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Imuran/Azathioprine/6-MP Support Group

Darren, such advices are hard to give! I might work really well for you, or it might not. That's not something that's easy to generalize. :) But if those other types of medicine have failed already, it could very well be worth trying either azathioprine, 6MP, or methotrexate. :)

Just got the lab results concerning my 6-MMP and 6-TGN levels, and they're much better than before :)
6-MMP 384 (pmol/8x10^8 RBC) (was 9971!!), and 6-TGN 514 (was 174!).
So, most of the 'poison' is out of my system :) Hope it will take effect soon.
 
I have been on 150 mg of the Azathioprine for 2 weeks now it was added into my list of others.... Prednisone 30 mg Bentyl 30 mg Hydros 7.5 mg as needed and Prbiotics daily!! I'm having pretty bad headaches, nothing seems to help... will this pass in time??
 

Lady Organic

Moderator
Staff member
I have never had headaches as a side effect of Imuran or prednisone. Dont really recall reading about it either. More common side effects of Imuran/purinethol are nausea and fatigue in the first weeks. I would contact the GI nurse or pharmacist to inquire about the headaches and see if any of your medication can be causing them. wishing you well.
 
I had headaches for a few days the 2nd week I was on 200mg imuran.. It went away, but I'm not 100% sure it was from the imuran either.. I hope you're feeling better. I've been on imuran close to 3 weeks now and still having issues with nausea. I also had to start a round of cipro and flagyl though so that is probably a contributing factor. I finally found the pressure point bracelets that are supposed to help with nausea (i used them during pregnancy) so far I'm not nauseated today, but I haven't taken my pills either.
 
6-MP did not work for me. After 3 weeks it caused me to have such severe diarrhea that I was admitted to the hospital for dehydration. Evidently this is very rare? My doctor has recommended I try Imuran next. I'm still on Budesonide, and imagine I will be until if and when the Imuran starts working. I'm pretty new to all of these medications. I have researched them but I find that personal experiences are very helpful. I would really like to know if anyone had the same reaction to 6-MP.
 
Long time lurker, first time poster.

I was diagnosed with crohns at the age of 17, I turn 26 this year. I was immediately put on 125mg Azathioprine and 4g Mesalazine daily. Up until recently (last year or two) I had no problems. My health was good, I started at the gym and had gained weight up to 74kg (at diagnosis I was only 56kg)
However, I had a new doctor due to moving to a new area and so I asked for my quarterly blood work. She noted I had been on Aza for a long period of time and so suggested I come off it seeing as I had little problems or pain. I, wrongly, believed her and stopped.
A little over 2 months later the pain started again (it's in my duodenum mainly and tiny ulcers just beyond)
Weight dropped off me, couldn't have the energy to go to the gym...long story short I had to go on another course of steroids and back onto the azathioprine.

Fast forward 12 months and I'm going through a lot of stress in my job and it begins to flare up again (not severely) so I tough it out by eating healthily and took time off work which helped (I am a very strong believer that stress does not help) Anywho, we make the decision to emigrate to Australia! (I was born and raised in England) which is pretty stressful. During the time leading up to our emigration I did some reading on here about the use of probiotics and how they may be beneficial. I started taking anything I could get with a high cfu count (or what I thought at the time as high, 20billion, I capsule a day)

That carried on for the 3 months transition to Oz and my symptoms and pain progressively got less. I decided to crank up my intake of probiotics and found a brand called Bioglan who do a clinical strength 100billion cfu which I now take two a day on an empty stomach (usually upon waking).
My health has vastly improved and I started to reduce my intake of Azathioprine. I am now down to just 25mg a day and only 1g of Mesalazine a day and my health is great. No flareups. No pain. I can eat pretty much whatever I want (obviously I'm not stupid and won't push it too much)

I am due to have my bloods taken in the next two weeks so it will be interesting to see in my inflammation levels have decreased. I'll of course let you know.

This post isn't to say to ditch azathioprine, but I do believe through use of probiotics I have returned to my usual "healthy" state once more.

If you have questions please feel free.

James
 

Catherine

Moderator
Hi James

I am also from Melbourne.

I would look at having faecal calprotectin run. Note well this test is not free. This test measures inflammation in the digestive track.

My 20 year old daughter was dx with Crohn's Disease, and her Crohn's flares without physical symptoms.
 
Hi James

I am also from Melbourne.

I would look at having faecal calprotectin run. Note well this test is not free. This test measures inflammation in the digestive track.

My 20 year old daughter was dx with Crohn's Disease, and her Crohn's flares without physical symptoms.
Thanks for your post, I do get these levels checked on a 6 monthly basis. Last checked roughly 4 months ago and everything was all ok.

Seeing as you're from Melbourne, do you recommend any specialists or know of one? I'd like to see one albeit to discuss some methods of treatment with them.
 
Just started Humira and 6MP yesterday. I was ok after the first 4 shots, no side effects really except the mild soreness at injection sites. Then in the evening I started the 6MP...I noticed the dizziness right away in the middle of the night when I got up to pee. It's been continuing today too. Hopefully it goes away with time. I'm about 71kg and am on 75mgs/day.
 

Catherine

Moderator
Thanks for your post, I do get these levels checked on a 6 monthly basis. Last checked roughly 4 months ago and everything was all ok.

Seeing as you're from Melbourne, do you recommend any specialists or know of one? I'd like to see one albeit to discuss some methods of treatment with them.
Send me a PM and I will response regarding specialist.
 
Taken my first 150mg dose half an hour ago. Nothing bad so far. I'm feeling a little bit dizzy, but to be honest I've been feeling a bit like that all day (hay fever I expect).

I can't say I'm keen, but in another way I feel happy to be part of the club.:drink:
 
It very well could be, sometimes our bodies are unable to process the medication properly and these effects surface. Have you done your one week blood work for aza? I'd follow up with your nurse practitioner and see if she can shed some light on the situation.

I hope you feel better soon!
 
Thanks for your reply. I had blood tests for the first two weeks but then went on holiday for 2 weeks so missed them. I got back on Sunday and got my latest blood test yesterday. Seeing my GI tomorrow so hopefully she will have Monday's bloods in. I have crohns in the terminal ileum but also previously had an ulcer and inflammation in my stomach/dudeneum so wondering if that has worsened and caused these symptoms.
 
I'm scared to start taking Imuran. My symptoms aren't too bad, alittle stomach pain and diarrhea. I just done want to end up having to have surgery in ten years if I don't take the Imuran but I also don't want skin cancer or lymphoma.
 
I'm scared to start taking Imuran. My symptoms aren't too bad, alittle stomach pain and diarrhea. I just done want to end up having to have surgery in ten years if I don't take the Imuran but I also don't want skin cancer or lymphoma.
I have been on it for years without problems.
 
Location
UK
Hi!
I was taken off azathioprine a few weeks ago due to low white blood cell count. Now I'm back on it and I have to have regular blood tests (next one might be on Friday). My GI said to gradually increase the dosage.
:pika:
 
Just be sure to listen to your body, it's a very potent medication and if it's giving you grief, call your NP. I don't mean to startle anyone but I just got out of the hospital because I'm one of the 2% that developed pancreatitis because of Aza.

However, because I listened to the signals my body gave me, and acted on it, I was able to have it treated within 3 days of discovering it. Typically I'm a stubborn 'tough-it-out' kind of guy, and I almost went home instead of to the hospital.

For those of you taking it, and benefiting from it, I am very excited for you and I hope treatment continues to improve your well-being!

Stay strong!
 
Hey! I am on azathioprine and volunteer in a school which has had a lot of children off with chickenpox. I am going to ring my GP tomorrow but was just wondering if anyone else been in this position and what happened? Thanks in advance :)
 
Be careful. I don't know about imuran in particular but some of the drugs we take can lower the immune system.
THIS

Aza/Imuran is designed to suppress your immune system, the last thing you want is an infection. If you've had chicken pox before you might be okay since it's a predisposed immunity but definitely talk to you GI about it!

Good luck :)
 
I went out for a bike ride in the sun on Sunday for about 2 hours, and again for about an hour yesterday. Today I'm feeling quite sunburned, as well as having that unpleasant feeling that comes from spending too much time in the sun.

I did put on a bit of lotion, even though I've never really bothered that much in the past being fairly dark skinned.

4 weeks on Aza. I wonder if this is the first sign it's having an effect? Or maybe it's just coincidence.
 
I went out for a bike ride in the sun on Sunday for about 2 hours, and again for about an hour yesterday. Today I'm feeling quite sunburned, as well as having that unpleasant feeling that comes from spending too much time in the sun.

I did put on a bit of lotion, even though I've never really bothered that much in the past being fairly dark skinned.

4 weeks on Aza. I wonder if this is the first sign it's having an effect? Or maybe it's just coincidence.
Get this sunscreen. the best!!
https://www.amazon.co.uk/Biore-PERFECT-Milk-SPF50-40ml/dp/B00SM99L10/ref=sr_1_4_a_it?ie=UTF8&qid=1465349750&sr=8-4&keywords=biore+perfect+milk

try to find a UK seller in the other seller section...otherwise it'll take many weeks to get to you from Japan.
 
I had been on Imuran for 2 weeks when I became very ill with upper abdominal/back pain.
I was admitted to hospital with acute pancreatitis.
Sigh...
Next we look at Humira or Infliximab.
 
Hey TammyR,

I know the feeling of being one of the rare few that developed that reaction, I'm sorry to hear you had to go that. I hope you've recovered well and your hospital stay was brief.

My GI's original plan was combination therapy with Aza and Remicade (Infliximab), however now that I've failed Aza I've just started Remicade infusions and even in the first couple doses, my body has responded well. Everything seems to be slowly calming down and without any sort of reaction to the medication, side effects and infusion sites alike.

I hope biologic treatment helps! Keep us posted!
 
HI
I am considering re-trying Azathioprine and hope you can give me some advice. I had Crohn's at the terminal ileum for 13 years before surgery in 2013, when I had an ileocolectomy and repair, a temporary ileostomy for a year, which was resected in 2014.

Since then I haven't been on any drugs but I have had on-going problems. A recent colonoscopy shows some mild inflammation at the anastomosis and so Dr has me advised to trial AZA again. I tried AZA 13 years ago in 2002. I started on 50mg, then increased to 100mg. At 7 weeks ( I'm unsure what dose I was on by then ) my LFTs got deranged, Alkaline phosphatase was 259 ( normal 44-147), ALT 13 ( in range ) and Bilirubin 140 !(normal is less than 21 ), so I stopped it. They suggested a re-trial then at a lower dose but I didn't want to risk it. I only ever had budesonide and occasional pentasa for the 13 years before surgery.

I have just got this detail of the blood results from 2002 from my GP ( because I was at a different hospital then )and I am now worried about trying AZA again. These don't seem to be mild elevations, and I am not sure if I had a serious reaction which means it shouldn't be re-tried. Another cause for concern is that before my first surgery my bilirubin was always mid range but since surgery it's fluctuated between 19 and 35 and is mostly out of range in the 20's. the Drs say not to worry because my other LFTs are ok and its not rising all the time.

I have always tried to manage my illness without these medications because of side effects, but I don't want to risk the disease running wild either. And I still feel I have low level active disease, though my blood markers are all fine. If I didn't have the liver concerns I would definitely now go for Azathioprine. Can anyone advise me please ?
Thank you
 
Yes Thanks. I will do now I have the results. I looked it up and it seems to point to drug induced cholestasis which doesn't sound too good !
 
im sorry to hear what you're going through amigo :(

Aza is quite the drug, one of the more toxic treatments prescribed for Crohn's if I'm not mistaken.

I hope some effective alternatives are presented to you in all due haste!

Hang in there and keep kicking ass!
 
Hello all.

I believe I've posted on here before about reducing my 6MP to 25 mg with 100 mg of Allopurinol. That worked. My 6MP levels are okay now.

My question is my MCV and MCH readings. They have always been high. My MCV is now up to 108. I see that this is a common side effect of 6MP. From the more experienced of you guys, is this something I should worry about? Should I really push my GI at my next appointment? Thanks.
 
Hello, I haven't posted for a while and need some advice on starting Imuran. I just had a colonoscopy and it looks like the inflammation in my terminal ileum has changed from "moderate" inflammation to the presence of an ulcer. Up to this point I have been managing with diet and supplements. I have no symptoms or pain either. When I was first diagnosed 3 years ago, I was given Budesonide and Pentasa. I had a very bad reaction to Pentasa and stopped both meds. My GI now wants to start me on Imuran and I am extremely worried about all of the side effects. Has anyone had the TPMT enzyme test prior to starting this med? It sounds like it can somewhat predict whether or not you will have really bad reactions to the Imuran. Any advice is greatly appreciated. Also, any advice on more natural approaches would be nice to hear too. Thanks so much!
 
Hello, I haven't posted for a while and need some advice on starting Imuran. I just had a colonoscopy and it looks like the inflammation in my terminal ileum has changed from "moderate" inflammation to the presence of an ulcer. Up to this point I have been managing with diet and supplements. I have no symptoms or pain either. When I was first diagnosed 3 years ago, I was given Budesonide and Pentasa. I had a very bad reaction to Pentasa and stopped both meds. My GI now wants to start me on Imuran and I am extremely worried about all of the side effects. Has anyone had the TPMT enzyme test prior to starting this med? It sounds like it can somewhat predict whether or not you will have really bad reactions to the Imuran. Any advice is greatly appreciated. Also, any advice on more natural approaches would be nice to hear too. Thanks so much!
I wish you the best. I have been on imuran for years but have not had that test.
 
I had TPMT tested ( a couple of times ) and was fine: high or low, I forget which way round it is. It is meant to predict certain bad reactions, but that doesn't necessarily mean you won't get other side effects.

Apart from feeling a little light headed after taking them the first couple of days I haven't had any side effects, though I have been noticing a small change in urine colour.

5 months now. When's it meant to start working?:confused2:
 
5 months now. When's it meant to start working?:confused2:
It is said to be (generally) around three months. But it can change for every person. Check your white blood cell count, it should be reduced massively. Check 6mmp, 6tgn levels too. I wish you well.
 
I've been on mercaptorine for 15 months (aza for 6 months prior to this). It's keeping my Crohn's under control but I've been having terrible problems with my balance - in the last couple of weeks I've had a couple of painful falls, the latest of which has left me badly bruised. Has anyone else had this problem with mercap/6MP?
 
I've been on mercaptorine for 15 months (aza for 6 months prior to this). It's keeping my Crohn's under control but I've been having terrible problems with my balance - in the last couple of weeks I've had a couple of painful falls, the latest of which has left me badly bruised. Has anyone else had this problem with mercap/6MP?
Contact your doctor. Keep us updated.
 
I am going to the hospital tomorrow to be put on azathioprine and mercaptopurine. Has anyone got any advice for Ma as I am really apprehensive about taking these. Is mercaptopurine also known as 6-MP?
 
Only had a few days of the Aza-50mg, probably speaking to soon, no side effects yet but I think it's to early to say. Tablets usually take a good three to four days to get into your system.
 
Hopefully it will settle soon. I am on day 4 of the Aza, I am absolutely exhausted I have no idea whether that is the Aza or just working to hard😴
 
This is seriously tempting fate, but I do believe that after 6 months it is working. I thought this 2 weeks ago, then symptoms came back for a few days, but I've had another week of normal BMs as well as generally feeling better and my bones barely aching at all.

The consultant threatened me with Humira a month ago, and I've since had the chest X-ray and other tests to make sure it's safe. So maybe that scared my immune system into behaving.

Cross fingers.:cool:
 
I just had a pre op medical exam. I told the doctor that I have been taken off of Humira until two weeks after the surgery. She was wondering if I should temporarily go off imuran also.
 
:thumright:
Only had a few days of the Aza-50mg, probably speaking to soon, no side effects yet but I think it's to early to say. Tablets usually take a good three to four days to get into your system.
:thumright: well all good so far on the Aza, felt a little bit sick for the first few days. 2nd blood test due on Tuesday so keeping my fingers crossed.
 
Sorry to hear that Ron. I hope that's the last of it. I guess it's a case of increased risk rather than "caused by".

Now that it definitely has started working for me the blood test last week showed liver results slightly out of range. They want me to repeat the test, but it may be that I'll be reducing the dose already.
 
Now that it definitely has started working for me the blood test last week showed liver results slightly out of range. They want me to repeat the test, but it may be that I'll be reducing the dose already.
I've been told to reduce the dose from 150 to 100mg. I hope that doesn't meant the symptoms creep back.
 

CarolinAlaska

Holding It Together
I'm cross posting this from parents with IBD:

Jae had blood work in the ER last Wednesday and her white count was 1.3. The next day it was 1.7. I think it was suppressed from a virus she had been fighting. She was then in the hospital (not GI related) and it was never checked again. The hospitalist who discharged her said that she should recheck it in a couple weeks and not restart the 6 MP until then. She is now a week without 6 MP. What consequences will we have if she doesn't take it for 2 weeks? I cannot get anyone to answer the phone for the past week at GI, and still waiting for a call back from rheumatology from today. I'm concerned. Should I be? Her WBCs have never been below 4 and were like 4.7 the previous week. Mostly I'm concerned what her Crohn's is going to do as backlash for not being on the immunosuppressant for 2 weeks.
 

Lady Organic

Moderator
Staff member
I would not worry. I was on a stable deep remission with 6-mp for years and it took about 9 to 12 months after stopping it for the disease to come back. of course everyone can react differently, but I would not worry too much for a 2 weeks off. I have been asked a few times to stop 6mp for a few days (up to a week, if i remember correct, for the WBC to reajust to normal) and then readjust the dose. Hopefully this WBC drop was really caused by the virus so she can return to usual dose asap.
 

Lady Organic

Moderator
Staff member
from the Mayo clinic :
''Because a chronic very low white blood cell count makes you vulnerable to infections, ask your doctor about precautions to avoid catching contagious diseases. Always wash your hands regularly and thoroughly. You might also be advised to wear a face mask and avoid anyone with a cold or other illness.''

this is not a case of chronic low WBC, but maybe just be more vigilant around people until situation resolves. Its a chance for you that colds season is mostly over by now.
 
Hi,
Sorry if this has been answerd before but i haven't checked the whole post.

I have recently been put onto Aazathioprine, Budesonide and Ciprofloxacin.
When i was given the meds they told me that i was unable to drink alcohol on them. To my understanding i am on this as a "permanent" thing until they think to change them, does this mean i cannot drink until i finish/change meds or can i stop taking them for a few days, drink and then keep taking them?
(i also read online that on Budesonide i should not drink due to the dizziness it causes?)
The Aza is a "permanent" thing whereas the others are for about 3 months.
After the 3 months can i drink or what?

Im 18, in the UK and am going to uni in september and do not want to miss out on freshers week (a week of pure drinking/partying before term starts, essentially the best weeks of Uni).

I know its not for this thread but what about Marijuana but are there any serious effects known when mixing Aza and weed? smoking would be both recreational but also a bit for my crohns.

Thanks,
FruitPastel.
Thanks in advance for anyone helping <3
 

emmaaaargh

Moderator
Staff member
Hi,
Sorry if this has been answerd before but i haven't checked the whole post.

I have recently been put onto Aazathioprine, Budesonide and Ciprofloxacin.
When i was given the meds they told me that i was unable to drink alcohol on them. To my understanding i am on this as a "permanent" thing until they think to change them, does this mean i cannot drink until i finish/change meds or can i stop taking them for a few days, drink and then keep taking them?
(i also read online that on Budesonide i should not drink due to the dizziness it causes?)
The Aza is a "permanent" thing whereas the others are for about 3 months.
After the 3 months can i drink or what?

Im 18, in the UK and am going to uni in september and do not want to miss out on freshers week (a week of pure drinking/partying before term starts, essentially the best weeks of Uni).

I know its not for this thread but what about Marijuana but are there any serious effects known when mixing Aza and weed? smoking would be both recreational but also a bit for my crohns.

Thanks,
FruitPastel.
Thanks in advance for anyone helping <3

I started uni last September and have been on aza for about 5 years. Honestly drinking on aza is fine as long as you don't overdo it because the aza is processed by the liver. I'm not a HUGE drinker (can always remember a night out :tongue: ) but I stick to low- or no-alcohol drinks just because my Crohn's acts up when I drink. I would think that the marijuana would be ok as well although I've no evidence to base that off of and have never tried it so I've got no experience to offer. Enjoy Fresher's Week! It's a really good time, really takes the stress out of getting used to living in a new place. :)
 
Nobody ever told me not to drink on those. And I have. Though I never had all three together.

I think just be sensible. Certainly don't stop taking them. If you're feeling dizzy on taking them you probably aren't going to want to drink anyway, which is probably why they say it as it could make side effects worse. But I found both with Budesonide and Azathioprine I only had a little bit of nausea/dizziness for the first couple of days, and then only for an hour or so after taking them, and after that had no issues.

Can't see any problem with cannabis as such, but smoking won't do you any good. I sometimes wonder if it was having too many of the funny fags at University is part of the reason I got Crohns at 23.
 
On a possibly related note: Last year they had me reduce my Aza dose from 150mg to 100mg as my liver results were out of range. I saw the consultant again recently who said that it probably wasn't anything to do with Aza after all, and the recent tests have been fine so now I'm on 125mg to see what happens.

Makes me wonder if I was/am drinking too much.
 

Lynda Lynda

Senior Member
Location
N/A
I just started 6mp 12 days ago. Will have a blood draw soon. Then see my GI.

After reading a few posts here I think that this wierd feeling I get in my head occasionally is a side effect of the 6mp. It is a "off balance" kind of feeling, not a dizzy feeling. The first time it happened I thought it was a panic attack. But then it happened 2 or 3 more times since then. Best not to drive while this is happening.
 

Lynda Lynda

Senior Member
Location
N/A
Will 6mp cause neuropathy.
I'm scared.
Tonight part of my left side of my abdomen is numb from my left hip to my belly button.This is a large area.
Now I am having a panic attack.

I have a scar near my left hip from a kidney surgery 11 years ago and that scar area has always been numb since then. Also, part of my left foot has been numb for years and I have never had that checked out, it has just become "normal" to me. I even feel a small numb area close to my tailbone and that has been recent.

I have Spina Bifida Occulta and a low-lying tethered spinal cord.

And I believe I have been breathing in second-hand epoxy fumes in my apartment, possibly coming from a newly renovated apartment near my apartment.

I'm scared.
 

Lynda Lynda

Senior Member
Location
N/A
No activity on this thread, but it says 6mp. Where are people talking about 6mp on this forum ?

I want to know how long a person has been taking their 6mp pills ? Have you been taking them for a few months at the beginning of your treatment for Crohns, or every day for years ? I don't like the side effects. Bye.
 
No activity on this thread, but it says 6mp. Where are people talking about 6mp on this forum ?

I want to know how long a person has been taking their 6mp pills ? Have you been taking them for a few months at the beginning of your treatment for Crohns, or every day for years ? I don't like the side effects. Bye.
Hi Lynda, my husband took 6mp at the start of his treatment for 6 months. He didn't like the side effects either. I read that taking it longer has risks of other complications
 
Hi Lynda,
I have been taking 100mg azathioprine daily since Aug 24 and wasn't sure if this is the same as 6mp or not. (No side effects so far.) :yrolleyes::yrolleyes:I did a little research and found this informative page:
https://humanpara.org/mercaptopurine6-mp-purinethol-and-azathioprine-imuran/
I am not very science oriented and some of this page was "over my head" but there's some good information on both types of drugs there. I hope your side effects aren't too bad. The list of them on this page is scary!
 
Hi Lynda. I have been on azathioprine since April 2016. It generally works for me but I have problems with my white blood cell count falling too low, which means currently my dose is too low to keep me in remission. Hoping to discuss this at my next appointment.

I feel the vast majority of people on this forum tend to be from the USA. Not sure if that's correct, but just a personal observation. And the doctors in USA tend to either not prescribe 6mp/aza much these days, or prescribe it briefly and then move on. I am sure if I lived in the USA I would not be taking aza right now. The doctors in the USA much prefer the top-down approach whereby biologics are prescribed. They are very expensive so it is pretty difficult to be prescribed them in the UK so you will find more of us on 6mp/aza. I think this may explain why this thread isn't very active.
 

Lynda Lynda

Senior Member
Location
N/A
eleanor, thank you for responding and I hope your appointment goes well. Oh, lots of folks here from other countries.....check out the Weather thread, lots of nice folks there from USA and UK and Canada and Australia. You can chat a bit more than about the weather too. 🙂
 
I have been taking Aza 50mg daily for years in support to Cimzia and now for 2 years Remicade with no issues - but a low dose to stave off antibodies. I had to stop Humira due to antibodies.
 
I have been taking 100mg a day of azathioprine since Aug 25 this year and just had my first Remicade infusion last week. Still on 15mg prednisone daily and trying to back off that slowly. I'm not sure how long it takes for these drugs to kick in, or how long it takes for them to leave your system once you stop taking them. I have days of really bad belly pain and hard masses forming in my abdomen. I massage them and they finally dissipate accompanied by loud gurgling noises. I think all that is a result of a stricture, and not any of the drugs. I am sure it's the prednisone that keeps me awake at night.:shifty-t:
 
Hey, Awoenker12,
The day of the infusion was uneventful, but man, the next day was hell. Those hard masses forming in my abdomen were usually in the lower right, and only occasional. But the day after the Remicade, they were all over- even higher up- and much more often. And I was exhausted. But ever since then, I've been back to the norm, so I guess it was just my body reacting to the sudden "drug dump".
How are you doing- do you think the Remicade is going to be a long term solution for you? Have you given any thought to the Specific Carbohydrate Diet? I hear a lot of folks say it works to keep you in remission without drugs, but I don't know if I can pass up all those carbs I love so much, like bread and pasta! I can't do that diet right now anyway, because of the stricture. (Some days all I can get down are white rice and protein drinks with sugar in them.) But maybe after surgery...
 
NuttyGuts, wow, that sounded rough. Hopefully those hard masses in your abdomen will get better. I will admit, the first infusion is the worse. I personally do not get any side effects from the Remicade.

Anyway, I had an appointment with my GI today. He decided that Remicade is my long term solution. The Remicade has been working wonders for me, I actually feel like a normal person and have normal stools like normal people do haha.

As for the Specific Carbohydrate diet, I have not thought about that much. Right now I like eating anything I want without causing problems, and I personally not a fan of dieting, but if it means taking no medication, it may be a risk I might take in the future.
 
Yea, eating anything I want AND having normal BMs? Sounds pretty good to me- maybe the Remicade will work that well for me, too. Second infusion is scheduled for next Tuesday, and I have made sure to clear the calendar for Wed just in case I have a repeat performance. Are you getting infusions every two months now for maintenance? If so, how does your GI see how your gut is doing- blood tests after each infusion maybe?
 
NuttyGuts, yeah, I am now done with my loading doses and get infusions once every two months. Now as for blood work, I am not sure. When everything was under control and normal before remicade, I used to get my blood work done once every six months. Lately, we have been checking once every two months because of a flare from last year. This is exactly why I am on remicade now. I use to be on pentasa.

I do have a question for you though. Is your doctor doing a combination therapy with you? Meaning a biologic and an immunosuppressant. My doctor is with me. I am on 6mp along with remicade. The reason I ask is because doing a combo therapy helps prevent antibodies forming to the biologic.
 
Hey, thank you for answering a question I hadn't even thought of yet. Yes, the GI doc has me taking 100mg azathioprine a day, and I wasn't clear on why. It prevents antibodies forming against the Remicade! I am also still taking 10mg prednisone a day, but after next week's infusion, will back off to 5mg and then hopefully be off it in a week or so afterwards. Gosh, I used to know almost nothing about drugs, and now it's a challenge learning this whole new world. So I think the azathioprine and Remicade solution is what they call a "top down" option. I think she chose this option for me because my Crohn's is classified as severe.
I think I will have to have surgery because of the strictures, but I am wondering if I feel okay on the Remicade and azathioprine should I hold off? The down side is that they will also cut out the appendix, cecum, and ileocecal valve, even though those are all fine. But if I delay, will I develop fistulas or abscesses or even more strictures? I am not sure what to do at this point, but will be seeing both the GI doc and surgeon again in a couple weeks.
 
The top down approach is what I hear a lot of doctors do. The belief is to get it under control sooner with the biologics and prevent future complications that could lead to surgery. If you feel good with azathioprine and Remicade, I don't see why you would have to have surgery. I guess the only way to tell if you really need it is if they perform a colonoscopy to check for strictures and abscesses. Surgery is typically a last resort if no medication works. So I guess you will just have to wait to see how the Remicade and azathioprine work for you. Fortunately for me, my condition is mild to moderate and I have been through very long stretches of remission with no complications whatsoever.
 
Yes, it's very possible to have years of remission. Before Remicade, while I was on Pentasa, I had about six years of remission. That was when my disease was very mild. Hopefully the Remicade will keep me in remission that long or even longer.
 
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