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Chemotherapy

Posted , 8 users are following.

liz12234
liz12234

Has anyone with GCA had chemotherapy for it a friend of mine with PMR and GCA has been told thats what she needs. I keep telling her to join this forum but she is not good with a computer, I have found it so useful, I was diagnosed in Nov 14 and went from 15mg to 12,5,11,10 and from then on a drop of .5 all of it for a month at a time, i am now on 6mg and its looking good fingers crossed, i would like to thank all you good people in giving me the confidence to control the preds, my Dr has just let me get on with it, i do get tired but i havnt slept properly for years so no change there. I am on AA and dont really want to be, has it actually changed anyones dexa results after 5yrs. I do think how lucky i am not to suffer like some of you so thanks again Liz

1 like, 17 replies

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  • ptolemy
    ptolemy liz12234

    Posted

    Who told your friend she should have chemo for PMR/GCA? Was it a medical professional?

    I have heard that there has been some research done on killing off the immune system with chemo and then letting it become reborn again, this was not for PMR/GCA but for another auto immune disease. I am not sure if this is still on mice or they have now tried it on humans. I don't think I want to be in the queue for it! 

  • Oregonjohn-UK
    Oregonjohn-UK liz12234

    Posted

    Liz did you have a Dexascan before you started preds?  I was 'given' AA so bad side effects I stopped and informed GP I needed a Dexascan but just said 'keep an eye on things!  I have not taken any since (was only on for 3 weeks at the start)  Not sure how long you have been on AA as there is a limit of 5 years?
  • faye______00403
    faye______00403 liz12234

    Posted

    I'd have to get a 2nd, 3rd and 4th opinion on this one.   Even then

    not sure I'd do it.....do be extra vigilant in checking this out!!

    I have been on Fossamax before and did get to a point where

    dexa showed that I could stop taking it....I was doing well until

    the nightmare called pred came into my life.

    • liz12234
      liz12234 faye______00403

      Posted

      I have only been on it for 2months and i had a Dexa Scan December which showed Ostoporosis in my left hip, yes they said to take it for 5yrs
  • Nefret
    Nefret liz12234

    Posted

    Have they offered her methotrexate or similar?  These are chemo drugs which are/can be used alongside Pred as 'steroid sparers' and they are given only in very small doses compared to those used for chemo.

    Their effectiveness is in some doubt and they are only used for PMR, they are not (as far as I know) used for GCA and I believe there has been some research which shows they don't work for it.

    I was 'lucky' in that I was unable to take the biphosphonates for bone protection - lucky in that I would have refused it anyway and I was fine on just Calcium and Vit D tabs for some eight years.  Then I needed some help.......supposing I'd been on AA already for 5 years and now 3 years later needed bone protection?  There wouldn't be anything standard which I could have been given - what a mess it would have been.

    • liz12234
      liz12234 Nefret

      Posted

      Yes she has been on methotrexate for some time and AA obviously not working
    • Susanne_M_UK
      Susanne_M_UK Nefret

      Posted

      Netfret, I have GCA and have been taking MTX since early January due to being unable to get below 20mg pred without flaring and also because I'm now getting so many bad side effects from long term use of high dose of pred. It's too early to say whether they will work, but it's a last resort for me.
    • Nefret
      Nefret Susanne_M_UK

      Posted

      I was on MTX for 2 years and it clearly wasn't working, so just came off.  It did appear to be working initially, but all that happened was that the Pred dose got low enough to let in a horrendous GCA flare.  Following that, I had great difficulty in reducing while still on MTX so it was stopped and I was able to carry on reducing at a higher rate.
    • EileenH
      EileenH Susanne_M_UK

      Posted

      I hope it isn't a last resort Susanne - if your pred side effects are so bad and you can't reduce the pred then you will very likely become a candidate for tocilizumab once it is approved for GCA. I understand indirectly from someone who works for the company they are expecting that to happen by the FDA in the next year at the most. The study has progressed to deciding what dose - that it works seems to be accepted.
    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      Maybe I will be lucky then! My previous rheumy referred me to St George's in London when he felt he was no longer able to help me get below 20mg pred.

      I believe he thought they had new drugs not available for him to prescribe. As it turned out, they told me they didn't have any such drugs and I reluctantly started MTX.

      I saw my rheumy at St G's yesterday and he agreed for me to try to taper by 2.5mg/week (currently on 35mg following flare) until I get to 25mg, (even that may be too quick though) and then by 1mg every 3 weeks. He hopes that by the time I get to my sticking point of 20-25mg, the MTX will have kicked in.

      If it doesn't kick in by the time I see him again mid June, I will ask him about the new drug.

    • EileenH
      EileenH Susanne_M_UK

      Posted

      "the MTX will have kicked in"

      I don't understand that view at all. In RA methotrexate takes about 6 months to "kick in" fully, that is a perfectly reasonable wait to see if it works and if it doesn't in that time they start to consider the next drug on the list. In PMR however, the generally accepted theory is that the MTX doesn't have any effect on the PMR itself but changes the way the body metabolises the pred and allows a given dose to have more effect. Over and above that is the concept that about 1 in 6 patients originally given a diagnosis of PMR have that dx changed at some point, more often than not to one of LORA, where MTX will probably work.

      In the case of GCA I just don't understand where MTX fits in except in the hope that this patient will have the steroid-enhancing effect. It is something I discussed with the local rheumy here - he said exactly the same and that he had just been at a rheumatology meeting in Germany where the same opinion had been expressed. 

      Do I remember rightly - you had a positive TAB? Such a shame you weren't offered a place on the trial - there was at least a chance you'd have been given TCZ and I think in the later stages everybody was given it.

      I really do hope the MTX works for you and you have none of the side-effects.

    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      No, I didn't have a TAB at all! My then rheumy asked my GP to arrange it quickly. Instead she sent me for an eye test! Complete mess up by that GP generally and the practice supported her. Hence the reason I switched GP practice.

      As I understand it, rheumy believes the MTX will allow me to taper the pred to an acceptable level. Whether that will work, I don't know. They are always referring to me as an "atypical case" because my markers are not always raised when I have a flare.

    • EileenH
      EileenH Susanne_M_UK

      Posted

      As I've said before - at what point do they admit that, judging by the forums at least, "atypical" applies to an awful lot of people so can they actually say anything is typical?
  • EileenH
    EileenH liz12234

    Posted

    By whom and what sort of "chemotherapy"?

    I suppose it depends what you define as chemotherapy. There are forms of vasculitis that are managed using cyclophosphamide - which is a drug used in chemotherapy for cancer - and also other drugs from the same stable. However - there are NO studies that show that it, or any other drug used for chemotherapy as we normally think of it will work for GCA which is a quite specific form of vasculitis and for which pred remains the mainstay of management.

    There has recently been a clinical study done in GCA using a monoclonal antibody(mab) called tocilizumab but it of itself is not a chemotherapy drug and is usually used for rheumatoid arthritis. You can combine a mab with a chemo drug so the drug gets to the place it needs to be, the tumour, but that doesn't apply in GCA - it is inflammation not a tumour.

    Methotrexate is "chemotherapy" - but at a very different dose for cancer. There is no real evidence it works in GCA but is suggested in the most recent guidelines as an add-in if a patient relapses more than once or cannot reduce their dose of pred. Our experience is that if you reduce in small enough steps and at long enough intervals you can reduce the dose quite well without it. 

    Now you have been on AA for 5 years you need to prod your doctors. You need a dexascan to see the real state of your bones - and you need to consider a change to something different if you need it. AA should not be used for more than 5 years(says the FDA)  because beyond that the risks of some of the more unpleasant side effects increase a lot. There are 2 ladies on the forums who developed shin splints in one and bilateral spontaneous fractured femurs in the other after less than 2 years - both due to use of AA. 

    But without a bit more info about your friend - can't really say a lot more. Can't you sit down with her and guide her through the maze?

    • liz12234
      liz12234 EileenH

      Posted

      Hi Eileen, Thanks for your reply, i will endeavour to find out more from my friend when i see her. I think you misread my bit about taking AA, i have only been on it for 2months and have had PMR for 15mths now, i had a dexa scan about 3mths ago which showed ostoporosis in left hip, i really dont want to take AA and just wondered if anyone had good results after taking it for 5yrs. I am taking calcium tablets, will be grateful for any comments.
    • EileenH
      EileenH liz12234

      Posted

      That's OK then - but how bad was the OP in the hip? If you want to discuss it with real experts the UK National Osteoporosis Society has a superb helpline who will talk you through your results and the various and best options for you.
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