Mercaptopurine making my hair full out

Posted , 5 users are following.

I've been on the above for 3 months and past month ive noticed my hair falling out but now my hair is so sparse I'm too scared to wash it this week cause I can't afford to lose anymore.

I spoke to my consultant last night after a lovely hour and half wait and she is so abrupt and unsupportive and shuts me down and recons the only pill left for me to take is one that can affect the liver and she pulled a face like it was a really bad pill last option.

I've only tried Infliximab and immune suppressants I've hardly tried every medication available, but then she drops the bombshell that the dosage I've been taken is wrong news to me I just did what the hospital told me to take when they discharged me so now she wants me to double my dose which in turn could make me violently sick and make my hair full out more and bring back all my lovely side effects that have only just disappeared .

I hate going to see this woman I always come out feeling worse she basically made out that if this medication doesn't work then next bet is operation to remove colon tslk about jumping the gun I'm not even having a flare up I haven't had one since November while in hospital.

I don't want to be in this medication anymore I don't want to go bloody bald but I can't get hold of anyone like a professional to talk about my options at this rate I'm going to have to just stop the pills and hope for the bestx

I've left a message for my consultant at the hospital I've left a message for my ibd nurse and as per usual nothing

How do I get refereed to another hospital I have lost faith in them all and just feel like I'm constantly being left on my own and when I end up in hospital my consultant basically blames me to cover her back cause she messed up helping me it's a joke

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6 Replies

  • Posted

    Insist on seeing another consultant and or another hospital. It is your right. It's your health! I would do that now!
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    • Posted

      How do I do this?? I rang up my other consultant receptionist and asked to see him every 3montjs instead of the dragon I have to see now and she said there's a waiting list and is now getting the dragon to call me what about I'm not sure as I've already tried to tell her my side effects my worry about my hair and she recons the tablets don't cause hair loss ??? Is she kidding me she's the professional and had to read up symptoms to immune suppressants and tells me hair loss isn't one of them when I've read on Internet the complete opposite
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    • Posted

      Hi there I had the same with the same meds my hair started to fall out in August and didn't stop till sept /oct once I had my colon removed these docs haven't got the illness you have so they don't know how this is and it's disgusting how you are being treated my advice is get the consultant or surgeon you want and go to your docs and request a referral you are well within your rights I had to get a 2nd opinion and that's what I did and it worked one thing I will say if you do have surgery it will be ok it's so scary but I have no regrets being on those meds and nothing working was evil I vow never to go back down that road!! St marks in London / uclh is where I was and st Thomas is good too maybe have a look into them X
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  • Posted

    I find hospital receptionists less than sympathetic and prefer to ask my GP to liaise for me. Often they will be listened to rather than the patient! Ridiculous really but sadly a fact! Speak to a caring G P !  Good luck.
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  • Posted

    Hi Samantha, Sorry to hear your news. Have you got UC and where are you?

    Your GP will refer you to another specialist if you ask. He may have experience and recommend a hospital. The main UK ones are ST Marks Harrow London and John Radcliffe Oxford, some others on here may have recommendations too. We have personal experience of Oxford, absolutely brilliant. 

    My son had UC for only a short time and responded well to meds but then reduced doseage and all went to pieces. He was being treated by local hospital and he perforated and had an ileostomy, so a stoma and a mucous fistula and no colon. Big learning curve, don't get treated by non specialists, go to the best where they treat people with similar problems all the time as they know what to do. That is why the referral to Oxford, a trip but worth it. 

    Also important do as much research as possible. Have you looked at the recent Crohns & Colitis UK treatment info? 

    I found online that people recommend Vit B especially Biotin for hair, skin and nail problems due to illness and med side effects. My son had hair loss too due to meds and anaemia and poor food absorption. The hair grew back when he got healthier but he is on Warfarin now due to the negligent local hospital not giving him blood thinners after he was discharged after surgery and he got a huge DVT. So take note if you are ever immobile or have surgery due to UC then make sure you are properly assessed for DVT risk as IBD raises the risk. 

    Good luck with your progress.


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  • Posted

    And now I've woke up with red spots all over my neck chest arms back legs and belly button look like chicken pox spots is this a side effect???
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