1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Helloooo. Is there anybody there!!

Posted , 6 users are following.

Lizzie_Ellen
Lizzie_Ellen

Just thought I would break the spell :wizard: and get us all going again (nothing posted since the 29th April as far as I can see!). I hope everyone had a good bank holiday - seems as though we've had nothing but long weekends lately. I've managed to stay on 3mgs - I think I may have got away with the dreaded flare-up smile I don't feel as good as usual, but I don't feel so bad that I need to up the Pred. So, fingers crossed, I may be one of the lucky ones. Back on the diet today! No more :redwine: , no more :choc: , no more :cake: Well, just for a while anyway, I seem to have put on a cheeky little half a stone without realizing it! I lost weight when I started on the Pred (15mgs) and then started putting it back on when I reached 5mgs. I really do seem to do things back-to-front :lol: Anyway, I hope you're all feeling as well as possible. I'm just off to the Hospital with Jake for his first check-up. He seems to be very well, just bone tired (like his Nannie), so we're hoping he gets the thumbs up from the Docs.

Take care everyone,

Love from Lizzie Ellen xxx

0 likes, 20 replies

20 Replies

Prev
  • EileenH
    EileenH

    Posted

    BettyE - that sounds a bit draconian! Was the brain gone all wooly too? :wink: :lol:

    Eileen

  • BettyE
    BettyE

    Posted

    Eileen, No, the brain was fine on the dentist's anaesthetic; it was the cocodamol that made me woolly and not just the brain.

    Took your advice and am giving them a miss. :sheep:

  • Mrs_G
    Mrs_G

    Posted

    I just thought I would pop in and say Hello !!

    Have been in Spain for 8 days and it was lovely Walked lots every day but ate and drank lots also !!

    First day I was there and bumped into someone there we have met before who now lives there permantly and she said she was just off to investigate a new massage place that had been opened So i said I would be interested as I had muscle illness Polymyalgia and she said so have I !!

    She has had it for several years I would have liked to chat more with her but she was away for a few days but she did say her Spanish Dr wasnt happy with her on the steroids and she had been put on another drug and felt great The drug is (one for Eileen to investigate here !!) Celebrex 200mg with the name under Celecoxib Has any one heard of it being used here ?? She said she has felt a lot better with it and can do much more I would have liked to chat more as she said another friend there has PMR also Soperhaps the sun isnt as good for us as we think

    Best wishes and I will carry on catching up on both forums !!

    Mrs G

  • EileenH
    EileenH

    Posted

    Celebrex is the only one of a group of drugs called cox2 inhibitors which is still available. They were hailed as the miracle pain killers for arthritis patients when they were launched (where have we heard that before) and were used very successfully until about 6 years ago when post-market launch studies suggested that patients were having a lot of cardiac problems. The one you may remember hearing about was Vioxx which was withdrawn by the manufacturer amidst a scandal over the number of patients who had potentially had a heart attack and died as a result of taking the drug - and the manufacturer had hidden the results, even threatening staff if they disclosed anything.

    Celebrex is still on the market but with the warning that it shouldn't be given to patients where it will increase their cardiac risk - and it too has gastric side-effects. As I have said before, there are as good as no drugs with no side-effects and it is always a case of balancing the benefits against the downsides. There is no suggestion anywhere that I have seen about cox2 inhibitors being used in PMR but I will go and make more detailed searches. I have to admit, I thought they had all been withdrawn as I remember the complaints from patients who had been pain-free on them and were, understandably, upset at losing a drug that was such a lifeline for them.

    Eileen

  • Mrs_G
    Mrs_G

    Posted

    Thats interesting Eileen

    As i said i would have liked a longer chat with the lady She has been living in Spain permanantly for 8 years I think so I would imagine has always been treated for PMR in Spain I dont know how aware she is of the side effects or how PMR knowledgeable she is either

    I am happy enough with the side effects of steroids I have but its always interesting when you hear of a \"\"\" wonder drug \"\" !!

    Thanks

    Rosemary

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.