I guess things are going better, because I am starting to notice other things. Things that are far more minor. Things like my hair loss.
When you’re in excruciating pain, you don’t give a toss about being almost bald. But when that pain fades a little, those smaller issues are able to come to the fore. The upside of this is I am clearly in less pain these days.
So now let’s deal with the hair loss!
It’s a very common symptom. Whether it comes from the rheumatoid arthritis, the medications, or whether it is a sign of Lupus (which sometimes my rheumy thinks I have, and other times my rheumy things I don’t) I don’t know.
What I do know is I have about a third of the hair that I once had. I am always trying to find ways to make it look thicker. In the end I usually just whack it up in a pony tail, and hope no one notices how thin that pony tail really is.
When I started taking methotrexate my hair loss accelerated. Then when I took Arava (leflunomide), it started coming out in great handfuls. Personally I think Arava did the major damage.
But I have been off Arava for many weeks now, and my hair is still coming out in clumps. It amazes me that I have any left at all, infact! My shower is covered in clumps of hair. I know. EWWWW!
So I have been reading about biotin. I’ve been taking it for a week. And quite amazingly, no more hand fulls of hair in the shower anymore. Still some hair fall, but much, much less.
It seems to be helping.
So what is biotin?
Biotin is a B-complex vitamin. It’s also known as vitamin B7 or Vitamin H. Biotin is present in the body naturally and it is essential for metabolic processing of carbohydrates, protein and fat. Some say that biotin can help you lose weight as it helps your metabolism operate optimally…I don’t know if that’s true, but it sounds like a nice benefit!
The main reason people take biotin is to improve the thickness and quality of hair and strengthen their fingernails. It can only assist if you are deficient in biotin, however. The theory is that DMARDs like methotrexate and Arava deplete your B group vitamins, including biotin, and that causes the hair loss.
So what dose to take?
Recommendations vary from 300mcg per day to 5000 mcg per day. I’m taking 1200mcg. Start there and see how I go.
It’s an extremely safe supplement. It has been studied in doses up toe 5000mg per day with no adverse effects noted.
It’s also very cheap, so not a lot to lose. And as I said, it seems to be working. It could be co-incidence, but my hair loss has slowed.
So I would say if you’re losing your hair, give it a shot. It might just help. And I believe if you look better, you feel better too.
I take biotin as well. It helped the second time around with methxo. My hair didn’t fall out as much. I also take vitamin E and of course, the omega 3’s. Every little bit helps.
Thanks Christina. I’m glad its working for you. I take omega 3s, but I didn’t know they helped with hair loss as well…bonus! 🙂
I had handfuls come out with Arava as well. I’ve been off for 1 1/2 years now and I don’t do Mtx. I do take Biotin and my nails are awesome but it hasn’t helped the hair loss. It hasn’t grown back but the fall out is much less – more like normal. I ask everyone that could possibly help but I’ve not received a good outcome. My general physician had me try special serums while my rheumy suggest the biotin, and an older girlfriend who gave me her catalog on wigs. My hair stylist tries to cut it in a way where the thinner parts show less, and my teen daughter ‘practices’ hair styles that flatter me. I’ve asked the girl at the beauty supply store who suggested a post-shower foam that thickens what I have (so far so good for thicker looking). If anyone finds a positive, proactive way to keep what I have and maybe have it grow back, I would really appreciate knowing your treatment plans. Thanks.
My Dr, said it takes from 2-3 years for Arava to leave our system..I too had a bush of hair, & found my hair thinning, he also said it could be age, until I looked up the side affects, & refuse to take Arava anymore! This is why I have not seen much difference, since I just stopped Arava early this year, but was for the past year taking less, & less per week, until I discovered Turmeric, & Ginger, & was able to completely get off of Arava, because of my hair loss, which is not noticeable to anyone but me! uggh! I’m also upset the Dr. who prescribed Arava, did not warn me, because I would have done a preventative instead of closing
the barn door after the horse is stolen!!
How long after using Methotrexate the first time, did the hair loss start. I have been on Metho for about 6 weeks by Pill Form. I am now doing the injections. The change came because of the vomiting associated with the pill form of Metho. Have you taken the shots? Do they have the same affect? I believe they are making me so tired I could sleep all day.
I’m hoping for the best with the biotin. My mom had baby fine hair and it runs in the family. Good luck to you.. The foam sounds good
I’ve heard Viviscal works great, wondering if anyone here has tried it? Either the supplements, serums, or both. I’d be interested to know because I also have about 1/3 less hair than when I started MTX about 10 or 11 years ago.
I have been taking biotin (1000 mcg) for a couple weeks and I’m not noticing a huge difference yet. I was on methotrexate last October, (only 10mgs) and I took it for about 6-7 weeks when my hair started coming out in clumps. I had a very thick, beautiful head of hair…not anymore. I know it sounds petty, but my hair was about the only thing on my body that I liked. I went off of it because a) it wasn’t helping and, b) my hair was falling out. It has been like 7 months now and hair is still falling out. Thank God I had a lot to lose. The docs aren’t really sure I even have RA because my bloodwork has been normal. I have all the symptoms, probably don’t hurt as much as you though and I think I may be just in the beginning (started like 2 years ago….hands, then feet, ankles, shoulders and most recently my wrists. Plus fatigue. I think that’s almost worse than the pain. Anyway, I’m hoping this Biotin starts to work. My nails are all of a sudden crappy too. Good luck to you and your medication journey. It is quite long and tedious. Not to mention scary. Good luck to you. I hope you find the right meds soon.
Its not petty…I totally understand. We lose so many things…losing your hair is hard. I hope yours recovers. My bloodwork is normal too, but there’s no doubt I have RA. Sounds to me like you do too..I’m sorry. The fatigue is terrible. I don’t know if its from dealing with the constant pain, or a symptom in its own right? I hope you improve…are you taking any meds now?
Thank you. I started out on Plaquinil, two pills a day. That was over a year ago, they actually worked. Of course then my ankles, shoulders and wrists weren’t bothering me. They also upset my stomach. Bad. To the point that clients in the office I work at could hear my tummy from across the room. Off of that, onto MTX. Like I said, I think I took that for like 6-8 weeks. With tramadol to help with pain. Then the hair thing happened and it scared me. All I’m on now is tramadol and Cymbalta. I figured the Cymbalta couldn’t hurt because it is for pain and depression, and quite honestly I am beginning to get a little bummed. I’m on a low dose. It seems to help with the depression, not so much with pain. I am still working though. I cut my hours down to 35/wk. Weekend comes and I’m exhausted. I can handle the pain (mostly) or the fatigue. But when they both hit at the same time, it’s terrible. I fell asleep AT MY DESK last week. Twice. That’s crazy! Thanks for this forum, and all the information. My last rheumy said if I really had RA, tramadol would not help me at all. Very dismissive with me. I don’t see him any more…lol. I hope you are getting some relief too.
Gee, I wonder why you don’t see HIM anymore! LOL. Some rheumies are dismissive…especially if you’re bloodwork is inconclusive. I hope you’re seeing someone better now, more thorough. Tramadol will help the pain, but it won’t do anything to stop the disease. It is a long, slow process of figuring out what works for you though. If its RA, you will probably need more than just pain relief though…good luck with it, and keep me posted? There are lots of other treatment options…a good rheumy will find the right one!
Marti, how can a doctor prescribe the drugs without being sure you need it. I use Tramadol. You don’t feel anything from it but I do feel better taking it. I take it when I first wake up and lie there for awhile so that I can get up without to much pain. Be your own advocate. I need to get a shirt with that written on it.
Thank you for the Biotin tip. I am 48 and was diagnosed with RA at 40. I have been on/prescribed methotrexate and sulphasalzine the majority of that time. I have a terrible tendency to quit my meds when I feel good – yes the drugs work but I feel that their impact to my body/major organs may end up be being more devastating then the disease…I am currently off them…six months minimal pain…once in a while a very crabby joint but have worked through it knowing in a day or two the pain will subside but not entirely disappear. I drive my doctor crazy but he knows I am trying to manage this disease with as little medication intervention as possible. I thought my current accelerated hair loss was an age thing – and while it probably is – it is interesting that the drugs may have had an impact as well. I am off to the drug store today to buy……my knees hurt today…but I am so used to being wobbly…it wouldn’t be a normal day if I didn’t walk a bit wonky….I’ll report back on my hair….
I hope the Biotin helps! For some people the drugs are definately as bad as, or even worse than the disease. I’m glad you have a supportive doctor who allows you to manage your disease in the way that’s best for you.
They say a woman’s beauty is shown in her hair…. It’s the most difficult thing to live with, knowing that you have to go through losing your hair from the side effects of medication of your illness.
With RA or even Lupus, you basically get to choose from being bald (with the hair-loss from medication, or being crippled from the RA) – I’m 35 and have been diagnosed with RA at age 32. The journey has been a difficult one.
I was on 15mg Methotrexate for two years…. the hair-loss was the most difficult to deal with. I sought the opinion of an RA Specialist for a year and three months and accepting that I had this condition at 32 was the hardest. She started me on meds immediately. She came highly recommended and I was happy that my doctor was good. Months went by with me adjusting onto all the medication but my hair started to fall out so badly. My doc had no concern for my appearance – just my health. I was flaring up every six weeks to the day and my condition seemed like it was worsening. By this time I had started reading up on my condition and looking into herbal remedies and alternate treatments. My doc said that RA was not diet specific so doing an elimination diet wasn’t going to help me much. I tried it anyway. Through this I found that I have a gluten intolerance and the more I consumed foods with gluten (almost everything on the shelves today contain gluten in some form), the more I flared. Much to my dismay, she wanted to start me on Biologic drugs. Every time I left her office, I was in tears and as I wasn’t seeing much improvement in my health, I decided to give another physician a try… he told me that he cant make any promises at the very outset but started trying a few other drugs.
He was concerned about my thinning hair and gave me vitamin infusions. He also gave me Solu-medrol (Solution of Medrol which is a cortisone) he gave me a dosage in line with my weight and took my hair and weight into consideration before administering the drip. He suggested that I never go onto Biologics drugs until I have a baby (I don’t have any kids currently). He says that although much research has been conducted on the Biologics, and it is break thru mediation – the future of managing RA, there still isn’t enough research done for women wanting to have kids at a later stage (After taking the drug). He suggested that I only ever consider Biologics at a later stage in my life – after I have kids.
On my next appointment (3 months later), my joints were less swollen, my liver and kidney functions improved and my overall health was looking so much better.
I had the infusions twice last year, May & August (2015) and in December he started to ween me off the methotrexate. My health has not felt better.
I still have dry eyes and mouth on some days but nothing too bad. My hair hasn’t started to grow back as yet unfortunately but Biotin has been something that I’ve used for the last 5 years. I’ve stopped it for the last 6 months (didn’t want any interference with my RA and the joints) whilst weening off the MTX but I will be starting with it again from today.
I’m super excited. I swear by it and encourage other women to try it as well. I’ve not had problems with it at all – I’ve only stopped it because I’ve been very cautious with supplements and my RA condition but I am starting to take it again.
For every person out that that is battling RA or some type of autoimmune condition – my prayer goes out to you!
Many thanks really beneficial. Will share website with my friends
Thanks for all of your comments! I have been diagnosed with RA for about ten years. No one ever told me about Biotin until recently. I have had a lot of hair loss and now my nails are constantly chipping or breaking, very tin as well. I always had beautiful nails. Most people thought they were fake! I was wondering what a good dosage for Biotin would be?
My hair has been falling out in clumps for quite a while now, literally since 2015 and it’s been spastic ever since. I had no idea what was causing it, but I also had really swollen fingers, but no pain. Nothing I did seemed to help reduce the swelling in my fingers, nor the falling out of my hair. I, like “Marti June 27, 2013 at 9:46 am” above, felt my hair was my better asset and it was the one thing on my body that I like and enjoyed working with. I was so frustrated not knowing what was happening to me that I started off my journey by first seeing a Trichologist and getting electro-therapy and taking prescribed vitamins (by ID) as my treatment. What a huge waste of funds that was, because none of it worked. Then, falling deeper into my frustration (borderline depression from not knowing what was going on with my body), I decided to go to my dermatologist and had him do a biopsy on my scalp, only to find there was nothing there. Although, I did, and still do have puffiness on my scalp. So, by this point, I’m just totally unhappy with everything, because the huge clumps of hair kept coming out. I hated the days — and still do — when I had to wash my hair because the clumps just upset me further to tears almost every time. So I then went to my Endocrinologist and had him test me to see if it was related to my hypothyroidism, which is an auto-immune disease that I have and take medication for already, and that can also cause your hair to fall out. And I was certain he was going to find something, but he didn’t. Uggh! I was at a total loss and just didn’t’ know anymore how to proceed. Fast forward to today, since my fingers are still swollen, and finally starting to cause me some discomfort, I went back to my PCP and had her test my blood for RA. My ANA TIGER (whatever that is or means) came back Positive. So now, I have an appt with an RA at the end of July 2017, which I have been waiting for, for almost 3 months. UNREAL!! My Lord, you think you could get in to see a rheumatoid doctor faster than that. So in the meantime, I continue to take Biotin (5,000 mcg), and Folic Acid, since I heard these two work well together. And it seems to have slowed down my hair loss some. I’m still getting clumps, but they seem to be the same size each time. Honestly, if it weren’t for the fact my hair has always been really thick, I probably would be bald by now. One other thing I’ve been thinking of trying is Viviscal. The only reviews I’ve heard about it is from the testimonial videos they have on their site. Apparently, it’s a combination of biotin, vitamin C, Apple extract, calcium, and a few other things. And so far, the reviews are really good, although, I’ve not heard any with RA talk about using it. So, perhaps I’ll try it after I see what the RA doctor tells me next month, or maybe I’ll get it before. Well, one thing for certain, it’s good to know that I am not alone when it comes to clumps of hair falling out for months and years at a time. Good luck to everyone on this journey … never give up the fight and remember, we’re all still beautiful people, and we are going to get through this. So Heads Up everyone! I’ll report back about the Viviscal once I begin to use it.
Hi J, I hope you get some help at the rheumatologist, I sympathise with how long it can take. YOu’re right, we’re still beautiful, but thanks for the reminder. Needed that today :). Good luck with the Viviscal, yes please let us know how it goes! Best to you 🙂
Thanks, Admin! I certainly hope so too. I’m hoping on a whim that maybe, just maybe, it’s not going to be RA and that I won’t have to be on more medication … especially with all the horror stories I’ve heard (and read) about the medications making the situation with hair worse. So I’m praying and trusting God in hopes and faith that this is not the case. Well, thanks, again Admin, and have a wonderful day and an even greater week! You are one of the BEAUTIFUL ONES! 😉
Aww, thanks J. I really hope that it isn’t RA, but most of all I hope that you get answers, and a treatment that works for you. All the best with your rheumy and huge hugs 🙂
Aww thanks J. I’m keeping you in my thoughts and hoping too that it isn’t RA, and that a solution can be found. Take care…hugs!
I am taking ra treatment.Iam also facing hair fall problem.
Hi, my name is Erika, I was recently diagnosed with Arthritis and I’m not taking any medicine for it, but I made a big change in my diet and my pain seems to go away, I did eliminate all gluten, fried food, whole milk, white rice, pasta and instead add almond milk, more veggies, and fruit ,also I’m taking supplements such as Turmeric, Collagen, vitamin D and probiotics and I’m feeling less pain almost nothing.
My hair loss comes from many years ago, since I was a teenager, I’m been trying 100 shampoo, vitamins and home made hair mascaras, etc, and biotin helps me with hair loss, I did stop couple of months ago and my hair started fall again, so I’m going back to Biotin
I’m glad you’ve found something that works for you 🙂
this blog is an amazing find! I was diagnosed with RA in 2018. When I was put on MTX back then, my hair started to fall out in clumps. I had really thick hair, so the loss wasn’t noticeable. fast forward to today and I can see each follicle in my scalp, it’s so bad. It’s one of the few things I loved about myself, so to see my hair so incredibly thin is really depressing. I had hear about biotin but haven’t tried it. I keep taking more folic acid but I haven’t seen a difference.
– Is there a certain brand I should try and what would be a good starting dose?
– Does the hair lost from MTX treatment ever return to your head like it would after chemo, or is it gone forever?
– What happens if I decrease my dose of MTX to 5 pills (I’m on 6 now for awhile). Why the hair loss slow down? Will I come out of RA remission? My rheumat didn’t seem to give me answers.
Thank you for everyone posting on here, I don’t feel alone. I even saw a dermatologist for my hair loss and they said I’m getting old. They are wrong, as there were no issues until I started MTX, that’s when this all begain.