Do Side Effects From 6mp Improve With Time?

[jck3mom]

Hi everyone-
My daughter was diagnosed with Crohn's 3 months ago. We just started on 6mp about 2 1/2 weeks ago but have temporarily stopped because the side effects were interfering with her exam schedule. She had nausea, vomiting, chills, fatigue, and lack of appetite. We are going to restart when exams are done (in 2 more weeks) but were wondering if the side effects subside as your body gets adjusted to the medication. She also takes Asacol and VSL#3. Any input would be greatly appreciated.

 

[pennywanna]

Thanks for everyone's support, I went to the doc and says the Humira may not be working yet, but seeing as nothing didnt work for me in the past, even Entocort was not working for me, so now I am on the dreaded Prenisone 8 a day.... along with the Humira. I think what happens is our bodies tend to become resistant to many drugs and therefore change them around. My doc says if after the course of Prednisone doesnt work or the Humira, my 3rd surgery will be inevitable. I hate prednisone and I am very aware of the side effects, but not having another lousy summer. Everyone is different and I mentioned to my specialist about antibiotics and Humira, and he says it isnt a factor not to combine them. I have been to a few GI's and this one is the first to listen and give me the best advice. There are alot of quacks out there, get a second opinion, if you have to.

VSL#3...isnt that expensive??

 

[jck3mom]

We are very blessed that our insurance covers it because yes, it is VERY expensive.

 

[pennywanna]

The problem with this disease is everyone makes money on the drugs, but since everyone is different, and resistant to some drugs, sometimes trial and error are the only choices, some work great on the cheaper drugs, some on the expensive. Usually I try to get all the information I can on all drugs, because they all have side effects. I am fully covered by my husband's company insurance. We have to be grateful for those who can afford it, but I feel bad for the ones who cant. Most people cant work with being active and cannot get it into remission. So you have to go thru assisstance, by the time you get thru the paper work the disease is so far gone. You cant believe everything you read, and as for me Humira is relatively new in Canada, and not fully approved so there is not much data. So what I wonder is "what you dont know wont hurt you?" Or is surgery the answer?

 

[katiesue1506]

I have never been on 6mp, however I was on Imuran for about 8 months and it seemed that my biggest side effects were fatigue and hair loss. The hair loss got worse... and the fatigue became manageable. So really I'm not answering any of your questions...


boy I'm useless

 

[Shakedown]

Out of all the users of 6mp/Imuran that I've read about, I'd say about only 25% of them gave it a thumbs up.

Every Dr. I've been to has suggested it to me and I sit here now lookin" at the script for it. I refuse to fill.

 

[drew_wymore]

I can only relate my imuran experience which was that the side effects didn't really go away. The fatigue I was able to sort of get under control, the nausea was taken care of through phenegren, I also seemed to always have a slight cold that never went away until I got off the stuff. Hope that helps in some small way?

 

[BWS1982]

Wish I knew what sides I can even attribute to the Imuran, if any. Or even if the Imuran is even doing any good in the first place.

Perhaps the drug's website (6MP)

 

[Kev]

I haven't been on 6MP. I was on Imuran/Azathioprine... which I 'think' is a slightly different form of 6MP.. The body has to break it down, metabolize it so the 6MP is released to do it's thing. Anyway, imuran wasn't a pleasant trip. I was on it for less than 3 weeks before I became toxic to it, and had to come off of it. If your daughter doesn't achieve benefits from it, or the side effects she experiences makes it too difficult to continue, there are other recourses. There is a long list of drugs to combat this, and it may take some 'experimenting' .. even some trial 'n error at the beginning to find a good fit regimen. I don't know your situation regarding health care coverage; but if you can swing it, see if you can arrange to consult with a good dietician or nutrition counselor familiar with crohns disease issues. exercise, REST, nutrition, diet, meds, limiting stress, all these seem to play a role in combating this disease. one 'good' starting point is to keep a daily diary of everything entering the body, and the follow-up symptoms, etc., the day or two after. This should help one to pinpoint the often very specific 'triggers' an individual may have to this disease, train one on what to avoid or limit, and and to help forecast/predict ones reaction to same over the next day or so. It also helps a person relay to their doctors 'how' they are doing... not so much how they are feeling at the specific time N date of a doctors visit... but how the disease is 'tracking/trending' overall.

 

[pennywanna]

I think you are on the right track Kev, I have been on Imuran two times and other than getting fevers all the time I had to go off it. The say it is supposed to suppress your immune system so what ever drug you are taking is supposed to work.
Limiting stress is a major factor. As I said earlier I had a major stress time and thought Humira wasnt working, took my shot in the leg this time and within 6 hours my symptoms almost went away. So I wont take the Prednisone until I really need to. I have no side effects from Humira, since Remicade was a terrifying experience for me. The only backdraw is it is not suppose to help with the Osteoarthritis, only Rhumatoid arthritis is controlled. Everyone has stress but it is so hard to avoid all. Eating different foods make you sick. But I find reading everyone's posts have really shed some light and know I am not the only one with the same symptoms.

 

[Kev]

well, I'm no expert, but I have had a lot of exposure to rheumatoid N osteo arthritis. If it's any consolation.. while ra is an immune disorder related disease, osteo is the accumulated wear N tear of joints. One of the best things one can do for osteo... well, for that matter RA too... is to engage in a good/frequent exercise regimen. I know it sounds.. welll, like the worst possible advice, but it works. Just make sure that your arthritis is correctly diagnosed. There are arthritic conditions related specifically to crohns, OK?

 

[butt-eze]

I was told when I was on azathioprine that sometimes people can overcome the side effects if they are able to stick it out. I was hospitalized with dehydration and mal-nurishment from throwing up etc. Therefore I discontinued aza. I retried it and had the same affects. Aza actually converts/metabolizes into 6mp after you take it.

 

[pennywanna]

Well I gotta tell ya, the Arthritis thing, can be a mystery to me, because I was diagnosed from a regular Gp (who was not that good anyways) that I had Osteo when I was tested, I cant remember what test I had done because it was 8 years ago, he put me on Vioxx, then changed to Celebrex and it was helping, I only told one pill a day kept it in check. But then I also noticed when I gained weight or became active in crohns it would be aching in my shoulders, and knees. I have started an exercise regimen and I am doing low impact exercises because I have a bum knee (had orthoscopic surgery 2 times). I am not on Celebrex and havent been for some time. Because my crohns was not that bad at the time. I have had crohns (diagnosed) 15 yrs but had symptoms on and off for years before that. So you are right about the exercises, they do help and lost 8 lbs. Everyone thinks you have to be skinny, to have crohns. I was but not now,,, learned what I could and couldnt eat. You get confused alot because everytime something happens they say it is crohn's related...I mean everything.

 

[Kev]

Yeah, penny.. think you may want to discuss your arthritis issues with a GI. It may even come down to a referral/consult with a rheumatologist. From what I been told in the past, differentiating between RA N Osteo is pretty cut n dried. bloodwork N x-rays usually give a definitive diagnosis of RA.
essentially, RA is auto immune, body starts attacking the joints, disolving them over time. I saw x-rays where literally bone had completely disolved.

now, as for distinguishing between osteo N crohns related arthritis or even arthritis like conditions, I'd never even heard of it till I was dx'd and joined this site. Now, i've suffered for years from what I ASSumed was arthritis (osteo) from a combo of major injuries to a number of joints, and my size. it is pretty common for us tall fellows to suffer from osteo fairly early on as we place more stress on our joints. Odd thing is, since being dx'd (its more likely the pills I'm taking) my arthritis, or arthritic like pains, have lessened.
Except during major flares... or drug changes, withdrawals, that sort of area. Having had these pains long before dx, I've just grown used to them

But, if they are IBD related, and consulting with your GI or rheumo means it can be alleviated, it certainly wouldnt' hurt to pursue it. Should hurt less.