Losing hair badly

Losing hair badly

I am so upset as a women who is 48 my hair is falling out in constantly all day long ....I so scared even to comb it or touch it for that matter....I am on folic acid 5mg daily and have been since I was diagnosed but it seems to do nothing...., I asked my ra dr he said not even an increase of folic acid would help.....I am at the point of stopping all drugs just so I can have hair ........has anyone had success with another medication to help with the hair loss....thank you in advance Amanda

28 Replies

oldestnewest
  • Hello, what lovely hair you have as well! I wrote a blog about this problem a few years ago here, I'm a hairdressing lecturer and have studied as much literature as I can about this, hounded colleagues and lately a trichologist to get some answers.

    My recommendation is a range for hair loss called nioxin which is available at salons only. Although over the years I knew this was an amazing product I did recommend we avoid it as any product designed to boost hair growth could work against us. I have been assured by both trichologist and nioxin themselves that nioxin will NOT have any ill effect whatsoever and claim it is also a successful treatment for patients undergoing chemotherapy.

    Only recently getting to the bottom of it all I bought a starter pack containing shampoo, conditioner and a scalp treatment. This was around £14 and is a month's supply. I also bought another nioxin treatment called diaboost, this was more expensive at £35 but will last for months. I can honestly say in all my years of researching products with students, trying everything that this was nothing short of a miracle! For me anyhow, I've never had so many compliments about my hair! 😀

    I've been on their training and love what there about, nioxin is the only range recommended by the Institute of trichology. It can take up to 3 months for a noticeable difference but I felt it within days ( I think the diaboost made the difference)

    I'm rambling on! I promise I don't work for the company!! Lastly, I found naproxen was the cause of my hair loss which is listed in side effects. Methotrexate doesn't help but when naproxen stop so did the exesive hair loss.

    Always brush hair when dry, never wet (use a large tooth comb) hair is at its weakest and breaks easily. mXT is more likely to be snapping off than falling out so there is hope, the nioxin will strengthen it. Avoid straighteners. Sorry if I'm telling you what you already know!

    Hope you get something sorted soon :) x

  • Thank you so much.....I live in ontario canada so I will have to see if we have such a product ...good old restrictions on so many products here .....I am on celebrex and have been on that from the start as well...metho yes humira ....I am depressed enough with barely any progress since I got the flu at the beginning of the year which just sent me back to feeling like I was just diagnosed with ra .....now my hair is so thin you can see my scalp.....you start to feel like whats next...lord I shouldnt say that....but thanks again I will call a few hair salons and see if they have it......is there any other name it could be under ?

  • Hi I have just been on eBay and got the nioxin starter kit for £18 hopefully this will help with my thinning hair good luck 🍀 xxx

  • Found it 60 dollars for 2 and 3 what ever that is but I will go and speak to them about thanks so much fingers crossed

  • Hiya Amanda. You've had excellent advice from wiliby & whilst reading it something occurred to me & I'm annoyed with myself for not investigating before. Because MTX gets the blame for lots of things including hair loss I've been searching what else we take could cause it. It was wiliby mentioning naproxen in particular which prompted me to rootle around a bit more & to say I was surprised is an understatement. This link is just one I found, recognise any of your meds? hairdoc.com/book/Chapter_08...

  • Thank you nomoreheels ...disease is frustrating enough....but I am starting to feel like a dog sheading its winter coat...lol....my poor hubby has dred locks attached to his clothes or socks ...so bad I wear a hair net when I am preparing food ....ahhh the joys of rA

  • nioxin.com/en-US/home-page....

    Sorry it's the U.S. but it's a start, there are online companies that will post, great consultation tool to help you get the correct range. Xx

  • Oh, you mentioned having flu, another reason for some hair loss, especially if you had anti biotics x

  • Rushing to a hospital appointment Amanda but just found this amazon.ca/s/ref=nb_sb_noss_...

  • Hi Amanda

    I'm so sorry to hear you're having such problems with your hair. It looks quite thick from your picture and I think sometimes your healthcare team don't see the problem when you're hair looks so nice and thick, but of course you will notice it more than anyone else, and it can really affect your self-esteem!

    I know you've spoken to your rheumatology team, but do they realise how much this is affecting you? I think if they realised you were tempted to stop your medication (not saying that you will) they might do more to look at how they can help. Hopefully you can find a product that will help, but if not, you might have to have a conversation with them about lowering the dose or potentially trying something else. Better that than getting to a point where you end up with nothing.

    I know that some of the cancer treatment sites have some good suggestions on minimising hair loss, but you've probably tried some of these tips (such as using gentle hair products) already. Here's an example of some tips that might help:

    macmillan.org.uk/informatio...

    Kind regards

    Victoria

    (NRAS)

  • Thank you victoria.....he is a good ra doctor but I think he hears it all the time and just gets routine....but now I see my scalp and even my husband said wow is it ever thinning out he could see a birthmark I have had since child raspberry in colour he never ever new I had because my hair covered it .....when a man notices and comments its noticable .....but I really appreciate your kind words and support

  • Hi there fear-of-nothing I was on methotrexate and my hair was coming out in handfuls I had a nice bald patch on the side I used to cover it by pulling hair forward its horrible as a woman because your hair is your faces picture frame. I was taken off those meds after a while hope you to get something sorted out to. xxx

  • Thank you bazzypants....it seems to just start falling out like mad when I was put on the combo of metho and humira.....when I was on metho and leflum I had no problems.....sorry you went through that....yes without hair as a women it is somewhat depressing ...thank you for your words and compassion

  • I have always had really thick glossy hair even when I was diagnosed and for up to around a year after I started mtx. Then my hair really drastically thinned, broke off whenever it was combed. I would shower and the drain catcher would be completely covered in hair and obscured from view by my hair that had fallen out. I had a Mohawk going on where I parted my below shoulder length hair because so much of my hair snapped off. I was also previously dying my hair black to cover my greys but stopped as although it didn't contain peroxide/ammonia (forget which one!) it was still a strong chemical. I never straighten or blow dry my hair as it weakens it so it is more likely to break off.

    So much hair was falling out that my hairdresser advised me to massage my head every day to stimulate growth it did take around 3-4 months before I saw any improvement.

    Unfortunately I fell last year on concrete whilst holidaying the Norfolk broads and ruptured my Achilles' tendon and also twisted as I fell and badly damaged my shoulder so that I was unable to wash my hair with 2 hands. That week I had it all chopped off and had a cropped haircut with a grade 2 on the back and a floppy fringe at the front that at it's longest could cover my eyebrows.

    Wish I'd done it sooner. It takes no time at all to dry or style! After nearly 6 months off work, an op to fix my tendon I'm back at work on a phased return - I started in January with 2 mornings a week and have built it up to be back full time by the end of March. My hair is washed and dried so quickly I have a head massage every day and it takes no time to style. I spent no money at all on any products. My choice to have the drastic cut because of my situation at the time and it worked for me.

  • Thanks for your reply and found happiness and comfort with a shorter hair cut....I am dreading the day that i would have to do that so I am going to try the shampoo an cream rinse first ...if no success I guess that will be my route....have a wonderful night

  • Well, im not a doctor and im not giving you advice. But even my hairdresser remarked how fast and thick my hair was growing these days. what is it im doing differently? I stopped taking my Simvastatin because of terrible craps in my thighs and a dreadful memory. My cholesterol isn't that much higher as I have porridge every morning and I take Evening Primrose Oil capsules (these are not recommended for people with Epilepsy without seeing their doctor). Evening Primrose is great for skin, hair and nails and it may take a few month to feel the benefit but worth a try. Mothers hair is thinner as a result of thyroids problems so she had a perm and it thickened her hair or so she thinks.

  • Thank you for sharing that ...I will speak to my ra doctor about that....I do perfer herbal treatment over man made drugs ...bad enough the toxic stuff I put into my body everyday

  • If happened to me! Handfuls coming out bit then after a few months it just stopped and settled down!!! I did use the shampoo too and found it extremely good . No hair probs now x

  • Nioxin will work BUT if you ever stop your hair will revert to the condition it would have had if you had not used it. The hair loss will be the same . And it will be fast. . I do know as my skin specialist suggested I use it but warned me once I start I would have to use it forever. Sorry to put in a negative but its a commitment to pay for it and use it for ever.

  • Oh boy good to know have a great day

  • I too lost lots of hair on methotrexate - hairdressers had always commented on how thick and shiny my hair was - and I was in part denial -despite the hair on the pillow each day- that I was losing a lot until a hairdresser commented that my hair was difficult to style as so thin! Having someone say that was a really blow to me psychologically. Despite all the other physical manifestations of the disease (and treatment) this impacted on me in a way that I would never have anticipated. Thankfully the rate of loss did slow on its own. So I understand and hope that some of the earlier suggestions help.

  • Glad to hear things slowed down

  • Hello, fear of nothing!

    I, too, was suffering from a lot of hair loss. My scalp was beginning to show through and that really takes a shot at a woman's confidence and self esteem. I used Nioxin for several months and noticed some improvement, but the hair loss continued. I started using Rogaine at the suggestion of my Rheumy doctor. And he changed me from mtx to Leflunomide hoping that would reduce the hair loss. (I also use Humira.) It wasn't until I was taken off the Leflunomide b/c of bad liver numbers, that I started growing hair back. Now I have new hair coming in all over and have noticed a big difference in my fingernails also. After 3 months, my new hair is about 3 inches long and my nails are growing out stronger. In summary, I believe that the Nioxin and Rogaine helped to slow the loss, but the real culprits of my hair loss were the mtx and Leflunomide.

    Between your doctor and you, and tips from fellow sufferers, I hope you can find a solution! All the best to you!

  • Thank you share a smile I was on the meth and lefluno before starting humira ....I had a little hair lost then but nothing like now....so I am not sure if it is the humira metho combo....I am not on lefluno anymore but I am also on celebrex ....funny you mention your nails....in the last three weeks they have started to break and split more then normal as well.....I was hoping that after3 months of humira i would have some relief but no luck.....the joys of ra .....like trying to put a puzzle of drugs together to get your daily life style.....have a wonderful day

  • Hello, can your Rheumy reduce or stop your MTX? to see how you do on Humira alone?, it may be enough to control your symptoms, if not they can slowly add MTX back, a little at a time until you have proper pain relief.

    From reading your post, Im thinking that it is the combo of the two drugs, they may be overwhelming your system.

    I was on 20mg MTX and then also put on Arava. I was fine on MTX, just a bit of hair-loss, but it was acceptable. When I combined MTX with Arava.... I lost over 50% of my hair over a course of about six weeks. My Rhuemy didn't seem too concerned because to him I looked OK. My Rheumy and nurse and GP could not even tell, as I had long thick hair to begin with, but myself and my family members sure noticed, and my work colleagues sure noticed. I saved up my hair, literally huge hand-fulls (several large ziplock baggies full) of clumps of hair and plopped them on my Rheumys desk. The nurse was shocked! looked at the clump then my head, the clump then my head. The Rhuemy was also alarmed now, so he checked my head and discovered all the bald spots, it was medicine induced alopecia.

    I asked to have my Folic Acid increased from one 5mg tab a week, to daily like most people on here take. He told me it would not help. He put me on a drug in the same class as Folic acid (sorry can not remember the name) its given to cancer patients who take a dose of 500mg MTX or more, and its given to people who overdose on MTX.

    I had a toxic build up of medicines in my body. The new drug did not stop my hair-loss.

    At the same time, I was having issues with my toenails, but it was undetected as I generally have a monthly pedicure and have toe polish, eventually my nail-girl pointed out strange horizonal ridges on my toes when she removed my polish. It was another clue that I had a toxic build up of medicines they had caused stunted damage to my nails, now splitting and cracking. ( I eventually lost the whole big toenail) My doctor immediately took me off all meds. I was terrified of a flare. There was nothing else for me to take except to go on prednisone while I recovered. After stopping all meds (but when on Prednisone) my hair continued to fall out for months, then one day, I was doing my hair and I noticed....nothing! no more hair falling out. Aprox. 3 months later my hairdresser confirmed it is finally starting to grow back, very, very, very slowly and it is coming in with a different texture than before, very curly almost fuzzy.

    Hair means different things to different people. For me it is strongly tied to my self- esteem, as a woman it was the one thing about me, physically, that made me feel beautiful (ish) healthy (ish)...while being sick, young (ish) lol, sexy (ish). As it started coming out, I looked sick, as hair is an important clue to your health.

    I admit, I cried and cried...and cried.

    I have had lots of advice, from cutting it all off, to many different hair treatments. I have considered them all. I can say, if its gonna come out its gonna come out, and no shampoo will stop that, as shampoo is put on externally, and the hair-loss problem in within your internal body.

    I am not doubting some topicals work, but you need to find and stop what is causing the hair-loss in the first place. I only washed my hair every three days, it may slow the loss but will not stop it.

    I did not cut off my hair, I have had my hair cut short before over 20 years ago after giving birth, and I would not do it again, it truly doesn't suit me, I look like a mouse-boy. Some women like Judy Dench or Robin Wright Penn, or Cate Blanchett, look powerful and beautiful with short hair....me I look like a mouse..and not a nice mouse either!!!!

    I waited until it stopped falling out, so I know what I got to work with. I had my hairdresser remove one inch straight across the bottom, no layers. My hair was so sparse at the ends you could see right through it. Then at my next appt. I had the hairdresser remove another inch, straight across the bottom, again. Now it looks fuller and not so bad, having removed the sparse see through ends. I know it will take years and years and years, for the fallen out hair to grow to match the length of my hair......really im just glad it has stopped falling out. Yet worried with every new drug Im put on.

    This community has helped me, so many kind people answered my hair-loss post, and it got me through my really desperate despair, and my partner who I know noticed and was probably scared for me, never flinched, he just told me I was beautiful and kissed my hair (more like my scalp). Your hubby did talk to you, as you mentioned, and this is fabulous, because you got good communication going and good support, and he is honest with you.

    Tell your doctor this is not acceptable...even if you have to gather up your hair and leave it on his desk so he can see how much is falling out. There are lots of medication options, and you do not have to loose all your hair. I wish you good luck! PM me if you need too.

  • My hair is thinning also, but I take BP meds also, so my hair has never been the same, but now it is very thin, I hate wigs, but I don't know what to do either,,,

  • Good morning empathy

    after many times complaining to the RA dr and showing him pictures of clumps of my hair coming out.....having a burnt tongue feeling , my body feeling like it was constantly so hot (which at first i was told it was menopause) liver enzymes and creatine levels in my blood extremly highand a rash that covered my whole torso he finally said I think you are having ither a reaction to metho or humira ....so he took me off both...so now i am only on embrel and leflunomide....took about 3-4 weeks for my hair to stop falling out but thankfully I no longer have the issue ....I am so sorry you are having this issue for I feel our hair is our identity. So for me I am not sure which one was the culprit but I am so glad in time I will have my hair back....I wish you the best

  • Hi everyone - has anyone heard of or tried Hair la Vie - it's all natural and apparently it works (according to the website reviews). Check it out. Mine arrives in a couple of weeks... I will let you know how it goes. It contains saw palmetto which helps reduce hairloss as well as other vitamins to nourish hair. hope this helps, Julie

You may also like...