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My GCA is an atypical variety that is hard to control..HELP

Posted , 6 users are following.

janet08828
janet08828

After nearly 2 years with Prednisolone and Methotrexate I was finally getting the Prednislone down to the maintenance dose of 5 mg daily - the light at the end of the tunnel was getting closer... unfortunately my blood tests showed that this wasn't the case. Prednisolone dose is now set to 10 mg daily and the Methotrexate that apparently doesn't work for me is now to be dropped and I have to start with Mycphenolatmofetil - seems to e to be a pretty serious drug - with some possible drastic side effects - I already have various side effects from the 2 former mentioned drugs. Am just feeling a bit fed up with the whole process right now.

Anybody out there have any experience that they can share?

By the way - I don't have GCA in my head - it only presents itself in my body - I have no pain - a blessing for which I am very grateful and also I haven't turned 60 yet, so as I understand it I am younger than most who have this ailment?

Any input would be very welcome - especially if anyone is being treated with Mycophenolatmofetil.

Thankyou.

3 likes, 32 replies

32 Replies

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  • tina-uk_cwall
    tina-uk_cwall janet08828

    Posted

    Janet, slap on your wrist number one! It is very important for us all to know as much about our condition and how it should be treated as possible. Because if we are ignorant to our condition it allows clinicians to prescribe medications or attempt to deal with our illness as they think fit. Now that is great if you have a really good rheumatologist but how do you know if they are good if you don't know about your illness and its recovery pathways in the first place.

    pmr/GCA (I don't know as much about GCA as I do PMR, but they are inflammatory conditions that thankfully are self limiting and the drugs we are given only mask the inflamation, they do not cure us. However the inflamation will burn out as and when it wants to and not when we magic it to, otherwise, that would be a cure! Some patients are luckly and it condition burns out quite quickly, 2 years but other patients the condition will be around for a lot longer and sometimes it will fizzile away for life. Therefore drs need to understand that the drugs And their doseages need to fit the level of inflamation that is there at the time and not attempt to fit the level of inflamation to fit the dose of drug that they want us to be on. Sometimes when our inflamation takes too long to burn out, that's too long for the consultants not for the condition, consultants attempt to try other drugs to control the condition so they introduce methotrexate, etc. in an attempt to speed up the recovery process. I have a reply on this thread currently addressed to Eileen about a paper written by the British medical journal that states all that I have said. My reply is currently with the moderators. If and when it is released look up the paper because it makes for good reading. Christina 

    • EileenH
      EileenH tina-uk_cwall

      Posted

      Send it as a PM Christina - but isn't BMJ behind a paywall for ages? Or is it relatively old? This is actually what I said in the post I just wrote to Janet, I probably started just as you posted this. 

      We are slowly getting through to some of the medics in the UK that there is probably not a lot wrong with pred used carefully with very small reduction steps and they are now saying not to use more than 1mg drops and one is using the slow reduction spread over a few weeks that is similar to mine. The trouble is, so many are terrified of the damage they believe pred does - without stopping to think about the damage PMR and GCA do when not properly controlled. I'll accept the possibility of osteoporosis in 15 years time if I can live reasonably well now and be at a lesser risk of the truly nasty long term consequences of vasculitis.

    • janet08828
      janet08828 tina-uk_cwall

      Posted

      Hello again Christina -

      Thanks - I have slapped my wrist - only a little slap though - I have really been trying to find out about this illness -I had never heard of it until I had it... if it was easy to get information I wouldn't be sitting in Denmark and finally be getting the relief of finding "others" in my situation in my old mother country! As soon as I was diagnosed I looked everything up that I could find here in DK - didn't really realise what having a chronic illness meant until I am sitting here 2 years later with the sinking feeling that I am stuck with it... and had no idea whatsoever that it would be so hard to get rid of. I am making up for it now though and finding out as much as I can - questioning this new drug - I think I will phone the doctor again and see if we can't wait and see if I get better just by upping the pred dose.

      Thnaks

      Janet

    • janet08828
      janet08828 EileenH

      Posted

      Forgot to mention - I have osteporosis - not a good combo with pred am under treatment for it and at my last test it has improved slightly.

      Probably explains the thinking that I need to be on a low dose pred

      Janet

    • tina-uk_cwall
      tina-uk_cwall janet08828

      Posted

      Well done! To be honest I had never heard of PMR/GCA until I was diagnosed with it and even then when I researched it was so pleased that I would be rid of my PMR within 2 years!! Well, that's what all the info leads us to believe. But of course that is not the reality. As I said the reality is that the condition, GCA too will burn out as and when it's ready and not to the tune of a consultant. 

      I am sure a good consultant here would still be dealing with you with preds only, after all it has only been a couple of years! (Only, what a word to use! But you know what I mean) also although I'm not medically trained I do believe, (not based on anything other than intuition), that switching patients from medication to medication does no good.  That's why I'm a firm believer in leaving patients on preds (unless there is a medical reason not to) and hopefully the preds will work out in the long run, after all the reason why many consultants change the men's is to speed up the recovery rate, and that simply cannot be done. Good luck Janet. Christina 

    • EileenH
      EileenH janet08828

      Posted

      There are things to combat the osteoporosis and they have far less unpleasant potential side effects than mycophenolate. They are used enough by orthopaedic specialists. I don't approve of them being used "just in case" - but when you really do have osteoporosis then it is perfectly reasonable. Plenty of people are on both pred and "bone protection". I have been very lucky in that sense, calcium and vit D has been quite adequate and my bone density is unchanged. Being on too low a dose of pred to manage the symptoms just leaves you with downsides with no benefits - and if you are less active that is the biggest risk factor for osteoporosis there is.

      What are you on? Nefret on this forum has been on denosumab for the last couple of years and all is back where it should be - and she will be on pred for life.

    • janet08828
      janet08828 EileenH

      Posted

      I think you misunderstood - I do have osteoporosis but am being treated with Alendronat - that is oddly enough one of the bright points in this whole case - I had no idea that I had it, the only reason that I found out - before I found out the hard way - was due to being checked when starting the pred treatment. I have been taking Alendronat for well over a year now anhe trick.d it seems to be doing t
    • EileenH
      EileenH janet08828

      Posted

      No, I did realise you were on something. What I was saying is that there are drugs for dealing with loss of bone density even if you are taking pred - it is not a reason to force a patient to a lower dose than achieves the required result. Some doctors will try to get patients off pred because they are heading for osteoporosis - and the result they achive is that the patient is immobile because of the PMR which is a high risk factor. They also tend to panic and hand out bisphosphonates like sweeties rather than do what you had, a dexascan. Your osteoporosis is obviously pre-existing and in that case I have no problem at all with "bone protection" medication being used then. It's the "just in case" attitude I have a problem with. Many patients have problems with alendronate - it is nice to hear of someone who doesn't!
  • tina-uk_cwall
    tina-uk_cwall janet08828

    Posted

    Janet, can I also add that 2 years to be on prednisone is not a long time and as for being on 10 mgs that is not a huge, huge, huge amount to be on. Christina 
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