Methotrixate, ciclosporin, cyclophosphamide, or sulfasalazine????

Can anyone help with the above medications? Im reluctant to go on methotrixate cos I like my wine!!!!!!!!!!! Have been on hydroxychloroquinne for 6 months but didn't do anything for me, am back on steriods again for 6 weeks then further bloods and back to rheumy in 3 months. Thank you for your input and advise. xx

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  • Hi becky

    Cyclophosamide is one of the stronger drugs, used as iv infusion where there is active kidney disease. I'm not sure if ciclosporin is the same. Although it's mentioned on the lupus uk website, I've never come across a mention of anyone on this for lupus. But if they are out there, they'll let you know.

    Again, I've never come across sulphasalazine as a lupus med. But as all our drugs are 'borrowed' from other diseases such as RA, it could be a possibility. Each rheumy seems to have their favorites.

    The ones you haven't listed, that are commonly used to treat lupus, are azathioprine & mycophenoloate. I've been & on both of those & there was no mention of avoiding alcohol. Although I have to anyway, because even small amounts make me very poorly.

    I would strongly recommend that you go with what your rheumy feels is best for you. Even if it means giving up a few glasses of plonk. I know it is really unfair, because we have to give up so much else in our lives because of lupus. But maybe if you can get your illnesses under control, you will be in a position where you need little or no meds in the future.

    It seems to be a case of trail & error with our meds, so you might find it takes a while to find what that suits you best.

    Very best wishes, & have a lovely week end. X

  • Hi I am staring on metatrexate tomorrow ,like you enjoy a glass of wine , but as Roobard says our health comes first Being on steroids limits alcohol anyway and with lupus it is just another thing we have to avoid Caffeine is not good either for our illness and can interact with methotrexate so if you can go decaf I have been on hydroxychlorequine for years and when I come off it for a break I notice the diff Funny how we all react diff to the meds .I am not looking forward to starting the meth but, hopefully I won't have any side effects and will feel better .take care and Asda do a lovely alcohol free grape juice x

  • Hi you only take meth once a week so I was told to take it on a Monday where I was less likely to be drinking. Oops I have had alcohol on those days and it didn't make any difference a glass won't hurt test it out but if its only a glass your missing for one day it's not likely to put a dint in your social life. Xx

  • Hi I would try and avoid cyclosporine the are about an inch and a half long and stink. When I was on them I had to take 7 a day. They were really hard to swallow and if you ever get nausea you can retch just from the smell alone. It's an immune suppressant but I was on them for a year and felt no better. I am now on mycophenolate mofetil it has really helped and I only have to take 4 a day broken into two doses. I agree it's hit and miss as to which medication will work but I'd try that one last if you find nothing more suitable

  • Thank you all for your replies. xx

  • Took my meth yesterday and so far I have no side effects slight headache but that's normal so I shan't count that On the alcohol debate I'm sure when you actually drink it ,It has no bad effect on you ,but on research it can damage the kidneys My rheumy said only 2units a week ,but the leaflet from the pharmacist says 4 so I suppose that gives a little extra leeway .Its always the same when we are told we can't have we want Human Failing well mine anyway .Take care

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