Just want to off load. My dr's haven't stabilised my pred Yet. increased to 15mg and told to go down 5mg every two weeks and stay on 5. Within 3 days of reduction symptoms came back tenfold! Saw dr yesterday and back to 15 mg and have to have more blood tests. Dr says I need to look out for gca now as head ache jaw pain and tongue feels bruised. Only 48 really worried weight gain and very low mood. ...

8 Replies

  • NO, NO, NO - you can't do it like that with PMR. First you have to get the existing inflammation under control and then reduce SLOWLY, 1mg at a time is best. A rheumatologist did that to me too - I was OK at 5mg as it happened (for 2 weeks anyway) but when I stopped I too felt worse than to start with. That's how you use pred in other things, including RA flares, but it is the main medication for PMR and you need as much as you need - which is rarely 5mg this soon.

    Here are some useful links for you

    "The website for PMR-GCA NE can be found at pmr-gca-northeast.org.uk

    The forums within the NE site are here - pmrandgca.forumup.co.uk

    Other useful sites:

    PMR-GCA Scotland pmrandgca.org.uk

    There is also a new National Organisation PMR GCAuk which covers England, Wales & Northern Ireland - now has a website pmrgcauk.com.

    PMRGCAuk have a web-based community/forum on pmrgcauk.healthunlocked.com

    rcpe.ac.uk/sites/default/fi... (this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).

    pmrandgca.org.uk/research-a... This is a page with links to full articles on Research and Clinical Guidelines including A clinical review of Polymyalgia Rheumatica by BMJ."

    The last 2 links in the second paragraph are to medical review articles by top UK PMR experts. The reduction scheme quoted in both is 6 weeks at 15mg, 6 weeks at 12.5mg and then 1 year at 10mg. They are both aimed at GPs so print them out and take them to him to read. He has half a story - that PMR is managed with pred. That's a good start but now he needs to learn how to use it properly. They also provide advice about GCA - the most important being referral to an expert.

    I understand how rough and anxious you feel - but you will find lots of support and advice on the 3 forums. If the GP suspects you have GCA he needs to refer you to a rheumatologist because he doesn't appear too well up on PMR so I doubt he knows a lot about GCA. If your head and jaw pain gets worse over the weekend please do go to A&E (the ER) and tell them about your symptoms - above all if you get any visual symptoms.

    Yes, weight gain is a risk with pred - but it doesn't have to be so. A lot of ladies have found cutting carbs makes a big difference and they haven't gained weight. I have even lost 17kg while still on pred - by cutting carbs. It can be done. But there being a bit more of you to love isn't the end of the world - it will improve. But at the moment the important thing is for you to feel better again and avoid the risks of GCA.

    Where are you? Maybe we can suggest a good doctor.

  • The info given I faxed to surgery on Monday because I was concerned about reduction. I live in Hampshire

  • jaxpox, as your GP is sounding out of her depth as far as treating PMR is concerned, you really need to ask for referral to a rheumatologist. If she had kept you on the 15mg starting dose for at least a month, better still six weeks, the inflammation would have been far better controlled allowing you to decrease the dose successfully, but certainly not in the amounts that she has suggested in the past. If she is now suspecting GCA - and those symptoms do sound suspiciously like GCA - then you need to see a rheumatologist urgently. If you are working full-time plus the extra responsibilities you have, unfortunately that will not be helping, and in the event of being diagnosed with GCA you will certainly need some time off work to get the inflammation under control. Remain on that 15mg for now and, in the meantime, if you notice any visual disturbances do go straight to A&E.

  • Hi I seem to recall you were fortunate to have an Understanding GP as she also had the condition. I would be very surprised if she has managed the reductions she is asking of you. GCA occurs in about 10% of PMR patients, and not having the inflammation under control is definately increasing your risk. What is the headache and jaw pain like?, if either get worse you need to attend A&E. I have had GCA symptoms for 2 yr and I am constantly dismissed due to age (I'm now 49, was 47 when they started). I would not wish my last 2 yr on anyone. I am waiting to see the Prof in 10 days, but have already seen 1 expert who says "probable GCA". You need to be quite assertive with medics as most are ignorant to the fact that late 40s is not too young, and normal bloods do occur in GCA. Do you have a Rheumatologist?, they usually have a rheumatology nurse attached to the their team who is contactable by phone. If you have not been referred I would push for a referral as you are classed as atypical, and Rheumys like to exclude other possible causes for symptoms. Good luck, xx

  • Yes my dr has pmr but not available until next week. Saw another dr yesterday and in the week faxed over information shared by you lovely people! Also bought Kate Gilbert book. The dr yesterday was very understanding and stressed to me about gca symptoms and gave me more info. It is just a blessing having this forum.

  • Thanks I will push for one

  • How sad I feel after reading your post as I too have suffered this problem too..it's not nice, but in my case things did settle after a few weeks. Not a great comfort to you at this moment in time, but sadly none of us seem to respond to treatments the same, but I can assure you, it does get better eventually.

    My problem at this time is that Iv'e had extreme pain in my left hip and groin which disabled me for a whole month. I was unable to put my foot to the ground so couldn't walk, however after a month and with being hospitlised for several days, and being prescribed strong medication, ( Pred topped up from 5ml to 25ml) I'm back on my feet! The irony of this is that the diagnosis of trochanteric bursitis, (the hospital diagnosis) was incorrect, it was PMR, and after seeing a Rheumatologist this week he told me that I shouldn't have been on the dose of Pred, which I've been on for 6 years, without it being reduced periodically.....at the moment I'm having to reduce my intake from 25ml given to me in hospital,down to 20ml then 15ml, 10ml and hopefully back to 5ml over a period of weeks.

    When I was initially diagnosed in 2009 my Consultant recommended I got down to 7.5ml which I eventually achieved in 2012. I actually managed to get as low as 5ml, but sadly that year I had Sepsis cused by a rose thorn in my index finger. As a result my kidneys went to sleep, then came cellulitis and AF...yes all at the same time. As a result of this all my medication had to be changed. My Consultant told me my condition had caused me to have a slight heart problem. He felt I could benefit by having surgery so in November 2012 I underwent surgery, a new aortic valve and double bypass. An amazing experience, as my consultant didn't want to take veins from my legs or arms. He told me that my skin was very thin due to taking steroids and the scars might cause infection, so to avoid this he took veins from my mammary area, How clever! I have nothing but praise for these amazing young surgeons who perform such intricate operations, or for the nurses who care for you after such a traumatic operation, but for their skills I suspect many people wouldn't survive such an ordeal. How fortunate I was to have such wonderful care. Due to these problems my medication was changed yet again, I must admit I felt a bit like a yo-yo! Before too long I was back leading a normal life and my medication seemed to be back on track, but as I said, everything isn't as it seemed. I'm hopeful that this situation with medication levels will be turned around over the next week or so.

    I do hope your condition settles, soon, and I wish you well for the future.

  • I hope it does too. I think looking back I have had this condition for over 18mths as extreme pain in hip and shoulders

You may also like...