Rheumatoid Arthritis and Hair Loss
Does RA Disease cause hair loss?
Hair loss is one of the things you frequently hear about in the RA community. Patients have two questions:
- What’s causing my hair loss?
- What can I do about it?
Hair loss can be a side effect of Rheumatoid Arthritis treatment
Some DMARDs (disease modifying antirheumatic drugs) list hair loss as a possible side effect. With methotrexate, hair loss can usually be mitigated by taking higher doses of folic acid. However, some Rheumatoid Arthritis treatments are still new enough that long term side effects might not be known.
What else could cause hair loss in people with Rheumatoid Arthritis?
People living with RA can have hair loss related to other common causes such as dietary deficiencies or hormonal imbalances. And it’s no coincidence this happens to them more frequently because living with RA increases the odds of having other such conditions. For example, RA patients are more likely to have an autoimmune thyroid disease as a co-morbidity and more likely to suffer from a variety of vitamin or mineral deficiencies secondary to the RA.
What helps hair loss with RA?
Some patients quit medications due to hair loss. Others have found supplements or shampoos that help such as biotin (a B vitamin). It would always be a good idea to run some basic blood tests with a primary doctor to see if a treatable cause can be found.
Can hair loss be caused by Rheumatoid Arthritis?
Most sources do not list hair loss as a symptom of Rheumatoid Arthritis. I’m still doubtful that the disease is to blame in a direct way since it’s rarely mentioned as a symptom. However, if RA is to blame, it would not be the first time the literature was wrong. (There are clear reasons for that syndrome, but that’s for another post.)
So, let’s approach this with an open mind.
- What is your experience with hair loss and RA? Some, none, temporary, permanent?
- Was any hair loss obviously connected to a medication side effect?
- What has helped you with a hair loss problem?
My experience with RA and hair loss:
While taking methotrexate, I had noticeable hair loss a couple of times, but it was temporary. I was very surprised when I was off methotrexate for a few months and the hair loss was worse than ever. I have a history of severe thyroid disease, so I tend to blame that, but there were no other thyroid symptoms.
Lucky for me, I started with enough hair for two people so I can make it look okay. Unless the wind blows. There are tons of shorter pieces all through my head where it’s trying to grow back. I take that as a good sign, even while the loss continues.
Recommended reading
- Solid points in a light-hearted tone: A Rheum Full of Contradictions
- Folic Acid with Methotrexate: the Debate
- How Rheumatoid Arthritis Pain Affects Women’s Lives
- Rheumatoid Arthritis Diet, Part 2: Ten Easy Tips
I have experience with hair loss. I chaulked it up to the mtx as well but when I was off of it for a while I still lost hair. I have low Free T4 thyroid issues so maybe it is that but thank you for the biotin suggestion. I will try that! I hope it helps
Low T4 is a good explanation. I hope they can get that balanced for you – either way – it’s your best shot to try to get these things in line – a constant struggle for me too so I know what u r up against. Good luck.
Hi Kelly, I have very weak hair and lose a lot, I believe due to the mtx, I’ve been on it for around 14 yrs now roughly. My hair falls out very, very easily & I’ve recently even experienced it breaking off where I’ve been twiddling in one spot. I’m no longer twiddling for sure!! I just try to keep my hair in the best possible condition I can, I use regular intensive masks/treatments and I try to stick to shampoos & conditioners that help to strengthen hair and reduce weakness. I do have my hair chemically straightened once a year in the salon to make looking after my hair easier (for my arms etc), & this reduces greatly the amount of heat I have to use on a daily basis. It’s pretty gross to be honest the amount of hair I actually hoover up.
All sounds so familiar. There are lumps of my hair all around. We cut off a few inches to make it look thicker …& reduce the litter. Like you, I do very little to my hair to stress it, actually only using a dryer about 2ce per month now. I think some vitamins may be in order – I’ve been lax with that lately. And better eating – I have no appetite often from my RA fever. Amazing the little things we have in common.
Though I had joint pain for a few years before my first big flare, as my first major flare began, my hair fell out in huge clumps. We were on vacation, and suddenly my brush was full of hair. Within a week I went from thick, full hair to very thin hair with a visible bald spot on the front of my head. My hairdresser could not believe the amount of hair I’d lost in such a short time. After diagnosis and starting meds, my hair eventually grew back–but it took about 2 years. Occasionally now when I flare, I’ll lose hair again. Have also lost some due to mtx, but never to that same level again. I rarely read of anyone else with this same symptom.
I think the “occasionally now when I flare” part is what matters. If you lose hair when you flare, it may be the RA. Just doing an informal poll here to see what we notice about ourselves. I have been in constant flare for a few years now, so it’s hard for me to blame the RA since the RA is always the same, right? It it good to hear that treatment actually helped your hair loss!
Auto-Immune Thyroid was the cause previously when this was happening but my thyroid tests are coming back fine (finally got my medications for that to stabilize it). It started up again when I started taking MTX. My Dr. had me count one days worth of hair lost and it was 253 hairs fallen out in a day and those are just the ones I was aware of. Anything over 200 hairs/day is considered hair loss under that number is considered normal. I am very thankful that I have always had such thick hair. I can only imagine what it would be like with out the 5mg of folic acid I take daily! Already taking supplements and vitamins. Others have suggested Biotin so I will give that a try.
counting is a good idea. I have saved piles to show the hairdresser too.
Right on the subject today Kelly! My Rheumy says none of my meds cause my hair loss! It’s very hard when a woman looses her hair.Its all over the house.When i cook,if i cook,I wear a scarf.I would be mortified if someone found a hair in my food! I see there is a fellow Warrior who used vitamin for that so this is what im doing. Still waiting for it to work. Also i have to use a flat iron now. Just in front it gets curley and fuzzy. oh well i know there are worse things to have. P.S. You look great in the makeup Kelly.
Thank you Judi.
My hair has been falling out since being on MTX, but I think it could also be from Plaqunil since I’ve been on that since I first saw my rheumatologist, which is 13 years now. I had kept it shoulder length, but every time I washed my hair, I had hair tangled in my hands, then when I combed it, lots of it would come out at that time. I had always had straight hair, and a few weeks ago, I decided to cut it shorter and layered, so there wouldn’t be so much pressure on it when I combed it, or put it up. Now, I have a head full of curls, and it looks like I got a perm! I have been asked by a few different people if I got a perm, but I didn’t. I think the meds may have changed my hair to curly, but I don’t know for sure. It makes it easier to do now, I can just scrunch it and go!
I am on 30 mg MTX weekly, 1 mg of folic acid daily, and Humira injections every 2 weeks. Although I have noticed a little thinning of my hair – I assume from the MTX – the main thing is that it has become extremely curly. Now this may sound like a really nice thing for a woman, but from someone who has always had very thick, course hair, the only way I can manage it now is by keeping it cut really short.
Hi Angie, I’ve met very few at that mtx dose. When mine got to 25mg weekly, that is when the folic had to be increased to 2 mg. If side effects are bad, you could ask your doc if more folic would help.
The person that does my hair has noticed a definate change in my hair. It breaks off easier and I lost most of my curl. The whole texture of my hair has changed. She said it was the meds that I take. UGGG. You really can’t catch a break with RA!
I have losing my hair now for a few months. I find I ironic I was just searching the Internet last night looking for shampoo or something to slow it down. I started on mtx and no problem. Then added humira and then it was slowly falling out. When the rhemy added plaquinal to the mix it has been falling out by the handful. Any suggestions that anyone else has tried would be greatly appreciated.
Hi Crystal, I wish there were a magic answer. I tend to think – try everything if you aren’t sure what is the cause. So, you could ask if the folic acid could be increased, or the methotrexate dose could be split in two days (sometimes done to reduce side effects) or look for vitamin deficiencies or anemia. Another thing it can be is stress. Or hormones – such as thyroid – or menapause. What worked for me with methotrexate – was waiting it out. I hope it stops soon for you.
Since Ive been on Arava, I noticed my hair has gotten reallythin on top of my head, my rheummy yesterday said to start taking folic acid again.
I had major hair loss about 6 years ago when my thyroid went whacko (something called Hashitoxicosis) that last about 6 months. Three years ago I started taking Plaquenil and my hair fell out again and turned curly. Now on MTX and there it goes again. I am taking 2 mgs. folic acid and 100 mg. biotin. It did seem that the hair loss slowed down after I was on MTX for about 3 mos. — but when.my dose was increased to 20 mg. It started again. I just wear my hair really short and try not to worry about it.
It’s kind of hard for me to tell, because I am having hair loss due to menopause. I did notice that it got worse when I started taking MTX. I started taking biotin a few weeks ago, and I thought it was helping, but my hair brush isn’t so convinced this week. I have noticed that some is growing back, though, at least in the front where I can see it. Thinking of getting bangs to hide that lol. Hubs tells me that he can tell that I’m losing hair at my part and in the back part of my part, if that makes sense, but if he keeps it up, he’s gonna get a smack, because he tells me that people who are together start looking alike (he is almost completely bald on the top). lol. grr. 🙂
P.S. I’m one of the ones who actually has flares off and on and not 24/7. I do have pain between flares, but the flares are my nightmares. I will keep an eye on my brush during those times, if it happens again. I am hoping with all I have that the mtx is starting to work and that I won’t have any more flares, but if I do, I will pay attention.
I was diagnosed with RA about 16 months ago. Have been on a number of medications to help get it under control. I have always had thin hair. I am now taking Plaquenil, Arava and Orencia infusions and hair is getting even thinner. I am seriously thinking about getting a wig. I am beginning to look like a chemo patient. I am really embarrassed by my lack of hair! I have tried many shampoos and vitamins. Nothing seems to make a difference. Would love to hear if someone found something that works!!
Like Trill, my flares aren’t 24/7 right now (while I do have every day pain, I can still tell the difference between that and a true flare). I’m not currently medicated for the RA, nor in a flare, and my hair is still really dry and breakage prone (before the RA I had oily hair issues), but not falling out. Once I start flaring, hair will come off in handfuls as I brush it or pull it into a ponytail. When I’m on a biologic it does that constantly, flare or no flare. Also, like several others, I started out with stick straight fine hair and now it’s veering towards curly.
I think two things have helped my hair loss: extremely high doses of vitamin D and using only sulfate-free shampoo with sulfate-free conditioner only when needed (every 2-3 days). I also take my folate. It’s still limp and fine with some loss, but much better.
That gives me hope. My D is low so maybe as I start that it will help. I don’t wash frequently either, so I know that’s not it. Where do u buy your shampoo?
You can get good and fairly inexpensive sulfate-free shampoos at regular retailers like Target or you can indulge on go for ones like Aveda Shampure. I personally love Tigi Bed Head’s line called Self Absorbed. I think they just renamed it though. It’s the orange bottle. I use as little shampoo as possible then loads of conditioner. I think Dove makes a pure, sulfate-free shampoo line too. Glad to be of some help.
I agree with Lisa. I have found that switching to a sulfate-free shampoo helps smooth hair texture & frizzies from hair loss! Even if we only shampoo once a week, anything we can do to smooth the texture and not strip hair of all its moisture is a good idea. I find that L’Oreal EverPure is a great line; I use the volumizing one since I have fine, wavy hair. CVS has a great generic version of this line, too!
I noticed hair loss after I started the Methotrexate. Every time I would shower I would notice it or when I brushed my hair the brush was always full of hair. I don’t wash my hair everyday since being on the methotrexate. mainly because I am afraid of losing so much of it. I never thought of the vitamin D like Lisa talks about. I do take it everyday just possibly need a high amount to see if it will help me. Something to speak w/rheumy about. Also since being on the Methotrexate my hair is lifeless and dull. Even when it’s clean it looks awful. I am wondering if this is just me or is it common with taking Methotrexate.
Vitamin D is often low w/ RA patients and they have done some studies about it over the last few years. But I’m curious like you are if that is part of my hair loss problem right now.
My doc specifically told me that methotrexate may cause hair loss and that was a reason some people stopped taking it. I have really thick hair and started to notice hair loss while on the drug. Once I quit, the hair loss tapered off then stopped altogether.
A definite increase in hair loss since being on 25 mg MTX + 5 mg Leucovorin. Just approved to start Simponi – I have visions of going from now “wispy” hair to “bald”. I have always used hairspray (almost liquid cement) and I find this causes major hairloss when brushed out. Also extremely low vitamin D level – seems to be a common thread.
Plaquenil caused the hair to fall out alot. Which is weird because my mom has discoid lupus and with that, baldness. They gave her plaquenil to restore her hair! I then switched to Arava and that also resulted in hair loss. I had some issues with a bad color job that burned my hair several years ago. It was pretty bad.
I take a little extra folic acid each week which seems to offset the loss of hair and I have to say that my hair is now about as good as it’s been since being diagnosed 13 years ago. I use better shampoos now – Matrix/biolage. I find that it’s worth it – my hair is SO much better with the better shampoos. I don’t blow dry every day and I no longer wash it every day. I wear a lot of twists in the back.
I’ve had RA for 11 years, MTX since diagnosis. I find that my hair gets thin mostly when my iron levels are down. I tend to be anemic. There are various reasons for this but the answer is to take in more iron. Food is best, but a good multivitamin with iron is good too. I used to take Prenatal vitamins because of the higher iron level in them and they were easier on the stomach than iron pills.
wow- I have been experiencing a lot of hair loss lately in conjunction with extreme pain too- Probably the worst flare & the longest I’ve ever had. I have experienced hair loss previously when I started taking Mtx right after dx but it got better when I got off of the mtx. It took 3-4 years along with better diet, prenatal vitamins, iron (i tend to be anemic also) and trial + error on shampoos etc- The best shampoo I’ve found is Wen by Chaz Dean-sulfate free etc. in the tea tree formulation to stimulate the scalp & it has helped with my poor dry itchy scalp which was previously oily. I don’t have enough hair to lose either so I appreciate the advice on the Biotin!
Best wishes to all of you & blessings <3
I am on Enbrel and Plaquenil, and my hair has become extremely thin. Like a previous writer, I’m staring into the possibility of needing a wig sometime in the future if this continues. I take folic acid and Vitamin D. I keep my hair extremely short to limit the stress on it.
I’ve had some light hair loss with the MTX but I have very thick hair to begin with so, so far it’s been okay. The crazy thing is that just when my symptoms started my hair suddenly became curly as all get out. Where I used to have only a slight wave it now looks like I have a perm! Nothing to do about that! At that time I was years past menopause and taking no meds for my RA. I can only blame the RA.
What is your experience with hair loss and RA? Some, none, temporary, permanent?
–I wish my hair loss was temporary, but it has been happening for a while, even before MTX.
Was any hair loss obviously connected to a medication side effect?
–I had some hair loss before my Dx with RA. I wrote it off as the “normal” hair loss. But after Mtx – I’ve noticed that just running my fingers through my hair produces a LOT of hair, and that is throughout the day. Mondays seem to be the worst day, but it never stops.
What has helped you with a hair loss problem? I’ve been bumped up to 3mg of Folic Acid, but even that didn’t help. So, I’m not too sure what is going on with it.
I was diagnosed with RA 25 & “Very thick Hair” years ago. I would have to say that my hair started thinning slowly 10-15 yrs into my diagnosis but at that time I was not on Mtx. For the past 2 yrs. my hair has become thinner, dull and basically “stringy’ looking. Just last week I noticed a visible bald spot, about the size of a quarter on the back/crown of my head. I have been on Mtx for the past 6 months and I feel that it is a combination of hormones, aging and the Mtx just tops it off. With the known side effect of Mtx being hair loss (as well as, adding to my already existing fatigue) mixed with my extreme vanity of aging etc. I stopped the Mtx, just to see what my hair does despite knowing this is detrimental to my RA tx. but I am willing to take the gamble for now.
I too have been experiencing hair loss. I can say that mine started when MTX was introduced into my system. And, I too, had enough hair for 2 ppl when I started. I have noticed it getting thinner now though. It seems as if it goes through stages… I’ll be grabbing handfulls of hair one week and nothing the next. Just another weird thing about this disease and the medications that go along with it… take care Kelly… you will ALWAYS be beautiful. We have to remember, true beauty is inside us, its what makes us US. <3
Oh you are so sweet!! This thing really gives us perspective, doesn’t it? I can tell so easily because it takes 40 minutes instead of 1.5 hrs to dry it. There’s not much to it – so it’s easier – but I only do that a couple times a month so the hair dryer/brush is not what is hurting it. I jsut sit here and watch it fall all day. 😛
I’ve had hair loss for about seven years now (good thing it was thick to begin with). It started when I had first had some RA symptoms, long before I was diagnosed, and has continued at a steady rate. I changed shampoos, washed it less frequently, got my hair cut really short and stopped coloring my hair, all to no avail. I’ve recently started MTX and so far haven’t seen any increase in my hair loss – and really hope it doesn’t get worse. I’m currently on 1mg folic acid daily, 2000 IU Vit D3 and will start taking biotin this week. I feel for any woman with hair loss, it’s a hard thing to bear, especially on top of RA. Best of luck to all.
I have been having hair loss linked to the Biologics…I am on my 7th one and have had hair loss with all of them…It is much worse anytime I am on an infusion vs. injectable…I am currently taking half doses of Actemra due to liver problems but my hair is continuing to fall out…I have tried vitamins to no avail…
Jewell
Jewell, I don’t doubt you if your and your docs say it’s caused by the meds. But I hope they also have looked at every other thing that could be causing it – just in case something else is wrong. Hairloss is a sign of so many different problems. Sorry about what you are going through.
I have experienced hair loss, but my new rheumy, who I really do like, said that it had nothing to do with my RA. I am African American and am wearing my hair natural(no chemical processing) because 1)its adorable & 2)my RA hands did not like flat irons. I thought that my hair would be safe but its coming out like crazy. I dont really know what to do; the thought of going to another doc about my hair makes me cringe. Im taking vitamins with Biotin and using all natural hair products. I’ll keep yall posted!
I’m sorry about the hair loss Dee – I hope it stops soon! Keep trying things – lots of ideas in the comments here. btw: I love natural African hair – I had a friend who used to wear wigs only to church, but and then her natural hair on other days & I always wanted to touch it when she hugged me – it’s so soft!
I began Mthx at the beginning of this year, 5 years past menopause tho still getting hot flashes. In July began bi-monthly infusions of Remicade. I believe my hair starting thinning at the beginning of the summer which, I believe, coincided with the normal 6-month hair growth cycle. I still attributed the loss to the Mthx, not the infusion. But my doc doesn’t confirm, so I am not really sure. After reading the posts it would seem it is the Mthx. Thank goodness I had a lot of hair but no one can stand to lose any!This is a wonderful site. Thanks, Kelly. Anyone else taking my same combo? I will up my folic acid and Vit D.
Lots of people are on that combination – usually the mtx is blamed – but as my own experience showed, we can have other issues – the RA or other issues that are secondary to the RA which can be the cause. I’ve just gone on D, too – so maybe that will help stop it.
I take 10,000 IU of D3 and 1200 mcg of folic acid daily. The doc said these do not accumulate in your body and will be excreted (I assume as long as your kidneys and liver are healthy). I also take iron, but never go over recommended doses as that can become toxic. If I miss even one day, I can tell the difference in my hair. Since I am not a doctor, I must say this is what I do, but you should check with your doc first.
Hi Lisa,
Do you get your Vit D levels checked regularly? Folic acid is excreted daily but Vit D is fat-soluble and will accumulate in your body. 10,000iu daily is a huge dose so it would be good to get it checked periodically to make sure it is not at toxic levels. Like anything else, too much may not be safe…
I didn’t start having hair loss issues until I’d been off the MTX for about a month. I thought since I’d been off it for a while the hair loss would slow, but it hasn’t, its gotten worse. I used to have very thick hair so at least its not noticeable yet, but with the handfuls that come out every time I wash my hair . . . I no longer comb my hair, just use my fingers, but I am not sure if it helps or not. I had one huge flare that lasted a week, and since then, I seem to always be in a flare, so I couldn’t say if it gets worse with flares or better when not flaring.
I think it is the RA, since I’m not controlled yet. It could also be a med side effect — I’m on Enbril and my eczema has become out of control, which is a listed side effect of Enbril. I wonder if Enbrel could also effect other parts of the integumentary system?
I, too, experience hair loss. It was really bad when I was on Arava. Now I am on Orencia infusions and here we go again. I have fine hair and blonde. I take 2000 mg Vitamin D, 2 mg folic acid, 5000 biotin, 1000mcg B12, 500 mg Vitamin C. I think I had rather shave my head and wear a wig than watch it all fall out each day. RA is bad enough. I have always been a person that washed my hair each day and put on makeup even if I was staying home. The dr says Orencia doesn’t list hair loss as a side effect, but it is. Actemra is next on my list to try. I know when the BIG hair loss is coming because my scalp tingles and is itchy…..Thank to all of you for your posts! Sometimes you just think you are going crazy…..
The last post mentioned tingles and itch occurs before a big hair loss. I wondered if anyone else has noticed the same thing and if the use of tree tea oil or a coal tar shampoo to stop the itch will also stop the hair loss?
I’ve also experienced the hair loss but it seemed to come under control after a few months. My biggest problem is that my hair won’t take color normally. It drives me and my hairdresser nuts as the color comes out differently every time and sometimes does very strange shades. Does anyone else have this problem?
Hair started falling out 3 years ago before being diagnosed with RA. Today, still falling out by the handfuls on a daily basis, hate cooking due to hair falling in the pan.
I take Placquenil, sulfasalozine, 50 MG of prednisone, 50,000 I.U of vitamin D weekly,Biotin 5 times a day, prenatal vitamin daily and come to the conclusion I am doomed to be bald. Now the Rheumy wants to put me on Arava or Embrel, I have read the warnings and fear the drugs. When I questioned him about the hair loss, his comment was “no RA doesn’t cause hair loss.”
I am allergic to the mtx so no chance of it again. People who knew me when I had hair just shake their heads. Have had punch biopsies on my scalp, nothing wrong, 3 dermatologists- nothing wrong, so yes I do believe the hair loss is from RA.
Have tried Nutri-Ox shampoo and several other hair products helped very little. Now I just rinse it in warm water.
I honestly feel that the Doctors could care less if all the hair falls out. After all it’s not their head that they are looking at in the mirror every day.
Three years ago I couldn’t get a comb through my hair, now I don’t need a comb for my hair. So good luck ladies. All of the drugs for RA will cause some form of hair loss as well as the disease.
Hi Kathy,
I also believe that it is the combination of the drugs and the disease that cause hair loss. Amazing that despite all of us who have dealt with this, the physicians seem to not know about it!! We need to keep educating them!
I also experienced the loss of about 50% of my hair after starting Rituxan, having been on MTX and prednisone for more than 3 years and trying Enbrel, Humira and Remicade. I increased my folic asic to 3mg per day and also take Biotin 5000 mcg per day. Because I am also vitamin D insufficient I take 3000iu of Vitamin D daily. At this point my hair has grown back, curly now when I always had straight hair! I am still taking Rituxan every 4 months and I am not in remission yet, but more functional. This is such a process of experimentation with everything to see what works for each person! Keep trying!!! 🙂
Found a Dermatologist who is willing to stick with me and doesn’t think I’m stupid.
Had two punch biopsies done yesterday for a re-occuring rash. I have been suspecting Lupus for some time and the Rheumy says no, it’s not a Lupus rash, well the Dermatologists feels differently.
Has sent the Biopsies to the Cleveland Institute instead of a local lab. Maybe I will get some answers now.
I wish I had more time to start from the beginning of the lousy road and explain what I have experienced in the last three years, the loss of hair is only the beginning.
I want to add my .02 cents to the discussion. About 8 years ago, at the time I first experienced the symptoms that eventually led to my RA diagnosis, I started having hair loss. I’ve always had thick hair and had never lost any before that, not even during my pregnancies. I don’t have lupus or thyroid disease, so I must conclude that RA is responsible for my hair loss (I now have about 1/2 the hair I used to have – still enough to cover my head so I’m lucky). Interestingly enough, my hair loss has slowed down considerably after being on MTX for seven months. Go figure!
i am a 60 year old, 3 year rheumatoid patient and am on methotrexate, folic acid tablets and cimzia injections. oddly, my hair growth is rank such that i need to schedule haircuts more frequently. i consue multiple supplements and vitamins 4 times daily and eat a very healthful diet. perhaps that is what is offsetting any hair issues.
Interesting topic. I’ve experienced hair loss and wanted to blame it on my RA or the Plaquenil. I am getting noticeably thin in the front near my part. Ah well, short and sexy may be the way to go. Lots of gel and spikes. Just call me a swinging granny.
Early in my life with Rheumatoid Disease, I had very short hair except for a small braided “tail”. After getting rid of all my Western shirts (couldn’t snap or unsnap the fasteners), dressy shoes I’d never wear again, etc. one day I took the kitchen shears to my “tail” as I couldn’t stand to braid it and it was looking too untidy. Short hair can be easier to deal with. For my first few months (I’m fortunate enough to have some good response to DMARDs), it was near torture to sit in the barber chair for my (blessedly brief) haircuts (don’t even ask about the dentist chair)!
We have been told that very high inflammation levels can cause the hair to fall out. Emily’s started with the Dermatomyositis. I assumed that it was due to MTX, but her rheumies said that it was because her inflammation was so high. It did stop for a while once we got her inflammation down. Of course, now it’s thinning due to Prednisone…..
Wait guys, you need to be careful! Vitamins K.A.D and E (KADE) are fat soluable vitamins and you can overdose on them. Be very careful with any vitamin or mineral that is not water soluable, eg. all your B vitamins. Overdosing on fat soluables can cause liver failure among many things and cause a whole host of problems you didn’t bargain for. I started using the nutribullet, and throw all sorts of raw fruits and vegetables in there every day. My hair is really fine, thin, and brittle and I am on thyroid medication. I’m going off the methotrexate to see if that eases up on the hair loss. It’s pretty disconcerting to see half a head of hair floating in the bathtub, or actual chords of hair coming out in your hand like rope. Ahhhh!
I’ve had hairloss from thyroid diseaese before (been diagnosed since age 15), but also hairloss when thyroid meds are too high. So just one more thing to check into – I know how it feels when you are just trying to get it to STOP!
I have had a huge amount of hair loss. I felt like I was losing some of it before I went on methotrexate, but, now every week my hair is getting thinner and thinner. I take folic acid twice a day and a multi-vitamin.
My hairstylist said she had to cut my hair really short, otherwise it would pull down the hair and the “holes” would be obvious. I would like a wig, but they are so expensive. Why do cancer patients get financial help with wigs and not RA patients? I look so terrible that I am embarrassed to go to my husband’s company Christmas party next week. Help! PS. I already spend $53 dollars on volumizing products. I feel like a freak.
Hi Jenny, I’m also looking at wigs and I’m shocked at the price! I don’t know if it’s the RA or the meds – hair loss really bad with Arava – but it never seems to stop. I take all sorts of vitamines/biotin, hair products, but now it’s just a question of saving up for the wig… Good luck x
I posted last April that I had hair loss for several years before being dx’ed with RA. I stopped coloring my hair and cut it short with no improvement. The fallout slowed down after being on MTX and plaquenil for a few months, then gradually began increasing again, to the point that I could see balding areas. Someone suggested trying Nioxin products, so I started using System I shampoo and conditioner 3 months ago and my hair loss has stopped. I’m keeping fingers crossed that it continues to work. Has anyone else had good results with these products?
I was diagnosed in 1996. In the first 6 months with the disease, I had massive shedding – I thought I would go bald. I was NOT on any medications then, so I can’t blame anything other than the disease. At that time, the Arthritis Foundation’s website listed hair loss as a potential symptom of RA. My doctor said that anytime the immune system’s inflammatory response is triggered, some hair loss can be expected – people shed some even when they have a cold. However, he didn’t think large amounts was typical. My response – a little over years equals a lot.
I am currently experiencing my second round of excessive hair loss. I am blessed with a thick head of hair so it is not visibly noticable at this point, but my drain clogs daily and washing my hair is depressing and freightening.
In addition to RA I also have autoimmune thyroid disease (not sure which came first but suspect that I’d been symptomatic for several years prior to diagnosis.) I take Nature Throid, Plaquenil, Sulfasalazine and Voltaren and 1mg of Folic Acid daily.
I will try some of the helpful ideas posted here and wish you all a happy, pain-free day.
Sonia, hi. When I wrote this article, I wasn’t sure the cause of that season of intense hairloss. Like you, I could hide it for a long time because I have so much to begin with. I did lose some hair early on with methotrexate & that evened out after a while. Do you take mtx?
I’m not sure if this story will help you but maybe it will help someone if thyroid is an issue –
Eventually, when other symptoms were more obvious, we realized my thyroid meds were off. The pharmacy had replaced my Cytomel with a generic that was stronger than the brand. Until I finally had headaches and heart palpitations I wasn’t sure if that caused the hairloss, even though I’ve had thyroid disease over 30 years. Hair loss can happen if the thyroid meds are either too high or too low. I had read that but it was still hard to believe I could lose so much hair from getting slightly too much. (Later, they switched me to another generic that is weaker than the brand & I’m currently trying to get back to the brand).
>>Edit: Forgot to say, when I figured out my thyroid meds were a little high, we lowered the dose and the hairloss stopped immediately. Cytomel has a very short half-life, so the response was fast. I don’t know how fast the changes show with Nature Thyroid.
I just now came across this article but it really hit home. My hair is thin to begin with and is falling out at an alarming rate. I was on arava until 2 months ago and am still on Actemra. I read that Arava can cause hair loss and can stay in your system for a long time. It is so strange that with all the pain and fatigue and other symptoms of RA, it is the hair loss that seems to depress me the most right now. I guess it is the straw that is breaking this camel’s back. I am taking lots of Vit D and supplements. I will try those shampoos. thanks again, Kelly, for your support. You are always there when needed.
I was diagnosed with RA in 2005. I have been on Plaquinol, 15 mgs Methotrexate and Humira or Enbrel until early 2013. I was doing pretty good with no noticable hair loss but I do have very thick hair so it is unlikely that I would have even noticed losing any. But then my medical insurance won’t cover my Enbrel unless I try Sulfasalazine and increase the mtx to 25mg/wk. I did this and about 3 months later my hair really started falling out. Handfulls in the shower and all over the house. I hardly have any eyebrows or eyelashes left. I stopped these drugs after four months but at the 5 week mark, my hair continues to fall out. I have added multivitamins, biotin, and a B complex to the mix I am using Nioxin now. So far, the hair loss has not slowed down. I hope it stops before I am completely bald. So sad because I loved my thick curly hair and it wwas my best feature
so far, I have had zero hair loss. I have very thick hair and it was long but when I got ra and I heard that there could be hair loss, I cut it really short, subsequently moved to hot florida, and decided to keep it short anyway. I have been on mtx and at first orencia but now cimzia. I am in drug induced remission. I have even gone off of prednisone completely. that feels good – lost weight, sleeping better and still no hair loss…… not sure why. I eat mostly plant/fruit based diet and take almost 30 supplements a day. I have been doing them since before I was on meds. I take milk thistle 4 x day to boost my liver and I drink tons of clear water. I keep my liver and kidneys at optimum health because this helps prevent side effects of which I have had none so far….