I went to my surgery today to be instructed in how to use metoject pen. I was a bit nervous about the injection and the whole mask, social distancing routine. So I was shocked when the nurse said she would have to check with the doctor before proceeding because I have a large bald patch on the top of my head. Apparently it is one of the symptoms of having had covid 19. Back in March I had been on sulfasalazine and had what I thought was a bad reaction to it. Flu like symptoms and massive flare then my hair started falling out. Rheumy switched me to met injections but wanted me to see someone about hairloss. I haven't been able to see dermatology because their waiting lists are so long......So, GP eventually gave the go ahead today for methotrexate injection. I am now a bit stunned. Has anyone else heard of this?
First metoject , nurse thinks I've had covid!! - NRAS
First metoject , nurse thinks I've had covid!!
It’s funny u should say that as my husband has a bald patch I noticed it when I was cutting his hair last week very strange
I had Sulphasalazine at the start of RD, back in 2015, first drug prescribed. I did have a reaction to it; temperature, felt exhausted, like I had flu type infection. Blood work not normal for three weeks. Rash all over. Weak as a kitten. Nasty.
But COVID-19... did they do a test today?
It seems that media have been reporting hair loss in some people with COVID-19; let’s hope not you.
Thank you for replying. They didn't do an antibody test, said dermatology would if other test drew a blank. I had exactly what you described back in march and the rheumy said she didn't like the look of my bloods and just said sulfasalazine is not for me. Hopefully metoject will be.
Well that seems encouraging... not much hair loss for me but DMARDs vary in that effect.
Best of luck with Metoject; I had that next, along with hydroxychloroquine.
I am a bit nervous about the side effects. I'm hoping that if the hair loss is an immune response maybe the methotretate will help. The GP said that sometimes they use it for that purpose. So here's hoping. Thank you for replying it's good to have other people's input. I don't know anyone else that has RA so this site is a comfort.
This site has a great community. They are often a comfort and source of good tips. 🙂
Take care on the mtx I couldn’t tolerate it but kept on with it until I was so ill if you have any problems get to you dr straight away. 🙏🏽
There have been reports of hair loss with Covid19, but it doesn't seem to be included as a diagnostic feature. The most likely explanation is that it can be associated with any severe infection - including, of course, a flare of Rheumatoid Disease.
Hope this explanation helps:
Febril Telogen effluvium is a form of non-scarring alopecia characterized by diffuse, often acute hair shedding. Febril Telogen Effluvium is a reactive process, triggered by metabolic stress, hormonal changes, or medications. Common triggering events are acute febrile illness; severe infection; major surgery; severe trauma; postpartum hormonal changes, particularly a decrease in estrogen; hypothyroidism; discontinuing estrogen-containing medication; crash dieting; low protein intake; heavy metal ingestion; and iron deficiency. Many medications have been linked to telogen effluvium, but the most common are beta-blockers, retinoids (including excess vitamin A), anticoagulants, propylthiouracil, carbamazepine, and immunizations.
Febril Telogen effluvium can occur in people of any age, any gender, and any racial background. Telogen effluvium can occur in either sex, though women have a greater tendency to experience this condition because of postpartum hormonal changes.
Febril Telogen effluvium is triggered when a physiologic stress causes a large number of hairs in the growing phase of the hair cycle (anagen) to abruptly enter the resting phase (telogen). The growth of the telogen hairs ceases for 1 to 6 months (on average 3 months), though this cessation of growth is not noticed by the patient. When the hairs reenter the growth phase (anagen), the hairs which had been suspended in the resting phase (telogen) are extruded from the follicle, and hair shedding is observed.
Patients will report hair shedding, usually without other symptoms, with a relatively abrupt onset. By definition, in acute telogen effluvium, shedding lasts less than six months; often the period of shedding is much shorter. A careful history will identify a causative event occurring approximately 3 months before the onset of the shedding (range from 1 to 6 months). Quite often the patient has fully recovered from the acute illness and fails to see the connection between the illness and their hair loss.
Thank you so much for this info. I had a small operation just before lockdown started and I did wonder if it was the stress that caused the sudden hair loss. I guess I'll have to wait to see what dermatology say. And...try not to stress about it !!
Also worth pointing out that hair loss is a common side effect of mtx: I’m assuming you’ve been on oral since coming off the sulfasalazine in March?
When I started mtx in Jan, I had a small degree of receding hairline as a normal part of aging/male pattern baldness. By April, I realised that I was suddenly extremely thin on top where it had been fine, and now routinely wake up to hairs all over my pillow and the bedside cabinet. In the space of 7 months I’ve gone from only slightly receding to having to give serious thought to shaving my head in the near future as a result of the increasing bald patch(es) I’ve got. If you have been on oral mtx, then I’m inclined to think it’s much more likely that than Covid. Still, looking on the bright side, if you have had covid, at least you’ve come through it ok!!! With telegenic effluvium, the hair does usually grow back, whereas with mtx my understanding is it doesn’t until/unless treatment is stopped, so you might get a clue that way in time. Did they offer you an antibody test?
I've been on MTX Metoject 15 mg since September last year until beginning of March this year and never lost a hair. It was increased to 20 mg and within a couple of weeks my hair was falling out like crazy so much so that I was afraid to wash it (although I did). It is now embarrassingly thin and I have been reduced back to 15 mg with SSZ added. My point here is that MTX doesn't have to be in tablet form to cause hair loss.
I know, I only said oral on this occasion because this happened in relation to the OP’s first metoject. I was trying to establish if they’d been on mtx since March, or if the metoject was the first dose: it’s not going to have caused the hair loss if they haven’t been taking it until now.
Did they up you to folic acid 6 days a week to try and combat the hair loss. I hope I don’t lose mine. It’s taken years to get it this long... no decades 🤦🏻♀️
I'm the same. It's taken me years to grow it this long, I'd just got my hair how I liked it. It definitely wasn't the methotrexate that caused this . I hope I can get an appointment with dermatology soon to get to the bottom of it. I've got a high dose of folic acid and I'm eating biotin rich foods, hope this dose the trick.
So I found out last week I’d been incorrectly prescribed folic acid by my previous rheumy. On the prescription label on the box it said take two pills one day after MXT. My current rheumy nurse said I should have been taking only one pill on a day... so one pill one day after MXT and the second pill two days after MXT. She has upped the folic dose to one pill 6 days a week.
Well I was wondering actually, I've been instructed to take 15mg (3 tablets ) all at once the day after mtx. I suppose it depends how the body metabolises folic acid.
I don’t think they could know that when it was prescribed. There was so much wrong with my previous rheumy. She only prescribed the calc, vit d and folic acid as an afterthought because I asked about it. My new dept said it’s pointless for side effects to take the tabs all on one day. It has to be a therapeutic daily dose. I didn’t and don’t trust my previous rheumy at all. I was in hosp for almost two weeks because she asked me to come in and she never once saw or came to see me. I had a crp of 285 and she shoved me at orthopaedics ... in the end only saying well we’ll treat it as if it’s Inflammatory arthritis after I had left hosp with ortho having done an arthroscopy. My doc was livid with her not seeing me ... even before I was admitted. He told me after I’d left the hosp if I hadn’t been called in when I was he was going to make a complaint on my behalf.
Oh no, I'm so sorry you had to go through that. At least your doctor sounds supportive. My treatment has been a bit of a shambles because of lock down. I haven't had any meds since April. Just managing on paracetamol and ibuprofen. So hope the mxt will help. I've got to ring rheumy about starting blood tests, they haven't given me any instructions . They just sent me a prescription through the post for the folic and mxt! This site is invaluable to me I'd be in the dark otherwise.
Wow. I’m sorry you have been left like that. Can’t they give you codein/naproxen or some other pain relief to tide you over whilst you wait for the meds to kick in.
If it helps ...
I have blood tests every two weeks at the start for 6 weeks then it moves to monthly for 3 months and the quarterly thereafter. I started MXT three weeks ago now. I take it in evening and although week one was quite difficult it hasn’t been so bad since then.
I have also had a stop to blood tests. because of covid but heard this week that I can ring my hospital for a test now. They are trying to catch up!
I've been on 5mg six days a week since day one. My rheumy said it should have taken care of the hair loss!! He said he would wait another three months before referring me to a dermatologist to see if the reduction on MTX stops the hair loss-I could be bald by then. All my bloods were fine.
Oh waiting doesn’t sound good or fair to you at all. 😔
Just seen this! Methotrexate made my hair fall out in handfuls, it is a side effect unfortunately for some. Stopped it at Xmas and my hair is nearly back to normal. The drugs we take for our RA can be very powerful indeed for some of us with nasty side effects. Stay well.
I'm glad you got your hair back Feank, it's so depressing. You stay well too and thanks for the comment. x
Thank you for you reply. My surgery dosen't provide any testing. I haven't been on any treatment except one steroid injection in May. The main large bald patch has got white hair growing back, my hair is dark so looks weird but at least it's something. I'm still losing hair every day though in other places. I'm trying not to stress about it but I find it very upsetting because I have long hair.
I know how you feel as in late March when mine started, I couldn't believe how much I was losing and to be honest, I didn't have a thick head of hair anyway. You can now see my scalp very easily and I have almost nothing to tuck behind my ears. I feel embarrassed going out too.
I lost some of my hair with mtx luckily I have really thick hair and wasn’t that noticeable. 🙏🏽
Yes, a friend of mine works as admin on the wards at our local hospital and she was saying that some of her colleagues had hair loss as a result of Covid.
I also know someone who has had hairloss with Covid
There are many symptoms of covid but I have never heard of that one. x
oldtimer's post might explain why hairloss can be bought on by Covid
Well, cakenomore, this is a new one! Never heard of bald patches being a sign of having covid19. But there is so much awareness now among doctors and nurses about this covid virus, and in some hospitals testing for covid is carried out two days before appointments.
I hope this doesn't take too long to sort out. Many drugs can cause hair loss or, at least, thinning, perhaps sulfasalazine is one of them. I know methotrexate can have that effect, counteracted to some extent by Folic Acid.
Good Luck!
I have heard that covid 19 causes hair loss in some cases just like taste and smell goes!
Wish you better and hope you get to the bottom of it ..
Thank you. It's just a guessing game at the moment. But at least some of my hair is growing back. I wonder if I will have a full head of hair by the time I see dermatology.....
Hope your hair returns soon. Good luck.
Hi I too had hair loss when using methotrexate! My hair became very thin and noticed lots of hair in the brush and shower! I was advised to take folic acid every day but not injection day. I came off methotrexate in Nov and my hair has started to regain growth and strength. Methotrexate is a very strong drug indeed. Hope you stay well and safe.
Thank you. I've just started taking mxt and hope it dosen't negatively effect the hair loss I already have. Did you get any benefit from taking methotrexate?
Hi yes I did, I took it alongside cimzia, a tnf drug, and eventually after 3 years they both stopped working for me last November. Good luck with it all, it's all about what suits best. X
Yes. Melissa Milano, a TV star here in the US sent a video on Twitter to make a point to the younger generation who were gathering in large groups without masks that Covid is indeed a serious matter. She brushed her hair to illustrate how much came out. The after effects of Covid are not to be reckoned with. Hope you’re doing well. Don’t worry about the hair loss. There are a variety of products that can help. Also, I was losing hair while on MTX and my rheumy told me to take biotin, in addition to my folic acid, to help and it did.
Thank you for yout reply. I have to admit I'm finding it very difficult. I'm looking at wigs now because I have large areas of white baby hair to try and cover. My rheumy told me it is reassuring that it is growing back,but...it's a long wait for it to go back to how it was. I'll look I to biotin. I'm already taking the full dose of folic acid so hopefully that will help with the MTX thining. I need all the help I can get!
I hadn’t heard if that, but I think the nurse is wrong to jump to the conclusion you’ve had COVID based on a bit of hair loss. There are many other causes of hair loss and it sounds as if you had a bad reaction to sulphasalazine, rather than a dose of coronavirus.
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