Anyone else experiencing hair loss with immune suppressants

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My hair is moulting alround the house I washed my hair and clumps came out every time I ran my hand through my hair I don't have any bald patches or anything major but I'm def noticing extra hair loss I find my hair everywhere in the sink on the sofa on the floor all over clothes and washing machine.

getting abit concerned I'm getting more crappy side effects from UC meds then I am from actually having colitis as I have no loose stools or pain or bleeding yet I'm experiencing night sweats anxiety random panic attacks headaches feeling super down swollen jaw line bad eyesight I could handle the going to the toilet and bleeding obviously not the pain but I would rather experience colitis symptoms then all these debilitating all in my head anxiety driving me a little insane symptoms

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  • Posted

    hi Samantha

    me too have had hwent airloss for coming up to 2 years now. I had it cut to make it look thicker but this had no effect. It really gets me down. They say iron deficiency causes hair loss. Although I cannot tollerate iron and my body went into shock when they tried to infuse me with it last year. If you tell the doc he will prob prescribe iron tabs for you, its worth a try. I have been taking folic & b12 for a while now but my hair still falls, I dont have bald patches either so thats a good thing. Chin up x

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  • Posted

    I just typed a message but due to advising stuff to help your hair loss they have blocked it right Samatha it's going to get worse before it gets better knowing what I know now I would want to know to be prepared I didn't go bald but I lost 70% of my hair which was August it started and stopped in octoner after my surgery.. It's growing back now which is an amazing feeling I can only say if you have surgery then it will come back but staying on th meds I don't know I'm afraid.. Just be gentle brush once a day and let it dry natural as much as possible how long you had UC ? X
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    • Posted

      I was diagnosed Nov 2015 but had proctitus and suspected IBS since Jan 2014 ended up in hospital November with pain and dehydration suspected perforated bowel they did the scope thing and determined I had left sided colitis like my brother.

      I suspected it had spread and turned into colitis but no one listened even when I went to doctors 3 times in 2 weeks crying in pain losing blood for months barely able to walk into surgery they put it down to me having a bad flare up of proctitus and IBS and sent me home with anti sickness pills lol and to take paraceptoml and ibuspan.

      I ended up crawling in to a&e the next day and was instantly admitted for 2 weeks.

      I've been on Steriods starting at 8tablets reducing by one weekly since November to January been off them 2 weeks even though my face now looks like I have no jawline so feel and look like a man as hair on face seems to be growing in lovely non Feminine places making me feel even more down.

      I had 3 rounds of infliximab last one beginning of January this year and started getting heavy chest sweats and they out it down to side effects from this sonstoppedbit but I still get it on immune suppressants but anxiety tablets help reduce the heavy chest feeling like I'm havin a heart attack which they now have put down to panic attacks but I'm not sure this is correct as I've had more stresses in my life past 6 years then getting ill and I didn't crack up then so why now colitis is under control and life is good and calm am I feeling constantly anxious on edge and scared all the time.

      i almost crashed on m25 with kids in car as almost passed out having a so called panic attack I'm a confident driver always go on motorway never been issue but that one evening I had to fight against my body so not to pass out and kill us all for 25miles I knew if I stopped and pulled over it would take a hold of me and I would never get the strength to get back on and get home so I made decision to work through it ignore it and race home. When I got home I puked up my body starting shaking I was freezing cold heart pounding chest heavy I was so scared I didn't no what was going on. Now this crap I can't live with is it all in my head which iS worse, cause no quick cure for anxiety or is it symptoms for being on this toxic crap that apparently could give me cancer GREAT.

      how do I know this over whelping horrible debilitating feeling will go away if I have the surgery???

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    • Posted

      Hi Samantha

      I feel your pain I had UC for 11 years had a bad flare 7 months pregnant which then continued for another 6 months till I had surgery sept 2015, I tried all the drugs /diet you name it .. But nothing was working I am proof and so are other people on here darasdad and Sheila's son and me have had surgery i have no regrets as I have my life back!! With children you need your strength I was a prisoner in my own home going up to 20 times per day not enjoying my baby to the full as I was an absolute nervous wreck couldn't do anything or if I did I would have accidents !! I feel for you on your car journey been there too many times .. Surgery is so scary but it's the mind once you have done it the body will adapt better than you can imagine my stoma is my friend as it saved my life and in time I will have the j pouch and reversal but I cannot tell you how much better you will feel after I hope something will work for you and you don't have to go down that road but if you do then it's gonna be ok too .. X

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    • Posted

      Hi I also was a really condfident person before it got real bad and then I would suffer anxiety all the time I think for me it was in my head and the drugs combo of both its completely normal to feel the way you are .. But it's tiring nightmare and I used to cry every day saying when will this end or stop it does horrible things to u get a 2nd opinion they will know by a colonscopy of how bad things are.
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    • Posted

      Hi Samantha, I am so sorry for you, this disease is sh*t in body and mind. So many scary symptoms and so many scary medicines that can make you feel worse than the disease itself, short term and long term. As Rachelle says sometimes you need to take it into your own hands and make a decision that gets you back in control of your life. One of the best treatments for cancer is to cut it out and throw it away. Same for this depressing and horrid disease when it gets severe. My son was told it is a last resort to go for surgery but it turned out for him to be a good result as well as literally a life saver. He has no regrets, he gave the medicines a good go but they didn't work for him. The colon was removed and only the stump retained. He coped very well with the stoma for 18 months and then had the reversal to a j pouch because he could. He has never looked back, he is fully fit and active and in control. I repeat this to myself most days, he is back to normal, a new normal with a scar or 2 but disease and drug free and that is important, he hopes to live like this for another 60 years! we are so grateful for the surgeons' skills that got him back to where he is now. He did say the other day after only 6 months of the pouch that he has actually forgotten what it was like with a stoma! but he knows it was 100 times better than with the disease. He had minor symptoms from the stump and took Asacol to reduce them until they removed it at the first reversal surgery. Some UC sufferers cope with the symptoms and meds and I'm glad for them but not everyone's disease can be controlled.

      I know I've said it before but everyone be aware of DVT and its risks, IBD sufferers are more prone than others because of stickier blood, potential immobility and surgery. 

      Good luck to all, thanks for sharing.

      Sheila.  

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    • Posted

      Hi Sheila

      You message has really touched my heart what a wonderful mother you are be proud!!

      Thanks for all your support and advice it means more than you know.. Do you mind me asking how long your son waited from the first op to j pouch and then reversal as you mention 18 months was it even to spread it out like 9 months then next op? X

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    • Posted

      Hi Rachelle, lovely to hear from you, sending you the best of luck. Rob had the complication of developing a massive DVT post ileostomy because of hospital negligence which put his recovery back unfortunately. He was told by the wonderful John radcliffe GI team that he would be approx 1 year post ileostomy before they did the reversal to allow his body to heal fully and so he could get fit, put on weight and so that all the immuno suppressants would be long gone. They operated in the original scar to make the stapled pouch and removed the stump and mucous fistula and neatened up the scar below navel. The keyhole surgery to join up was 6 months later when they knew that the pouch was water tight. Quick recovery and back to sport. That was last july and he is a picture of health, swimming and hitting the gym and with a new 6 pack if a little crooked. Confidence returned.

      The good guys at Guy's & St Thomas hospital have operated on his DVT damaged vein in his leg and fitted 3 stents to open up and support his circulation in a new treatment that is on trial. Going well so far. We feel blessed. Onwards and upwards!!

      Sheila.

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    • Posted

      Thank you Sheila sounds like Rob has been on a long journey but so happy for you all that he's back to how he should be as a young man enjoying sport and life !! Glad guys and st Thomas have helped my gastroenterologist is there fab doc too !! Small world hey all the best X
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    • Posted

      Have you decided where you are going for the reversal? Some decisions are easier for girlies than boys as my son had to be advised about the tiny but possible compliction below the waist of the reversal and possible nerve damage. Luckily all was OK. 

      Small world indeed, thank goodness for the internet, we found the treatment ourselves as GP and Hosp hadn't a clue. I spread the word as loads of people are affected. The last 2 years and 2 months have been eventful. 

      Sheila. x

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    • Posted

      I will be having it at the uclh in London as for girls it reduces fertility by 30% so they have asked me to hold off if I want more children which I do so we will see what happens over the year X

      Yes I know what you mean you have to do your homework with this lucky for the Internet never would of found some of you lovely knowledgeable people X

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  • Posted

    Hi Samantha, my son lost hair thickness and would wake up with loads of hair on his pillow after taking high dose steroids. He was very anaemic too as he wasn't eating and wasn't absorbing food and losing blood. He had UC but had his colon removed after it perforated but his disease was severe. He took liquid vitamins with B12 and iron which was easier to digest than the tablets, available at chemist. I did some research online and Vitamin B complex, especially Biotin,  is very good for hair, skin and nails esp if you have been ill. Vit B can be taken in large quantities as it is water soluble and the body absorbs what it needs and the rest gets excreted in the urine. Lots of reviews etc online, buy Vit B from high street or online from a well known place that starts with A, can't say name as gets deleted. It certainly helped him as hair good now, he used a very gentle shampoo too. He still uses as unfortunately got a post surgical DVT and is on warfain and it has same affect. Do take note that IBD, UC sufferers, are more likely to get a DVT after hospital stay, surgery or immobility than others.

    Also have they checked your thyroid function, simple blood test, as can make hair fall out and dry skin?

    Are you on a reducing dosage of steroids?

    Sheila

      

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  • Posted

    Hi Samantha. i think you ought to check with a pharmacist or consultant whether steroids at same time as immunosuppressants have any contra-indications. i was led to believe you shouldnt have both at same time & had to leave a break of few weeks before starting either. maybe worth checking in case its causing your hairloss. xx
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  • Posted

    The infliximab didn't do anything good or bad for me so a bit of a waste of time.

    I'd speak to the specialist and run it past them. I didnt show many symptons either except runny stools and numerous trips to the toilet...

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