Low dose steroids & other meds - pros and cons

Does anyone have experience of low dose steroids (Prednisolone) for inflammation associated with Scleroderma and also Plaquenil for same inflammation? I am unhappy about taking the steroids for any length of time (already been on them 6 months) as the weight gain is considerable - can't stop eating, which I understand, amongst other nasty side effects is often experienced. Would appreciate some feedback from other members who are taking the same medication and whether their experience of benefits outweighs the disadvantages. Thank you.

6 Replies

  • I have MCTD & take both Plaquenil & 5mg Prednisolone.I haven't put weight on on that dose & the combination suits me,Have been on steroids for about 8 years & my DEXA scan is still ok.Have had no ill effects from the Plaquenil as far as I know & have been on them on & off for about 20 years.Hope this helps Good luck Jane

  • I also have Scleroderma, but do not take medication for the inflammation, as I have decided recently, after talking to a lady I met at The Royal Free Hosptial in London, this year, that I will try a natural form for the inflammation. TUMERIC is a herb from the ginger family. She has been useing it for some time and has felt it has helped her. Fresh root Tumeric from an Indian shop, take 1 tsp per day, It's not expensive, you can freeze it as well. I wish you well, and am sorry I cannot help regarding other ways.

  • I have been on Plaquenil and prednisilone 7.5mg since December. I am sure the steroid started to reduce inflammation straight away. However I HATE taking it. I have put on a pile of weight and I do not like the way I look. I had breast cancer last year and had a mastectomy and chemo which was all horrible and I have morphed from a slim attractive woman with long blonde hair into a two stone heavier old lady with chemo curls which are grey. I have started reducing the prednisolone to 6.25 mg. I am also taking loads of other medication as my scleroderma has been really bad and horribly painful with really nasty electric type pains.

    Now I have a problem with my back where I can't stand straight and am bent over and uncomfortable with that.

    I am praying it is not cancer secondaries in my bones. I had an X-ray on Friday and I'm waiting to hear if I will need a bone scan.

    So all in all I've had better days.....weeks.....months.....years.

  • Thanks for your useful reply. I can sympathise as in the past two years I have been ill-health retired - Sclero, Sjogrens and spondylosis of the spine and osteoarthritis. I too shall ask to have my Pred reduced as although I have felt better, I don't feel that the side effects are partiularly encouraging!"

    Good luck with the results of your test. Best wishes for some relief soon!

  • I have CREST, my Rheumatologist suggested taking the Pred at night after I put on weight. Not taking it at present, have been on a diet & lost 26 kg which has helped in many ways. Will start back on it again soon.

  • I was taking low dose for a few years and maintained my flat tum! Then I got really ill from an infection - ended up adding Polyarthritis to my 'list' and had to go on high dose steroids for months (as well as injections and infusions). That was when I put the weight on, though I still weigh less than 10 stone. I have had to take Adcal since.

    Personally, I couldn't tolerate Plaquenil, though it would be great for you if it works. Methotrexate doesn't seem to be working for me either, even though I've been on it for 3 months.

    At low doses, steroids are fine. And you will feel the benefits of it pretty quickly. It's the high doses that seem to cause more concern if you have Scleroderma. If the Plaquenil works, your doctor will try to reduce your steroid dose gradually

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