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.

I am on azathioprine and Humira for Crohn’s. I’ve had very few side effects, but I did recently get pneumonia and have to spend five days in hospital, which the doctors thought was the result of being immunosuppressed. I’d still rather be on the medication though as it’s brilliant at controlling my symptoms.

My DM was on methotrexate - now off it.

She just got on with the monitoring, was v pleased it made her illness (Giant Cell Arteritis) better as that was ruining her life.

She didn't do any especial avoiding anyone.

When she did get an infection she needed to see GP ASAP and be treated instead of think it might be a mild bug and sit it out like she used to, that was the only difference. Being my DM, she learned this the hard way by ending up in hospital with serious sepsis but she is also elderly and has quite complex health problems as well.

Thanks for the replies. All very useful and have given me more to think about.

I'm on Injectable methotrexate. Bloody wonder drug. Made such a massive difference to my arthritis. Marvellous. Not sick more than usual.

I was really worried before starting though but it's been a life changer

Can affect fertility in my case (male) if that is an issue

I currently take sulfasalazine and methotrexate and have taken azathioprine in the past. Not affecting me too badly apart from the nausea and headaches the day after I take the methotrexate.

They are talking about having to give me an immunoglobulin infusion if I get any infections though because my levels are very low.

They've told me to be careful without being excessive so wash hands and be careful with what I eat. Doesn't help when you bump into a child in the supermarket covered in chicken pox while I am working as happened this week!!

Please can I warn anyone considering taking methotrexate to consider not only the effects on your kidneys and liver (low but possible) but also the effects on your lungs. My darling DM was on 20mg+ methotrexate for years for rheumatoid arthritis and no-one ever considered the effects on her lungs until this year when she was admitted to hospital for the 3rd time in 18 months with a diagnosis of aspiration pneumonia of unknown origin and then collapsed and we were told she probably had pulmonary fibrosis. This was not a considered diagnosis but a last gasp grasp at what could be causing her symptoms and as a reason for discontinuing treatment following a sudden collapse in hospital.

It tuned out she had influenza A and pneumococcal pneumonia that had been under treated in ‘favour’ of easier (and, ultimately, incorrect) diagnosies- and led to her untimely passing!!

Please don’t consider methotrexate unless the potential side effects are fully explained and possible negative side effects are discussed by a consultant in a hospital setting!!

Sorry for your loss @remember

I was given a chest xray and blood tests in preparation for the appointment and it will be overseen by a consultant.

@topcat the baby shop is well and truly closed here but thanks for the info

I'm on azathioprine and can't contribute much beyond what's above. It's helped me get on with my life rather than suffer with Crohn's continually. But bear in mind, you might still get occasional flare-ups even if it generally controls things well.

I have RA and self inject once a week. I don't get colds. I have slight nausea and fatigue the day after. I have a monthly blood test. No thinning hair.

I've been on a few immunosuppressants for RA, currently Abatacept. I didn't do well on some of them and they didn't work that well for me but the Abatacept is the best of the lot. I get things like serious chest infections (but I also have asthma,) shingles, mouth ulcers, etc. and have had flu twice, once that sent me to hospital.

Im on methotrexate, sulfasalazine, folate and plaquenil for my RA. I was on leflunemide but it dropped my WBC to basically nothing so I was certainly immunosuppressed then. I work in a hospital and have been sick a bit this winter (bronchitis, laryngitis, sinusitis) but since coming off the leflunomide ive been a lot better.

I’ve been on azathiaprine for 15 years - not experienced any side effects or increases in illness - blood tests every three months to keep an eye on things. Everyone is different though so hope you find what works for you

Oooh is it eczema OP? I'm on ciclosporin forine as literally nothing else helped and it got so bad I was rushed to A+E with sepsis.

My skin is now completely clear! The blood tests are every six weeks which is fine, but agree what a PP said - the tablets are bloody massive! And really hard to get out of the blister pack

But I have skin clear as anything now

For mine that should say

Oh and I was told not to father any children and to avoid prolonged sun exposure - bit difficult in this weather!

I take Methotrexate (+ folate) and after about 18 months also started taking a biologic, in my case, Simponee for RA. I am probably fortunate in that after taking it for over 5 years, I have only experience the "Methotrexate fog" a few time. It doesn't affect my blood pressure.

I started out with monthly blood tests, and showed no ill effects, and now only have a blood test every three months. I think the blood tests are mainly for liver function, although they do check for other things.

Quite often the side effects being mentioned apply to people taking massive doses for chemotherapy. My pharmacist apologised because he wrongly gave me the info sheets for people taking in for chemotherapy. The info sheets for doses used for RA, psoriatic arthritis, etc are are MUCH less frightening. That being said, I do have a flu shot each year.

I've been on methotrexate and high dose steroids since last October for autoimmune disease- Vasculitis
Had to have chest x ray before starting Methotrexate and get my bloods checked monthly
Have shared care between rheumatologist at hospital and my GP
Find I'm very tired after methotrexate, and need to rest, so have had to change my working week( can only work Mon-wed)...take folic acid on Tuesday ( you have to take this day before methotrexate) then take 20mg methotrexate on Wednesday evening ( lessens the yucky feeling if I take it at night)
Most of the time I'm fine but sometimes I get cramps upset stomach and diarrhoea, so have to take loperamide .have sometimes had a more sensitive mouth and needed mouthwash to ease symptoms
I work in hospital and haven't had any problems with any other illnesses,but I do have flu jab every year

I was on azathioprine for another autoimmune condition and it cleared my (admittedly mild) eczema up completely. I've been off it for 10 years and the eczema has not returned. I came off it because it gave me debilitating fatigue, but it worked to get my disease under control, and my understanding is that the fatigue is relatively rare.

@sneaky yeah it's eczema and it's the bane if my life

To anyone who has been one a few different types, is it quite easy to tell when the meds are working and switch to another type if they aren't? I read that you can tell if cyclosporine is going to work within a few days so i might go for that one first

@snug we are basically on the same timeline. Do you have a drug appointment yet? Where in the country are you?

Hi op, I'm on cosentyx, injection every 4 weeks, for RA, I take a multitude of vitamins and minerals and they keep my immune system up to normal levels. I have blood tests and chest x ray every 3 months. I have two young dc and don't tend to catch the bugs they do. The drug has literally changed life,minimal stiffness and pain now.

I was on benepali for six months and that made me feel horrendous, like I was in a fog.

Good luck 🤞🏻, the benefits for me out weighed the negative.

Psoriatic arthritis here too - people's experience varies but by and large, if these medications work for you, they're magical if the difference they make to your quality of life.