6MP and increased Infections/Lowered Immunity

[JohnnyRottenAppleseed]

Hey folks. So i'm only at half the dose of 6mp that my GI doc wants me at: 50mg a day. Even at that rate I get boils and other infections like all the time, at least every month.

Anyone else get boils over their body from 6mp? I don't get it when i go off the 6mp. My family doc is going to discuss going off 6mp with my GI Doc because my quality of life is kind of shitty going to get boils lance, packed, repacked, etc. I also had some perianal abscesses that haven't bothered me in a few months. My GI says they are fistulas but they never did any tests to confirm and the MRI didn't show fistulas. At any rate, i hate flaring, not eating, and shitting blood, but i also hate getting infections all the time. Thanks for listening, and any input is greatly appreciated.

 

[Lydia]

Try a face and body wash that contains benzoyl peroxide. I use proactiv and I dont get cysts and boils on my face and back anymore.

Make sure you take zinc, vitamin D and C as well during the cold and flu season.

 

[Terriernut]

Hey JohnnyO, I got me a nice little rash with boils on my arm from 6MP. I was not best pleased. I'm only on 50mg too! And I'd only been on it 3 weeks! I took myself off of it for about 1 week. The IBD nurse agreed. But as soon as the rash with pustules quieted down, back on it I went.

The good news was the pustules were still there on Halloween! Scary stuff no makeup required! :hallo3:

But as soon as it was clearing I went back on it, but splitting the dosage. Broke the pill in half, so 25mg morning, 25 mg night. So far so good. And my exhaustion hasnt been as bad this time.

 

[JohnnyRottenAppleseed]

Hmmmmnn yours sounds mor like an allergic reaction/rash-like than lowered immunity which is my gripe with 6mp. It put me in remission after a very bad flare but then lowered my immunity to the point where I get opportunistic infections. I took myself off 6mp a few weeks ago and started back on Lialda. I hope Lialda and an antiinflammatory low bad fat diet with very little grain and sugar will help me stay in remission which I define as going poop in the morning and not going throughout the day or waking up to take a dump. Golden banana texture stools with only sometimes looser but formed stools and no "D" except when I eat what I shouldn't aka pizza, mozzarella/ricotta , super greasy food, or too much stress/sleep deprivation.

 

[Terriernut]

May have been an allergic reaction, but according the IBD nurse she thought a reaction to 6MP.

With the lowered immunity we have on any of the crohns meds, we are in trouble with just about anything that breaks the skin. I do think its time you discuss different medications with your GI. When are you going in next?

Also, your IBD nurse is a great person to ring first. Bear in mind, she can get you an appointment very quickly. What does your bloodwork say by the way?

 

[JohnnyRottenAppleseed]

My GI doc is supposedly one of the best at UCLA except he's stubborn and continues to treat me based on my sigmoidoscopy from oct 2010 when I was in a bad flare and really inflamed. He is pushing humira but my crohns isn't active right now. My current problems are recurring infections. I can see him in a few days notice I don't have an IBD nurse I just make an appointment and I have an awesome primary care doc I can get in to see in a few days notice.

 

[JohnnyRottenAppleseed]

Not sure what my blood work says as he doesn't share that info with me like other GI docs have. I should have my primary care doc look at it and let me know. I take zinc and vit c and vit d and it hoped clear my skin.

 

[Terriernut]

How long have you been on 6MP? And are your bloods taken every month? If you started it recently your bloods should be every two weeks. The concern I would have is the GI isnt even looking at your blood results!

By all means your GP should be looking at them and sharing the info with you.

Also sounds like you should have another colonoscopy (joy!). That way you and your GI are on at least a RECENT page together. But if you have fistulas that is probably why he's suggesting Humira or a stronger drug. Its definetely not doing enough, 6MP if you're still having these issues and unable to up the dose. With pred......:frown:

 

[JohnnyRottenAppleseed]

I agree I'll talk to my primary care doc. I get blood every three months. It was before starting 6mp. A few weeks later and then every 3 months. No anal rectal abscesses since April when I cut my dose of 6mp in half and did a round of cipro/flagyl. Been great since. The alleged "fistulas" go away when I'm not on immunosuppressants . I also think they are just boils/abscesses, not fistulas as MRI showed no fistulas and no hardening of colon wall. I agree I need a another colonoscopy.

 

[Terriernut]

I am sure a colonoscopy will help clarify things. Just a bloody pain to prep for them!

I would also think to ensure no fistulas an MRI or CT scan. (those arent too bad at least) That way the Dr can just see for himself, and you can know as well! Its a good idea to keep a diary of symtoms or lack of to give to the GI so they cant argue with you as well.

We are all so different, and react differently to meds. I'm sure the GI's would love us all to be the same wouldnt they? Maybe 6MP just isnt your drug. But certainly something will have to keep you in remission. Although saying that, I stayed fairly symtom free (except for the chronic big D) for years just on Asacol. Perhaps mesalsazine would do it for you for the time being?

 

[Feather]

My GI has been monitoring my white cells & lymphocytes every week for the past few months because they have been pretty low on 6MP (he used to do every 3 months but decided to check more frequently due to my white counts). When they get too low for his comfort, he lowers the dose or tells me to stop taking it for a few days to give my body a chance to rebuild those cells. Does your doctor usually send you your blood results?

 

[JohnnyRottenAppleseed]

I'm about to fire my GI. He checks my blood every 3 months but does not share the information with me. I think he's waiting for me to flare again to justify the humira. I'm convinced he's building his vacation home with the kickbacks for pimping Humira. I'm doing great holding my remission with Lialda, whole foods diet and supplements.

 

[ErikaHouston]

Are the boils mrsa or staff infections? Sure sounds like it. I have mrsa and have had 5 boils, 3 while on no drugs (not yet diagnosed) and 2 while on Imuran over the past year. I have not had any after starting to use Hibiclens and Dial (rotating). Also have to wash hands FREQUENTLY. Do not pick or rub nose whatsoever (that's where most bacteria lives). Do not pick at scabs, pop zits. I think you may be able to get it under control without having to stop 6mp.

 

[JohnnyRottenAppleseed]

It's not mrsa or staph I've had them cultured. Thanks for reminding me about the dial soap!

 

[Jane]

Get your labs done at Quest and get your results sent to you

Johnny -

I get my lab work done at Quest labs and I signed up on their Gazelle application (on my phone, you can probably do it online as well) to have my lab results sent to me. This way you don't need to wait for your doctor to share the results with you. You can get them directly as soon as he/she does.

 

[JohnnyRottenAppleseed]

Took myself off 6mp against my GI specialist wishes but knowledge of primary doctor who witnessed and treated my relentless infections caused by 6mp. I've been off since November 2011 and guess what? Not one infection since!