Tips and advice on living with immunosuppression please

Hi everyone I've been unwell for a couple of months with a bad flare following a sinus infection from the end of October through to beginning of January.

Following GP visits and a phone call to the Rheumatology nurse, I'm due to start Azathioprine, had the first blood test yesterday. I've been putting it off since August last year thinking I could cope but the last flare was so frightening, new symptoms and more pain than I've ever had 😫.

I wondered if anyone can give me some tips and advice on life with immunosuppression. I've been reading some information regarding keeping infection to a minimum and would appreciate real life experiences (no horror stories please as anxiety has stopped me taking it before and I wouldn't want to back out again).

Will I be able to go to the cinema, use public transport, what happens if my family are ill, will a cold require antibiotics? Things like that.

Thanks 😊

[GlasgowHen]

Hi happy43, I’m sure you will get lots of replies but this is my experience anyway which I hope helps a little.

I’ve been on immunosuppressants for years now and I wouldn’t say I’ve had an excessive amount of viral or bacterial infections.

It’s best just to take sensible precautions like hand washing. You can still go to the cinema ( I go weekly) and use public transport etc. Colds definitely don’t need antibiotics unless you are unfortunate enough to get a secondary infection.

I work with small children and I’m just careful with hand washing and I always ask that if they are unwell to cancel the appointment and see me when better! My colleagues are also great at stepping in if a situation is a bit risky like with a recent outbreak of whooping cough.

Your bloods will be closely monitored for a fall in white blood cells which would leave you very susceptible to infection. Usually if that happens they will stop the immunosuppressant to allow your wbc to recover.

Good luck, hope the azathioprine works for you

[Hidden in reply to GlasgowHen]

Hi thanks for your reassuring reply, good to hear it's not affected you too much. I hope it works for me too 😊

[svfarmer]

Hi I’m also on immunosuppression for last 3 years, I never pick up colds but then I never have, I still get flaire ups of my lupus but don’t worry to much you will be able to live a normal life just take precautions when people around you are ill. Good luck Sam x

[Hidden in reply to svfarmer]

Hi I've never had trouble with colds either just sinus infections. Are the flare ups less severe now you are on immunosuppression?

[svfarmer in reply to Hidden]

Oh yes at the beginning when I was first diagnosed I was in so much pain in my hands and feet it was dreadful, thankfully I’ve not been that amount of pain since- the flaire ups now make me so tired , think that’s the worst of it, I can still get pain, at the moment I’m not in a flaire up but my shoulder and thumbs are very painful - that’s the thing with Lupus you never no from one day to another what you are going to be like xx

[Hidden in reply to svfarmer]

Yes I know that feeling! I'm glad things have improved for you. Thanks for letting me know x

[KatieRL]

I was on Aza for Lupus too and I got on with it very well. My SLE has given me allergies to so many tablets it was a relief to find something that worked well for me. I took this med for at least 10yrs. My needs have now changed and I take Cellcept (mycophenolate) and Sirrolimus. We are all different and what works for one doesn’t do it for someone else. There’s no doubt that immunosuppressants are not the easiest drugs to take but they do a fantastic job for me. I really hope all goes well for you.

[Hidden in reply to KatieRL]

Hi thanks for your reply, I'm so glad you have had a positive experience with Azathioprine. I also have developed intolerance to some medications since this all began and food intolerances aswell 🤷‍♀️. I hope you continue to feel better.

😊

[WinterSwimmer]

I just carry on as usual. The aim of immune suppression is to keep your white blood count at the lowest end of normal. They will do regular blood tests and if it gets too low they will advise you.

I've been told all kinds of things over the years - including advice not to swim in swimming pools or open water, and I just ignore 99% of it. I am now being careful about not catching viral infections because they are a trigger for me.

But my advice would be to not worry about it too much and wait and see what happens... I never got ill much before lupus and I still don't get ill very much.

[Hidden in reply to WinterSwimmer]

Thank you 😊

[PatMat]

I am on mycophenolate, another immunosuppressant, for Antisynthetase Syndrome. Some practical tips - I use Vicks First Defence Nasal spray before I go out anywhere where there will be crowds (shopping, restaurants, flying etc). I also use NasalGuard Cold & Flu block round the rim of each nostril. It’s a tiny tube and expensive but lasts ages. I use hand sanitizer and/or hand wipes after shopping etc (and each time I get back in my car). I use FESS frequent flyer nasal spray at night as First Defence dries things up a bit. It’s from Australia so I get a friend in Perth to send it. When flying I clean down the arm rest, tray etc with Dettol wipes. This may all sound over the top, but it works for me and it’s second nature now. I have managed two long haul trips to Australia (10 flights in all) and several to our son in Amsterdam, no issues. Also cinema and theatre trips too, and public loos. I avoid anyone with coughs, viruses, bugs etc and also try to remind my husband to use hand wipes and nasal spray too. What he catches, he can pass on to me, and I won’t be happy! He goes into the spare room as soon as he starts to feel unwell. The last cough and sore throat I had was from him, and took me nearly six weeks to recover from it - he forgot to tell me he had been coughing and sneezing in a meeting all morning, I had to collect him as his car was in for service , and I didn’t use First Defence because I was “only going down the road”...🙄

[Hidden in reply to PatMat]

Thank you, lots of helpful advice 😊

[WinterSwimmer in reply to PatMat]

Wow. Interested to hear the steps others have to deal with, and realise how lucky I am. I’m taking 2g of Cellcept (mycophenoloate) and 400mg hydroxychloroquine, but I am seriously slack about all this... mostly recently swimming in the local harbour on new year’s eve I was scratched by a seal pup in the water (this was among the most magical experiences of my life, I should mention) and in spite of everyone else’s panic, I was fine. Reading this makes me wonder if I am just foolhardy, especially as my kidney function is now quite low, and antibiotics are a last ditch option... .

[Hidden in reply to WinterSwimmer]

I've read about swimming in open water and public baths. What an amazing thing to see a seal pup! Glad you were ok 😊

[Bebe76]

You should be monitored regularly with full blood count and liver function tests when taking azathioprine. I've been on MMF for many years now, and have had one scare when my WBC dropped very low. Most of the time my WBC is at the lower end of the normal range. My doctor was not sure if I had a virus (I did not feel ill) or if it was due to the meds. I find the best way to prevent illness is the usual recommended things: wash your hands frequently, avoid touching your eyes/mouth/nose, avoid close contact with people who are ill (especially anyone with chicken pox if you haven't had it).