good way for me to go. I hope my GP will raise the Pred high enough for it to make a difference, I know he has my well-being at heart but 2 mg is useless at the moment. I will also bear in mind Mrs. O's helpful advice to go easy on any massage with physio. I will keep you posted and thank you both very much.

    Cosima

  5. good luck be firm with gp you need to get pmr under control then reduce slowly so you dont pass the optimum dose that holds the symptoms for you at the moment ,i find i have to go down 1/2mg at the moment monthly after shooting down to 9mg and everything going pearshaped i am about to try 9mg again after needing to go back up to 12.5mg and reducing 1/2mg at a time till i amm back to 9mg hopefully this week following my blood tests results which i have monthly i have crp and plasma viscosity but others have esr ,they are not written in blood so if they are slightly raised and i feel ok i still reduce .i am sure you know this but if you get return of symptoms as soon as you reduce its withdrawels which go away after a few days but if the symptoms come back after a few weeks it indicates inflammation rising and your dose is not holding the condition ,i am sure i am telling you something your already know but this is how i began to understand the condition and how to manage it and all its variables !! lots of luck keep in touch carolk

  6. This is very helpful knowing how you are trying to decrease your steroids. I don't actually know all this although I feel I should do after all this time. Being on and off steroids during the last eight years, I haven't had monthly blood tests at all - only an initial one with my first Rheumatologist. Since then my GP hasn't sent me for blood tests. For two years I didn't take steroids and am not under a Rheumatologist at present.

    I was going to go two months ago when my shoulder pain started but the visit was so expensive and I thought I would continue to let my GP handle it. I do feel more empowered now and will ask my doctor for a blood test (crp and plasma viscosity or esr). I hope your results allow you to go to 9mg but you have done very well to get down from 12.5mg. Good Luck and thank you for corresponding, Cosima

  7. you are welcome if you have any other ??just post if i do not know the answer there are people on the other website who have seen it all .i do not see my consultant since dx the gp and i decide the way to go quite often just by phone and going on results and how i am coping . off for bloods today your gp should check you liver and hb at least once a year and you should have a bone profile done once a year ,but concentrate on getting him to do inflammatory markers first and hit him with the others another day !! dont always assume they know all there is to know about pmr many sufferers know more because they have become well informed knowledge is power carolk

  8. Cosima - it was my experience to be under a rheumatologist for the first two years with PMR and GCA - admittedly it was emergency referral by the 4th GP I visited who finally suspected GCA! The rheumatologist carried out repeat blood tests throughout that two years and always before any reduction. It turned out he is very involved in research into both conditions so I couldn't have been luckier.

    Some GPs are very knowledgeable about PMR but as your GP has not carried out any blood tests since the outset of your illness 8 years ago, then if it was me I would be seeking referral to a rheumatologist. It could well be that you may be like a few other sufferers who don't show raised markers in their ESR and CRP blood tests but unless you ask for those tests and the subsequent results you won't know.

    I do hope you get some answers soon because if you do have inflammation running around in your body it needs to be treated accordingly as it can have othermore serious implications. Plus it isn't any fun being in pain! I wish you well.

    MrsO

  9. I meant to get back to CarolK and MrsO but had difficulty with password! Thanks to you both I got myself on to a higher dose of Pre (7.5mg for two weeks going up to 10mg). I coldn't see my own doctor so saw another in the Practice. My blood pressure was raised and I was feeling very unwell after a night of continual aching and throbbing from one shoulder to the other and right across the chest.

    I feel much better in myself now but still have a very stiff and painful shoulder in the morning on waking. I was hoping for a miraculous change there but will obviously have to be patient. I am doing exercises all day on and off to regain full mobility. I am happy to say I can still cuddle my baby grandchild, carry her without loss of strength in the arm during the day. It is the mornings that are murder!

    I do hope you are both doing well!

  10. hi part of your problem may be too much exercise this is one condition where rest is as important as exercise suggest gentle movements to keep the joint moving but not in the morning and not too the point where you are tired sorry but you have to be kind to yourself and pushing you joints is not always a good thing to do . all this takes time cuddling your granchild is the nicest exercise i know carolk

  11. hi - thank you for comment. Too much exercise? - that is a good point! It will be rather a relief not to do it in the morning. I shall see how just gentle ordinary day--to-day movements help. Do you think it is rather strange beginning again now on 7.5 Pred and then in two weeks going up to 10 mg? I did ask the Pharmacist but she seemed to think it was quite normal and I can't remember exactly why.

    I was babysitting my granddaughter yesterday and as you say - cuddling her is the necest exercise!!

    Cosima

  12. hi - thank you for comment. Too much exercise? - that is a good point! It will be rather a relief not to do it in the morning. I shall see how just gentle ordinary day--to-day movements help. Do you think it is rather strange beginning again now on 7.5 Pred and then in two weeks going up to 10 mg? I did ask the Pharmacist but she seemed to think it was quite normal and I can't remember exactly why.

    I was babysitting my granddaughter yesterday and as you say - cuddling her is the necest exercise!!

    Cosima

  13. hi - thank you for comment. Too much exercise? - that is a good point! It will be rather a relief not to do it in the morning. I shall see how just gentle ordinary day--to-day movements help. Do you think it is rather strange beginning again now on 7.5 Pred and then in two weeks going up to 10 mg? I did ask the Pharmacist but she seemed to think it was quite normal and I can't remember exactly why.

    I was babysitting my granddaughter yesterday and as you say - cuddling her is the necest exercise!!

    Cosima

  14. Cosima

    I echo what Carol has said about not overdoing it with the exercise. In the early days of PMR and GCA my experience was that mornings hardly existed and I generally woke up properly some time in the afternoon. Now need a good excuse as I'm finding it hard to get out of that bad habit! :[

    As to whether "it's strange to begin again now on 7.5 Pred and then in two weeks going up to 10 mg", some people do try a small increase first and if that doesn't work they increase further. However, that never worked for me - during a flare at 3mgs, increasing to 5mgs wasn't successful and it wasn't until I increased to 10 and then reduced slowly back down to 5, staying there for between 5-6 months on the advice of my rheumy, that the inflammation finally resolved.

    What you really need to know is whether that 7.5 starting dose that your Dr refuses to increase is actually controlling the inflammation - ESR and CRP blood tests will give you the answer if you are one of those people who has raised markers when suffering from PMR. It may well have been easier to get control of the inflammation by going up to 10mgs in the first place.

    I hope you manage to resolve your pain soon so that you can really sit back and enjoy that little one!

    MrsO

  15. O's helpful advice to go easy on any massage with physio. I will keep you posted and thank you both very much.

  16. the most important thing i have learned over the last year re steroids is slow reduction and small amounts at a time i went down to 9mg and missed the optimum dose keeping it under control so had to go back to 12.5 mg now i have gradually crawled back to 9mg, 1/2 a mg at a time every month this time fingers crossed 9mg is containing it ,this does not mean i am pain or muscle fatigue free but its at a point when i can cope .i do have my bloods done monthly but they are only a guide i go by how i feel re reduction, its not written in stone and you will find other people have different ways of reducing but i am so afraid of going backwards again i prefer to take it slow !!! good luck with it all and be kind to yourself re exercise ,eilleen would probably have contributed by now but she not available at present carolk

  17. Hi Cosima,

    I haven't posted recently, but sometimes have a read to keep up. Information I have got from this forum has been very helpful.

    I have gradually reduced steroids to 3mg over the last year and usually got some pain and stiffness for a few days with each reduction. At 3mg the pain was getting worse from day to day, so I gave up and went back to the GP (not seeing rheumatologist until September). His advice was to go back up to 5mg and see what happens, so that is what I am doing.

    I didn't want to go back up as it feels like a bit of a failure, but I can't be doing with all this pain!

    Congrats on the Granddaughter and I hope you feel well enough to really enjoy having her.

    CathyG

  18. hi cathy i am sure you are aware that the drop from 5mg is a tricky one and many people have to stay at each reduction for longer this is re your adrenals trying to kick back in ,there is no way you are a failure this is a long haul and you have got down really well ,its a known fact that the people who take their time reducing are less likely to have a reoccurance so you are doing the right thing carolk

  19. Hi Cathy I, too, had got down to 2 mg but I was decreasing every two weeks from 5mg (1mg at a time). I wasn't feeling well and the pain got so bad that I came on this website. It makes all the difference knowing what other people have done with their reductions and I feel different about going back up to 7.5mg. My Doctor has always been keen to get me off steroids altogether so I was looking around for other treatments/physio/acupuncture. In fact I knew really that the only solution was a highter dose of steroids. The ladies in discussion with me have helped enormously and I am now treating Prednisolene as my friend rather than enemy. I've been on this higher dose for a week now and feel so relieved not to have such awful pain, Even my shoulder which I was putting through lots of exercise during the day - is much better for being rested. I think taking far more time to reduce the dose will help us in this battle!

    We will be positive! Hope you are feeling much better.

  20. Hi Carol and Cosima,

    Thanks for the replies. I feel better knowing this process (having to increase steroids again) is quite common and we are all in it together.

    Its such a lovely day out there I feel I should be outside gardening, or laying around in it. Unfortunately the heat makes me feel worse so I am sat inside in front of a fan instead!

    Hope you all have a great weekend.

    CathyG

  21. Hi Cathy

    Hope you have a great weekend too. I am not good in the heat at all ! I sit with the door open to the garden and fan myself! I am going to a wedding tomorrow morning and am so glad for the Bride's mother who has been crossing her fingers for good weather. I hope there is a little breeze!!

    Cosima

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