Immunosuppressive class drugs, help!

[grumpygut]

Well, got labs and pathology back and it's 99% certain I have Crohn's disease.
The nurse I talked to is asking me these questions on TB test, and hepatitis B, and I'm thinking, "they're priming me for the high-powered immunosuppresive drugs."

This kind of freaks me out. My immune system will be shot. I just got over breast cancer. I've only been alive one year post cancer treatment, and now they're going to kill off my immune system. Hello lymphoma!

Can a few of you give me your experience with the immunosuppressive drugs? Side effects, energy levels, anything you can tell me? What is life like with no immune system? Can you exercise at all? I know for cancer patients, exercise throughout all phases of treatment, even chemotherapy, is beneficial.

 

[Danico85]

Hi there. Ive been on immunosupressive drugs for as long as i can remember. i take them every day, im 27 just now. i get a blood test every month or 2 months and so far ive not contracted any other major illness or infection. Even with a lower immune system ive still managed to fight off bad colds, coughs and the flu. I dont have any experience with chemotherapy so i dont know how it would react with you so soon after having cancer. You will loose some energy yes and feel more lethargic but its not to an extent that its life changing, i tent to go for a nap after work and that helps. So in the whole i wouldnt say they have been a bad drug. if it helps your crohns symptoms and doesnt effect your cancer cells then id say you will probably be ok. They dont completely shut down your immune system, they just stop it working on over-drive all the time.
i wish you the best of luck

 

[Starlight]

I've been on remicade for almost 7 years and before that multiple other different types of medicine. Remicade.. I don't have any side effects other than the day of and a day or two after.

Remicade is a form of chemotherapy I think, just not the same obviously as for cancer. Immune system wise, you will obviously be immune compromised with any immunosuppressant drug, with you having breast cancer before and I'd imagine being on even stronger immunosuppressive drugs, I'm not sure how you'd react to it.

I'd just be extra cautious, wash your hands a lot. Carry hand sanitizer, and if you know someone is sick, try to avoid getting to near. For me, I don't really find I get sicker any easier with a low immune system, but when i do get sick, it kicks my butt. My last cold took me a month to get over.

Good luck with everything!

 

[alex_chris]

This kind of freaks me out. My immune system will be shot. I just got over breast cancer. I've only been alive one year post cancer treatment, and now they're going to kill off my immune system. Hello lymphoma!

I am truly sorry you are going through this after cancer treatment. For immunosuppressive treatment (aza or 6mp) you have to understand that the principal idea is to lower your white blood cell count, but just to the lower range of the normal range and keep it there. If you have inflammation during active times of Crohn's your white blood cell count can be very high and above the normal range, so basically what the drugs actually do is keeping it in the normql range.

Having said that, I know the usual side effects mentioned about aza and 6mp (on the description of the drug) is that you easier get infections, colds etc. For me, that just was never true, when I am in remission I hardly ever get any cold or virus infection even if people around me do.

Can a few of you give me your experience with the immunosuppressive drugs? Side effects, energy levels, anything you can tell me? What is life like with no immune system? Can you exercise at all? I know for cancer patients, exercise throughout all phases of treatment, even chemotherapy, is beneficial.

It's different for most people. 10-20% of the people have adverse reactions early on and stop taking it. For the rest, the biggest thing to watch for is a detrimental effect on the liver in rare cases - that is why you do regular blood test (every 8 weeks after more frequent ones initially). Recent studies also say that immunosuppressives slightly increase the risk of cancer, although that was inconclusive until a few years ago... But we are not talking a big increase, the occassional smoke is probably much worse.

So anyway, it's not "life without an immune system", it's life with an immune system that isn't constantly overreacting but stays in the normal range (e.g. Even on immunosuppressives, during inflammation your white blood cell count will shoot up, but not to 15 but just to 7 from the target 4-5 range).

As to exercise, I am a big believer in managing Crohn's with endurance sport. I am exercising 3-4 times at least 60min at a time but often more. I go running, rowing, general work out in a fitness club, tennis, skiing, football etc. Whenever I didn't go exercising in the past my body weight dropped, I ended up with deficiencies and ultimately an active Crohn's. Make sure you are taking supplements for Crohn's though, especially when exercising - your body is ot taking in enough vitamins and things like magnesium, zinc, potassium, iron etc.

In any event, it's good to go for a drug that helps you manage Crohn's long term. Just be careful that it alone can't help that much, eating the right thing, stress relief, sport, watching out for deficiencies etc. are equally important.

All the best to you,
A