Hair loss with Sjogren ?

[Mariechristine]

Any hairloss hair remedy ? I started losing my hair 4 years prior to official diagnosis. To this day i am still not sure it’s due to Sjogren. On Plaquenil for 3 months. Still losing so much hair, i willl have to cut it short. I am upset. This hair loss is relentless. I have done everything for 4 years, bloodwork, supplements… my vitamin b is a bit low but Not to a point that it would cause so much hair loss. Don’t know what to do, who to see. Rheumatologist says Sjogren doesn’t really cause hairloss. 😞

What is going on …..? Anyone losing hair with Sjogren ?

[Davinal1-UK]

Good morning Mariechristine. I too have questioned my Rheumy before Christmas about frontal hair loss with sjogrens. I have primary sjogrens and have been on Hydroxychloroquin for years. He brushed it off very quickly, too quickly for my liking, so I researched it. Having extensively trawled through many articles on the Internet, all results point to Hydroxychloroquin being the common factor.

However, I am on 200mg daily to reduce the aching bones I suffer daily and, therefore feel that I would prefer the tablet and hair loss to the daily bone ache. I have since cut down my tablet to one every other day, but it is very early days to see any results for me. I am hoping to stay on this dose to maintain health,but hopefully help with the hair loss, I will have to wait and see. Good luck with your quest to find answers and look forward to seeing any other answers as they come in.

[richblessings in reply to Davinal1-UK]

I have got hairloss since l was diagnosed 6 years ago. My scalp gets very itchy and my hair sheds more at these times. The doctor found out my zinc level is abnormal and this was the reason

[Davinal1-UK in reply to richblessings]

Thank you richblessings for replying. Was your zinc level abnormally low, as apposed to high? Last night, I looked this up on the Internet, and yes, this could be something that I suffer with. I am the first to get a cold, I am a very slow healer and I have a number of gastronomical issues.

I would like to look into getting my levels checked, seeing a doctor at the moment, is a rarity, so it may take some time after telling the receptionist that I would like some vitamin deficiency tests done!

Thank you for replying, I shall look into it.

[richblessings in reply to Davinal1-UK]

Yes Davinal1-uk my zinc levels where abnormally low. I also feel very cold. I am a slow healer and take tablets lansoprazole 30mg per day.I take large dosesvof zinc which is prescribed from the doctor when my levels are low but as soon as I stop taking them and get to a normal level within a few months my levels drop again below normal. I'm being checked at the moment to find out why this is.

I hope you get see someone about getting your blood work done. I am finding that the doctors know very little about sjogren's syndrome and I have to try and explain to them. But of course the medical profession don't like being told and think that's I am being a bit neurotic.

[dg70]

Hi, I had thinning hair long before Hydroxy if you're taking that. I lost a load when I was on antibiotic for several months but it did seem to recover then a few years ago it started thinning very quickly (in my early 40s). I personally have found using caffeine shampoo like Alpecin really good. It took many months to see a change and I wash my hair every day as suggested to get the best effect but it thickened considerably the hair I had left. It doesn't produce more. In the last month I've tried a bioten (Vit B7 by another name) supplement from Holland and Barrett and I can say it has made a small improvement to the thickness and density of my hair already. It's been good for nails too as mine split and crack all the time. It's giving things a go that are not going to be harmful to take and seeing if they work. It's the worst being a woman and losing hair and dealing with all the Sjogrens issues at the same time.

[Mariechristine in reply to dg70]

Thank you. I started losing my hair years prior to diagnosis so it couldn’t be due To Plaquenil. Thanks for your response. It will remain a mystery

[karmel]

This is not about hair loss but about thin finger naiIs and I think a lot of us with SS do suffer with either one or the other, that is the impression I got when I used to go to the SS support group meetings. I have secondary SS and have terrible problems with my very thin fingernails, they split, tear, always catching on clothing. Had blood tests that were all normal and 2 years on from the initial blood tests I am still having problems with my nails. The last 'phone consultation I had with the gp who said you have SS uh? It says on here, that SS can cause brittle nails, so there was nothing that could be done, so just carry on doing what you ae doing now. I have eye drops on prescription for my dry eyes and monitored at the eye hospital, I get Durphat 5000 toothpaste on prescription from the dentist so why is there no help for hair or nail problems.

[kalona46 in reply to karmel]

Natures Bounty Hair, Skin and Nail gummies with Biotin and Collagen. Also try Jamaican Black Castor oil

It works the fastest for thinning hair.

[Mariechristine]

Thank you so much

[kalona46]

You might try Jamaican Black Castor oil. It does work. Good luck. I got mine from Amazon.

[Yellow-cello]

I just bought monoxodil foam on recommendation of my dermatologist. Also taking Vitamin D supplements. I’m turning 46 this year and several of my friends are saying they are noticing thinning themselves so I wonder how much is just age?!