Hair loss - please help

[JazzieFay]

Im so lost and frustrated and feeling like I have no where to turn...I have lost approx 50% of my hair over the last month which is approx the same time I started Remicade. Thankfully, I had thick hair but no more so Im not sure how much longer I can handle this hair loss before it becomes balding. I am starting to feel super despressed. Im not super full of my appearance but as most people can relate, my hair matters to me. I don't think I can rock bald well...lol. I just want to know what to expect...how long will my hair keep falling out, will it come back, when, what can I do to help the situation, etc. My doctor, although is super awesome at tending to my health, doesn't seem too concerned with my hair as there really is no alternative at this time. I need help I have no where to get this info other than people who have walked in my shoes. Please help. :confused2:

 

[nogutsnoglory]

I'm sorry to hear that, I am also suffering more hair loss but I think it's the methotrexate not the Remicade for me but who knows.

Is your doctor thinking its a side effect of Remicade? Can the dose be adjusted? Might there be a treatment to counteract the hair loss?

 

[carolinefaith14]

I'm sorry to hear about this too. I'm actually going through the same exact thing and I am on Remicade. My mom believes that all my hIr loss might be from the shock of being sick mixed with the meds I used to take. My
Hair is pretty thin now and I've had to cut it so it didn't look at stringy but it's still pretty bad and I started with a ton of hair. My mom and I were thinking of doing a pixie cut when my new hair, which is about two inches now, is long enough for that style. I'm not looking forward to it but as of now it looks terrible.

 

[jkd1111]

I'm so sorry! I've been on Remi for over 9 years now. My dose has just been doubled and the time period shortened to 6 weeks. I about passed out when I went to my hairdresser 2 weeks after that first new dosage and I noticed that every time she ran her fingers thru my hair, it just fell out! I hadn't really noticed it until then, but now I sure do. Shower is full of it every morning. I'm like you, had a full head of thick hair but not so much just 4 short weeks later. I'm hoping this stops like it did the first time around.

 

[JazzieFay]

My doctor said it is a very rare side effect of Remicade and since I wasn't sure if it started before or after my first treatment, stated I may have other "issues" going on and recommended I see my PCP...Im not really accepting it because this is all the "issues" I need! I was wondering the same thing Caroline, if it a combination of being sick and the medication but I just don't know...That is exactly how I feel jkd1111. Everytime I run my fingers through my hair, it just falls out. I know that whatever it takes to manage my Crohn's is necessary, I just wish there was more info to prepare me and how to deal ya know?

 

[FrozenGirl]

I have heard good things about Biotin. Never tried it but I too have hair loss. (Not sure if its from the prednisone or just my lack of absorbing nutrients) and am considered trying it.

 

[nogutsnoglory]

I have also heard good things about Biotin and I think I'll give it a try if not counter indicated.

 

[JazzieFay]

I actually bought a bottle because I heard the same thing. Then my co-worker (who had previously tried it for thinning hair) said the only hair that grew was her mustache so I kind of became reserved! Lol. But everyone else has said good things. I guess I should give it a try.

 

[alev]

I have been on Remicade for almost 4 years and began to lose my hair about 1 1/2 years ago. It progressed to all hair, eyebrows, eyelashes, body hair, etc in a few months. Went to 3 different dermatologists and tried several different treatments with no results. They all said its Alopecia, but the million dollar question is was it caused by Remicade or just that I developed another autoimmune disease. I couldn't stop Remicade because it was helping my Crohn's and I didn't want to rock the boat if it wasn't really the cause of the hair loss. My doctor found some journal article linking Alopecia to Anti-TNF drug usage (Remicade, Humira, Enbrel, etc) and from what the articles said, the hair loss didn't resolve itself until you were off all Anti-TNFs, so switching to a different one wouldn't be any good. I'm starting to flare and it appears I'm building antibodies, so it looks like I'll be stopping Remicade, but the question is what to switch to. My doctor is looking into trying a stool transplant as they have been done for Crohn's with good results. I am very much for it because I'm sick of taking these drugs that are supposed to help me but are basically regulated poisons and end up causing a ton of other issues that are worse than what you are taking it for. I hope the hair loss resolves after I discontinue Remicade.

 

[alev]

One more thing...one of the dermatologists I saw mentioned that I see a hematologist because she said that anemia can cause hair loss. I had been anemic in the past, but didn't think I currently was, however, the dr said that they like to see higher levels of Ferritin in hair loss patients. I'm going to be starting IV iron and hopefully by increasing those numbers that will help with the hair loss too. I don't know if you are anemic or not, but you might want to ask your doctor about that and check your ferritin levels.

 

[alyssa519]

I had the same thing when I first started Remicade and 6MP. My doctor thought it was more my disease causing it versus the medications. It evened out in about 6 months for me, but I definitely have thinner hair than when I started this! Good luck! It's a crummy thing to go to...i can totally relate

 

[Fosterfamily2303]

I have it too..started from day one of my infusion. Its worse the day of infusion..it seems like it slowe
A down a week or two before next infuision but hen starts all over with next infusion. Frustrating!! I also noticed my hair turnjg grey!! I am only 30!!

 

[Ashes1120]

I'm not sure if you still post on here, but I need to find you!!! Your story is my life exactly!!! Except I was on humira, then cimzia. I developed hair loss which turned into alopecia universalis after about 8 months on cimzia. I have been off of it for about 2 months but the million dollar question is what the hell caused this or is it another auntoimmune. How are you today? I know your post was 2 years ago but I'm looking
For any feedback I can get. Thanks in advance!!!

I have been on Remicade for almost 4 years and began to lose my hair about 1 1/2 years ago. It progressed to all hair, eyebrows, eyelashes, body hair, etc in a few months. Went to 3 different dermatologists and tried several different treatments with no results. They all said its Alopecia, but the million dollar question is was it caused by Remicade or just that I developed another autoimmune disease. I couldn't stop Remicade because it was helping my Crohn's and I didn't want to rock the boat if it wasn't really the cause of the hair loss. My doctor found some journal article linking Alopecia to Anti-TNF drug usage (Remicade, Humira, Enbrel, etc) and from what the articles said, the hair loss didn't resolve itself until you were off all Anti-TNFs, so switching to a different one wouldn't be any good. I'm starting to flare and it appears I'm building antibodies, so it looks like I'll be stopping Remicade, but the question is what to switch to. My doctor is looking into trying a stool transplant as they have been done for Crohn's with good results. I am very much for it because I'm sick of taking these drugs that are supposed to help me but are basically regulated poisons and end up causing a ton of other issues that are worse than what you are taking it for. I hope the hair loss resolves after I discontinue Remicade.

 

[ronroush7]

I'm not sure if you still post on here, but I need to find you!!! Your story is my life exactly!!! Except I was on humira, then cimzia. I developed hair loss which turned into alopecia universalis after about 8 months on cimzia. I have been off of it for about 2 months but the million dollar question is what the hell caused this or is it another auntoimmune. How are you today? I know your post was 2 years ago but I'm looking
For any feedback I can get. Thanks in advance!!!

Three or four years ago, I went to a dermatologist because I had a lesion in my scalp which turned out was caused by Remicade. She told me of another patient of hers with Crohns Disease who had their hair fall out as a result of Humira. You might consult with a dermatologist.

 

[Ashes1120]

Oh I've consulted with more dermatologists and specialists than you can imagine. Unfortunately dermatology is a guessing game. I'm currently seeing a specialist in Boston and trying topical steroids.

 

[ronroush7]

Best to you.

 

[Katie C]

Hi JazzieFay,

First let me say, I am so sorry to hear about your struggle I lost 50% of my hair when I
started Entyvio (same family as Rem/Humira). Like you, I have always had extremely thick
hair to the point where it drove me nuts - but once I started losing it I felt so depressed.

Some tips I have found:
- hair skin and nails vitamins (I like the gummies because I already take a ton of pills)
- try switching to a less harsh shampoo (I use Honest Company)
- massage your scalp to help stimulate growth
- eat Brazil Nuts (they're high in selinium, you only need to eat 4/day)
- blow dry your hair (low heat!) upside down to relieve the follicles


Ultimately, it I think it was switching medications that really worked for me. My hair is still
growing back (its been about a year) but have faith! I wish you the best - and remember,
you're a fighter and you are a beautiful soul :heart:

______________________________________________________________________________

26 years old - Crohn's since 2002 / Ulcerative since 2008
(Also: Thyroid Cancer 2003 & Rhuematoid Arthritis 2010
Currently: Methotrexate & Cimzia for Crohn's/UC
Tried: Remicade, Humira, Entyvio, Purinthol, and the likes

Resection of Colon in Sept. 2008

 

[warrior2]

wow. very interesting thread. glad i stopped by. will offer my 2 cents worth.

Am new to site, just joined like many of you, looking for answers..

I am 55..this year, (2016) had a pulmonary embolisum (P.E) in Feb. With crohns, they were concerned about aggressive blood thinners, and bleeding I was already having at that time.. Put me warfarin (WARF). Found large clots throughout right leg. some in lung , surgically installed a "filter" in pelvis area to prevent clots from traveling (IVF) North to heart, lungs. Most people w/PE usually don't make it. 1 week in hospital. 3 moths later, blood pressure (BP) goes south due to complete blood loss from "some kind of leak internals".. transfusions, plasma and blood..nutrients, many bags hanging from that i.v. pole. 10 days in hospital when I noticed hair loss. thinning, not falling out, but flat , thin hair. had that Bart Simpson style, and went like the moheave dessert no time FLAT. I believe the stress and med combo is enough to blame. I began remicade in May, tho at the same time for the PE. so that is likely a cause too but now after my fifth infusion, hair still doesn't seem right.. thin...is all I can say but my hairstylist said he's seen this .."medications".

Re: my bleed out then? stopped WARF. had endo and colonscopy. Dr. said he didn't see any bleed areas. huh? It's time for new set of eyes. Enemas, oral pred, isn't fixing anything. IT's a band aid. Where is the bleed at?

You know you have a right to answers and if your doctor isn't giving you any or wrong answers, clearly to must find another doctor, educate yourself and advocate. I am tired of being a guinea pig. Sounds like we are all stuck in the mud out here.

 

[warrior2]

I hope my first post went through. Good luck to all and thanks for being here.

replied backwards. story of my life.

 

[elliethomas]

Any deficiency can cause problems like dryness, brittleness, dandruff and eventually the loss of hair. On the other end, there are many foods like banana, cucumber, soya bean, oatmeal, dark green leafy that can make your hair healthy and strong. Mostly hair is largely made up of protein. In addition, adding healthier food in your daily diet will cause a distinction in hairs.

 

[warrior2]

alev, pls explain what stool transplant is?

 

[ronroush7]

alev, pls explain what stool transplant is?

It is a procedure where a stool sample from a donor(usually a family member) is implanted into a patient.

 

[gardeniagirl]

My son who was diagnosed with Crohns over ten years ago started loosing his hair when he started Remicade... due to the fact that the oral meds were not working. He has been through most of the biologics and has continued to loose his hair. We wondered for years whether it was the disease or the biologics. Last year he started AMAT Therapy (Antibiotic Therapy) started feeling much better and his hair started to thicken. Unfortunately he had to stop the antibiotic therapy...but continued with UVLrx Treatments that he was also receiving. His recent colonoscopy showed uncontrolled inflammation through much of his colon as well as two fistulas and his hair is starting to thin more than ever before. So in case...I would say it is the disease that causes him to loose his hair.

 

[hotrodharmon]

I've been on Remicade now for 3 years. the first year i looked like someone took an ice cream scoop to the sides of my head. I tried everything i could think of to get my hair back from rubbing onion on my hair to minoxidil.
But this last year I found a treatment that seemed to work for me.

1.I get tresemme conditioner and put half of it into another bottle.
2. I add coffee to the top of both bottle.
3. I mix in 2-4 table spoons caffeine powder and shake it up Intel its fully mixed.
I then use the conditioner as a leave in conditioner so as I sweet the caffeine. continues to feed my hair.

 

[twob]

My son 25 just got diagnosed with Alopecia Areata( auto immunuie disease). he has been on remicade for 7 years and just started to lose his hair this summer. The dermatologist said once you have an auto immune disease you can get another easily. She is giving him injections into his scalp and told him to use rogaine as well. He will get the injections once a month ( about 30- 50 each time). She said she can get his hair to grow back and its all brought on by stress too. Basically its a flair on your scalp. It takes about 3- 6 months for new hair to grow so it is a slow process. She put him in a study, said there are several out there studying auto immune diseases, hair loss, Inflammation, with TNF drugs etc... Lets hope it grows back!!

 

[Tillysmama]

I have been on 3 different meds at different times during the course of my disease. Every one of them has caused hair loss. None as much as Entyvio. I have lost 60-70% of my hair volume. The doctor says he doesn’t think it’s the medication. Funny though how the hair loss didn’t start until the first day of infusion. He referred me to dermatology. They said it is age related hair loss. I am so frustrated with the doctors not admitting to knowing these drugs make people lose their hair. The only way to get it to grow back is to stop the drug which isn’t an option for most of us. I am heartbroken & so miss my long shiny blonde hair. I take a ton of biotin & have tried the hair regrowth systems & nothing really works. I guess I have to resign myself to no longer feeling beautiful.

 

[Scipio]

In my experience doctors (no matter which doctor) will always say that they don't think the hair loss was caused by the drug they prescribed (no matter which drug) no matter how closely the start of the hair loss is linked to beginning the drug.