My Colitis Is Better But My Hair is Falling Out
So now I am doing much better UC wise.
My tummy is so much better. I am on Imuran and Remicade only now. Now, my side effects from these meds seem to be coming out within the last couple weeks. All of my hair is falling out, big time! My hair is thin anyway and now I get huge clumps of hair out in the shower, on my pillow, etc. I also feel like I want to vomit throughout the day. And right after I get my remicade infusion, I get an odd painful bump on my arm for about a week. Last thing, I am sooo tired. Not sure if it’s these medications or if it’s from tapering off the prednizone, but I can’t seem to make it through a day without a nap of 2 or more hours. So at one end I am so grateful to be feeling better but then again I hate these scary drugs and side effects. I go tomorrow morning to GI and will discuss it with him but I wonder if he will change the medications or if I just have to deal with it.
I need words of encouragement! I am feeling so down, these drugs make me feel not only bad but ugly! First I am swelled up from prednizone and now going bald! I feel I am in a constant struggle with this disease, switching one issue for another. Ugh just having a down month everyone. Thanks for hearing me vent.
Just as a note, I am bad about food, I’m a thin person but can eat a lot and use food as a comfort, so I have issues with trying to accept a diet even though I know food makes my disease worse. I feel like changing my eating is harder than quitting smoking! (Which I have also done!) So I feel like it’s my fault I have to take these drugs and whatnot but it’s not enough to make me change my eating habits. Sigh.
Medications:
Remicade, going on my 4th infusion this month
Hi! My name is Kimberly and I was diagnosed in 2001. I have a great husband and wonderful daughter, 20 months old, along with a doberman and miniature pinscher.
Hey Kimberly,
I’m super sorry you’re dealing with so much right now, and I’m sure the emotional roller coaster coupled with the holiday season doesn’t make it any easier.
I myself don’t have any firsthand experience with Imuran, but in doing a quick search of the site, there’s I came across from a few months back written by Vicki, who’s a professional bike rider, and she too was taking Imuran and as well started noticing hair loss. The whole story is right here:
https://ihaveuc.com/good-bye-imuran/
And there are several comments below it from other readers with some more ideas/ input.
I wish you the best in the coming weeks, and I hope you can still find some time to relax without UC worries over the holidays.
-Adam
it’s definitely the medications. have you read the side effects? all of them can cause hair loss and massive tiredness. i remember when i was on remicade, i was like a zombie. i could not get enough sleep. i also had 3 day headaches after each of my infusions where i couldn’t go anywhere/do anything because my head was throbbing. i haven’t had the hair loss problem but i’m sure it’s embarassing. i noticed that you just started remicade so you’re probably at the minimum dosage right now. if you having these problems right now, i don’t know if they will go away. i only had 5 infusions total.
i don’t know if just diet would put you in remission. i actually haven’t met anyone who’s been put in remission with only diet change, so don’t feel guilty at all for how you eat. if the meds are helping you and you can eat how you want, that is awesome! i HATE having to following a strict SCD/paleo diet and i’m still in a massive flare- it reduces my symptoms some but it definitely isn’t a cure-all.
Hi Kimberly. I am glad your tummy is feeling better, but sorry about all the side effects. My hair came out in fistfulls when I was on prednisone and remecaid. It has finally started growing back, but I had to resort to the surgical option to take care of the UC, so am not on the meds anymore, just lotsa probiotics. It sounds like alot of people on here benefit from the SCD diet & probiotics.
Hi Kimberly,
The bottom line is drugs of any kind are just not good for our bodies. Every drug has side effects, unfortunately. Myself, I will not put any of them into my body any more. I just cannot wrap my head around how bad they can actually make us feel. I was only on asacol for 13 years, probably the most benign of all the UC drugs, (altho, I did, at some point, do some steroid enemas and had terrible side effects from those) and even it gave me horrible side effects. I can only imagine what these immune suppressors would do to me. I can’t even take more than one tylenol, and I can’t feel my legs…lol!
If you feel like you do not want to continue on these drugs…then don’t. It’s not up to your doctor, it is up to you. Always remember that. It’s okay to follow your doctor’s advice if you wish to…we sometimes HAVE to…but YOU have the power over yourself. Not the doctor. Don’t be afraid to tell your doctor exactly how you are feeling and what your side effects are. If your doctor says it isn’t the drugs…beg to differ! YOU are the boss…not your doctor.
Cheers,
Bev
Oh, and AMEN to what Lisa said…PROBIOTICS!! You have to be on them at least! That is all I will take for UC any more, and I have had it for 15 years.
No more drugs for me. They all eventually seem to fail anyway…and who only knows what the long term side effects are???? NOBODY knows…
Bev:)
I have UC and have only gone into remission twice. Once from Imuran and once from probiotics. The first twenty years nothing helped much. Prednisone always regulates me enough to start a new drug/dose and now on second round of Remicade, which is working. Imuran made my hair fall out in beginning, but not for years. I was also very anemic and had some iron infusions. This may stop hair from falling out, as iron loss is a leading cause and common for UC. Immediately start on Nioxin hair kit and should stop falling out in days, give it a week. Once my iron was restored, my hair was too.
Hello Kimberly,
I was on both Imuran and Remicade. My hair fell out like mad. Since the Imuran did not agree with me, I made the decision to stop it. After I quit the Imuran, my hair came back – CURLY!! I took a supplement called “Biotin” which is supposed to be for hair and I think it helped. Now my hair is back like my pre-UC hair.
Remicade worked well for me for months, but started to fail after about a year. I opted to have my colon removed and a permanent ileostomy. If I were younger (I’m 60) I would have had the J-Pouch surgery (Dr. Medwell, Seattle, is a brilliant surgeon) I LOVE living with no UC, but after being very sick for 2+ years, I have developed fybromyalgia which I am working on. When my hair was thinning I got a great short haircut which helped it look thicker.
Best of luck to you. I hope you have a great holiday and a wonderful 2013
Sheila
How much of the Biotin did you take?
Hi everyone, thank you all for your input! I spoke to my doctor and we are going to try to slowly reduce my Imuran dose and see if that will help. Now I have a kidney stone which I have never had before so I’m worried about that, but otherwise I am feeling better. Everything is going to be ok I know. Also my doc is saying within a couple years or so more meds will be coming out that he hopes will have less side effects, we will see. I know in a few months I will be talking to him about coming off these meds and trying to stay in remission another way, I certainly don’t want to be on these long term! Happy Holidays everyone!
That all sounds so great, Kimberly! I hope that down the road, there will be far less dangerous ways of treating and managing UC…like with probiotics and other natural things that our bodies actually thrive on. Wouldn’t that be wonderful?
Right now, they ‘treat’ UC with cancer drugs! Cancer drugs!! We should all be very bothered by that fact.
Have a superb holiday season! Let’s all look forward to the future…and healthier and better ways to manage UC!!
Cheers all:)
Hi, i came across this because of my hair loss. I’m thirteen years old, so you can imagine how hard this is. I’ve been on remicade for two years and docs want to continue me for another. I have not had hair loss, until i got a cataract surgery. They put me on pred. and i’m now tapering off. But ever since then I’ve started loosing hair. Do you know if it stops?
Hey Bev! I know, it is very creepy to take not just one but two drugs that may cause lymphoma. I read of the UC fountations of America site that in a study of 10000 people taking remicade for one year 4-9 of them got cancer. I guess that is a good number to the FDA and whatnot. But not having that immune system bothers me most I think. The site I mention said in that same study 3 in 100 people got serious infections on the meds. Which you could die from seeing as your body can’t fight it off. It’s a battle really, with wanting to take meds so you feel better but knowing it can have dangerous side effects. Even if the risks are small it’s still scary.
Say what??? 4 out of 9 people got cancer who had been previously taking remicade? If that is true, I would not take it. For me, the risk just ain’t worth it! Wow.
That’s really unbelievable that UC is treated with these sorts of drugs. It sounds like a desparate attempt to quell UC symtoms no matter what the cost. Is that what modern medicine as come to?
We really have to take charge of our own bodies it seems to me. We cannot use our bodies as test experiments and/or guinea pigs. We only have one life after all…
Hi Bev. I think she said 4 – 9 people out of ten thousand, not four out of nine *people*.
Auto-immune disease and inflammation are making us more prone to other disorders. So some people’s bodies may tolerate meds better than others – and some of us may get additional illnesses anyway with OR without meds. The body is in a weakened state, of course.
Correlation doesn’t prove cause, then… and while meds are a scary measured risk they might give us the chance to fight to regain our health in every other way we can. I mean diet, lifestyle, exercise and stress management. Read read read, ask ask ask. The responsibility does not end.
Thanks for clarifying Jons…that did seem like a high number of people!
Well said in your post. We are responsible for ourselves, and you are correct…that responsibility never ends.
:)
Hi Kimberly,
I’ve had UC for 5 years now and have been on and off Prednisone the whole time. Whenever I go back on Prednisone my hair starts to fall out a few weeks into the cycle. It can be quite scary since it comes out in large clumps, so I completely understand your pain. However, I find that after I taper off my hair stops falling out and grows back (slowly but surely).
My experience with Prednisone and Imuran is that hair only falls out when I’m taking both drugs, but once I’m only on Imuran it grows back again.
I’m starting Remicade soon, so we’ll see how that goes.
Stay positive!
I lost about a third to a half of my hair after tapering off prednisone. I wasn’t taking anything else because I had a bad reaction to medications that only worsened my initial flare. I was on Pred. for 5 months and as I finished the taper, the hair began to fall. It’s grown back in. My dr. had never heard of hair loss from prednisone so I can’t be sure that was the cause, but I’ve read of others having the same experience. Good luck!!
I was on Prednisone for the second time a few weeks ago and before I started tapering off my hair started to fall out a little at first and then later on clumps at a time. I have been off the Pred for about 3 weeks now and only taking Masalimine and my hair is continuing to fall out. Now I am starting to think it’s the Malsalimine that is causing the hair loss. My dr and all of the pharmacist that I have talked to said that none of these medications cause hair loss, but I know my body and it has to be the medicine. I began taking a multivitamin and also biotin and I haven’t seen a difference yet. I am also only washing my hair every other day because that’s when my hair falls out the most. I am debating on trying to stop my medications cold turkey just so that I can have my hair back. I know how you feel and its especially frustrating when no one is listening/believing you that the hair loss is due to the medication. I am trying to stay strong and not think about it but to a woman hair is everything!
Christine…yes, it is the mesalamine (asacol) that is causing your hair loss most likely. I was on it for 14 years, and I lost a lot of hair, especially the more the dosage was increased.
Now that I am no longer on it, I don’t lose my hair any more!
Cheers,
Bev
:)
I have Crohn’s which is similar to uc. I’m also on Remicade and imuran and my hair is falling out like crazy. I’ve always had long blonde wavy hair that was so thick I had to thin it out when I got haircuts. Now I’m concerned I’ll have no hair.
Aside from that, Remicade and imuran saved my life. I was flaring so badly before. And to address the cancer concern it is unbelievably rare and usually affects young men in their Kate teens and early twenties. The combination of long term immune suppressors does raise that risk in the long run.
I gladly take that risk. I’m only 22 and without them I’d be miserable and probably best dead.
Hi Kimberly,
I am on Remicade and nothing else -and my hair is falling out. Not the clumps like some have mentioned, but noticeably more when I wash it. I have been off of Prednisone for over 3 months so don’t think it could have been that, but you never know! I had such a bad flare in March that the Remicade seems to have given me my life back, but I don’t like any of the side effects. They seem less intrusive into my life than Prednisone side effects, but are still there. I am congested all the time–like having sinusitis constantly. My skin is very very dry; I am sometimes nauseated, tired, and now my memory seems to be affected. I am 67 and know that I am not as sharp as I used to be, but now anything that happens I blame on the Remicade. lol I do worry what will happen if I stop taking it; I really don’t like taking such heavy duty drugs. It isn’t working as well as it did in the beginning (in March) so I have been thinking about stopping for a while now. Best wishes, Carol
Hi,
I was diagnosed with UC in February, according to my GI my case was severe. I was on Prednisone for 2 months the only side effect I had was insomnia and a good appetite. Then I started Remicade in March and after reading all the possible side effects I decided to stop the treatment after the 2nd injection. My hair started to fall and I only notice that a couple weeks ago which means 2 months after stopping Remicade. I also have pimples from my forehead to my neck and it does not seem to go away. Those side effects specially losing my hair are bad and it only makes me feel better about the choice that I made because it could have been way worse if I did not stop it. I did not have any flare-ups yet but I feel good, I changed my diet so no more gluten, sugar, vinegar, high GI food, I reduced my dairy intake and I stopped buying processed food. Everybody says that the diet has nothing to do with UC but I’d like to know how can your body can react like that if the food that we eat is not the culprit? Maybe doctors just want to sell the medications because they actually get bonus for selling those treatment or maybe the food industry does not want us to know what they are killing us with what they are feeding us with. Think about it ;) and maybe you will want to change your diet like I did because I don’t want to ruin my body while trying to fix my UC
hi debou….i have crohns disease and have finished two infusions of the remicade…during the last half hour of the 2nd infusion, i started feeling nauseous and a bit of a scratchy throat..the following day i had diarhea(which i wasn’t doing as of late)..no energy, no appetite, headache etc…i am reading about everyones hair loss and am really freaked about that..i am a performer, so how i look is important for me to get jobs…i am also on Imuran(have been for 9 years)..i understand there is a new drug in the U.S. that was also approved in europe, but of course, we still sit here on our hands up in Canada..it is supposed to have little to no side effects…i don’t know whether to go for my third infusion or not…i feel so tired all the time now(which is not like me) and my memory seems affected as well..why did you really decide to stop the remicade?…as i am torn
Imuran makes hair fall out in clumps. I am devastated. I hate the doctors cause they lie and yes only want to push the drugs. I have severe ulcers on my colon and small intestine and want to get rid of them (if that’s possible) but the Imuran and Entocort they give us for these diseases should be banned. It seems people with Crohn’s and UC are poorly taken care of because of the drugs they prescribe. Imuran increases cancer risk, blood clots and much more. If I didn’t have kids since getting this I feel like I would rather just check out of life.