Experiences with

Immunosuppressants

hi Looking for some advice regarding reducing immune suppressants and personal experiences. my OH is due to see his consultant in 3 weeks time and at the last appointment 1 year ago he mentioned that if he was still stable he would look at slowly reducing his MMF. he has had GPA vasculitis for

perindopril, but read inside it may interact with certain immunosuppressants!? I’m on benepali! Are anyone else on the same?

I'm also on immunosuppressants which I heard could interact negatively. If anyone takes immunosuppressants and anti-psychotics I'd love to hear your experience ❤️

Any asthma patient taking immunosuppressants for their asthma including but not exclusively methotrexate, ciclosporin.

Unfortunately I’m on immunosuppressants for so I’m thinking this could be why my recovery hasn’t been as straight forwards as others. Blimey this has been a roller coaster ride for sure. Has anyone got any advice how to deal with the emotional side of recovery?

It is a big decision to take immunosuppressants because of what can go wrong. But, yes I know not taking any medication is a very bad decision. Thank you Bekah

My respiratory wants me on immunosuppressants asap, rheumatologist is willing to trail me for 6 months and if I progress remain on them even though he is adamant this is not lupus! I feel I’m never going to find out correct cause of my effusions and rheumatologist isn’t a very nice man to talk to.

All their literature pointed to immunosuppressants medication which I’m not on. I am pleased they are being vigilant as obviously the most vulnerable need the vaccination.

I know that immunosuppressants are not skin friendly but the skin on the lower parts of my arms and hands is horrible!!! It is discolored and scaly and it even gets really dark at times and then at other times it’s lighter but always there. I can’t even find picture of anything simalar anywhere.

How do you fight infection when you're filling your body with immunosuppressants plus Actemra? This morning I took just 40mg...never thought I would say [i]just 40mg![/i] I can only describe how I feel as a bit strange...tired and a bit spacey.

The immunosuppressants I have been taking are Tacrolimus and Myfortic. The transplant center finally honored my request to switch to Myfortic last July after repeated requests to change from Mycophenolate Motifil. However, the switch has not made much of a difference.

Has anyone else got any experience I'm so desperate to feel better I'm on triple immunosuppressants and loads more meds too.

For those with ANCA associated vasculitis and renal involvement in the UK Clinicians are worried about overtreating patients and adding side effects of long term use of immunosuppressants to the ilness burden.

I have been on different immunosuppressants since 2019 and read these are linked to melanoma in some patients. I also for the first time had gel nails in the last 2 Years and exposed my hands to UV light. My nails were pretty poor and this helped to strenghten them.

They have suggested immunosuppressants but they have now decided not to do this as I keep getting multiple infections. So basically I just get left. I get seen once a year or once every 2 years where they do bloods and that is that. Meanwhile I get worse and worse.

Has anyone else had bowel issues, whilst being off immunosuppressants

All but one of the dozen patients (92%) achieved complete remission based on the DORIS criteria, defined as an SLEDAI-2K score of zero, a PGA score of less than 0.5, and the use of no glucocorticoids and no immunosuppressants and/or biologic agents.

I've always been a bit of worrier when it comes to these more potent immunosuppressants. Basically nothing else was controlling the flares, tried aza, colchicine, plaquenil, methotrexate, mercaptopurine, humira and probably others that I've forgotten.

Other immunosuppressants are ineffective. - Janus kinase inhibitors, e.g. ruxolitinib, can be used to manage symptoms when steroids are reduced.

https://www.newscientist.com/article/dn20584-chinese-medicine-offers-new-parkinsons-treatments/ Early this year, 115 people with Parkinson’s were given a combination of traditional Chinese medical herbs, including gou teng, or a placebo for 13 weeks. At the end of the study, volunteers who had taken