If I could swear I would!! Loss of locks!: I have... - NRAS

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If I could swear I would!! Loss of locks!

RosieA profile image
23 Replies

I have actually been swearing a lot - blame watching the King's Speech again. Suspected but confirmed my fears after dying my hair (a new experience). I had noticed a slightly raised lump on temple about 4 weeks ago and fiddled with it as we all do and then promptly forgot about it. However, bump now looks like a pale 4mm mole - with 1 hair follicle left in it and around it for about 20mm each direction hair is sparse. Questions:

Could this be due to Methotrexate?

Could it be due to a connective tissue disease as I carry ANA?

Has this happened to you? If so what happened?

Will I ever stop living part of my life on this site? ( not that I don't love hearing from you all and valuing the incredible support - I sincerely do, but I feel at present it's always with saddness or anxiety that I reach out) So sorry.

Self pity over, it's back to cup of tea and swearing for now. xx

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RosieA profile image
RosieA
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23 Replies
allanah profile image
allanah

I think any mole , bump, lump etc should be checked by a doctor. It could be anything , maybe hair dye but its worth a check earlier rather than later do you think ?

RosieA profile image
RosieA in reply to allanah

Yes. Will be calling. I felt something well before the dye, the dying revealed how thin the hair had become in that general area as I rarely examine myself that closey. Have read that it can be related to CTD and the sooner treated the better.

oldtimer profile image
oldtimer

It would be sensible to have it checked by a doctor rather than worrying about it. Not due to the methotrexate I would think. But it's likely it's been there for ages but you only noticed it when dyeing your hair.

RosieA profile image
RosieA in reply to oldtimer

Thanks Oldtimer - I remember feeling it as new and looked but nothing shouting out at me. The thinning hair on only this side is around it so will be calling the Rhuemy team as hair loss was a question the Consultant asked me only a couple of weeks ago and I gaily said 'No' - I sort of assumed that the general condition of my hair was due to the meds - just goes to show - assume nothing.

Summerrain14 profile image
Summerrain14

Bless you Rosie. You are going through such a difficult time. I would see if you can get the lump checked or if you have an email address for your rheumy team to send a photo for them to review? x

Nuttyshirlz profile image
Nuttyshirlz

I would get it checked out by someone who knows what they looking at. I don’t remember reading anything about lumps with mtx unless I’ve missed something. But could be something but then it might be nothing at all. You might have knocked yourself with out even realising. 🙂

RosieA profile image
RosieA in reply to Nuttyshirlz

Thank you for responding. No, it's more like a lumpy pale mole. I have read that you can get hair loss with scarring. I hope it's not but the hair loss is becomming apparent. It could of course be a mole developing and hair loss happening concurrently! I will be contacting the RA team on Tuesday as although no longer on MTX I am taking Leflunomide and Hydroxycocholoquine both of which mention hair loss. Deep, deep joy.

RosieA profile image
RosieA

Thank you! I am getting fed up of phone calls really! I think I am at the point that I would rather have a face to face. I am a little concerned that it may be part of another Automimmune connective tissue disease, as I mentioned to Oldtimmer, hair loss is a question that the consultant asked. I so said no, thinking lack lustre, flat hair just part of the flare! More fool me. But when I saw the loss I was reminded of my hair-dresser a few months ago mentioning he thought I had lost a bit.

I struggle with phone calls especially when I am feeling fatiqued. I think I naturally pick up more on non-verbal cues and therefore find face to face far more productive. How are you doing now? x

HappykindaGal profile image
HappykindaGal

Can you take a pic of it for the doc if you don't want to see them in person?

RosieA profile image
RosieA in reply to HappykindaGal

I can if needed but am coming round to it's time to meet. Have only seen Consultant once since diagnosis 8 months ago! No ones fault. Had chats but think it's time to meet. It's been an 8 month upward battle but in all honestly don't feel any better and now the hair!!!

medway-lady profile image
medway-lady

I don't know about ANA but I have pANCA is that any help and I have no idea what it is but got tested for so many things when looking for the cause of my AKI. As I can't change it I don't worry or think about it. I've no hair loss though or bumps and lumps either. I hope you get sorted out quickly. x

RosieA profile image
RosieA in reply to medway-lady

Gosh! What is AKI? Yes, I hope I get sorted too thank you. Am sure all the axiety certainly doesn't help. x

medway-lady profile image
medway-lady in reply to RosieA

Acute Kidney Injury and RA. I can't go into details but got tested by the Nephrologist for stuff the RA doctor never knew about. Such fun, not. lol xx

RosieA profile image
RosieA in reply to medway-lady

Oh I am so sorry. It is such a complicated and insidious disease. I do so hope you are feeling stronger and that all is working well for you. x

Gnarli profile image
Gnarli

Go on RosieA, have a good curse. Apparently scientists have found that a bit of effing and jeffing does a body good. Seriously, though, as others have already said it sounds as if it's time for an expert eye to be cast over your bump. It could easily be something simple but always worth checking. My Dad had a slow growing lump on his head. It was a lipoma, a fatty lump, totally harmless but a little unsightly.

RosieA profile image
RosieA

Oh Thank you. Yes of course, one always starts to assume the worst. I am a moley person, so it may well be. I am going to call the nurses on Tuesday as there is no doubt that there is some hair loss in this area and if I can stop it in it's track I will endeavour to do so. It may be that coming off the MTX will do the trick - I felt so dreadful on it. I'll pass it over to the experts as I have a niggling worry that since I am ANA positive it might mean that I am prone to some overlapping symptoms from other connective tissue diseases. Would just love to rule that out. Hope your feeling well and able to enjoy these beautiful days. x

P.S Agree with the experts re a good old curse. I think I made up for all the time in a Convent school and then as a teacher!!

Sheila_G profile image
Sheila_G

Hi Rosie. I would always say start with your GP unless you know something is RA related which I don't think it is. Your GP will give you the best advice and tell you what to do next. Call them tomorrow (won't be in today) Try not to worry. It could be something and nothing. Todd luck. x

RosieA profile image
RosieA in reply to Sheila_G

Thank you. I think I will refer back to the Consultant as it is something that she has asked specifically about. My GPs although great do tend to refer me back to Rhuematology - which I respect as it is such a specialist area. But will endeavour to try and not to worry. Have done more reading around it and it appears clear that unless very unlucky either a change of meds will help restore hair loss / or in the same way that the correct meds will help prevent it if there is an overlapping symptom from another CTD. A phone call tomorrow methinks, especially in the light that I am now back on steroids and taking two new meds. x

bubblyalex profile image
bubblyalex

I have read that Alopecia is a side effect of all DMARD’s. It’s definitely a good idea to get proper medical advice. Good luck!

RosieA profile image
RosieA

Yes, I have read this too! I think I am borderline between staying on Leflunomide or moving to a Biologic (which I believe is kinder on hair -so says the blurb! Hum!) I think I have been so tired it has knocked a considerable number of points off my IQ and in lucid moments I do recall my hairdresser making a comment on how my hair had thinned out just after my diagnosis. Wondering if has been a slow creep. Thank you. Will post if I get any news.

bubblyalex profile image
bubblyalex in reply to RosieA

Yes please let us know 🙂

Valerietemps profile image
Valerietemps

Hi Rosie, I know there is something called Alopecia Areata which causes hair loss in one spot. My Mom had that the size of a quarter, on one side of her head. It did fill in after a year or so. The mole underneath is suspicious though.

RosieA profile image
RosieA

Thank you. Will be calling RA nurses tomorrow as started Leflunomide on Saturday and no only worried about it not helping with hair loss but also noticed yesterday and today a sore throat developing - one side rather red and since I have not left the house or garden for over a week (and then only for blood tests) I'm a little suspiscious. Oh for some peace and quiet for body and mind.!! I hope your mum's hair grew back. I had a friend who developed Alopecia induced by stress. After a couple of years it all grew back thankfully.

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