6MP and arm sores?

[chops]

Hi everyone,

I have just started taking puri-nethol (6mp), 100mg per day and besides the usual fatigue and nausea, I have started to get little sores on my arms.... Does anyone else have this side effect because I can't find it on my medication info list??? I have taken all the other crohn's meds but haven't been able to tolerate them and this one seems to be one of my last chances. Is anyone else here saying 'stuff it' and thinking the crohn's medication is worse than the disease and just decide to take no meds and let the disease go by itself??? I have just recently had my first bowel resection where I lost 40cm of my small bowel so am scared to go through this operation again - what is everyone else doing who can't tolerate crohn's medications???? Please help me with any ideas.....I feel like the meds are poisoning me from the inside and would rather suffer the consequences of crohn's than the side effects of these toxic medications!!!

Thanks for any ideas/suggestions :hallo3:

 

[Dexky]

Hi Chops, welcome. EJ hasn't had any ill effects from 6mp. He's on 50mg/day. Maybe you could start with a lower dose and work up to 100mg. I don't know but it wouldn't hurt to see what the doc thinks.
You sound like a case for Jettalady. I think she has tried them all and rejected them all. She'll have good advice for you.

Good luck and stick around!!

 

[Crohn's 35]

Hi Chops and welcome to the forum! I am like you..not many options left and a possible 3rd resection, and I too am not wanting that. I cant help you with the sores but I had a rash from being on Prednisone. I react to 6mp almost immedately. Methotrexate was just aborted, too ill and wasnt working. Remicade severely reacted, Humira petered out, and Cimzia is not available in Canada. You could look up LDN, it has helped some people here and they can give their insight. All meds have side effects, you have to pick your poison or suffer, unless you try herbal remedies...

Lots of info here, many to others to help you too. Keep in mind , we are all different. Glad you found us!! :hang:

 

[chops]

Thanks guys,

I will definitely google LDN but I'm not sure what's available in Australia etc.... At the moment I have the best GI specialist in the state so trust what she says, only problem being that I am on her study research prgram so not sure whether I am always being looked after for my health or just another number for their study.....

I have alot of issues with abscesses and fissures as well so not sure if any of the meds can deal with both the crohn's and these other crappy issues too. I hate this disease sooo much - it's totally embarrasing when you're a 30 year old mum walking around feeling like you are about 90 because you can't control your own bowels!!!! :hallo3:

 

[skymgirl]

Hi Chops,

Are they actual sores, or do they look like little blood splotches? I was on 6mp until yesterday, when a co-worker told me I was bleeding on my collar bone. I took a look in the mirror, and it looked like a bright blood spot on my skin, but it wasn't an open sore. Soon they started popping up all over, my arms, legs, chest, back. So I called the doc, and she had me come in right away. The spots can be a symptom of having low platelets/and or a low white blood cell count. My white blood cell count is starting to get too low, so we stopped the 6mp yesterday, another strike out on a med.

It's really important to get your blood work done regularly, so I would give your doctor a call to check in on your most recent numbers and see if you're doing ok. Good luck!

 

[chops]

Hi Skymgirl,

They are like little red bumps - if i just run my finger nail over them though, they immediately start to bleed. I guess they are like little bood blisters or pimples that only blood come out of......they are a fraction of the size though so I'm really not sure. I had to get my blood taken on Wednesday for the first time but don't get my results back until 2 August because my GI is on annual leave. I'm really starting to freak out now!!!

 

[DustyKat]

They sound a little like petechiae, which are pin point haemorrhages under the skin. Perhaps you could look at the literature you should have received with the 6mp and see if it's listed as a side effect.

 

[skymgirl]

I agree with Dusty - they sound similar to what I had, which was petechiae. (Except mine were not actually bleeding, just spots.) What happens with petechiae is that your platelet barrier is low, so the capillaries start to leak out where the barrier is broken.

Try not to freak out, but it is something to take seriously. Does your GI have someone covering for them while they are away? I would call them, or your general docotor just so they're aware of the symptom and can advise you.

Good luck - let us know how you're doing.

 

[chops]

Thanks guys! I saw my GP on Saturday ad he immediately cut my dosage down to half. He discovered an ulcer in my throat which is also apparently from the meds. I am thinking this is going to be the same old story and they will take me off 6MP because it seems that I just can't tolerate any of the bloody Crohn's medications. I am seriously beginning to think that the drugs are way worse than the actual disease!!!!