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Crohn's Disease
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Posted 2/22/2008 2:38 AM (GMT 0)
Hi ,

Cant put my finger on it but I had a rash type allergy or something to the 6MP so I finally stopped it on my own. Dr is not returning calls. Weird. I have been off 2 days and still feel lousy, weak, feverish, just bad. Nothing really hurts.

My last white count were 8.2(normal).

So what the heck? Does it rake a long time to clear this medicine? I only was on it for 5 weeks! 75mg in the last week.

Thanks. I just hate this feeling. Like I took a sedative but I didn't.

 

Posted 2/22/2008 2:44 AM (GMT 0)
6MP which is similar to Imuran would probably have the same properties as Imuran in the fact it builds up slowly and takes just as long to run down, i would probably say expect it to take a week before things return to normal, i know in the case of Prednisone it takes my body a good week to settle down after each taper, so i would think Imuran would be the same case. Sorry to hear you had a reaction to 6MP, i guess your body cant tolerate it

PS, everytime i wake up every morning i feel groggy/sedated, thats just a common side effect of immunosuppresants, i am on 250mg/day of Imuran

Posted 2/22/2008 2:48 AM (GMT 0)
Thanks. I hate this feeling. It gets worse in the afternoon and the worst at night. That is the weirdest part. Like the CD always worst at night, so is the "treatment"
Thanks again.Feeling re-assured.
Posted 2/22/2008 3:33 AM (GMT 0)

Hi Sarann...remember, immunosuppressants are very potent drugs & can cause numerous side-effects. I used to throw-up alot while on 6-MP. Like Prednisone, however, you should never just stop a drug without first consulting w/ your doctor (you need to explain, when calling, that you need an immediate call-back...if you don't get it, switch doctors!). Anyway, I needed to take the 6-MP because I was also having Remicade infusions. I negotiated w/ my GI & we agreed, together, to try a lower dosage...this helped greatly although that's not to say that I was completely free of side-effects. Also, as I recall, it takes quite awhile for the drug to leave your system & for your white cell count to start increasing. You absolutely need to consult your doctor! I hope that you find a suitable replacement or, better yet, are able to manage without the drug. Please let us know how you're doing... tongue

Posted 2/22/2008 4:46 AM (GMT 0)
Hi fuzzyw,
I actually called 2 times and told them I needed to talk to him and was having an "allergic rash" to the 6mp and stopped it until he calls. I am really pissed off but there seems to be a shortage of doctors with any sense of patient care unless they are afraid of being sued. Then you get all the attention apparently.
I have seen 8 docs and this seems to be ok practice except that something is going on obviously. They usually call back the same day. This started on Tuesday!
I also tried calleing after hours and a doctor who is NOT even IN their practice is on call for emergencies.
Wacky, yes? There are 4 GIs in the practice so what is up? Are they allat the movies together?
Phew.
At least I feel good enough to complain!
Posted 2/22/2008 6:39 AM (GMT 0)
Be careful...I started w/ a rash and then got SEVERE drug induced hepatitis from the Imuran. The pred I was on for 2 1/2 months was masking the allergic reaction while it damaged my liver...but as soon as I stopped the pred...the rash showed up along w/ severe flank pain and ct scan and blood work were horrible. High liver enzymes and huge liver! But I recovered after 9 days and about a month taking it easy at home. This drug made me horribly nauseas even more than usual too.
Posted 2/22/2008 11:56 AM (GMT 0)
Hi Sharann,
You should not have stopped the Imuran on your own. Also maybe its time to find a new doctor.
Posted 2/22/2008 4:22 PM (GMT 0)
I agree with you teddybear, but given my choice of a more severe allery developing or stopping while waiting for a return call(alot of waiting), I mad the best choice for me at the moment.
I feel ok this am, it is night that is so awful. I will be giving him and the office manager a piece or two of my mind!
Posted 2/22/2008 4:51 PM (GMT 0)

Normally I would not stop a med without talking to my doctor but in this case maybe I would.  Anyway, I definitely think you should keep trying to reach your doctor and let the office manager know that this is urgent and how long you have been waiting for a call back.

Hope you feel better soon.

Posted 2/22/2008 8:16 PM (GMT 0)

I hope you got to see a doctor today. This shouldn't wait. 

I'm no doc, but it seems they should do some blood work to see how you are doing. 

Posted 2/23/2008 12:26 AM (GMT 0)

njmom said...

I hope you got to see a doctor today. This shouldn't wait. 

I'm no doc, but it seems they should do some blood work to see how you are doing. 

Actually, he wants me to go back on the med at the lower(50mg) dose and call him if I have any probs. I DID CALL YOU with a problem( 4 days ago) and this is what her wants me to do. He is not a quack unfortunately, he is a good doctor, with really dumb office staff who "lost" my message. Anyway, I know how to call if emergency occurs, I just do not LIKE to use that word. But, I will. Hopefully, I will not have a worse allergic reaction when I restart tomorrow.

Thanks for the advice guys.

Posted 2/24/2008 1:43 AM (GMT 0)
Hi Sharann...glad to hear that you're doing better & that you can feel relieved about getting a callback, in the future (it's a scary feeling when you're sitting by the phone, knowing that you need immediate attention). Hope the lower dosage works! tongue
Posted 2/24/2008 2:54 AM (GMT 0)
You did the right thing by stopping it, and calling your dr.
Posted 2/24/2008 4:54 PM (GMT 0)
I think he should order some blood work for you again - I went to the emergency when I was feeling absolutely horrible with 6-MP after taking it for about a month. Nothing showed up too bad according to the ER blood results (nothing apparently showed up then), and the doctor misdiagnosed gallbladder attack and told me to follow-up with my family doctor. I saw my GI 2 days later as I continued to feel horrible, he told me to stop taking the pills and get bloodwork. I saw him the following day, and ended up hospitalized with severe immuno-repression and hepatitis. I was off work for 3 weeks. Things can go very bad very quick with 6-MP. My symptoms started with vomiting and diarrhea, and then severe fever and chills. I also had pretty bad gut pain.

Good luck and I hope things work out for you,

Bev
Posted 2/24/2008 9:54 PM (GMT 0)
Hi and thanks again,
I am still not feeling too well. I didn't re- start the 6MP yet. I wanted to wait out the weekend since whenever something goes wrong, its always on a Sat on Sun middle of the night deal. At least Monday is a normal workday.
I am feeling wiped out exhausted. I RARELY use that word exhausted. I feel like I did when recovering from Mono 15 years ago. Zonked, needing alot of rest and sleep, weak legs, weak everywhere. Mind is still working well, body cannot keep up. I feel hot and cold all the time(hot, then chilled then warm again.).
It is very annoying and disconcerting. I have 2 weeks to get back to normal for my new job orientation! I am so disgusted , sorry I am going on and on here.
Posted 2/24/2008 10:06 PM (GMT 0)
Hi, Sorry your not feeling well. I got very sick on Imuran. Ended up in the Emergency Clinic. They then had me stop and it took a while for me to get better. It never hurts to make a trip to the ER when your feeling bad, it might get your doctors attention. Take care of yourself!
Posted 2/24/2008 10:25 PM (GMT 0)
I agree Crohnsnme but I hate the ER and always end up with more trouble than when I came in.
I will be pushing the doctor more if not feeling well soon.
I do wonder if I had early autoimmune hepatitis but I never had a fever.
This fatigue is awful though. I will be watching it. Thanks again.
Posted 2/25/2008 6:20 AM (GMT 0)
I got very, very sick on 6MP with extreme fatigue, weakness, fever, aches all over. It felt like the strongest flu I had ever had. I seriously could barely move. All I wanted to do was sleep and not move. I was on it only a short time and I was told to stop and try again in two weeks. I did that and in two days the symptoms came back. I stopped it.
Several years later I was given a test that showed that I had some sort of problem with the drug (well, duh!) like an allergy, but they used another word. My doctor was in Iraq in the war and so another guy was covering for him. He insisted that I go back on 6MP and I refused. He told me that they would start me on a baby dose and work my way up. I was so scared, but I was also so sick from the Crohn's that I did try it. And you know, it did work that time. No side effects. And I did get better.
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