6MP Reaction/Side Effects

[leeannmead]

Hi All,

I've been taking 6mp since June. My dosage was bummed up (3 weeks ago) to 150 - 3 tabs/once a day. I had my blood work done and my white count was way too low. He said in the 1,000 range. Has anyone had that happen before. I'm completely off all meds until next Tuesday where I will then have another blood draw to see if my white cells are increasing. If so, then I'll be put back on it, but on a lighter dose - Ugh! If this doesn't work than it's Humira or Remicade for me - which it could be worse. I'm just frustrated.

Also, other side effects I've noticed are constant headaches, flu-like symptoms, dry throat, itching spells (love those!), swelling anckles and calves. Boo - this all sucks, but hey, my guts are not hurting as bad as they were.

Anyone have similar side effects/experiences?

 

[Jennifer]

150mg a day sounds like a lot. Maybe reducing the dose would do wonders along with adding another med to help the flare get under control like maybe Entocort or any other med you haven't tried yet cause there are a lot out there. I'm one of the lucky ones I guess who hasn't had any side effects from 6MP but swelling of the ankles and calves puts up a red flag for yet I can't for the life of me recall why. Sorry I'm not that much help right now.

 

[Ian]

I got a little nausea (that went away if I ate - way to get fat!) and some fatigue for the first few weeks after starting the drug, but it passed once my body adjusted. I also experienced some very minor hair loss (only at my hairline) which I think was due to the 6MP too, but that stopped and grew back. So while I didn't experience the same side effects as you, it's possible they're only temporary like mine were.

Sometimes side effects can be combatted by splitting up your dose (morning and evening) or taking it all at night so that you sleep through them. Do you find the side effects are constant or just for the first part of the day? If it's the latter, this might help you. I haven't experienced a decrese in my WBC but others on the board have, hopefully someone will respond to this thread. That is certainly a reason to reduce your dose or come off the medication, so it's good your doctor has made that call. Glad to hear your Crohns symptoms are being helped by the drug at least, especially as it can take 3 months to take full effect and you're already seeing a difference at 3 weeks. I hope they find a way to keep you on it while minimising the nasty side effects.

If you don't mind me asking, how much do you weigh? Dosage is calculated by the patient's weight. I'm just under 10 1/2 stone, and I'm on 100mg - increased from 75mg, and have had no trouble. I'm under the impression I can't go any higher, but since you have, I just wondered if that was because you weigh a lot more?

 

[jmom]

My son's doctor wants him to start 6MP as soon as possible. He has been on Asacol and Prednisone when he has flare ups, but she does not like the Prednisone and thinks he will do better on 6MP. Any thoughts? I am concerned about the side effects with 6MP, but want him to feel better. He was dx at age 7 and is now 16. Any thoughts on diet too? For a long time he was told to stick to a low residue diet and then was told that was not an issue. I think gluten free helps him somewhat, but am not positive. I welcome your feedback and suggestions. Thanks a trillion!

 

[Jennifer]

Medication is always trial and error cause everyone is different. I don't have any side effects from 6MP and have been taking it for well over 12 years now (started taking it when I was about 14 I think). In my opinion, Prednisone is the worst med for Crohn's I've ever experienced (side effect wise), well that and Azulfidine (Sulfasalazine). Try it out and if it doesn't work then try something else. While on it you must have blood work done often (I have mine done once a month) to make sure it isn't affecting your son in a negative way.

As far as diet goes it can help lesson the symptoms while in a flare if you follow a more bland diet. While in remission this is less of an issue if at all (I haven't noticed it to be an issue during my remission). Do whatever helps cause everyone is different. Even while keeping a food diary you'll notice that there were some foods that gave him issues in the past that he doesn't have problems with anymore.

 

[ThanksP]

My doc added 6MP to my Cimzia when it started to fail. 6MP lowered my WBC way too much as well. I was on 100mg (I'm 108lbs) and was on that dosage for 4 or so months with no serious problems. Then BAM! WBC too low and my hair started falling out in HUGE amounts. I'm no longer on the 6MP or the Cimzia and am impatiently awaiting Remicade. Other than the low WBC's and Neutrophils, along with the hair loss...I didn't have much of a problem with 6MP.

 

[Jennifer]

I was about 115-120lbs before my resection and my GI didn't go higher than 75mg of 6MP. I'm surprised by the dosages some of you are or have been on for your weight.

 

[ThanksP]

I was about 115-120lbs before my resection and my GI didn't go higher than 75mg of 6MP. I'm surprised by the dosages some of you are or have been on for your weight.

The recommended dosage is 1.5-2.5mg per kg for Crohn's. So if you are 105-110lbs (like me, 50 or so KG) the dosage would be approx 100mg...give or take.


Edited to add: all of the above is true only if my poor math skills are correct.

 

[leithcote]

I've been on 6MP for around 6 months now - with a few side effects - mainly tiredness and aching joints. I weigh 75kg and my dose is 75mg a day. I think, as with Prednisilone and Humira and all other meds, each person can react/tolerate some better than others - unfortunately for us, there isn't (as yet) a way to tell in advance!