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?

Has anyone here on immunosuppressants actually travelled to jaipur, Agra, Goa and Ranthampore and if so what did they do with regard to these two vaccines?

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 ❤️

im so anxious about this appointment and worried that the NHS rheumatologist won’t commence biologics or immunosuppressants as the private consultant wanted to do x any advice on how to navigate this would be appreciated x x

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

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

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?

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.

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.

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.

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.

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

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.

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.

Has anyone else had bowel issues, whilst being off immunosuppressants

Over the last 4 weeks I have had awful burning neuralgia type pain starting in my right eye socket and cheek then spreading to my scalp neck and now shoulders. My feet and whole body feels cold and getting spasms in my calf. It's almost as if I have been badly burnt. I have hashimotos and hyperthyroidism

Does anyone have information regarding the availability of Covid vaccinations this spring or later for individuals who are not immunosuppressed, over 75, or residing in care homes? Any information would be appreciated.