GCA and lefumomide

Saw new rheumy today and he changed the Azathri0prine to Lefumomide. I was never happy with the Azathrioprine but does anyone know anything about Lefumomide. Also he put my steroids up to 30 mg as I have had bad flares after going down to 25mg as my old rheumy insisted on 5 mg per week which everyone said is too fast. I am to stay on 30 for 4 weeks which seems a blow having fought to get down to 25 and I have put on over a stone and am already overweight - but I felt I should go up as I have felt really awful. He didnt look at any of my scans including the PET SCAN used to diagnose me , nor my recent bone density scan. He just said carry on taking the ADCAL and aleondronic. He seemed to rely mostly on what I said to him. My bone scan said I have osteoprenia and that I have a young adult T-score of -1.9 and a 22.8% chance of fracture within 10 years - otherwise I am not sure what that means or if I need further treatment. Its all so confusing. He said he will write to Prof. Dasgupta about me having Tocilizumab although it is not yet licensed for GCA.

Well I guess I made some progress and at least I know what to do next. I have had so many problems getting anyone to answer my questions. My GP never returns my calls and getting blood results etc. is like getting blood out of stone - excuse the pun. Many thanks to all who help with their knowledge.

8 Replies

  • Your bone scan is actually at a level where it's no longer recommended that you take bisphosphonates. It's been prescribed to you as a preventative because of the fact that pred sometimes affects bone density. But there are other ways of keeping the bone density at a healthy level so I wonder if you would be well advised to look into that and drop the AA? One less medication with possible side effects? Just a suggestion.

  • Hi Christine

    My personal experience with Lefunomide was positive, for the first six months of treatment (active RA)was making great progress then the . Side effects started , itchy skin , from scalp to toe ! Night time being the worst time . Nausea , acne ( I'm a 56 year old with acne !!! ) my liver functions test blood results went sky high , along with my blood pressure , that went sky high too !!! A bit concerning as I'm generally a well chilled person ! Blood pressure readings were at one point 210/145 !!! So my rheumatologist immediately discontinued it , and I was commenced on irbesartan , which has corrected the problem. Along with stopping the Lefunomide .

    I too am over weight , and have a fatty liver , my liver functions are still out , I'm having prednisone injections every 3 months, and so I struggle to keep the weight at bay . It creeps up !!

    I hope that the Lefunomide is effective in your treatment plan . But do keep an eye on your blood pressure and inform your doctor as soon as it shows signs of increasing , and request regular LFTs .

  • I had a bone scan and I have osteopenia but both my rheum doc and endocrinologist are fine with me not taking AA. They compared my new scan to one from eight years ago. My hip showed a slight improvement and the slight deterioration in my spine was deemed "insignificant."

    My endo said to just keep up with my calcium and vitamin D, no need for the AA. She tests my blood level of Vitamin D 2x a year and has for ages, something she originally did at my request after I read how common Vit D deficiency was and the effect it might have on many health issues. I was in the "severe deficiency" range and have taken large doses year round ever since to keep me in the normal range.

  • Hi SusanEleven. Glad things are working out so well for you. I hope that I have a similar result with next scan in October! Do you know about Vitamin K2? Not K1, which is easy to get in our diet. Vitamin K2 works to get calcium into the bones where it belongs. Along with Vitamin D3 and magnesium it's really important for maintaining bone health, as well as avoiding problems from too much calcium which can happen with absence of Vitamin K2.

  • Hi HeronNS,

    Thank you for the info. I didn't know about K2. I was reading about thyme tea a day ago (surplus of garden thyme) and it said it was a good source of Vit K, but I'm assuming it's K1. I'm definitely going to check out K2. And I wish you the best with your next scan. I was pleasantly surprised with mine. Vit D was really the turning point for me.

  • K2 isn't as well known as it should be. My daughter is a registered dietitian and she didn't know about it until I told her. She read the book I recommended. I'd heard about it from a friend who also has been dealing (successfully) with osteopenia the natural way. I went to a bone clinic at the local hospital and neither the dietitian nor the rheumatologist seemed to know anything about it. The rheumatologist actually said there had been four studies showing it didn't work - except those are older studies and I'm not sure they distinguished between K1 and K2! Japanese research shows that it is helpful. Apparently we can get some from fermented foods like kefir, brie, yoghurt, sauerkraut and similar foods, and our bodies make a small amount, but to get a therapeutic amount we need to take a supplement. Unless you're able to consume grass fed animal products. It's the change in the way we produce meat and dairy which has led to a deficiency in Vitamin K2. It seems that the form called "MK7" is better than "MK4".



  • Many thanks will look into the fits you mention. Am already taking magnesium

  • Sorry typo, I meant vits. Not fits

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