Other than steroids and hydroxychloroquine, which immunosuppressant treatments do you currently take?

73 Replies

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  • I am currently not taking any medication for my SLE. All treatment was stopped because I was diagnosed with leukaemia, prior to this it was Mycophenolate.

  • God Bless You!

  • Thankyou!

  • sorry hear that,sending cyber hug

  • Where's the comments section to add the others? I also take ciclosporin.

  • I am taking LDN Low Dose Naltrexone-had to get it privately-not an immune suppressant but definitely helping me-no side effects-and I am managing to lower my steroid dose-hopefully will be off of steroids completely within a month or so!!!

  • Sorry take Azathioprine. Can't seem to change my vote

  • Imuran is the brand name for Azathioprine, Stacey. You can vote that way.

  • Mepacrine

  • Mepacrine also as can't take hydroxycloroquine

  • Currently also taking sulfasalazine and having tocilizumab infusions - not strictly for lupus but have had an amazing effect. By far the best thing. Adalimumab and Rituximab had very little effect.

  • Taken off all drugs as I seem to over sensitive to most of them. Lost my hair

    taking methotrexate, now taking Celebrex for pain and inflammation.

  • none at the moment

  • I currently take Mychophenolate Mofetil, in the early days it was Hydroxychloroquine which I was allergic to, then I was on Methotrexate for a few years but was never able to come off of the steroids and then Azathioprine and Pred for a few years, then finally when I started having severe kidney involvement the Mychophenolate and Pred.

  • None

  • For me its just Hydroxychloroquine and symptoms still seem to be popping up, I am beginning to wonder if they are making any difference.

  • Only taking hydroxy but causing macular degeneration should I stop taking it

  • Only if your consultant recommends you to. Have you discussed it with them?

  • Thanks. I have to wait for 6 months before I can be seen . I'm just going to stop taking it. It seems the medics ain't concerned . I have to think of my health

  • Are you not able to make an emergency appointment? Is your GP helpful? You should really get advice before stopping medication as it can be potentially dangerous.

  • Took Plaquenil/hydroxychloroquine for 20 years till optician at regular eye test thought I was developing AMD. Referred to specialist who determined it was the v rare complication of Plaq/hydroxy which causes macular damage. (not AMD). Stopped drug immediately and only have slight loss of field of vision and some red/green perception, and although apparently it won't get any worse, will not improve either.I suggest you ask for specialist referral and ask for special tests.

  • I take 6-mercaptopurine - couldn't find a comments area to specify

  • I am only taking Prednisolone for my SLE as I am allergic to both Hydroxychloroquine and Chloroquine Sulphate, nothing else has been offered.

  • I am taking Prednisolone but have taken Mychophenolate Mofetil, Methotrexate, Hydroxychloroquine but all have been ineffective so I was given Cyclophosphamide whivh only worked for a few months after each course of three infusions. I am now waiting for the funding for Rituximab (which has been turned down three times).

  • The first time I was to have rituximab it was a battle for funding. Got it eventually and i was symptom free for 4 years. Had it a second time but it not have the desired effect. Hope you get.

    ((((Hugs)))))

  • I take Myfortic (gasto friendly Mycophenolate Mofetil) - would be interested to know how may of the 35 users are gastro intolerant to MMF and on Myfortic

  • None

  • Have been on Plaquenil & Prednisolone for 2yrs and Methotrexate for 5mnths with no noticeable improvement yet...due for consultant review this week.

  • I take gabapentine.

  • I take hydroxychloroquine and metoject (MTX injections) but no improvement in symptoms. Feel worse!! Plus ANA anti-dsdna keeps rising even with meds and cannot get any answers from consultant. Isn't lupus wonderful NOT!! Lol

    Lupie hugs to all xx

  • Mepracrine

  • Have been on Pred and Aza for 32 years continuously, also on Cyclosporin for 27 years but that is only post renal transplant., not to treat lupus as such.Also on Cyclophosphamide for 9 years daily tablet 1991-2000.Have tried short doses of MMF but didn't agree with my stomach!So wish I could find something to substitute for the Pred as has done so much damage to my skin and bones, but don't think I can ever come off it after all this time.

  • Only hydroxychloroquine.

  • Sulphasalazine..... Was methotrexate but have developed rheumatoid arthritis to add to SLE, fybromyalgia, Raynaulds, etc , scan showed scarring on my lungs, so changed over to sulphasalazine ....so far no side effects, but not helping much with pain. Hopefully few more weeks will be better. Also injections of kenalog when flare is really bad

  • After the discovery that I have damaged retinas from hydroxychloroquin for 20yrs I am on pain relief only - gabapentin & paracetamol.

  • Dapsone

  • Sorry Paul I'm on steroids (brain fog)

  • I also take advagraf (tacolimus as i have had a kidney transplant.

  • I take Nucynta for pain

  • Mercaptopurine. I was on Azathioprine but it made me nauseous.

  • I have six monthly infusions of Rituximab and Cyclophosamide as well as hydroxychloroquine.I have been on hydroxychloroquine for around 18 years now,and have been having Rituximab and Cyclophosamide for around 8 years now.

  • Mepacrine, an alternate antimalarial.

  • Methotrexate made my hands and feet swell terribly and made me a zombie mentally. Was on sulfasalazine for two years but that has stopped working

  • Enbrell

  • Hi , I am on Imuran, Planquinel , steroids, ciclazin for sickness, anitriptaline, omeprazole and and few others x

  • I hear you!!! X

  • Im just starting pn methotrexate can anybody who has been treated with this give me any info. I been told no alcohol so that my wkend visits to local knacked.

  • I wouldn't say that I take my meds for Lupus but rather for my renal transplant to avoid rejection, possibly to try and stop the Lupus attacking this kidney too. I take 5mg daily of Pred, 2mg twice daily of Prograf (tarcolimus) and 250mg Mycophenalate Mofetil twice daily. What sort of doses are others taking of Myco?

  • One hydroxycloroqine a day and mycophenolate mofetil by 3 2 times a day. These seemed to have worked for me an took a good bit off protein levels that was leaking from my kidneys down just hoping there gonna kick into the blood leaking levels soon! Ruth :)

  • Warfarin Sodium

  • kenalog injections

  • Azathioprine 125mgs

  • methotrexate once a week, hydrochloroquine 400 mg daily, just got off prednisone which I was taking about 5mgs a day!

  • I take Mycophenolate Mofetil

  • Mycophenolate Mofetil

  • I take ciclosporin

  • cellcept.....a nightmare. A lot if side effects but as we all know with the dozen different drugs and 22 years of serious sle with multiple organ involvement , Raynaud's. vascular disease and finally factor 5 leiden which has caused endless pulmonary emboli. Oh and I cant forget my hereditary angio edema.

    I'm tired guys.

  • Mycophenolate along side 6 month rituximab infusions! I have taken Mycophenolate in the past and it was great, very effective with no noticeable side effects! However this SLE flare has proven more difficult to treat and the Rituximab has had no perceivable effect on the flare as of yet, no side effects either. I am also only on week 6 of taking mycophenolate since the beginning of this flare (SLE) and so haven't yet had much improvement or any side effects from that either, although I am hoping in a couple of weeks as expected bloods and symptoms will improve!

  • Cell Cept: Mycophenolate Mofetil

  • I've had IVIg, cytoxan, plasmapherisis, and some of the meds mentioned but now I'm doing well enough to only take Omega 3 & other suppliments with my daily prednisone.

  • was on methotrexate stopped 2010 to try concieve then antibodies went mad so put on azathioprine 2012 but come off last April due to constant low lymphocytes and not much improvement currently on hydroxycloroquine only with pain relief. suffering greatly see rheumatolgist 1st June have not called in ask help as told me wont give me steriods or anything else.

  • Mepacrine

  • I have. Retuximub, and methotrexate.

  • I'm also on a once a month Benlysta injection.

  • Hi Doppelmom ,

    If possible, would you be able to share your experiences of having Benlysta by completing our anonymous survey at surveymonkey.co.uk/r/SMCLUP... please?

    Thank you.

  • I'm taking Prograf (tacralimus)

  • My Lupus is only skin related but its so bad I stay indoors with factor 50 on and curtains closed. shop on line stopped my life of enjoyment - golf, gardening and travelling.

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