Treatment options, immunosuppressants..any ideas,... - LUPUS UK

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Treatment options, immunosuppressants..any ideas, suggestions or experiences pls....

Sara_A profile image
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Hi, I have tried azathioprine twice with no luck as my liver didnt like it and now I'm on mycophenolate 4 tablets daily, tried 5 but it dropped my immune system too low so 4 is the maximum I can tolerate but my disease just isnt well enough controlled and I'm having too much joint pain and general fatigue and just generally feeling rubbish.

I'm seeing my rheum soon and have discussed methotrexate previously and he rang me 8pm the other night and we discussed belimumab (I asked about it if it was an option for me) hes going to look into it for when he sees me in 10 days. Anyone got any suggestions or experiences of meds that they have tried or are on that are working well for them. I did ask him if I could stay on the myco and add in methotrexate injections but he said that wasnt really a known combination that was used. I was on hydroxychloroquine for 10yrs until recently had to stop due to poss eye damage. Waiting to see still if it has caused damage or if the findings were incidental! Great another problem to add to the long list!

I'm already on steroids have been for about 10yrs non stop and getting bigger by the second!

Take zomorph twice daily for joint pain amongst a million other things but need something for the disease.

Any suggestions v welcome pls to take to discuss with my rheum

Thanks!!

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KatieRL profile image
KatieRL

Hi Sara_A, Trying to find the right med combination has always been a problem for me as my Lupus has made me allergic to so many things. I've done well on Mycophenolate (250mg) together with low dose steroids (5mg) and I was OK when I was on Azothioprine, When you go and see your rheumy you may want to discuss the possibility of Acupuncture as this worked very well for my awful joint pains. You cant do this without the OK of your rheumy as it is not always possible for Lupus patients, I wish you well for 2020 xxxx

I don't know if you have attempted any dietary approaches.

I did quite a lot of different drugs before I began to look more closely at my diet.

My consultants weren't convinced that dietary changes would make a difference but I believe they have been beneficial for me.

Actual or placebo, I don't know. But if something has a positive outcome I don't see that it matters.

Nightshade vegetables are often mentioned in connection with pain. But so is sugar and flour.

Maybe just keep a strict food diary and look for any trends if you don't want to make any changes without an evidence base.

Possible nutritional deficiencies can also cause pain so ensure you are eating a well balanced diet.

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