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Referral to St George's Hospital

Posted , 6 users are following.

Susanne_M_UK
Susanne_M_UK

When I saw my rheumy last month, he told me that he would see if I could be referred to St George's Hospital in south London. The reason being that I have been unable to get below 20mg Pred without having a flare. I can't take methotrexate due to liver function. I've now been on between 40 and 20mg Pred since last December (having been at 40 three times during that time due to flares).

Apparently, St George's has much better funding than my local hospital and therefore access to more expensive drugs that may help me reduce the Preds. I've no idea what they may be, as I didn't ask the right questions at the time due to my surprise at the referral and feeling a bit unwell.

Anyway, I have an appointment on 18 November, so we'll see what happens.

I'm currently feeling quite unwell/having a flare perhaps. My daughter got married last Saturday and I also had my mother staying with us. She came over from Denmark. The wedding was wonderful, but the stress of the time leading up to it and then having my quite cranky mother here obviously took its toll. So, now I'm trying to relax and am back to sleeping for a couple of hours every afternoon.

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  • Susanne_M_UK
    Susanne_M_UK

    Posted

    I had my first appointment today.

    Rheumy went through my history, as no medical notes had been sent to him.

    End result is that he told me they don't have any "miracle" drugs and he wants to start me on 15mg methotrexate once he gives me the ok after looking at the bloods I had done today and the chest xray I also had done. I told him my previous rheumy was reluctant to go down that route due to my fatty liver. He said it's the only way, I must reduce the Preds after so many years on them.

    I'm due to see a gastroenterologist in a few weeks time who will no doubt do a scan or biopsy. As I've had literally no alcohol for a couple of months, (I do miss a glass or two of wine at the weekend!) there should hopefully be some improvement.

    So, I should be starting the MTX in a day or two, preceded by Folic Acid.

    I'm not really happy about it, but can see no other way. I have put on an enormous amount of weight, - about 15kg, - yes really. From being a slimmish person, I'm now like a beached whale.

    I've been having a flare for several weeks during my dead slow taper of 20/19 and was asked to go back up to 22 at least for the time being. I'm not sure it's caused entirely by the taper, as my life has been so stressful lately with visitors, dinner guests etc.

    Bloods every two weeks at St G' s.

    The new rheumy called me "an expert patient"! :-)

    • EileenH
      EileenH Susanne_M_UK

      Posted

      Um, I know this isn't a contest - but I put on about 20kg with PMR first (no pred, no exercise, I couldn't move) and later with Medrol. I've lost about 17kg of that while still on pred. One lady with GCA put on about 6st - eventually went when she stopped pred. She is very tall - me, I'm 5'1" on a tall day redface

      Have to say, I'm not convinced about mtx if this is GCA - but it could well be that the flares now are not just PMR but LORA (or another arthritis, it isn't unknown) in which case it might help a lot. 

      Have you asked the new rheumy about toxcilizumab? There was a pilot study in the US published recently where it got 9 patients off pred in 4-6 months. There has been an international study using TCZ in GCA - don't know the results but what we've heard does sound sort of hopeful.

    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      Hi Eileen.

      Well, the weightloss you mention gives me hope. I have hardly been able to move off the sofa for much more than the odd brief walk to shops or similar. I do get out for various activities, but they are not physical.

      I've been back on 40mg Pred 3 times now in a year. I've been on Pred for about 6 years now, 5 of which were with PMR, so a much lower dose, but since GCA kicked in a year ago, it's been the big doses and severe lethargy.

      I don't think it's LORA, as the pain is in my temples and head.

      I haven't heard of TCZ, but I will look into it and ask rheumy next time.

      I spoke to Prof Dasgupta when he gave a talk a while ago at our Surrey Support Group. Of course, I couldn't give him a very detailed medical history due to it being a talk for the group, but he was in favour of MTX.

      I feel as if I have been asleep for the last year and I'm desperate to get, at least, some sort of life back. And seeing the photos of me at my daughter's recent wedding nearly made me cry!

    • EileenH
      EileenH Susanne_M_UK

      Posted

      I avoided the camera like the plague that day - and I still cringe looking at the one photo I didn't escape. They were all very un-traditional lineups which was helpful! There was a howling gale outside the church (not good with kilts) and it wasn't much better at the reception venue - I suppose you can't expect much else on the top of Whitby cliffs!

      I sometimes wonder about BD - he is one of the signatories to papers with guidelines saying that MTX has little role to play in GCA. 

    • EileenH
      EileenH

      Posted

      PS - meant to say that I haven't lost that weight without a lot of hard work, Carbs are pretty much non-existent in my diet these days - lots of salads and leafy veggies and small meat/fish portions (100g max). I started with walking a couple of hundred yards into the village and back - on crutches so hardly Speedy Gonzales. Now, half an hour walking briskly every day - you do get there but you have to be consistent.
    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      I do remember you saying this about BD before.

      I do need to rethink my diet (vegetarian, but I love cheese, bread etc and I'm always hungry due to the Preds). I'm seeing a dietician the week after next - at the request of my GP. I'm sure she will come up with loads of ways to starve myself!

    • EileenH
      EileenH Susanne_M_UK

      Posted

      Nothing wrong with cheese in moderation (lots of protein as well as fat that fills you up and keeps you feeling full up, no carbs). The bread maybe not so good - even if it is whole grain. The only thing that leaves me wanting more is carbs! Not desperately good at vegetarian nutrition - love proper veggie food but I couldn't live without my meat and fish I'm afraid. But 100g at a time is more than enough...
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