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Looks like a life without Pred!!!

Posted , 6 users are following.

hilary_76724
hilary_76724

for those of you who didn't read my previous post re. Pred and stomach ulcers, I will briefly recap. My GP thought I had PMR so put me on Pred 15mg for a week and I was back to 75%nomal but had dreadful heartburn despite taking 40mg oh Omeprazole which I have for the past 10 years as I have had two previous perforated stomach ulcers due to Zollinger Ellison Syndrome. GP wouldn't continue with Pred and referred me to a Rheumatologist. On the first appointment he did lots of blood tests and gave me an injection in my bum which was miraculous. Saw him last week and definitely PMR in his opinion. He told me he would repeat injection four weeks from the first one. 12 days on from the first injection I have pain returning but more worryingly have pain in my stomach and vomiting something which resembles coffee grouts. I know this all too well from previous ulcers. Spoke to my gastroenterologist who told me to up Omeprazole to the maximum dose and NEVER to take Prednisolone or any form of steroids however they are administered, unless I have a death wish. How the hell (excuse the language) function without any medication any thoughts please please please

0 likes, 13 replies

13 Replies

  • christine_fay
    christine_fay hilary_76724

    Posted

    OMG! poor you.... What an awful predicament. However I would sooner stop the Omniprazol because the side effects were so much worse for me than the Preds.

    If they are being used for ulcer treatment it should only be short term until the ulcer heals. Eight weeks I think...I also had them for ten years and the damage is horrendous on other things.

    I think there are other medications that can help with the PMR but have yet to find a doctor that would prescribe them. Although some foods still give me heartburn I am no longer suffering the absolute agony I had a couple of months back when I weaned myself off. I am now starting a step down of Preds again from 15 to 12 and half, hoping I wont get a relapse in that department. I am hoping to be free of medication in six months.... you never know smile All my other auto immune conditions cleared up after two years...perhaps I will be lucky. I do hope you find a solution I can feel your agony...

     

    • hilary_76724
      hilary_76724 christine_fay

      Posted

      Christine i can't stop the Omeprazole. The nature of ZES means I produce too much Gastrin and hence ulcers and cancerous Gastrinomas. I have had a Gastrinoma removed from my pancreas last year. ive had radiotherapy from that and all sorts. Stopping Omeprazole is not an option. Having said all that I am a slim, feisty 63 year old who has never given up and always been able to do anything. With this you can't. Thanks for your suggestion anyway x
    • christine_fay
      christine_fay hilary_76724

      Posted

      I realise that, Omniprazol is designed for patients such as you but this stuff gets prescribed to people for long term use even when all they need is a diet change! It has devastating effects especially if one is not advised about suppliments of the vitamins and minerals it prevents being absorbed. Ionce had a client who had his complete stomach removed. (I am a chef) and although he could not digest food he still liked to eat on ocassion. I have no idea how he dealt with what he ate but he enjoyed his life as much as he could. There is always hope for the determined smile 
    • hilary_76724
      hilary_76724 christine_fay

      Posted

      You are right. It seems to be given to counteract any stomach problems with so many drugs. I am on monthly B12 injections because of it's effects but believe me I may not be here without it. A horrible drug but so is Pred. You take your choice.
  • EileenH
    EileenH hilary_76724

    Posted

    Where are you Hilary? 

    I managed mine for 5 years with no pred but it wasn't funny. Bowen therapy and Pilates were the best bits for lasting relief from certain bits of the pain. The gym I went to had aqua classes every morning - the earlier they were the better day I had afterwards. I also found time in the sauna/steam room helped a lot. 

    Using an electric blanket BEFORE getting out of bed makes that initial action less agonising and stretches in a warm shower also helps. I did find once I got moving it was better and better. Not sitting for too long but getting up and stretching at intervals also made that initial move less agonising as did always keeping warm.

    Leflunomide has worked for a few people I know. One had to come off it and is on something else whose name escapes me - I will try to find out. The pred made him very ill too so it became a no-no.

    • hilary_76724
      hilary_76724 EileenH

      Posted

      Thanks Eileen. I would really appreciate your feedback. The voice of reason. I get up early and have a hot shower. I try to hobble down to the beach with my gorgeous dog. He goes on the pebbles - I don't. Yes it helps but it's usually mid afternoon before I feel half normal. Having said that a glass of white wine with dinner helps to relax me. Is that a no no?
    • EileenH
      EileenH hilary_76724

      Posted

      If your gastroenterologist says its fine - then it's fine! I haven't given up wine, I've given up too much already! 

      Your rheumy could contact some of the research groups and ask for suggestions. There is a trial using tocilizumab, already on the go in GCA but of course there it must be used together with pred on ethical grounds. 

      If you follow this link

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      and go to the last paragraph of the final link you will find the outline of the toxcilizumab GCA trial in both original and an easy to understand version. It is also to be done in PMR - so there is no real reason why your rheumy couldn't trial that in you without pred if your gastro is happy. They obviously think it could work. Will look for more info.

      I always felt as if I was walking on pebbles anyway - thank goodness that has gone even if the PMR hasn't gone entirely!

    • EileenH
      EileenH hilary_76724

      Posted

      This is an extract from a post on antoher thread from a lady called Nellie who says she is also unable to take pred:

      " I was few months on Zyflamend - antiflamatory supplement based on Turmeric and few weeks on acupuncture and antiflamatory diet (less bread, less coffee, more fruits and veggies) and I felt much, much better in comparison taking nothing or pain killers. In January 2015 I had very stressful month at work and got sick with cold/virus. Also I ran out of Zyflamend. And all my pains came back almost as bad as originally when I got sick in February 2014. I even did not know how Zyflamend help me till I ran out of it."

  • MrsO-UK_Surrey
    MrsO-UK_Surrey hilary_76724

    Posted

    Hilary, whilst Eileen is looking up a recommended alternative as you are unable to take Prednisolone, I am wondering whether you have ever taken Lansoprazole instead of Omeprazole for your stomach/esophagus problem?  Lansoprazole is generally considered to be the more effective and faster acting of the two, and I'm wondering if this might help you more speedily at the moment - after 10 years on Omeprazole, perhaps a change would prove more beneficial.  Meanwhile, a daily  'live' probiotic yoghurt may go a little way to help.
  • vanessa66630
    vanessa66630 hilary_76724

    Posted

    Hi Hilary, dont know if this will help but know Eileen will be able to answer, but I take Lodotra and I know Eileen does, my Rheumatologist allowed me to take them because of stomache ulcers, then read somewhere that you should not take omeprazole and lodotra together but Rheumy is aware I take both so must be ok, just thought this might help.
    • hilary_76724
      hilary_76724 vanessa66630

      Posted

      Thank you Vanessa. I don't know much about it although Eileen has probably mentioned it to me. The Rheumy did mention various other drugs yesterday but didn't think they would help. I'm not sure if that was one of them.
    • EileenH
      EileenH hilary_76724

      Posted

      I suspect Lodotra wouldn't work for you if the gastric problems are so severe and enteric coated are not acceptable.

      Did he mention toxcilizumab? That might be worth a go since it is currently in trial for GCA and PMR is also on the list for a trial if it hasn't already started.

       

  • vanessa66630
    vanessa66630 hilary_76724

    Posted

    lodotra is pred but I believe it protects your stomach, have been looking for Eileens reply but she is the one you should talk to, Lodotra is really expensive but I believe if I am correct your doctor should give it to you rather than you suffer, good luck.
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