Managing hair loss from rheumatoid arthritis and methotrexate | Getting my thinned hair cut

Подписаться 249

Просмотров 6 тыс.

50% 1

Lots of people don't get hair loss due to RA and anti-rheumatic medications thankfully, but it's one of the side effects I've had in the early stages of the condition. My long hair became very thin and damaged so after putting it off for months I finally decided to get it chopped - this video shows how it looked before and after.
It's not the easiest topic to share on the internet, but if you're going through this I just want you to know you're not alone. I'd love to hear about your experiences if this is something that's affected you too (or if you have any tips for helping the hair to grow back healthy!).

Опубликовано:

30 сен 2024

Ссылка:

Скачать:

Готовим ссылку...

Добавить в:

Мой плейлист

Посмотреть позже

Комментарии : 71

@aslightlyatypicalpresentation Месяц назад

Hi! I've put up a poll on my 'community' tab because I'd love to hear what kind of content you'd find most interesting from this channel -www.youtube.com/@aslightlyatypicalpresentation/community Please let me know! All responses are much appreciated ♡

@carmendragoi8820 2 года назад

Our human bodies are “perishable “ so to speak, but if while in this hard times we stay focused on how to grow spiritually, the burden of physical pain somehow diminishes..... I certainly can see nowadays that my RA is less painful now than last year! Let’s pray so the Lord will restore our health day by day as we grow spiritually day by day!

@aslightlyatypicalpresentation 2 года назад

I love your way of seeing the situation, so much wisdom there! I also try to approach life's challenges as holding opportunities to learn and grow, though don't always find it easy to keep that perspective in mind. It's a constant practice. What I do notice is that in meditation, or simple awareness of experience at this very moment, many fears and uncertainties melt away. And yes, as you say, physical discomfort too can release a little. I'll try to remind myself of your message next time I forget that :)

@carmendragoi8820 2 года назад

Oh so sorry to hear! I have been on the rheumathoid medicațion for one year and lost half of my hair volume too. Blessings and prayers!

@aslightlyatypicalpresentation 2 года назад

Thank you that's so kind, and it's really good to hear from you! I'm sorry to hear that you are having this experience too, though. Do you also take methotrexate or is it another medication causing this for you?

@lilbutterball14 24 дня назад

Absolutely GORGEOUS!! I think you made a great choice, I am in the same club, but have chronic plaque psoriasis and am currently undergoing treatment. I have suffered quite a lot of hair loss as well, I went from long hair to the length of your cut, then finally went with a short, A-line cut. Thank you for sharing with us ❤

@aslightlyatypicalpresentation 24 дня назад

💛💛💛 Thank you so much for your kind message, it totally made my day. I'm sorry to hear you're in a similar situation too, though. I really hope your treatment proves to be effective. Your new cut sounds ace 🌷

@TiffanyBlair-e8w 6 месяцев назад

Thank you so much for sharing this video. You are beautiful! My hair is down to my waist, but it’s been coming out in massive clumps when I shampoo, on my pillow, all over my house, clothes, in the car…everywhere! I’ve lost more than 50% without signs of stopping. It is absolutely distressing. I too have RA but it’s not from the medication, they say. You’ve made it so that many people no longer feel alone. I hope that you know how special you are for sharing and helping us all!❤

@aslightlyatypicalpresentation 6 месяцев назад

Thank you so much for your lovely message, how kind! I'm so sorry to hear you're experiencing this too. It is utterly distressing, and especially for you having such long hair. Like you, my hair loss started before diagnosis / treatment so it was definitely the RA disease process that caused it (though methotrexate added to that as well in my case). I will cross my fingers that you get onto a good treatment regime that controls the RA inflammation well and that this will help slow down or even stop the hair loss. Wishing you all the very best ♡

@mamma67 2 года назад

I was diagnosed about a year ago and have been on methotrexate tablets and my hair got very bad. I however didn't connect that it could be the medication and I was just trying different products and diet. My hair was really rough like straw, breaking all over the place and I was shedding extremely, constantly pulling out tufts of hair. Once I connected it to the medications I looked up what I could try and the simplest recommendations was switch to injections and increase the folic acid. I phoned my nurses and they got me booked in for injections (Had my first one today! So happy about how simple it is.) and I immidietly started taking folic acid 6 days a week instead of only 1 day. Just the folic acid helped a ton, I don't shed much anymore and it feels plenty better. I also decided a cut was my only option before it improved and I was so upset about it.. I was so sad and decided to jump for it and cut the length off myself in an attempt to prepare myself mentally, before my booked salon visit. Luckily I was instead very happy with having it short and my husband said it suited me better. When I went to the salon the lady actually said I had done a very good job of cutting it myself and she barely needed to do anything, haha. I had told her about my story and she said it didn't at all look like I was struggling with quality or quantity which made me so happy. I was always blessed with very thick hair but lost a lot of that back in 2014 due to an operation but I guess I still had quite some thickness which helped me with my hair loss significantly. I am now pretty much back to how I was before the meds just with the shortest haircut I have had since I was 15!

@aslightlyatypicalpresentation 2 года назад

A big thank you for for sharing your experiences of this! It helps so much to hear how you navigated this aspect of RA. Some of the changes are hard to accept at first aren't they, but you give me hope! Interesting what you say about the injections helping with hair loss - like you I've switched to injections now so hopefully that'll help in the longer term. Thanks again for your comment, I really appreciate you taking the time :)

@KayOss-zk4ls 10 месяцев назад

How many milligrams of folic acid did they switch you to?

@aslightlyatypicalpresentation 10 месяцев назад

Hi, I've been prescribed 5mg folic acid six days a week from the start, so my folic acid dose didn't change when I switched to injections.

@KayOss-zk4ls 10 месяцев назад

@@aslightlyatypicalpresentation I was prescribed 1mg six days a week. I will ask my doctor if she thinks I could increase my dose. I am just starting the methotrexate and am hoping to PREVENT hair loss. Thank you for answering! ❤️

@aslightlyatypicalpresentation 10 месяцев назад

@@KayOss-zk4ls that sounds like a good plan, I will cross my fingers for you! Some people never do get hair loss with MTX so hopefully that'll be the case for you ♡

@venistav8784 2 года назад

Hey could you please suggest how to reverse from hair loss?as I’m also suffering from the same and having same medicine… Could you please leave your reply

@aslightlyatypicalpresentation 2 года назад

Hi, thank you for asking, of course! I'm so sorry to hear that you're in the same situation with your hair. As far as I know, the first thing that can help is taking folic acid alongside the methotrexate - it was prescribed for me by my rheumatologist. If you aren't already taking that it could be worth talking to your medical team about trying it, or increasing the dose if you are? As well as the folic acid I take supplements that can help with hair loss (vit D, biotin and iron) that I buy myself - although I couldn't say if that'd be suitable for anyone else. I've also started using good quality (ie too expensive!) hair products like bond builders and intensive conditioners to try to improve the condition of my hair because it was so dry and frazzled. It does slowly seem to be getting better, and the hair loss slowed down after a few months, so I don't know if my body adapted to the methotrexate after a while. How long have you been taking it for? Crossing my fingers that it will improve for you.

@gliderrider 3 месяца назад

Just watching to find out more about R/A. I think your hair looks great!

@aslightlyatypicalpresentation 3 месяца назад

Thank you, very kind! I didn't ever manage to style it like my hairdresser did so it didn't look like this again! I have been lucky in that it's grown back a lot now though.

@Carol-cb9yu 11 месяцев назад

No baby hairs on my head. Methotrexate is poisoning my soul and I have stopped taking it. My frustration is that there isn't an autoimmune doctor. I have been sent to the dermatologist for my other autoimmune issues. It's like going to three doctors for the flu with each treating a different symptom. The new hair cut looks sophisticated. I wish you well in health.

@aslightlyatypicalpresentation 11 месяцев назад

Sorry to hear you had such an awful experience with methotrexate, it's hard having to take these meds. Are there any alternative options for you? I hope you find something that gets a better balance between symptom relief and side effects. And agree there should be an autoimmunity medical speciality, that would make so much sense!

@pamread9003 6 месяцев назад

I also lost a lot of hair because of methotrexate. I think your hair is beautiful just like it is.

@aslightlyatypicalpresentation 6 месяцев назад

Thank you, how kind. I really appreciate that ♡

@dianekelly3452 Год назад

I love your hair cut! My hair thins on top, but not too noticeable. I use small hair combs or tiny butterfly clips to pull my hair back on each side. There’s less chance of pulling on hair or sliding off because the clips are light. I’ve dealt with this for 23 years, but my hair keeps growing. You’re so pretty, and have lovely hair, just wear a little dazzle & charms to distract any visual concerns.

@aslightlyatypicalpresentation Год назад

Thank you Diane, what a kind and lovely message! My confidence was pretty low at this point, which probably comes through in the video. Messages like yours help! It was partly to do with the changes in my appearance, but mainly, I suspect, because I was still struggling with the loss of function in day to day life at the time and making adaptations for that. It has improved a lot now, but it's been quite a process. I really appreciate you sharing your perspective, having dealt with this for 23 years. And love the sound of butterfly clips! I may well try those!

@kittyread1605 11 месяцев назад

Apart from the nausea, fatigue, tiredness, and my anxiety over methotrexate. My hair has definitely thinned too. Which really upsets me too. But the terrible struggles feeling crippled and difficulty with normal tasks that are painful for me, and less muscle strength too when reaching up for things. It's like an invisible curse, as most people think it's a bit of pain in the joints. For me all over, like my upper arms constantly painful and sore. Painful feet, effusion in my knees, deviations in my fingers and toes. So I carry on in the hopes of things down. But it's hard, and unable to take a med to use alongside it. I take my folic acid. Sometimes my anxiety and administering my jab, I may skip. Especially if I am already nauseas or haven't eaten much. There has been an improvement, like my left arm isn't a dead weight anymore. And crippled morning starts have improved a little.

@aslightlyatypicalpresentation 11 месяцев назад

A heart for sharing your experience, thank your for taking the time. Though I'm sorry hear things are so hard for you at the moment. RA is a distressing condition, and like you say, people often don't understand the nature of it which can feel so isolating. The way you describe your symptoms is very familiar to me. Were you recently diagnosed, or has it been like this for quite a while? It sounds like your medication isn't enough to control your symptoms, or hasn't started working properly yet. I hope you have a good rheumatology team who are keeping this under review with you. It took several months after diagnosis for me, but my symptoms did improve significantly and are much better now. Wishing you all the best ♡

@kittyread1605 11 месяцев назад

@@aslightlyatypicalpresentation thank you, my response was intended to be one of lesson...that the treatment is necessary even though not great at all. To be honest...I do fail on following my treatment with methotrexate, for many reasons including anxiety, and already feeling weak and nauseous. And had not eaten much. So my weekly methotrexate jabs ( my stomach couldn't cope with the tablets ). So jabs when I feel I'm able to, but ..may not happen as I've got myself into a state of high anxiety too....I hate administering it..🤢.🤢 So truth is I haven't been great at all, and an increase of methotrexate dose is an absolute no. I wouldn't be able to tolerate anything higher at all. For my struggles now!! All the best to you 🙏

@aslightlyatypicalpresentation 11 месяцев назад

Sorry to hear the injections cause so much anxiety for you, it is hard when the treatment is almost as difficult as the disease. Is there any option to try a different medication, one that has fewer side effects for you, or can be tolerated in tablet form? I really hope you find a treatment that suits you better, that can get your RA symptoms under control ♡

@kittyread1605 11 месяцев назад

@@aslightlyatypicalpresentation I'm just a big scaredy kitty kat 😂. I have high anxiety, and propanol for that and other meds. So left to my own with treatment is stressful. I'll be ok ..just muddling through. Sometimes I avoid my blood tests, if I've skipped my methotrexate 🙁. I just have to brave up, just feeling nauseous and tired adds to depression and then I cut the treatment out. My dear ones are chasing me up to do better, but they also understand. I'll get there ...thank you for your concern 🙏💟

@Lolla95 7 месяцев назад

I feel you as I went through the same experience and lost much volume of my hair and this left me with very thin and damaged hair. Nowadays I am on Arthfree tablets with no solution for healing my hair damage!

@aslightlyatypicalpresentation 7 месяцев назад

Sorry to hear you're experiencing this too, it's hard on top of the RA itself. I hope the arthfree tables are helping with your symptoms at least. I've been lucky in that my hair loss has improved a lot since this video was posted, if you're interested I've posted a couple of update videos on what helped for me. I really hope you find a solution that helps for you ♡

@Lolla95 7 месяцев назад

@@aslightlyatypicalpresentation Thank you much indeed for your support. I am gonna watch them ♥️

@aslightlyatypicalpresentation 7 месяцев назад

@@Lolla95 it's a pleasure, it can be such a complicated condition to manage with the meds as well ♡

@tracyreid4039 Год назад

You look great. I have sarcoidosis, and my hair thinned alot. Thank you for your video. I just started with the metoject

@aslightlyatypicalpresentation Год назад

Thanks for your message Tracy, I hope the metoject works well for you and without too much in the way of side effects. I found it better than the tablet form so fingers crossed for you

@tracyreid4039 Год назад

@a slightly atypical presentation I hope so the tablets are a killer. The condition is life changing, but the meds are another level. Thank u for your video's.

@aslightlyatypicalpresentation Год назад

And thank you, for watching and reaching out - it's really good hearing from people going through similar experiences. I totally agree about the medications - with conditions like ours getting a balance between symptom control and side effects is no easy task. I really hope moving onto injections starts to shift that balance in your favour.

@juliemiller2760 2 года назад

your new hairstyle looks very nice.

@aslightlyatypicalpresentation 2 года назад

Thank you Julie, so kind! I'm getting used to it!

@heatherthompson3670 8 месяцев назад

Your hair just needs a good trim. That would make it look less straggly. It’s a year on now though. I’ve just developed RA.

@aslightlyatypicalpresentation 8 месяцев назад

Thanks so much for watching Heather. I'm sorry to hear you have RA too and hope you find the right treatment quickly so the symptoms are well-controlled. I had a lot of the length cut off my hair as the video shows at the end - it needed it at that point - but it's growing back now and in much better condition. It does all get better, I promise you.

@heatherthompson3670 8 месяцев назад

Thnx Asli, I need encouragement . Been through hell since early Oct whe my Nanny protégée, 6 yr old fractured my wrist. It set off my whole body and ended up in hospital from for 3 weeks. No sign or symptoms prior except tiredness and probably my bad diet. I stopped the steroid a week back so been going through another bad attack. Seeing Rheumatologist in morning for first time. My doctor let me have some predisolone today so hopefully it will kick in. Got the most awfully painful bakers cyst on knee too.. I live in anticipation of a wonderful eternity with Jesus so it’s not so terrible long term, just hard to get by on one’s own. Eg shopping, appointments, gardening and my house has turned into a gruesome mess. Thank for your in put. X

@aslightlyatypicalpresentation 8 месяцев назад

@@heatherthompson3670 That's so hard, especially with the prednisolone being stopped a week ago. It may have been to help your rheumatologist get a truer impression of how your symptoms are in the appointment, but it makes day to day life so difficult to manage. I really hope your appointment goes well and you get the treatment you need ♡

@heatherthompson3670 8 месяцев назад

Yes but I think the week off it was more by a convenient blessing rather than their plan. Consultant was excellent but lots wrong with me and lots to consider. He’s putting ,me on Hydroxychloriquin and back on a course of predisolone, but I’ll have spares this time. More scans, X-rays etc. Thank God for NHS in UK. I’d be bankrupt by now without that!. God bless.

@aslightlyatypicalpresentation 8 месяцев назад

@@heatherthompson3670 It sounds complicated, but I'm so glad things have moved forward for you with the RA at least. Completely agree about NHS care! Thank you and blessings to you too.

@popsey87 2 года назад

I've been on methotrexate tablets form for 10 weeks now with significant hair loss. It's really effecting me emotionally, so much so I've been debating whether to come off the medication. I've got an appointment next week to discuss moving to injections instead so I'm really hoping that could make the difference. Seems like most arthritis medications are not without side effects xx

@aslightlyatypicalpresentation 2 года назад

Hi Samaya, thank you so much for sharing your experience, though I'm sorry to hear this is affecting you too. I think you're right about arthritis medications - they are strong stuff! It is hard having the hair loss side effect, especially when the symptoms themselves are more than enough to deal with. I really hope moving onto injections will improve things for you - I didn't know until Doot commented it below that they can help in that way. Also, are you being prescribed folic acid, because that can really help too? The maximum my rheumatology team will prescribe is 5mg 6 days a week (I think that's quite standard but don't know for sure) but some people are started on a lower dose so increasing can make a big difference. In case it's in any way helpful to mention, I found that the excessive hair loss did slow right down after a few months. I think that can happen once your body gets used to the methotrexate. It didn't help with the hair already lost of course, but it is at least having a chance to grow back now. Will keep my fingers crossed that one way or another it resolves for you xx

@cbisme6414 2 года назад

@@aslightlyatypicalpresentation hi, I'm into my third month on Methotrexate 6x 2.5mg tablets once a week and had very long and thick hair in beautiful condition, I've lost half of it now. I tried to put my usual claw clip in my hair and it literally fell out, it was too big to grab my hair and stay in. I've been told to take 1x 10mg Folic Acid tablet the day after but I noticed here you're taking the FC tablet more than that? So what strength are you taking? I was on Cyclosporine 300mg and Prednisolone 50mg a day for 3.5 months before but had terrible mouth ulcers, nausea constantly, muscle atrophy and now walking with a walker because of it, so was changed to the Methotrexate and I'm not happy with losing my hair so any advice would be greatly appreciated

@aslightlyatypicalpresentation 2 года назад

Hi @CB, I'm sorry to hear you're experiencing so many difficult effects of your medication, it sounds like you're dealing with a lot right now. Where I live at least (UK) you can definitely have more folic acid, and a lot of people find that helps with hair loss and other side effects of methotrexate, I take 5mg six days a week - every day except the day I take mtx. It's definitely worth a try. Some people find the hair loss slows down or stops after 2-3 months too - it's improved a lot for me now. I will keep my fingers crossed for you - wishing you all the best.

@to_the_point947 2 года назад

Samaya, when I was diagnosed with Psoriatic Arthritis & prescribed Methotrexate, I immediately asked if I could go on injections. I did this to sidestep any gastrointestinal issues which worked. I have hair loss & fatigue but never nausea/vomiting. From my experience let me ease any concerns about injecting. It is quick and painless. Now I don't like needles but you don't really deal with needles as such. The gadgets are so simple. Injections are easy peasy 🙂

@dianekelly3452 Год назад

I’m 72, and I’ve been on MX for 23 years. I lose at least a brush full of hair every day, but my hair keeps growing. I’d advise staying on MX to control inflammation. Besides, I believe it is more affordable than newer. medications.

@to_the_point947 2 года назад

I have been diagnosed with psoriatic arthritis. Since my methotrexate dosage increased I've noticed hair loss. First thing I did was get my long hair cut short & had my folic acid dosage increased to 6 days a week rather than once a week. It seems to be getting worse i.e. just seeing hair everywhere, for some reason when I'm hanging the washing out & noticing it stuck to my arms or hands. Your hair looks perfectly normal now, I wish you well.

@aslightlyatypicalpresentation 2 года назад

Thank you for writing, I appreciate you sharing your experience of this. That sounds very distressing. At least, that's how it felt to me soon after diagnosis, with so many uncertainties in the situation. I hope you find something that can help, or it settles down for you. I noticed that the effects of methotrexate on my hair loss started to lessen several months after the dose increase, but by then a lot had already been lost. I'm prescribed other medications that I think can have the opposite effect, but no idea if or how they're interacting, it's so complicated. It is nice to hear that my hair looks normal, thank you - the haircut definitely improved its appearance but all of the new hair is now having to grow out, so it's created a kind of 'shelf' that's currently just a few inches long! Styling it a bit helps, and hopefully it'll keep going. Wishing you well too.

@carmendragoi8820 2 года назад

Yes I have been on methothraxate for one year.... I just get short haircuts so now it looks fine. I used to wear my hair long since childhood...Stay strong, pray and just think that a disease is actually a blessing in disguise.

@aslightlyatypicalpresentation 2 года назад

So glad to hear you've found a way to wear your hair that works for you, and thank you for sharing your experience. I think I'll probably need to keep my hair shorter for a while too. It's taking a little time to get used to it, but I'm getting there!

@SaraAKasem Год назад

May I know what was your dosage?

@aslightlyatypicalpresentation Год назад

Hi, I take 25mg methotrexate, by injections

@kennedyandkeeley Год назад

Hey! I’m 16 and have been diagnosed with a form of scleroderma and have to start taking methotrexate injections once a week for at least a year, and I’m really scared about the hair loss aspect. I found your video and it’s helped ease some worries I have regarding starting treatment. Thank you!!

@aslightlyatypicalpresentation Год назад

Hi, thanks so much for stopping by! Sorry to hear you're in a similar situation, though. It can be a daunting medication at first BUT can also be really effective, so fingers crossed you see good results. A lot of people don't get the hair loss side effect and hopefully that'll be you. Folic acid helps and may be prescribed alongside for that reason (it is for me). Wishing you all the very best with your treatment!