Hi all I hope you can help ! I have SLE ,SS, Hypo thyroid and Myeloma Cancer all diagnosed August 2015 - my question is those with lupus and /or Sjorgrens do you all take an immunosuppressant ? Is it the norm and is it expected to take this medication to control the progression of the diseases - and if so what ? I was on Cyclosporine but everytime ended up with a nasty infection and it had to be stopped eg chest infection - so I am reluctant and anxious to restart it , any advice will be much appreciated ? I am also having to try and reduce my prednisolone as it is believed to have caused damage to one of my eyes - CSR( central serous retinopathy ) - at present on 10mg daily - xx😀

17 Replies

  • I'm on immunosuppressive medication; yes, the expectation is for it to slow the disease down or put it in remission. However not all immunosuppressive medication is the same. I was on methotrexate to start (which I proved to have an allergic reaction to), but sulfasalazine worked really well. It has a very short effectiveness window however, and I tried plaquenil but also had a reaction. So I'm now in the anti-TNF tier, after having trialled the first anti-TNF, I am on a second which (I hope!) will be useful for a while .

    While I certainly understand people's squeamishness after having a bad reaction with a medication, it doesn't mean you will react badly to all of them! If a reaction occurs, there are other options out there which you can discuss with your specialist.

    I wish you peace of mind!

  • Hi jl1

    So sorry to read of all your diagnoses and problems. Must have been over whelming for you!. One of the side effects of immuno- suppressive drugs is they can lead to cancer so have to be well- monitored and I'm interested that you have a diagnosis of a form of cancer!. Presumably your medical team will have got together to decide how best to treat all your illnesses?. So sorry too that you have a serious side effect of the steroids!. What we all worry about when taking them. !. 10 mg is still a high daily dose but you probably took higher when having cancer treatment so it's a great achievement. When reducing them it's best to do it as slowly as possible for your body's sake!. 1 mg a fortnight or even a month but I bet you've got these instructions from your Rheumy!. I hope you get things better sorted as you have such a lot to cope with. X

  • Thankyou so much for taking the time to reply - I think I am still in denial and shock some days better than others ! I was working as a nurse for 29 years so I have had to take ill health retirement so that has been hard to accept too ! My Rheumy advised the same about the steroids reduction but my haematologist wants me to try and reduce a bit quicker as there is a risk of blindness whilst still taking them - I have just managed .5 mg in the last fortnight so going to try and do 1 mg the next fortnight see how it goes - apparently my Rheumy chose cyclosporine for that reason as it's better for me as I already have cancer - Thankyou again for replying it really helps ! Best wishes xx

  • Hi jl1w

    You have had a lot to cope with quickly having to also take early health retirement. That's really tough!. I'm glad you've got a good healthcare team who have thought thru your drugs. It's tough reducing the steroids, you've done well reducing by 5mg. Good luck for your next reduction, the slower you can do it the more sustainable it is and kinder to your poor body although I understand the urgent need in your case!. It makes me grateful that my only side effect so far from them has been osteoporosis that's being treated!, If only steroids weren't so effective we wouldn't feel so torn or be constantly asked by our doctor's what dose have we reduced to!. Glad to help and keep us posted,x

  • Hi Misty , thanks for replying , I am very lucky to have an excellent Rheumy and haematologist who are both very knowledgable but also kind and caring the ophthalmologist is very knowledgable but very matter of fact but as long as they know there stuff ! Big problem is they don't talk to each other ,only rely on the medical notes and myself I do pass messages from one to another to try and ensure consistency in decisions and care .

    Sorry I think I was not very clear , I have reduced my pred by 0.5 mg (not 5 mg )in the last 2 weeks now trying 1 mg - I started at 60mg last year and managed a couple of times to get down to 10mg but then due to flare up or infection have had to go back up again - I am so sorry to read you have osteoporosis I hope the medical team are looking after you well ! Have a good day very best wishes xx

  • Hi JL1w

    It is an added stress you can do without making sure your consultants get the right info from each other. Are they at the same hospital?. I had this for years and then was transformed when I had all my consultants at my local hospital. Admittedly this happened because my health changed so much I could no longer travel long distances to see Specialists!. I do get very good care now from them and my GP liases with them when needed!. Hope you have a very supportive GP too as it makes such a difference. I'm sorry I misread your steroid reduction of 0.5mg. Glad it is very gentle. Good luck for doing 1mg. I'm sure you'll be fine. You did well to get to 10mg, have you a target you have to reach?. I've reduced from 25mg to 8mg in just over a year and do it by 1mg tablets very slowly!. I've got to get to below 7mg and its very hard. Have stayed on 8mg for a while as flaring!. My Rheumy luckily gives me flexibility as long as I'm reducing not increasing!.

    Take care and keep us posted. x

  • Hi Misty thanks a lot for your message it's good to chat ! Yes the professionals are all together at our local hospital ,actually only a corridor away from each other but for some reason it's too difficult to just chat - maybe it's not the correct thing to do these days with confidentiality and all ! I need to get off steroids all together ideally for my eyes sake ! My Rheumy wants me to start on cyclosporine again whilst I am weaning steroids, I would like to think I could manage without as nervous about infection risk but do wonder if immunosuppressants will be best for my long term health ! Hope you had a good day x

  • Hi jl1w

    I'm glad your consultants are so good because it gives you important confidence in them!. You have a good point about confidentiality and I wonder if they insist on following protocol, medics can be like this?. Mine know each other socially so find it easier to chat!. My Gastro said when he wanted me to change Rheumy's, he would chat to him in hospital corridor asking what treatment I'm on!. I think they do as they're all up to speed with where I'm at!. Funnily enough I find I must be careful what I say to them as I know it will travel so tests my diplomatic skills sometimes!. I can understandyou worrying about trying cyclosporine again. Have you told your Rheumy your worries and asked if its ok for your long term health?. It might be worth seeing what he says and maybe put your mind at rest. I've done the same with mine about steroids because I don't like them being my main treatment because of side effects!. It must be weird for you now being on the other side of the fence ie a patient!. I had some retail therapy today, long overdue and very enjoyable!. Take care. X

  • Hi, My understanding is that most people are placed on an immunosuppressant of some form. They are very different and so are the mixtures with other meds. I would presume that the doctors would balance you very well considering your diagnosis.

    I can only speak from my own position. I have lupus and sjorgens with other problems such as hypo thyroid, CFS , RA, heart and brain interference. However, I have some experience with myeloma as my father has been diagnosed after a long investigation with blood problems, fatigue and symptoms very similar to mine. I pushed for various blood tests and he to has an auto immune condition. He is 85 and has probably had both for some time. He has been on a cocktail of meds which initially hit the myeloma first, now his bloods are stable, in that regard he remains on a immunesuppressent and pain meds and is reviewed. I can say on a positive note that although he went through a period where he struggled with his meds and side affects, considering his age, he is now doing very well. He battled with bouts of infection but now is back out in the garden, in small bursts. Good luck and keep us posted.

  • Thanks for taking the time to reply. I am sorry to hear about your dad being unwell but also very pleased that he seems to be enjoying life as best as possible. Thanks for the information in regard the immunosuppressant, I am trying to drop down .5 MG And then 1MG of the pred every 2 weeks . I am noticing a lot my aches and pains in my joints but the fatigue is no worse so that's something. I'm very anxious about going back on cyclosporine as I was so Poorly the last three times I've tried to go on it. My question is , but I don't know if there is an answer -once I have weaned off the pred will I be able to cope with just pain relief and hydrochlox or do I need to be on a immunosuppressant to halt the disease process ?

    The days when I feel "normal" I wish I could forget all about medication but those days are very few and far between these days - I hope you are feeling well and thanks again for your support ! X.

  • My experience is that we are all very different and that it is also dependent on whether you are in a flare. There is also the added complication of your myeloma status. I weaned off steroids slowly once and then once again. I'm on hydroxyl now and just upper the dose but after two years of being steroid free. Ive been on Tramadol, paracetamol top up and am now going on gabapentin. It is very hit an miss I'm afraid until you get the right mix for you. I wish I could be more helpful.

  • Hi JL1w,

    johare is very much right that it varies between individuals. The symptoms that people experience and the severity of their lupus will dictate whether immunosuppressants are needed or if hydroxychloroquine will be sufficient. Your doctors will monitor your symptoms and disease activity to best decide which course of treatment will be appropriate.

    Have you discussed your concerns about getting multiple infections when on cyclosporine? Perhaps they could try an different drug to see if the side effects are more manageable?

    If you would like more information about lupus and medications, we have a factsheet that you can read and download at

  • I have 2 immune suppresants, Tacrolimus (Prograf) & Mycophenalate Mofetil. The prednisolone I'm weaning off at a rate of 1mg less every 2 months, I'm about done now.@ by I was on 5mg daily and have been up to 60mgs daily when having problems with my eyes. I am thinking about increasing my Mycophenalate Mofetil after feeling the opposite when late last year I was so poorly with Shingles, flu, 4 face infections (erisipelas) & 4 was infections all within 2 months. I thought I was overly suppressed. With the prednisolone gone I will leave myself at greater risk from Lupus or put my transpant at risk. These meds are not very pleasant to have to take every day but necessary. I do hope you manage to get sorted and im very sorry to see you have cancer, is this as a result of the meds? Positive vibes being sent your way for recovery.

  • Thanks for taking the time to reply that is encouraging that you managed to nearly get off the prednisolone - I have no choice to try and persevere and get off pred due to the riske to my eyes ! I would like to think I can manage without going back on cyclosporine but worry the SLE and disease process will just escalate - I wish you well take care 😀

  • Thank you. I fear you may have to have the cyclosporine if you're not protecting yourself with steroids. Whoever looks after you for your Lupus will make that decision. My renal transplant doctor is the one who looks after my immune supression. Whilst I can do whatever I like regarding my meds, I do tend to listen to the expert who warns me that I could be leaving myself and my transplant at greater risk. My negative ANAS could become positive, I could lose my transplant.

  • Sorry to hear you are so unwell.

    I've been on 5 mg of prednisone for about 6 months now and started 10mg Methotrexate on Sunday evening. By Monday morning I had a bit of a sore throat which got worse yesterday so I've got to go for blood tests this morning to check my white blood cell count. Dr said I might have to come off it. (I also take hydroxychloroquine)

  • Thanks everyone for taking the time to reply I have made the decision to contact my Rheumy and ask him some more questions in regard my protection etc - I'll keep you all informed best wishes xx

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