immune suppressing drugs

[anniemae]

For those of you on drugs that suppress your immune system, or if you or someone you know is immunocompromised, how do you keep healthy?

And does it mean you will be sick more often, or that when you are sick that it will be worse than say, a common cold?

 

[minkydog]

My husband has been on prednisone and methotrexate for about 7 years due to severe lung disease. The drugs suppress his immune system which makes him susceptible to pretty much everything. Therefore, DH is scrupulous about hand-washing. He carries hand sanitizer with him everywhere. He gets his flu shot and the rest ofus get ours, too. When he's feeling under the weather, he makes time for rest--he has learned the hard way not to try to power through the fatigue.

One thing we've learned that they might not tell you is that when you're taking these drugs you may not run fevers--fever is produced in response to an attack on the immune system, the system DH no longer has. Therefore, if he runs even a little fever, 99.4, WITH other respiratory symptoms, he MUST go to the doctor. Sickest he's ever been was about 8 years ago, sick with a sinus infection. Woke up with a temp of 100. No big deal, right? Except he was so sick he could hardly lift his head. I thought, something isn't adding up. I finally just forced him to go to the ER with me. Good thing I did. Within 4 hours he was in septic shock He very nearly died! All from a little sinus infection. Well, now we know better and we don't take chances.

Part of keeping DH healthy is keeping the kids healthy. I've never been one to go to the doctor or take the kids. I'm a peds RN; I can fix almost anything with some tylenol, tape and a few tongue depressors. But since they're little germ vectors I run them up to the doctor a little quicker. If we're dealing with something contagious, like strep throat or flu, it can be very very bad for DH.The kids HAVE to be treated quickly to keep him from getting sick. It's not a big deal and our peds understands.

 

[Aimeedyan]

You know, I've been on them for several years now (about 6, I guess) and I haven't noticed any additional issues with illness but I do take precautions.

I wash my hands religiously, but I am not a fan of the antibac solutions unless an emergency situation. Soap and water is always preferable.

I attempt to get enough sleep and eat well.

I attempt (and fail miserably!) to keep my stress under control.

I avoid situations where illness is prevelant IF my disease is flaring, since my body's immune system is already working overtime. For instance, I will not visit hospitals (part of my job) during those times and let a colleague do it.

I try to stay home if I'm sick - and HIGHLY suggest that colleagues do that, too! It's easy for some people to just work through it but for others, it can be bad news if they bring their highly contagious self to work alongside someone with a weakened immune system.

I work with the public on a regular basis and I think that helps, too. You know how teachers are usually sick the first year of teaching and then seem to have a better immune system after that? I think that has happened some with me. I'm exposed to a lot but don't seem to come down with as much as someone who might rarely interact with people. Just my uneducated guess.

Remember what just because the drug is suppressing your natural immune system, it hasn't killed it completely. Your body CAN still fight off things. Talk with your doctor about the drugs you are on and what things they'd like you to do. For some people, they are on drugs that require them to be isolated much of the time while others stay on them longterm and have healthy (normal) lifestyles among the public.

ETA: When I do get sick, I take it more seriously. I used to wait out just about any illness but now I will give my body a few days (for instance, if I think it's just a cold) and if things don't improve with OTC meds I will see the doc for something more. Things can spiral out of control, thus affecting my underlying disease. Learned that the hard way!

 

[LBAK]

I also have been on prednisone and methotrexate for about 10 years due to RA. Thank goodness I have not had any problems. I get colds, sinus infections, ear infections, etc. but I have been very lucky. I teach 4 year olds and have for years so I am ectemely lucky. I do get my flu and pneumonia shots though.

 

[HonnyDipp]

I was diagnosed with Polymyositis (muscle disease) back in 2006. Basically my immune system attacked my muscles and forced them to immediately break down. I was put on high doses of prednisone and Methotrexate injections every Thursday. The prednisone was tappered down until I was able to come completely off of it about a year and a half ago (knock on wood) but I'm still on the methotrexate but I have switched to pill form. The side effects were harsh. The stomach problems reminded me of morning sickness. I spent over a year in bed because I was simply unable to walk. Now, I'M WALKING AGAIN! Slowly, but I'm getting there. I've noticed I get colds, sinus & ear infections more easily, so I'm always doing what I can to prevent that. Washing my hands, getting the flu shot etc. I'm still loosing the weight that the prednisone put on me, but other then that (loosing the moon face!), I'm adjusting the best I can!

 

[merryweather20]

I'm on a ton of methotrexate and I don't even remeber reading anything about that in my literature. I can honestly say that when I was on methotrexate alone and in combination with prednisone, I got no more sick then I did previously.

In addition to the methotrexate, I am now on biologics. I can't get the flu shot anymore either. I would say I get sick less often then before. My theory is that I'm not so completely drained from my illness that my body is strong enough to hold up until whats left of my immune system can take care of it. I used to get a nasty cold every winter that would last well into the spring. The first year I didn't get it was te first year I was on the biologics.

I believe strongly in the positive power of fruits and vegetables, especially orange juice. I'm careful where I eat, and I never do sushi. Hand sanitizer is good for a quick in between in an emergency, but what really counts is washing your hands with soap and water, and never touching your face.

As odd as it sounds, I'm so used to being sick that it has to get pretty serious before it will register on my radar. As good as the biologics work I still have flare ups, and I know to stay in and take it easy when that happens, which probably works to nip some of the bugs in the bud.

 

[Anne MN]

If you are talking about the ones mentioned previously- they do weaken your immune system.
If you are talking about the true immune supressive drugs (the ones people take for life after an organ transplant), I have a DD who takes them. most of what has been said is true. she is more likely to catch everything because her white cell count is kept very low. she get's a flu shot and has hand sanitizer with her. she also doesn't run a temp when she doesn't feel well, she just get's taken to the dr. the danger with her is that if her white count kicks in to fight off an infection, it will attack her new organ and that is a whole different subject

 

[bumbershoot]

I have a friend who was on prednisone off and on for years, because of autoimmune hepatitis. She was on such a high dose that AFTER she had a liver transplant, the level of immunosuppressants she takes is actually less than what she was on before.

From her experience...

She would rarely get just a cold. Her immune system was pushed down so it wouldn't respond. "Being sick" is the symptoms of the immune system fighting things off...blowing the nose, coughing stuff up, because the body is battling it and is creating waste products...those are positive signs. She didn't do those things when her body encountered a normal germ.

I should mention that b/c she didn't react...she was a serious "Typhoid Mary". She would spread stuff from work to friends and back again. When she was on the strongest doses, I was getting sick all the time, because the stuff from her work would jump to me when she would visit. Awful awful.

When she DID react, it was bad. If a germ was strong enough to cause an immune reaction in her, it was nearly the plague.

Before her transplant, during the few years she spent on, off, and on the list (she got better for a few years after her divorce), she had to follow their guidelines, which meant near constant vaccines. They'd jab her, test for immunity. Would find none. Jab her again. etc etc. I kept wanting to go with her to appointments to ask them why on EARTH they were expecting an immune response when they had her on so many immune suppressing drugs. OF COURSE she wasn't responding. (so she, with a LIVER problem, got alllll of the extra gunk in the vaccines, all the preservatives and metals and all of that, with NONE of the supposed benefits...makes no sense!) She never let me go, because she had to toe the line with the program. But I felt bad for her!

Now she has a new liver and more of an immune system, since the steroids are lower than they were before (which is just so disturbing, but she was really really sick in that last year or two). She'll catch some normal colds. Her body has changed, too...all very in line with the more interesting aspects of organ transplant (different food likes and dislikes, etc), and some just a sign of a functioning body (she sweats now...never had before). And catching the occasional cold is one of them.

 

[disfan07]

I am currently on methotrexate. BUT, in addition to the Methotrexate, I also have severe uncontrolled asthma (we cant seem to get it under controlled for the life of us), severe eczema, and a heart arrhythmia.

I cannot get the flu shot because I am allergic to eggs. I did get the pneumonia vaccine though.

We really have no idea if I get sick so often because of my asthma or becasue of the Methotrexate.

My doctors dont think my illnesses would be so severe if I did not have asthma. My asthma makes everything 10 times worse. The slightest cold can put me in the hospital.

Last year I ended up in the hospital for a week with the flu and than a week again for an unknown virus that almost sent me into respiratory failure.

I do catch pretty much everything under the sun though.

Right now, I have had a low grade fever for 2 weeks (no higher than 100) plus fatigue, cough, shortness of breath and general soreness all for about 2 weeks.
This happens probably about 4-5 times per year and everytime my internist draws bloodwork just to make sure everything is okay.

Not including my recovery from surgery, I have spent about 25 days in the hospital this past year. 35 including surgery. The 25 days were just because of the flu adn other illnesses (4 separate hospitalizations)

I wash my hands all the time (I carry hand sanitizer with me just in case)
I eat fruits adn veggies with both lunch and dinner everyday
I get at least 8 hours of sleep a night
I exercise 4 times a week (usually about 7 hours/week)

BUT, I am in college. I cant avoid other people who are sick. It's basically impossible.

At this point, my doctors and I just cross our fingers that I dont get too sick and take it day by day during flu season especially. If I can go 3 months without a hospitalization, we are in good shape.