Hair loss

[smeackles]

Has anyone who suffered hair loss whilst in first stage following diagnosis and trial and error to find meds that work found any grew back?

Daughter (aged 24) diagnosed in June and been on Hydroxychloroquine since then, started Axathioprine end of Sept (whilst been on varying dosages of Prednisone - been on 30 dropped to 25, 20 and just moved to 17.5). Last month saw Dermatology who provided steroid cream for face and another none steroid to use alternative days on face and another gel for the scalp where sore areas and hairloss which only started about 2 months ago.

We understand we won't see the Azathioprine showing if it is doing enough or even anything at all until the end of the year and Hydroxy (being an immune moderator not a suppressant) is doing what is can already, with steroids just trying to help reduce the varying symptoms whilst waiting.

But the hairloss is continuing with patches and areas getting bigger - I can't say that even when being on the highest dose of 30mg of prednisone it has made much difference to the follicle damage lupus is doing, it appears to just be continuing.

Has anyone had similar experiences whilst waiting to find the right meds for you and get it under control for the first time? Did anyone find any grew back?

Thanks for any advice or experiences shared.

[Spanielmadlady]

Hi. Whilst it isnt something ive experienced hair loss can be a side effect of azathioprine which I tried first but it didn't work for me. It can also be a side effect of tacrolimus which I've just started .fingers crossed it settles down once your daughter has adjusted to the azathioprine x

[smeackles in reply to Spanielmadlady]

OK - I didn't know that was a side effect - I am perplexed why rheumatologist choose to start her on this upon the appointment when we highlighted the start of the hairloss with concern. To then prescribe something that could possibly increase this symptom rather thank aid/hinder it leaves me cold. I will maybe suggest my daughter rings the rheumatology department and ask them. Knowing all the other side effects of this drug I am concerned about it anyway. she is now 6 weeks between blood tests to see all is ok.

Thank you for the information.

[Spanielmadlady in reply to smeackles]

Sometimes the potential benefits outweigh side effects and as I understand it hair does recover once adjusted to these drugs. Whatever drug is prescribed they are all very strong and all come with side effects unfortunately. Azathioprine made me really poorly because I developed drug induced hepatitis but the liver does recover....took about 3 months.ive been on mmf and hcq for 5 yrs now with the tacrolimus added in 6 wks ago to try and reduce my steroid burden.my bloods have been every 2 wks and have just gone to monthly . Best wishes to you both x

[Mrs6egg in reply to Spanielmadlady]

Hiya everyone.

Having just read some of your posts I’m wondering what Tacrolimus is as I’ve never heard of it and wonder what kind of medication it is and what it’s prescribed for?

Thinking of everyone on this site. We’re all going through so much….

Mrs 6 egg

xx

[Mrs6egg in reply to Spanielmadlady]

Medication query 😊

[Spanielmadlady in reply to Mrs6egg]

It is an immunosuppressant. I don't think it is used very much . For my treatment it's hoped it will allow me to reduce my steroids whilst keeping my immune response under control which mmf has so far failed to do. X

[Suvi8901 in reply to Spanielmadlady]

Tacrolimus monohydrate? My dermatologist tells me it’s an immunomodulator not an immunosuppressant like MMF.

Is she correct or am I splitting hairs (pun intended)? I’ve been prescribed dermovate (steroid) and Protopic (Tacrolimus) lotions to be used alternate weeks.

They probably have different mechanisms of action?

[Spanielmadlady in reply to Suvi8901]

St Georges NHS Trust

stgeorges.nhs.uk ›

What is tacrolimus (Adoport)?. Tacrolimus (Adoport) belongs to a group of medicines called immunosuppressants or antirejection medication.

I'm taking tacrolimus in tablet form .

Hope this answers your query . SML

[Suvi8901 in reply to Spanielmadlady]

Thanks for your response and the link. I can’t find the leaflet you refer to specifically on Adoport. There are many pdf files though.

These researchers call both Tacrolimus and MMF immunomodulators:🙄🧐

academic.oup.com/ibdjournal...

I’m wondering whether the terms immunosuppressant and immunomodulator are used interchangeably/loosely?🧐☝️

[Spanielmadlady in reply to Suvi8901]

AI Overview

Immunomodulators and immunosuppressants are both drugs that alter the immune system's response, but they work in different ways:

Immunomodulators

These drugs can either increase or decrease the immune response. Immunostimulants increase the immune response to help fight infections and tumors. For example, immunomodulators can help the immune system destroy cancer cells.

Immunosuppressants

These drugs decrease the immune response. Immunosuppressants are used to treat autoimmune diseases, such as lupus or pemphigus, and to prevent organ rejection after a transplant.

Immunomodulators can act more selectively than immunosuppressants, targeting specific parts of the immune system. This can lower the risk of complications from immune dysfunction.

🤷‍♀️

[Suvi8901 in reply to Spanielmadlady]

Thanks.

[Spanielmadlady in reply to Suvi8901]

Terminology seems to depend on what it's being used for

[Treetop33]

I had hair loss when first diagnosed and I suppose meds will have helped. But I also made sure my iron and zinc levels were ok as well, as it can cause hair loss/thinning.

[MariaVT]

I take steroids and hydroxychloroquine and I’ve been diagnosed for two years. Ive never taken Azathioprine. I’ve just started experiencing hair loss. Rheumatologist says it’s a symptom a lupus. They are not that concerned about hair loss however.

[smeackles in reply to MariaVT]

Hi MariaVT

Yes understand it’s lupus causing the follicle damage giving the thinning and hair loss but curious if this could also being increased by the rarer side effect of azathrioprine . Seems to be n patches on back of head and around ears and now where her parting is. Getting steadily worse - was praying the meds would suppress lupus from the damage, and the steroids whilst waiting on azathrioprine to start working would help slow it down. But not the case. Rheumatology not being concerned about hair loss isn’t something good to hear. Not knowing if it will ever come back and for a 24 year old is quite awful. Obviously it’s more visual (along side the skin damage on face) than that internal damage being done but should still be taken seriously by the consultants. X

[MariaVT in reply to smeackles]

Yeah it’s an upsetting thing to experience for anyone. It’s hard to say if it’s Lupus or a side effect of the meds your daughter is taking. My Rheumatologist was a little blunt about it and said that she’s treating me to ensure that my organs function and therefore hair loss is not an important concern.

[smeackles in reply to MariaVT]

I truly appreciate that fact - and of course organ damage is vital to slow and stop over all other symptoms. It’s the worst case scenario for us all. However the long term permanent damage that affects your coping, mental health, self-worth and confidence to step outside (along with contributing to anxiety and stress) also needs treating and managing in the whole picture. Don’t think I’d cope as well as yourself with a blunt consultant, regardless of not disagreeing with their view point. X

[MariaVT in reply to smeackles]

I’m with you, I understand what you’re saying.

[Hoofprints in reply to MariaVT]

How insensitive was that consultant to say that hair loss is not a concern?!

True that it is important to treat so as to protect the organs from damage, which could ultimately lead to death.

Yet nobody regards the hair loss that cancer patients potentially face during chemo as an insignificant side effect. They are offered cold caps to wear so as to fend off the psychologically damaging side effect of chemo . And their treatment is also given in an attempt to save organs/tissues and ultimately life!!

[Dogsaremybestfriend in reply to smeackles]

I understand your concern and the unwelcome bodily image changes that can happen with Lupus. These symptoms of hair loss as you stated are from the disease and the azathrioprine that your daughter is taking will help alleviate these symptoms. The disease can and possibly is affecting the internal organs as well. Be mindful and respectful of the rheumatologist's recommendations and mostly be patient. As you know, the medication takes time to work, but rest assured, you will see benefits as time goes on. I'm sorry to hear of your daughter's struggles, but now is not the time to question your doctor. All my best and I wish you both peace and good health!

[Yellow92]

I've experienced hair loss when lupus flared and I became unwell. I was put on medication and the thinning continued for a while until I recovered from the flare. This took a while and I ended up cutting my hair short. Eventually, my hair did start to grow back and be thicker again. It's best to contact rheumatology to raise concerns especially if you think the medication is not helping.

Good luck and fingers crossed you will find something that works well for your daughter.

[Elle-26]

I've had Chronic Alopecia for over 10 years sadly. Lost my hair, grew back repeatedly. Now I've lost my hair this time and it grew back pure white, fluffy, thin and stayed short, with no hair growth for a few years. Alopecia was one of my first symptoms with burning inflammatory scalp. Saying this, many of us are different. I was prescribed methotrexate ( not just for hair loss) which helped but I couldn't stay on it long term.. The last time I was prescribed the injections, it caused me to feel ill. I now use steroid scalp liquid. I use this sparingly, and it's to treat the inflammation. I can't take steroids orally, as it caused me problems.

I'm now wearing wigs, and for years I didn't realise you can get some that are amazingly realistic. I watched youtube with some fantastic women who have lost their hair and their advice on which wig etc.

Hope my comment helps xx

[Olive12345]

I was going to ask if her ferritin levels have been checked. According to the nhs below 15mg is low, according to NICE guidelines its under 30. Mine is showing as low at 28 on the nhs app though. Apparently 100 is optimum for preventing hair loss and other symptoms according to a low ferritin group (I haven't looked into it properly yet so I'm not sure how credible that number is but I'm definitely symptomatic at 28). Might be worth looking into because its easily fixed but not something Drs consider.

[smeackles in reply to Olive12345]

Oh ok - is that checked through blood tests?

[Olive12345 in reply to smeackles]

It is but usually they just check haemoglobin and not ferritin so you might have to ask.

[smeackles in reply to Olive12345]

Thank you - will do that for sure. X

[FredaN in reply to Olive12345]

I had a look at my NHS app and it says normal is 13-150 😮 I've noticed a lot of things like that over the years and the use of the word "borderline" if it's a couple below the lowest number.

Smeackles - she could ask her GP to run some regular blood tests to check if anything else could be causing the hair loss, like ferritin, vitamin levels, things rheumatology might not be testing for. Maybe look up about causes of hair loss and jot down which tests to ask for specifically (I usually say I want to check to see if there's anything I can change to help myself, so I don't come across as too demanding!)

My hair loss comes and goes to an extent, but is generally a lot more than it used to be at the best of times. I had extremely thick hair and a lot of it, so I think that manages to disguise it a bit. I do sometimes have to get a lot cut off because it all seems to different lengths (this is happening now). I've only been on Hydroxychloroquine for almost a year though, not that it's done much good. It must be hard for her, being so young and having to deal with this (not easy for any of us really). I hope the meds settle down soon and/or you manage to find something else that helps 🩷

[smeackles in reply to FredaN]

Great advice thank you - yes she’s grown up with long thick curly hair all her life, so now to be thin, with bald patches is very clear to see the difference from a year ago. Heartbreaking to watch - wishing I could take it from her at my age. No age at all is better to get a life long diagnosis of a disease but mid twenties feels quite cruel. Cruel for everyone struggling and juggling it.

Very grateful of everyone here sharing their experiences and suggestions. Don’t know what I’d do without it.

Thank you x

[Jerg]

I had the hair loss issue, the sores on my face and back of my neck, purple and swollen face and eyes, however after 6-8 weeks I saw improvement with everything. With hydrox ychloroquine, a steroid Cream and steroid injections .

Only when I have flare up these symptoms comes up also when I am stressed, hopefully your daughter starts feeling better soon

[smeackles in reply to Jerg]

Steroid injections? They haven’t mentioned that. Shes suffered the skin problem since pre diagnosis in March. The hair issue since September but continuing to get worse. Stress was the trigger that kicked lupus into action earlier this year and we are still waiting to get this first hit under control. Just wishing something could help slow symptoms whilst waiting for axathrioprine to maybe help.

I’m so pleased you started to see improvements 6-8 weeks in. That’s all you want to hear that some people having positive successful result. Thank you for sharing x

[Golden87]

hi

I would advise she also goes to see a trichologist. I recently started to lose my hair and it has caused me so much heartache and anxiety which prolongs rheumatic flairs. I spoke to the doctors and they said my bloods were fine but when I went to see a trichologist she said my iron and b12 levels were really low. She prescribed me additional supplements and I start treatment with minoxidil soon. I paid privately as the nhs waiting list is over 12 months here and while I’m upset about my hair loss atleast I feel like I have some solutions. I’m fairly young at 37 and didn’t want it to progress further.

[Tiggywoos]

hi smeackles

I apologise if I’ve told you this before but I lost so much hair at one point I got so anxious I didn’t want to wash it . Hydroxy slowed the hair loss down in 6 months but I also took nourkin hair loss for women .

Personally I would see a dermatologist privately as they can determine between general hair loss or a form of allopecia. Check they deal with hair loss as some I’m afraid aren’t the best 🤦‍♀️.

Totally agree with what others have said about ferritin .. really needs to be around 100 but drs not interested unless under 15 .

Trouble is stress could be playing a big part in this too but I would try and find dermatologist who deals in hair loss as this wouldn’t necessarily be rheumatology issue

I’m so sorry your daughter is going through this. Sending much love xx

[Tiggywoos]

forgot to say vitamin D3 essential too x

[Vixen2]

Hey. I was diagnosed when i was 21. (53 now). Was on very ‘heavy’ meds. No hair loss. But when i started Infliximab infusions about 20 yrs ago. They added steroids to my infusion. I’ve been on them on & off for yrs. But when they added them to my infusion. I started losing hair on my crown. Call me vain. I asked them to stop the steroids. So they did. Hair grew back! But of course, it depends how bad your daughter is! Good luck. X

[smeackles in reply to Vixen2]

Interesting to hear - so the steroids in your case were potentially the cause of loss? Its a minefield isn’t it….everyone is different, lupus hits differently, everyone’s body reacts differently to meds. Oh for a textbook answer for all of us. Thank you xx

[Vixen2]

I know. As i always say. Pain is a pain! So frustrating. It’s the fatigue that comes with it too! You get tired so easily. My partner banged his toe the other day. Now it’s very swollen & bright red. That’s how mine started… I’m being his ‘nurse’ at the mo. But it’s bringing back memories! Your daughter’s lucky. You sound like a lovely mum. Mine was too. She was a very hard working nurse. Then came home & nursed me. I don’t know what i would have done without her. Patience & kindness mean everything when you have a chronic condition! X

[smeackles in reply to Vixen2]

And I believe the love, understand and support of those around you get you through every hard day and hopefully some good ones too. Information & comprehending such a vastly complex disease can only but help - why I’m here to try and gain as much knowledge as I can to help her. Your mum sounds like a true angel XX

[Tiggywoos in reply to Vixen2]

That’s such a lovely message 😘xx

[Vixen2]

Thanks Tiggy. We all need a bit of kindness! Have a ‘painfree’ night. (A couple of glasses of vino can help with pain!!! X

[IMWilson]

I had hair loss when I was about 22. I was in a flare up at the time but I was prescribed a lotion for the scalp which didn't do any good. it took about 2 years but it stopped coming out and I have nice thick shoulder length hair now. On various meds including Tacrolimus, Mycophenolate, 5mg Prednisolone and it hasn't happened again. Good luck.

[smeackles in reply to IMWilson]

That’s really nice to hear that for some people it can grow back - thank you for giving a bit of hope in this.

So pleased for you. X