Hi, I'm new here and I suffer from Sjögrens syndrome and lupus, and I've been taking 200 mg Hydroxychloroquine since a couple of years back. Moreover, I've been taking 150 mg Azathioprine the latest months, which lowered my white blood cells extremely. The Numbers were so low that the doctors had to stop the treatment. Azathioprine caused me 3 tonsillitis during the three latests months. Despite interrupting it, I Was admitted to the hospital last week for pleurisy, and I am still here, and I'm currently taking cortisone. I Also had pericarditis last October and in March this year, and in general I have flares constantly. Now, the doctors are suggesting the immunosuppressive medicine Methotrexate. The doctors have told Me that this is better and do not affect the white blood cells that much. However, based on my previous experience I am afraid that it will end up like it did with Azathioprine.
So dear people what are your experience of Methotrexate and how did it work? Moreover, for those that tried Azathioprine before-how did it work in comparison to Methotrexate ? And are there any other options that are less detrimental?
I'm thankful for your answers.
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Kahina
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Mycophenolate seems to be a generally better tolerated DMARD. It's a more expensive option but you should definitely ask your rheumatologist to consider it.
I was on azathioprine but it raised my liver enzymes so had to stop it, just after it was finally making me feel better! Now I am on mycophenolate which hopefully so far has been ok on the blood test front! Just not feeling massive amount better but think there is room to increase the dose yet.
I've got friends on methatrexate but mainly for RA but they seem to do ok on it.
Hello. Sorry to hear you have been so unwell. Are you still in hospital?
I am on 2 x 200mg a day of hydroxy plus 3g of mycophenolate mofetil or MMF for short (that's the max dosage) and now 50mg mepacrine 3 times per week as well, plus antihistamines. Is there a reason you are only on 200mg of hydroxy? Is it your weight - it depends on your weight apparently - if you are too small to handle the max dosage.
I'm now seeing a Lupus specialist in London, after realising that I wasn't getting anywhere fast with my treatment locally and he might still tweak dosages and possibly reduce MMF and add in methotrexate.
I was offered azathioprine or MMF last May/June time. I opted for MMF. I've been on it for a year now I guess. I've tolerated it very well. Monthly bloods are all good. I researched it a lot and read posts on here - using the search facility - and it appears to be a good drug and well tolerated. You could ask about it? Nothing ventured, nothing gained.
My final question, which hospital are you treated in? Is it a Lupus Centre of excellence? Do you have faith in your doctors?
Sorry for my late response, I 've been focusing on recovering. I never thought about it why I'm on 200mg, I'm not that thin either haha, but I will ask my rheumatologist about the dose.
I'm happy it has worked for you, I will ask my rheumatologist about MMF. It really seems to be effective. I've been on methotrexate for 4 months, it has decreased my severe flares, but the hair loss is crazy! Thank you dear for your help
We offer a free information pack that contains factsheets, guides, a list of helplines and a list of LUPUS UK contacts who you can speak to over the telephone. To download or request the pack click here: lupusuk.org.uk/request-info...
According to The Lupus Encyclopedia, methotrexate works by supressing the immune system; “however it is considered a weak immunosuppressant when used at the doses used in SLE”. Methotrexate can be taken either orally or through an injection on a weekly basis. The encyclopedia states that “When it is injected, 100% of the medicine enters the body. When it is swallowed in pill or liquid form, much of it is actually excreted in the feces”.
Guy’s and St Thomas’ NHS Foundation Trust provide a detailed guide on methotrexate which I hope will be of help to you: guysandstthomas.nhs.uk/reso...
Sorry for my late reply I've been too busy recovering. Thank you for sharing the info pack, links and answering the question. I've been on methotrexate for 4 months now and I have seen an improvement with less serious flares, however, the hair loss is tremendous. I will keep you updated for sure
I was on several meds including hydroxy, prednisone, and methotraxate. Then I became vegetarian with some cheese, eggs, and fish. But no meat or chicken. Now I just take hydroxy as needed. But will probably stop it completely soon.
Hi I’ve been on hydroxy for 2 yr and went on to methatrexate 18 month ago I persisted with the tablet for 12 month but it made me feal Ill two days after taking it finally started to self inject straight away did not feel ill dut I’ve been taken off methatrexate for 12 month due to infections and ai now realising how much better I felt on it I’ve been off it for 3 month now and have most of the simptoms back and gradually getting worse if you can try and get the injections they don’t make you feel so ill
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Tips and advice on living with immunosuppression please 
Another Med to try 
Blood works and my results 
Need to lose weight for my big day 👰!
