HealingWell
Search Close Search
☰

First day on IMURAN, Nervous and have questions..

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/21/2010 7:01 PM (GMT 0)
Well today I took my first dose of imuran... I have been putting this day off for over 2 years because of all the terrible side effects that could happen... Recently I was pretty close to having to have surgery for my strictures, luckily the short dose of pred. helped my pain, my doc. said now we really need to get you this medicine.  I said Ok.... Sometimes I think I am denial about this disease and try to forget I have it.  Well so, I took this pill and I am keeping a positive attitude, this medicine is going to help me feel better and keep me from having surgery...I hope.. My doc. is having me start at 50mg for two weeks checking my blood levels and will go from there in increasing it.. what doseage are others on? Has it worked well for other people? If I was going to have a reaction from it would it happen right away?? Any imput i would appreciate!!  Thank you!!  
Posted 10/21/2010 7:27 PM (GMT 0)
Hi JLCat, I am so sorry that I have no info regarding any mediations except for Asacol and Entorort EC and I am very sure people will come along to help with your questions. I just wanted to write because you sound just like me (I am about to start remicaid and am so scared). I found out 4 years ago that I had crohns and I think I am in deniel also. I have chenged GI doctors a few times hoping one would tell me that it's just a nervous stomach or something simple. As the symtoms got worse (increasing D and now some stomach pain) I realized I do have to start tgaking something to get my life back. My doctors seem to believe the step down approach is best. Thats starting with the big drugs and working down the ladder as opossed to starting with the step up approach. They claim the best GI doctors are doing it this way now, I don't know. Anyway, the best of luck to you with the medication and I hope you will be on your way to remission.

-Mia
Posted 10/21/2010 7:50 PM (GMT 0)
Hi JLCat!! Many members have had great success with Imuran or its sister med 6mp. We have quite a few members here who have been on it or 6mp for 10+ years.

I couldn't take Imuran because for "me" it gave me too much nausea. But...I have been told that its important to make sure you take it with a meal. If that becomes a problem for you, you might ask to switch to 6mp. Same med, just processes differently in your body. When the Imuran was causing me too much nausea, my GI switched me to 6mp and I started taking it at bedtime, and I had NO side effects at all. You may have some hair shedding with either of these meds, but taking some additional Folic Acid will help to slow/stop that.

But these are great meds for many and has helped them to reach remission. Just make sure to do your regular blood tests. Good luck to you!
Posted 10/21/2010 7:51 PM (GMT 0)
Hey JLCAT,

I was dx with Crohns in 2005 and have been on Imuran for a little over 5 years. When I first started Imuran I felt a little nausea and lots of gas/bloated feelings. It only really seem to last a few weeks. Now, I've been in remission since my re-section in 06..and yes I think it is due to Imuran. It is one of the oldest immune resistant drugs. I feel safer taking that than some others.

Usually it's 1 pill for every 25# pounds you weigh. So if they are starting you on 50 mlgrams...you shouldn't have to many side effects right off.

Good Luck!

 

Posted 10/21/2010 7:52 PM (GMT 0)
6MP did not work fo me...unfortunately but I also have a tendency to get the more rare side effects. Even though the Prometheus serology test said I could take 6MP, I had to discontinue it after developing pancreatitis. It started developing 2-3 weeks after I started 6MP (50 mg). I had 1-2 days of flu like symptons and then a pain radiating from what felt like the most middle, internal place in my body. The pain from pancreatitis felt nothing like any other abdominal pain ive had (and I thought we had experienced it everywhere in the abdomen) and was very internal feeling.

Also, although I never noticed any hair falling out, I have noticed since I discontinued it that I had quite a bit of new hair growing back in. It just seemed like the medicine just "thinned" my hair a little.

Let me know if you have any other questions

Jenn
Posted 10/21/2010 7:53 PM (GMT 0)
Also, you may want to ask your doctor for some orally dissolving zofran for nausea the first few weeks and when you up your dosage. It gave me great relief!
Posted 10/21/2010 8:19 PM (GMT 0)
Hi I have been on Imuran 50mg  for the last 4 weeks have had no side effects from it at all, I also have just started Humira yesterday and all is still good right now. Try not to worry to much about being on Imuran, but make sure your bloods get check wink d often good luck you will be fine Bev x  smilewinkgrin
Posted 10/21/2010 8:24 PM (GMT 0)
HI JLCat, you sound a lot like I did. I was in denial for quite a while after my diagnosis.. under the false impression that I was doing well. When I finally came to terms with it, I immediately needed surgery. I had severe stricturing and had about 18 inches removed along with my appendix, cecum and cecal valve. Only after I had surgery did I realize how bad I actually felt.

I was first put on Imuran (started at 100mg moved up to 150mg) and Endocort. I was never scared of Imuran or the side effects to be honest... but it would have never worked for me with as much damage as I had going on. I was asymptomatic for the most part and rarely had pain.. but all of my tests showed how bad my insides were. My doctor explained that no amount of Imuran or Endocort would repair or remove the scar tissue causing the strictures... with that said surgery was the next logical solution for me.

Now, 4 months post op, I'm back on Imuran, I'm taking 150mg (started with 50mg to build up to 150mg). I never noticed any side effects from it before but this time I'm noticing I'm losing some hair. I've started a hair and nails vitamin with biotin and vitamin E to help. I'll also start taking folic acid which is rumored to help as well. Otherwise, I have no other symptoms from the Imuran. My doctor thinks taking Imuran now, may benefit or help prevent the disease from coming back so aggressively.

I really wouldn't stress about the side effects... everyone is different but I *in my unprofessional opinion* would doubt you notice anything from one pill. It has to build in your system to be effective.
Posted 10/21/2010 8:32 PM (GMT 0)
I started Imuran 12 years ago, took 75mg for 12 years- recently increased to 150mg. Only side effects were a bit of nausia when I increased it this year. No other side effects. Put my CD in remission for 12 years. I was on a "baby" dose and it worked for me until this year. Now I am on a more weight-appropriate amount (2.5 mg per kg I think?). I just started Humira because the 12 years of remission are over and the CD is back- but the 12 years were a blessing and I hope Imuran gives you that and more.

Best of luck

B
Posted 10/21/2010 8:39 PM (GMT 0)
Son(17) is on 100mg a day and so far so good although on last blood test haemoglobin was lower than it was. Another blood test is due in approx 3 weeks so I guess we will see what happens from there. He needs to take the pentasa as well though! He takes tablets in evening so if there was any nausea hopefully he would sleep through it-not that he has said he has experienced any though. He has even managed to gain approx 25lb too.
Posted 10/21/2010 9:53 PM (GMT 0)
I put off imuran until I was no longer pregnant or breastfeeding. I started it in Jan of this year at 50mg. I never had any ill side effects, however at one point my wbc dropped really low, but then it popped back up and all labs have been normal since. We just upped it to 75mg a couple months ago. The only side effect that might be related is nausea, but that's a maybe. I've been fairly ill with D so it's possible my nausea is just from that. My dr gave me phenergan to help with it. I take all my pills right before going to bed, that way if I am nauseous I'm asleep for it :)

One other thing before I forget, I don't know if it's really helped me all that much, but it's possible it is working enough to keep a bad flare at bay. Good luck.
Posted 10/21/2010 11:56 PM (GMT 0)

Thank you to everyone who replied!!  It helps a lot to hear others stories, I so appreciate it!! It has helped to calm my nerves about this med. Kinda nervous about the hair thinning effect, I hope I don't get that. When people say they take folic Acid how do they know how much to take??? Thank you again!!

Posted 10/22/2010 3:54 AM (GMT 0)
I only get the hair thinning on prednisone. However, my dr now has me taking 1 pill of folic acid, I had been taking 2 1/2 pills at one point because of a reaction to an antibiotic. I don't remember what dosage it is, but it's a Nature's Way (I think) from Walmart. The pills are the same size and color as my imuran. You can also get enough folic acid from prenatal vitamins, as well as most other supplements since prenatal's are packed with enough for you and baby.
Posted 10/22/2010 3:58 AM (GMT 0)
I have always taken prenatal vits since my Dx and I get lots of folic from there- but for awhile I had to take it in 5mg tabs due to a drug I took for seizures being bad for something or other...... but that was years ago.... for 12-13 years now I take a prenatal vit every day but not because I was trying to get pregnant- it is just a good vit. :)
Posted 10/22/2010 1:05 PM (GMT 0)
My Dr. prescribed 1g for me, if I'm not mistaken. I need to pick it up from the pharmacy and then I can tell you for sure.

Target has a hair/nails/skin combo vitamin that has vitamin E and Biotin -- both of which I know will help with hair and nails. I started taking them on Wednesday.. the thinness in my hair really has me bummed. But based on some research someone here gave me.. the effects are reversible if you stop or lower the dose of the medicine.
✚ New Topic ✚ Reply