does anybody else have hair loss?

[emmaj]

its coming out at the roots again, it grows back because i have tufty bits of hair at the top of my head were the regrowth is but its just started to happen again after a few weeks break, and funnily enough ive been getting restless legs and jerking again - could this be a relapse

[MaryH]

Hi there,

Yes, I have hair loss. Since starting on warfarin in 2007 my hair has changed completely. Warfarin got rid of my headaches and allowed me to feel safer, but oh the hair. Fine, wispy, very easy to fall out, and just generally not my hair. I have always had it fairly short but when I had it cut I had little bits that stuck up and I was unable to do anything with it. For the last few years I have just let it grow, and put it up when i cannot think of what else to do with it. However, I know I should not mind but I do and do not want to look stupid with long hair in my sixties!! you know the old 16:65. I do not know what to do with it, but at least I do have some. Warfarin is keeping me safer and the headaches are gone but a little bit of vanity still keeps popping up. I am a selfish sod. Much love MaryH xxx

[paddyandlin]

Hi Emma,

welcome to the group i am sorry to hear about your Hair relapse, I hope other people may be able to answer your question. The only advice i can give is speak to the doc and see what blood thinners you are on, I have never heard of people loosing there hair with APS but then again this illness surprises me all the time in what symptoms it can come up with.

I will look to see what i can find and please do let us know what you Doc says

paddy

[camerel]

My hair also has unfortunately changed drastically. It is always falling out and is thinning. I used to have thick gorgeous hair and it is now thin and lifeless. I asked my doctor about it and he assured me that my warfarin is not the culprit. I find this hard to believe! I have heard other people say they experienced hair loss from warfarin but doctors still insist it's not true. Again...I personally feel the blood thinners are responsible as the hair loss began after taking that medication. Fortunately I feel better on the medication even though I'm not at 100%the and so I guess the hair loss is somewhat worth it.

[emmaj]

thanks all - im only on heparin at the moment,and have been on clopidigrol and aspiin in the past - im due to start warfarin soon, hoping it doesnt get worse!!!! My doc just blames the prgnancy - but after a year it shouldnt be happening still and in all the other 4 pregnancies ive never lost it this bad and for so long, i suppose blood thinning could be responsible but it always seems to follow when im generally feeli9ng more unwell with the aps?? another aps mystery .......... x

[Sarita]

Hi there

So sorry to hear about your hair. I keep having problems with my eyebrows, they thin out towards the outer part and then grow back. Its frustrating as just when you think its growing back, it all falls out again.

Perhaps your doctor can advise, maybe there is a deficiency in your diet that you can fix.

Big hugs

Sara

[annie330]

Hininwas started on heparin and moved onto warfarin. Not long after starting the warfarin my hair started to fall out, I thought it was the warfarin but the rheumy told me its the lupus, I have lupus, APS and a query over cerebral vasculitis.

My hair did thin quite a bit and was noticeable but then it grew back and I haven't had any further issues. So I don't think it was the warfarin I think was just a coincedence.

[Melissi]

I am a 45 year old going through another cycle of hair loss. My first episode of hair loss occured at the age of 13. Doctors were at a loss. A dermatologist that saw me suggested Lupus but it was never followed up. I had periods of my hair thinning until my early 20's then it stopped along with my miagraines. My doctor at the time said it was possibly due to me being on birth control. Fast forward several years and several miscarriages. Have my son in 1999. Less than 6 months later I was almost completely bald, lost all body hair and my miagraines are back worse than ever. Doctors baffled and then I had my first stroke. Diagnosis came in 2002 with Hughes. To this day I am "blessed" with no longer needing to shave my legs or underarms. Currently going through an episode of bald patches. My eyebrows never came back, found a wonderful dermatologist that works with a tattoo artist who created my eyebrows. Try to tackle with humor but understand the vanity issue. My personal opinion is that Hughes is an individual illness. None of us will experience the exact same thing as someone else since each of us is made differently.

[MaryF Administrator]

I am not on thiners, other than aspirin, however my hair was falling out, (finally at 46 I have passed a Lupus test), the usual, you don't pass tests rubbish,despite having obvious clinical symptoms since my teens. However also the outer part of eyebrows. Since found out I have hypothyrodism, which really goes with the autoimmune spectrum, including also vitamin D problems etc, worth checking it out. Since starting on my own individual programme for this part of my illness hair growing back. Unfortunately this disorder is often not picked up and rather like seronegative hughes, the blood tests do not pick up everybody until some are significantly ill. M F

[Lesley_D]

I am also losing my hair, my nails are brittle - the positive to this ???? - less waxing but back to being serious, St T's have told me this is nothing to do with APS...

[PaquitaV]

Hi, I've also had considerable hair loss for years now, though fortunately not quite as drastic as described in some of the replies here. It has thinned out evenly by about two thirds. I didn't think it had anything to do with APS (it probably doesn't) but when I mentioned it to my rheumy he immediately prescribed folic acid twice a week, which for me does wonders. Check with your doctor first about dosage though. All the best!

[emmaj]

Thats very strange because i was prescribed high dose folic acid and it was the least traumatic of all my pregnancies because of it - for some reason we do not seem to process folic acid like we should - which doesnt help the plac enta in pregnancies at all which are already sensitive to the effects of the antibodies-never thought of taing it in general,thanks all x

[DentalImplant18]

I was informed that my hair loss from from the "trauma" of dental implant surgery 10/2018. I had full top and bottom implants and since them my long have is falling out by the hand fulls. I wear it long because I don't want to spend a lot of time every day messing with it so I wear it up. But OMG it's everywhere in my house to keep my tub drain unclogged is extremely gross and don't get me started on cleaning off the roller of my vacuum. I had the normal amount of hair loss but immediately after the first time I washed my hair after the surgery the volume increased dramatically. Like others have mentioned it is perhaps vanity but also a pain with the clean up.

Any one else have this type of reaction? Thanks

[HollyHeski Administrator]

Hi I see you have just joined - this forum is for people with Hughes/APS syndrome. Have you been diagnosed with this?

I suggest you see your doctor for your hair loss?

[emmaj in reply to HollyHeski]

Hi, I’ve been joined for about 8 years!

[HollyHeski Administrator in reply to emmaj]

Hi, yes I see but my answer was to Dentalmplant18 above.

Would you like me to close this thread to stop further answers?