Update - starting 6mp and nervous!!

[LNS87]

Was scoped on Dec 12th with mild/moderate inflammation found in the whole colon, and had my follow up to talk with the GI today. They are starting me on 6mp, which after talking to her I feel better about, but still nervous. Maybe it's because I am not experiencing horrible symptoms, they are more annoying than anything. At this point, I am having mild to moderate abdominal pain that comes and goes but occurs daily, along with increased frequency of stools although they are mostly solid, occasional nausea, and lots of fatigue. I am able to still do everything I need to do, and I can teach my fitness classes and work my 12 hour shifts as a nurse, but I am just exhausted and uncomfortable all the time which is not normal for me.

She pointed out to me the risks of letting the inflammation go untreated and also the risks of continued use of high dose pred, so I understand now why I need to take this med, I just don't feel sick so i am having a hard time accepting it. I have to keep reminding myself that there is true evidence of the inflammation from the scopes and that is where the decision for 6mp came, not just as a guess or by symptoms. I know its needed.

Anyways, does anyone have any tips or advice for me? I will start taking it tomorrow and will get my blood drawn for the first time in a week.

 

[kh216]

I have been on 6mp for a couple of years for Crohn's and it has really helped me. As you have been told, you can't stay on Prednisone long term because of its long term side effects, especially how it affects the bones. I also take Lialda and the combination helps me.

Here are some important points:
1) It generally takes 3 to 6 months before the 6mp builds up in your system and you notice that it is working.

2) Make sure that you follow your doctor's advice and get regular blood tests.Your doctor will need to make sure your liver function levels are normal and your white blood count is at a good level. If the levels are off, your doctor will either reduce your dosage or take you off the medicine temporarily.

3)6mp is an immunosuppressant so you may be more susceptible to colds and flu. If you have not done so already, get a flu shot. Try to stay healthy by getting sleep at night, good nutrition and vitamins, handwashing, etc.

4) Although I do well on the medication, some people experience side effects. If this happens to you at any time, please call your doctor. While I hope that this medication is helpful for you, some people have found the side effects to be so uncomfortable that they had to be taken off the medication. It is important to stay in communication with your doctor.

5) Please feel free to post here any time you wish. This forum has a lot of great information on it.

 

[Sascot]

Hi, my son takes 6mp with no side effects so far. He takes it about 20 mins after his biggest meal (dinner for us) and has never had nausea.
We did weekly blood tests for 8 weeks, then 2 weekly, then monthly and now 3 monthly. We were told to be extra careful in the sun and I keep my son away from relatives if they have bad colds/coughs. Good luck

 

[LNS87]

Update:

So far have not really had any noticeable side effects from the 6mp, however within 3 days of starting it I came down with an upper respiratory virus and I am still feeling awful on day 4 of being sick. I did have to work the past few days while being sick and had to stay at the hospital between shifts due to the major snowstorm in the midwest, so I'm sure that hasn't helped either. Taking 1000mg of vitamin C daily and tried zinc that Gi recommended but it made me extremely nauseous. Hoping this goes away soon! Had my first blood draw done this morning and waiting to hear back from the GI if I increase to the 100mg dose she will want me on tomorrow.

 

[Jerzey]

I'm sorry, but me persoanlly I would not take it! I was on 6mp years ago..it did nothing and after reading about the side effects i quit all meds. I feel far better off meds and hardly if ever get a cold or Flu. Diet and Exercise has been a far greater help than Doc's handing me drugs

just my opinion, it's your life, your choice. I'm not suggesting to not listen to your Doc but instead consider all your options and how each choice will effect the qulity of your life

 

[LNS87]

Unfortunately diet and exercise alone are not keeping the inflammation away. I am a fitness instructor and RN so I work out 5-6 days a week and live a pretty healthy lifestyle but my recent scope showed active colitis that needs to be treated so I don't really have the option of just not taking it.

 

[texasagg02]

I started taking 6-mp 5 days ago and already feel like I am fighting off my first cold (have not had one in more then a year!). Hopefully I can kick this quickly as today is day 1 of not feeling good and I just want to sleep!

 

[Miss Underestimated]

Try the zinc spray - Zicam is one brand. I'm on Humira and 6MP and I don't have a lot of symptoms either - now. I went undiagnosed for 20+ years, and managed my symptoms pretty well by myself (or so I thought) - until I had a perforated colon with peritonitis - I almost died.

 

[mama21princess]

My GI wants to put me on 6-MP soon (I am on a course of prednisone right now). I just had my TPMT enzyme levels checked, and I have an appointment with the GI next Wednesday. I am feeling very nervous about the 6-MP, also. I actually have myself pretty stressed out about the side effects and everything.

 

[texasagg02]

It got so much worse! They took me off the 6-mp for now as we wait for my blood test results. I hope this gets out of my system quickly! I will try the zinc spray!!!!

 

[texasagg02]

Miss Underestimated, how scary!!! I am glad you are still with us.

Humira ad just came on TV! Funny timing!

 

[Miss Underestimated]

Well, don't be scared. The tests are the best way to find out if 6MP will work. I had elevated liver enzymes they thought might have been caused by it, but the next blood test I had, they were back to normal.

The anxiety is bad for us too, and even though we might not have bad Crohn's symptoms, the inflammation can continue to damage our intestines. It's a sneaky disease.

I think the biggest factor for me, is to have faith in my doctor - that even if/when things go wrong, he'll know what to do about it.

We're all different, of course, but it seems the Humira-6MP combo is working for me.

 

[Miss Underestimated]

It got so much worse! They took me off the 6-mp for now as we wait for my blood test results. I hope this gets out of my system quickly! I will try the zinc spray!!!!

Any better?

 

[texasagg02]

Thanks for checking on me! I am back to normal! They pulled me off the 6-mp. He thinks it could have been a virus or the 6-mp causing my symptoms. Blood tests all came back normal. I will have to try restarting the 6-mp soon to see if symptoms come back. If they do then we will have to go down another road for treatment not involving the 6-mp.

 

[Miss Underestimated]

:thumright:

 

[texasagg02]

What are the odds! Dr called right after I submitted that! Starting back on 6-mp today! Labs in a week if I can stay on it that long! I hope this works!

 

[Miss Underestimated]

OK, this is a magic thread.

 

[texasagg02]

Just an update: My liver enzymes are going up every blood draw so we are stopping 6-MP (I still have to take phenergen nightly with it) it is not the med for me… on to Remicade….

 

[Nultaar]

I've had issues with elevated Liver function while taking Azathioprine, I'm still on it now, but I take a much reduced dosage and take Allprurinol alongside it. The Allpruinol inhibits the rate at which the 6-MP is converted to inactive products meaning I don't need as much Azathiopine, it isn't without side effects, but which of the drugs isn't.

I'm currently on 75mg Azathiopine and 200mg Allpruinol while having weekly blood tests.

 

[Miss Underestimated]

Just an update: My liver enzymes are going up every blood draw so we are stopping 6-MP (I still have to take phenergen nightly with it) it is not the med for me… on to Remicade….

Sorry it didn't work for you.