To ask for your experience of immunosuppression

[CrystalMazing]

I'm looking for any experience others have had on this medication.
I'm about to go to an appointment where I have to decide if I'm going to start the treatment. I'm 40 and have a life long severe skin condition which nothing else has helped. This is my last resort but the idea of weekly blood tests, kidney problems, blood pressure issues and mainly how to practically avoid anyone who is ill when I have school age children and work in an office, are making me think twice.
Your real experiences would help me to decide and would be much appreciated.

You dont mention the drug or your skin disease. If it's the ones I'm thinking of, it is very effective and works quickly. It's not generally a long term option though.

Is it methotrexate?

FYI I take it for psoriatic arthritis.... Amongst other drugs...!!

Sorry, should have said it's for atopic eczema and I have to choose between cyclosporine, methotrexate and another one beginning with A that I can't recall.

Azothipoprine?

I’m on that and infliximab so hugely immunosuppressed and tbh it makes little difference to my life. Way Better than living with active crohn’s disease.

The side effects are over inflated. I do have to have blood tests done every 4 weeks, but my local gps can do them. i don’t avoid people unless they are v Ill, and when my kids were younger I had to ask school to tell me if there were chicken Poznań outbreaks (there weren’t

Azathioprine??

My Mum has been on Methotrexate for years. She suffers no major side effects but when she gets a cold it takes her a long time to get over it.

Methotrexate doesn't affect your blood pressure or kidneys, can affect your liver though. They all need monitoring but it gets less frequent the longer you're on it

I’m on methotrexate and Humira, I have my bloods done monthly.

I work in the NHS (primary care) and despite being technically immunosuppressed I never get ill. I have to be cautious with shingles and serious infections such as measles but rarely come across serious infections.

The pros (huge improvement in my RA) far outweigh the cons.

My DH was on ciclosporin after an SCT (which of course, caused immunosuppression for some months). It made him feel very sick to start with but he did seem to get used to it. The pills were huge though, like horse pills! And the levels of the drug had to be checked and adjusted very frequently as were his liver and kidney function, blood counts etc etc.
We did avoid people for about 18 months, both pre and post transplant, especially children and places where we couldn't be sure about others eg cinemas, restaurants and had a small notice stuck to the front door near the doorbell, asking people with any sort of infection (including colds or sickness to stay away. It all seemed to work.

I have psoriasis and psoriatic arthritis and I take methotrexate.

I was worried at first about the list of side effects and the amount of monitoring but thankfully I've had few problems.

I inject 25ml each Friday. On Saturday I feel nauseous and very tired. That's all really. But, I am (for the first time in over 50yrs) 99.9% psoriasis free. The arthritis is much better overall but the results aren't as consistent. I still have days when every bit of my body hurts and I can't walk but those days are fewer so the day of feeling ropey is definitely worth it for me.

I took cyclosporine about 20yrs ago. My skin went from bad to horrendous and it took almost a year to get back to (my) normal.

Oh I meant to say I was monitored weekly for 6 months, then monthly for 6 months and am now down to 6 monthly appointments with the consultant and 3 monthly blood tests.

I believe my mum has been on long term immunosuppressants.

Steroids that help fibromyalgia. Would that be the same thing?

worth a try but not guaranteed to work. my son had a liver transplant and is on 2 immunosuppressants. his atopic eczema is awful which doctors are always surprised about as he is taking the drugs they would prescribe.

Another one with RA here, don’t worry too much about the side effects as a poster on the Heath board said, “Just take the tablets and get on with your life.” A read that before I started my treatments and it’s true. Good luck

I was on Azathioprine long term, and then switched to 6MP. I worked in a hospital, my consultant didn’t think there were any additional risks of catching anything. I don’t recall catching any more bugs than people I worked with who weren’t on immune suppressants.

I had Ciclosporin as well, I don’t recommend that as for me the side effects were awful. You need the Ciclo levels checking regularly as it’s nephrotoxic. With Aza after the first 6-8 weeks bloods can move to every three months, there’s something in BNF about more frequent testing having no clinical benefit, or there was anyway, it’s a while since I checked.

My son is on methotrexate for psoriasis. He’s in uni. Hasn’t been sick since he started it 2 years ago. Does get regular bloods but every 3 months now, was every month. Main issues for him, he can only have 2-3 drinks a week actually rarely drinks now because it’s easier, and it’s not working brilliantly. He’s about 60% better but not there fully so I think he’s switching to stelara after the summer

I've been on cyclosporine and methetraxte, I found the side effects of methertexate awful, extreme tiredness, sickness. Cyclosporine is only a short term use drug. I am currently immune suppressed by way of injections, which have different ingredients to the previous tablets. As for managing illness I don't seem to get ill anymore than anybody else. In terms of the kidney, liver side of things regular blood tests have never showed up any issues.
I'm also being treated for skin problems and the benefits far out way any of the cons.

I took methotrexate for psoriasis for a while. It was fine, I didn’t get sick more than usual, just felt a bit tired the first couple of days after each tablet (it was a weekly dose). It never completely resolved the psoriasis though unfortunately.

I'm probably about to be in the same boat as you, OP. After suffering with atopic dermatitis my whole 26 years I was only referred to a dermatologist last year, and only had a patch test test 2weeks ago. No reaction at all.
The nurse took my blood in preparation for what she thinks is the inevitable use of immunosuppressants. Anxious but hopeful!

Ciclosporin, azothiaprine both awful for me. Methotrexate is fine and works.

I've been on immunosuppressants for 20yrs.
I have RA and am currently on Methotrexate & Humira however I've been on various ones over the years.

I haven't had too many problems with them especially with regards to illness.
You do need to be careful and don't sit on infections and hope they will get better on their own as otherwise you can make yourself worse. So going to see the GP with a nasty cough/earache etc earlier than a fully healthy adult. I'm rubbish for this (I hate going to the gp) so have ended up on antibiotics a few times.

The Humira seems to make me more susceptible to sinus infections too.
I had a brilliant GP when I had DS1 and she suggested that I got him immunised for Chicken Pox as it could potentially serious for me if I caught it from him, it was done on the NHS because of this, DS2 was also immunised for it (although I had a different crap GP so had to argue for it).

However I have small kids and have survived despite living with germ factories and a Dr husband and the drugs have helped me a lot.

I was tried on Azothiaprine and it gave me what the manufacturers called "mild flu-like symptoms" and I called the worst case of flu I've ever had. It's not nice if it disagrees with you but if you can take it - it's great.

You get used to the monitoring blood tests it usually only starts off weekly and then if you are stable on it, they get spaced out - I'm on 3month monitoring at the moment.
When I started all this I hated needles I'm now very blasé about it which is good as I now inject the Humira myself.

DD1 was on azathioprine as a toddler for eczema and it was a miracle. Her skin cleared up completely within weeks and stayed that way the whole time. She's off it 5 years now and her skin has never gone back to as bad as it was before. It completely changed our lives.

She had a few of mild stomach bugs (where she would vomit for a couple of hours and then was fine) and shingles once but those were the only side effects.