Hair loss: Hi I’ve been experiencing hair loss for... - NRAS

NRAS

33,902 members42,079 posts

Hair loss

Ninsy profile image
26 Replies

Hi

I’ve been experiencing hair loss for quite some time now, unsure if it’s down to having an underactive thyroid (although controlled) or to having been on methotrexate for a number of years, was also taking folic acid but this didn’t seem to be doing anything to relieve the problem. I have also gone through the menopause. Being now on prednisolone seems to be making matters even worse .

Wow having read that back it seems like the perfect storm for hair loss doesn’t it. 🙄

Has anyone had any positive results by taking Biotin or Sea Kelp or both please?

26 Replies
Liveindevon profile image
Liveindevon

I also had hair loss on mtx injections and tablets. Consultant not concerned but six months ago I was moved onto a biosimilar because mtx wasn't controlling the flares. My hair is still wispy but is slowly growing back. I have used serum from Swedish bio labs, but I don't know if that helped or if it was just coming off mtx that is the cause. I'm also taking biotin gummies - they're nice and it's a belt and braces approach!

I have also amassed a box of African, Muslim and chemo headwear. I have something to go with every outfit and people think it's a fashion statement and I have also been asked if I'm 'artistic'

Spin1959 profile image
Spin1959 in reply to Liveindevon

Hi I also take Biotin gummies. I’m not sure if they work but am loath to stop them! I also use a very soft non plastic hair brush rather than a comb. Nothing that pulls my hair.

Ninsy profile image
Ninsy in reply to Liveindevon

I was initially on the tablet form of MTX and obviously Folic Acid then due to gastric issues plus the hair thinning changed to the injectable form, it did improve the stomach problems but not the shedding. I was then diagnosed with Polymyalgia last December and prescribed Prednisolone, I seem to think that this has made the hair loss worse.

I have stopped the MTX 4 months ago and have been on Amgevita a Biosimilar since the end of August, the shedding still persists.

I dread washing my hair and seeing it disappear down the plughole, it’s causing me anxiety.

I have had blood tests done by my GP and they didn’t show that I was lacking in anything, he said that there is nowhere he can refer me for any further investigations or treatment, so I am now turning to you lovely people on this Forum for some ideas as to what I can try myself.

I have been using the Coffee shampoo & Conditioner but this has done nothing.

I feel encouraged that your hair is growing back!! Do you think this is down to the Gummies or to the fact that you’ve moved onto a Biosimilar - may I ask which one?

Liveindevon profile image
Liveindevon in reply to Ninsy

im on Imraldi. I don't know if you know but each area has been told by the NHS which of the 5 biosimilars to prescribe, so that one company can't hold them to ransome over prices. Imraldi is the one they have to prescribe in this area.

For 5 months I used a nightly serum on the head that I bought from Swedish bio labs. It's had successful clinical trials and they respond to questions and suggest articles to read. They also offer money back after 5 months if no improvement. I assume you have to provide before and after photos. My daughter thought it helped. I'm now just using it twice a week as that's how often I wash my hair

I've had a wonderful time with African and Muslim turbans and headwear. I have a boxful, to go with every outfit. As I've kept my fringe everyone assumes it's a fashion thing. If my hair does grow back I'll wear them on bad hair days!

Best of luck

Ninsy profile image
Ninsy in reply to Liveindevon

That’s very interesting info in relation to the prescribing of the Biosimilars, I am aware that I would not have met the criteria for Humira at the beginning of last year before they changed the criteria and the Biosimilars came into play.

How are you finding Imraldi?

I’ve only been on Amgevita since the beginning of August so it’s very early days. Had my first lot of bloods done last week so i’ll be interested to see what the results say this week.

My joints are most definitely better already but I am experiencing a few side-effects which could iron themselves out in time.

Thank you for all the info you’ve provided me, i’m very grateful.

Liveindevon profile image
Liveindevon in reply to Ninsy

in the six months I've been on Imraldi I've had no flares and I was getting one a month even on the mtx injections. Still no appetite much, but that doesn't bother me, and I have to take the odd Rennes.

Best of luck

Ninsy profile image
Ninsy in reply to Liveindevon

You seem to have struck lucky in that Imraldi on the whole is working for you, that’s really good to hear.

In relation to appetite, i’m in the opposite category due to being on Prednisolone - I think of food morning, noon and night and unfortunately my waistline of late is testament to this. 🙄😋

virtualreality profile image
virtualreality

Sorry to hear you're getting hair loss, I had the same when my MTX dose was increased. I take a vitamin B complex (which includes biotin) and sometimes extra biotin as well and I think it helps although to be honest it's hard to tell. Steroids can sometimes have the opposite effect and I think it can be hard to pick apart what's causing what with our medication regimes sometimes.

Like you I also have an underactive thyroid, and learned several years ago that this can be associated with poor absorption of nutrients - so you can end up with suboptimal levels (and hair loss) even if you have a good diet and your thyroid replacement meds are working well. If you're interested in exploring that route it may be worth having your levels of the nutrients most associated with hair loss checked - e.g., iron / ferritin, vitamin D, B12 - to see if that could be a factor. I did this a while back and adjusted my diet and started taking supplements in light of the results, and it definitely helped my hair (that was before the RA struck, mind you). It's important to check anything like that with your rheumatology team of course, but mine haven't had any concerns about the supplements I take so far.

Ninsy profile image
Ninsy in reply to virtualreality

I definitely experienced more or less immediate hair shedding when I started on MTX, kept on telling my Rheumy but he always used to dismiss this by saying that I should be able to put up with it because the MTX was controlling the RA.

The point being that when my hair sheds, there’s no regrowth so inevitably it was going to get to a stage where it was going to become obvious. I feel that i’ve banged heads with him over the years on this subject.

I am extremely sensitive to meds and feel the side-effects of most things that i’m given, so he was sooooo reluctant to try me on anything else other than the MTX because he said that the other meds would cause me huge problems.

After much badgering on my part and having gotten to see a different Rheumy when my usual one was on leave I finally got the opportunity to try Amgevita, still very early days on it and my hair still sheds. 🙄

Very interested in what you said about poor absorption of nutrients due to an underactive thyroid, I will look into trying a good multivit & mineral supplement.

virtualreality profile image
virtualreality in reply to Ninsy

Your old rheumatologist sounds spectacularly unsympathetic - glad you got to see another one at last! I think sometimes the medical view focuses so narrowly on symptom control (understandably, to an extent) they sometimes forget we have to live with ALL of the consequences of the medications indefinitely.

It is definitely worth trying out supplements, although recommended to test levels first if possible so that you're targeting the ones you need. There's a lot of great advice available on the Thyroid UK forum here on HealthUnlocked if you're interested (which is where I ended up a few years ago). The 'normal ranges' that GPs refer to when testing don't identify optimal levels within the range, so sometimes you can be low in something (often vitamin D if you're in the UK) but they'll tell you everything's fine. There are some really knowledgeable folks in that group who'll give much more precise advice on what to look for. I really hope you find something that helps, and that amgevita works out better for you. RA is enough to live with without the medication side effects too.

Ninsy profile image
Ninsy in reply to virtualreality

Thank you so much for pointing me in the direction of the Thyroid UK section on this Forum. Having had an Underactive Thyroid for many years I feel that I still have a lot to learn about the condition.

I echo your sentiments in relation to GP’s & Consultants being very quick to dish out drugs but on the other hand being quite dismissive when we complain of their side-effects. Their usual patter seems to be “oh only 1 in 1000 will experience this or that particular side-effect” when in essence somebody has to be that 1!!

I do appreciate that their main focus has to be on symptom control but I wish that they weren’t so quick to want to brush side-effects under the carpet - I am merely speaking about the experiences that i’ve had with my Health Care professionals over the years - it has seemed at times that i’ve had 2 battles going on, RA and them. 😉

CagneysMum profile image
CagneysMum

I suffered extreme hair loss on methotrexate too and so took a biotin supplement recommended by my rheumatologist. It definitely slowed down and then stopped my hair loss. I stopped taking it altogether after a year but then started taking a marine collagen supplement to try and thicken my hair back up which has also worked well for me. Good luck 🤞

Ninsy profile image
Ninsy in reply to CagneysMum

Would you be able to tell me which brand and dosage of the Biotin you used please?

Also, the same details re the Marine Collagen?

I would be grateful. 👍

CagneysMum profile image
CagneysMum in reply to Ninsy

Sorry but I can’t remember which brand of biotin I used but they are all similar and I would have followed dosage instructions on the pack. You can purchase it through Amazon. I’ve attached a photo of the marine collagen powder I use which I order through Amazon. Once a day, I stir a heaped teaspoon full into a cup of coffee. With both of these I recommend you running it past your GP or rheumatologist first to make sure it’s right for you.

Marine Collagen Powder
Ninsy profile image
Ninsy in reply to CagneysMum

Thank you ever so much for this info.

Do you still experience any shedding, or has this stopped completely for you?

CagneysMum profile image
CagneysMum in reply to Ninsy

just back to my usual/normal level of hair loss now.!No problems

Ninsy profile image
Ninsy in reply to CagneysMum

Thats’s fantastic, so pleased for you.

I hope that i’ll be able to report the same at some point. 🤞🤞

oldtimer2 profile image
oldtimer2

You have at least three causes for hair loss: underactive thyroid, methotrexate and a severe illness which often stops hair regrowth (when the old hairs fall out at the end of their life leaving your with thin hair).

It's worth talking to an experienced hairdresser as well as health professionals! They often have specialised knowledge to help you.

Ninsy profile image
Ninsy in reply to oldtimer2

My hairdresser has been expressing her concerns with me about my hairloss since about 2years now. I was very fortunate to have been blessed with a headfull of really thick hair, had this not been the case then I would have gotten to this sticky wicket a lot sooner. 😀

However, I always used to moan about how thick it was and how long it took me to dry it, I used to envy my friends who had less hair than me - what do they say ‘be careful what you wish for’. 😋

Happy5 profile image
Happy5

When I was first diagnosed with RA before treatment my hair came out in clumps. So not sure if the condition has this effect as well as all the other possibilities.

Deffo have thinner hair now on MTX amazingly hairdressers tell me I have thick hair!🤔

Bizarre cos it's finer though have enough to cover my bonce.

Not tried kelp or biotin will ask if ok when I next see Rhuemy. Plus try Biotin hair products.

This topic reminded me of a skit from Flea Bag (never watch it ) put in a short reel about "hair is everything " 😉

Ninsy profile image
Ninsy in reply to Happy5

I don’t watch Flea Bag either, but took a look at the skit on you-tube - hilarious. 😆

Blimey I definitely don’t need an Antony in my life!! 😋

----54 profile image
----54

My dermatologist recommended topical minoxidil after I began losing hair due to methotrexate. I was skeptical about it working, but I’ve noticed a significant improvement. I’ve been using it for months now, and my hair is thicker now than before I started using it. I use a 5% liquid solution available without a prescription in the States. Take care

Ninsy profile image
Ninsy in reply to ----54

Wow, I was very interested to read this, and obviously very pleased to hear about your fantastic results.

It is available here in the UK without prescription too.

After how many months usage would you say that you noticed new growth? and have you experienced any side-effects at all?

----54 profile image
----54 in reply to Ninsy

I haven’t had any side effects. I’m so happy with it. I’d say that I noticed a change within a month. My dermatologist told me to expect it to take a month to stop or reduce excess hair loss. I knew that it was working when I started to see new growth at my hairline on my forehead. Take care!

Seamus1234 profile image
Seamus1234

Have you had a blood test? My hair had been falling out for months and is also horribly dry and brittle now. Been quite traumatic on top of everything else with my relatively new diagnosis of ra. I was on metho but not for long so didn’t think it was that. I went for blood tests and I’m b12 deficient and a bit low in zinc. I have been on ppi’s for years for gerd/hiatus hernia so I think it was more a malabsorption issue. A few weeks of supplements and it has stopped falling out. GP recommended regaine too. Now to try to fix the brittle hair that’s left. Hope you solve it.

Ninsy profile image
Ninsy

My GP has carried out blood tests but says all came back ok. I am on 3mnthly B12 injections, and have been for a number of years.

What those blood tests that i’ve had don’t check for of course is if i’m lacking in other essential vitamins & minerals.

I do not take any supplements so this is definitely something i’m going to look into. I’ve been on so many different meds over the years it’s pretty difficult to establish what’s causing the shedding.

Really glad to hear that your hair’s stopped falling out - it gives me hope!!😀

You may also like...