Immune Suppressants

[remlap13]

Ok, so I was officially diagnosed with Crohn's on Thursday morning. My GI prescribed me Prednisone, tapering down from 40mg/day, and Imuran, 200mg/day. The Imuran has me somewhat worried.

Now, I completely understand why an immunosuppressant would work for Crohn's. Basically stop my body from attacking my intestines. I'm just concerned about the side effects, namely, getting sick all the time because my immune system is shut down. I asked my GI about that, and he said not to worry, that this is a standard treatment for Crohn's, and that very few of his patients get sick more than usual.

Seeing as how I do not trust doctors at all, I wanted your opinions on it. Is there anything I can take/do to keep myself healthy with a lack of immune system? I'm also taking fish oil, inulin fibre, and have been trying to either go tanning a few times a week, or taking vitamin D.

 

[MapleLeafGirl]

I was worried about Imuran too. I have been on it for about four months. I haven't gotten sick more than usual. In fact my stepson's been sick a couple of times and I thought for sure I would pick it up but didn't. I have yet to find anything natural that makes a noticeable difference.

I would avoid the tanning beds though. You are at an increased risk of skin cancer with Imuran or so I've been told.

 

[Crohn's 35]

Mapleleaf girl is right, tanning beds should be avoided. Vitamin D3 is best and the way to activate it is being in the sun for a few minutes a day. Not tanning beds. Imuran is a hit or miss drug for some of us, I know of some on it for 5 years and have done amazing. Try not to fret and live your life, worrying just makes things worse. Hang in there.

 

[Claire617]

Im unsure what the name for Imuran in the UK is but I've pretty much taken any and all treatments and I've never suffered from flu or anything I do go and have my flu shots during the winter season and the swine flu one when it came about; however that's really a personal choice as there's some debate whether to have them or not.
Makes me slightly glad being diagnosed at a young age because i was completely ignorant to the side affects of the drugs I was taking.

 

[theend2]

If you are on prednisone start things out right for yourself right off the bat and take calcium with vit D 2000mg each day to avoid what happened to me. Osteoperosis in a short 2 1/2 years I got from the prednisone. Second avoid your sugar intake try to limit that because there is a chance you could become diabetic from the prednisone. Understand though that you need to take the prednisone it will put your flare under control quick. Sleep sleep sleep try to get lots of sleep it helps for me. Other that that make sure you take a good multi vit each day also and eat a well balanced meal. Stock up on hand sanitizer and if you hear someone hacking away of a cold just walk the other way and you should be fine. This is what I do and I have not been sick from anything else but this disease in like 2 years. Weird but I think I notice that more and more that people on here done seem to have or get other sicknesses I thought there was a thread on that on here also can seem to find it though. Good luck. Wishing you the best.

 

[D Bergy]

You are not really in a situation in which you have no immune response, but it is lowered a bit. We would not live for a year without any immune response.

Magnesium is a really important mineral for proper immune function and many other metabolic processes of the body. I would make sure you get enough of it.

Whether you do or not depends a lot on the water source you drink from and diet.

I hope the Imuran works well for you. It certainly is better than staying on Prednisone any longer than you have to.

Dan

 

[Astra]

Claire, Imuran is Azathioprine over here in UK

I concur with all of the above, especially about sunbeds, not a good idea.
I was on Azathioprine (Imuran) for about 6 months til I became allergic to it, and I didn't suffer any more illnesses, bugs, viruses etc than I normally would
try not to worry, and if you are worried, then take preventative steps to ensure you don't pick up a cold, such as using anti bacterial hand washes etc
Joan
xxx

 

[remlap13]

Thanks for the responses. I think I'm going to go stock up on multi-vitamins after work today. Get myself some calcium, some vit-D, all that stuff. Maybe a little thing of hand sanitizer as well.

I had another question. My mom is freaking out about all the drugs I'm taking, specifically the Imuran. Is this form of treatment any riskier than other ways of treating Crohn's? And are there natural ways of controlling Crohn's that don't involve medication? Like supplements, lifestyle changes, diet, etc?

EDIT: Also, I've noticed that the people that ARE taking Imuran are taking far less than myself. In the 50-100mg range, where as I am taking 200. Does the amount increase the likelyhood of side effects?

 

[D Bergy]

I think all of the things you mentioned can help with Crohn's, but it is hard to get away from some kind of medication, as it begins with an immune system dysfunction.

I use Low Dose Naltrexone as a treatment, which I perceived as a low risk treatment. Of course any given treatment may not work for any given individual, so you have to use what will work for you in the end. luckily it did work for me, but Imuran probably would have been my second choice.

Diet lifestyle and supplements are also part of my treatment, but mostly I do this for general good health. Some of the supplements I took prior to my Crohn's diagnosis, but my diet was pretty horrible before. Stress ruled my life also, and I have made some pretty big changes on that front also.

Dan

 

[dreamintwilight]

Side effects can be somewhat daunting. I'm in the same boat as you. Imuran is next on the list for me too. Just waiting on the go ahead from my GI. I'm already on Humira, so I'll have twice the suppressed immune system! But, from what I hear and know Imuran is one of the standard meds. I think if it was truly a concern to be on it, docs wouldn't put you on it unless they felt it was better than some of the other options. Just make sure your doc is keeping up on your blood work and you take any new symptoms seriously, of course. This is all easy for me to say and I should really listen to my own advice, hehe.

 

[Rose City]

I'm on Azathioprine as well and I have been told its really not the common cold and whatnot that you need to worry about, as you really aren't that much more susceptible to those things than the general population. Doctors get all worried about the big guns like TB and the like. Assuming you don't come in contact with something like the plague you should be fine. You definitely still have enough of an immune system to fight off whatever 24 hr bug that lady at the store coughed on you.

 

[remlap13]

Haha that is perfect. I'm currently going to school (lots of germs) and work as a bank teller (lots of germs x2) so I was like "damn, I am the person who should LEAST likely go on this drug!".

Thanks again everyone for quelling my fears regarding this. :yoshijumpjoy:

BTW, this is the best forum I have ever been on, just due to the fact there are Yoshi and Mario smilies that are default in the system. So awesome.

 

[kenny]

Haha that is perfect. I'm currently going to school (lots of germs) and work as a bank teller (lots of germs x2) so I was like "damn, I am the person who should LEAST likely go on this drug!".

Thanks again everyone for quelling my fears regarding this. :yoshijumpjoy:

BTW, this is the best forum I have ever been on, just due to the fact there are Yoshi and Mario smilies that are default in the system. So awesome.

Glad you are feeling better about it. I was scared as heck starting it too. I was actually sitting on this forum all night after my first dose because my GF was away and I was scared my head was going to explode or something! Four months later I am still taking it every day and I feel fantastic. Not only do I not get colds more often, but my pesky allergies are no longer a problem and I have no arthritis pain. I feel better than I have in a decade!

Like Dbergy says it just suppresses/moderates the immune response. You still have plenty of disease fighting capabilities. I was told to be diligent with oral hygiene as that is the dirtiest place and most likely sight of issue. Flossing and mouthwash after every meal for example. I hope it works as well for you as it has for me and don't miss you're blood tests

 

[remlap13]

Glad you are feeling better about it. I was scared as heck starting it too. I was actually sitting on this forum all night after my first dose because my GF was away and I was scared my head was going to explode or something! Four months later I am still taking it every day and I feel fantastic. Not only do I not get colds more often, but my pesky allergies are no longer a problem and I have no arthritis pain. I feel better than I have in a decade!

Like Dbergy says it just suppresses/moderates the immune response. You still have plenty of disease fighting capabilities. I was told to be diligent with oral hygiene as that is the dirtiest place and most likely sight of issue. Flossing and mouthwash after every meal for example. I hope it works as well for you as it has for me and don't miss you're blood tests

There will be no missed blood tests believe me. Part of me wants to go a few days early just to be on the safe side.

 

[Kateliv]

Headaches and Numbness and enlarged blood cells all from Immuran?

Hi,
I have been on Immuran for over a year now, almost a year and a half. I have recently ( last 5 weeks) been experiencing really bad constant headaches. Mainly on the left side of my head, and numbness on my left cheek and side of face. My blood test has come back with enlarged blood cells. My GP thinks it is something to do with the Immuran( Azathioprine) Has anyone else experienced something like this from being on the medication for a long time? Or heard anything like this. I have an appointment with a Gasto Specialist, but i have to wait 6 weeks. Im in a lot of pain and my GP wont do anything until she is certain its not the Chron's medication.
Im not sure i can last 6 more weeks.

Any help or support would be greatly appreciated.

Thanks,
Kate

 

[Nyx]

Thanks for the responses. I think I'm going to go stock up on multi-vitamins after work today. Get myself some calcium, some vit-D, all that stuff. Maybe a little thing of hand sanitizer as well.

I had another question. My mom is freaking out about all the drugs I'm taking, specifically the Imuran. Is this form of treatment any riskier than other ways of treating Crohn's? And are there natural ways of controlling Crohn's that don't involve medication? Like supplements, lifestyle changes, diet, etc?

EDIT: Also, I've noticed that the people that ARE taking Imuran are taking far less than myself. In the 50-100mg range, where as I am taking 200. Does the amount increase the likelyhood of side effects?

Your dosage is related to your weight...I think it's something like 2.5mg per kilogram of weight (I tried to look it up but couldn't find it). I was on 150mg prior to my surgery.

 

[Lydia]

I get headaches from imuran. They are always minor, but constant so its annoying.

I have not noticed myself getting more prone to sickness yet. I have had a cold and a stomach flu come through this house and both missed me. I wasnt too careful either.

 

[violetcreams]

I'm ok on azathioprine (imuran) & I work in Dr's surgeries, face to face with patients every day.

 

[kenny]

yep it is still working great for me. Probably the best I have coped with allergy season ever! I am back at work and out shaking hands, smiling and chatting with a constant stream of people all day long. I guess I have to accept that this will not last for ever but while it works I am going to make the best of it

btw the dose of Aza we take for Crohns is so low that the whole Lymphoma thing is only Theoretical based on very rare incidence for people using it after organ transplants at a much higher dose.

 

[Nyx]

I'm not on anything and I have a damn cold now....lol