Hydroxy or lupus

[CarolMcl]

I'm really starting to lose more hair,more evident after each shower. I also need to make sure it's covered if I'm cooking, it's certainly no Angel hair pasta 😊.

Anyway, is this from the medication or the lupus?

Thanks

[nanleighh]

Hi Carolmcl, From the research that I’ve done it is extremely rare for Hydroxychloroquine to cause hair loss. In most cases as in mine, my hair got thicker and healthier after being on it for a while. Not to say that it can’t happen, but according to the research it is extremely rare. Other chemotherapy drugs can and do cause hair loss quite frequently. As you know one of the symptoms of lupus is hair thinning or hair loss. Sometimes it’s really hard for us to pinpoint what symptoms are caused by what! This is probably not very helpful to you, but I wish you the very best in 2018. With warmest regards, Nan

[CarolMcl in reply to nanleighh]

Thanks very much nanleighh, it is very helpful. As you say it's difficult to know what exactly is causing what. I'm recently diagnosed so still trying to get to grips myself. Have a very happy New year x

[misty14]

Hi carol nd

It's distressing losing so much hair like you are!. It can be due to the illness flaring or some drugs as nankeigh rightly says it's hard to know which!. Are you getting other flare symptoms like joint pain or mouth ulcers?.

Are you due a review from your Rheumy soon?. If so you might like to take your hair pieces with you to show him. If it's not soon you might like to ring the clinic to ask for a cancellation to bring your appointment forward!. I've done this and it's worked for me!. Hope you get better treatment soon. Can your GP prescribe a short course of steroids to bring things under better control?. X

[CarolMcl in reply to misty14]

Hi Misty14. Yes it is very distressing and as i said, even more so after showering. Presently my hand, knee and hip joints are painful (all right sided??) as well as having three small mouth ulcers so it could be a flare.

I've got an appointment on Friday at the rhumatology nurses clinic, the next with the consultant isn't until May. Thanks for your advise, have a very happy New year x

[misty14 in reply to CarolMcl]

Hi Carol

Glad you've got a nurses appt on Friday. Let us know how you get on. She can always ask the Consuktant for advice about your treatment. Funnily enough on forum a few months ago there was a lot of us saying we get pain on one side of body . Seems strange but could be a lupus feature!. Best of luck. X

[CarolMcl in reply to misty14]

Hi Misty

Really?? That's weird, thought it was just me. I will do, thanks again x

[misty14 in reply to CarolMcl]

Hi Carol

Try a search of posts on here under joint pain and you might find it. It was an interesting discussion. X

[CarolMcl in reply to misty14]

I certainly will, thanks. Oh, how do you find previous posts? X

[misty14 in reply to CarolMcl]

Click on search or it might be posts. X

[CarolMcl in reply to misty14]

Thanks x

[Bakbre]

Unfortunately I cannot agree with nanleighh as Hydroxychloroquine caused my hair to fall out. I started taking it 15 years ago when I was first diagnosed with UCTD and was put on 4 tablets a day and then it was reduced to 2 and the hair loss slowed down. I have now also been diagnosed with RA and put on Rituximab infusions and the Hydroxy was reduced again to just 1 tablet and my hair loss has more or less stopped. My consultant wants me to come off it altogether because of the side effects. In the actual leaflet it states it can cause hair loss as one of the possible side effects. Everyone is different but that is my experience for what it is worth.

I hope this helps and may I wish you a happy & healthy New Year.

[CarolMcl in reply to Bakbre]

Thanks Bakbre. I've been taking 2 tablets daily for the previous 10 months, rheumatologist now suggesting I start a new course of treatment, just awaiting blood results. Maybe them I'll find out the cause. Thank you so much for your help, have a very happy New year x

[Hidden]

My hair stopped falling out after I started the hydroxy chloroquine, it was so thin before but looks much better now I've been on this medication some years. As you say it's difficult to know if it's the condition or the medication that causes the hair to thin. I took multivitamin to try to help too. And use sulphite free shampoo and conditioner. X

[CarolMcl in reply to Hidden]

Thanks Ericam, will give that a try. Happy New year x

[maalidog]

I have lost about 75% of my hair to Lupus.

[CarolMcl in reply to maalidog]

Sorry to hear that Maalidog, hopefully I will find out one way or another soon. Happy New year x

[LauraMk30 in reply to CarolMcl]

Hey CarolMcl,

I can relate to the hair loss. I haven’t had a definite diagnosis of SLE, I did have but now they are saying it’s something else, But my hair loss is significant like yours showering is a nightmare & I too struggle with excessive loss. I do cry, & panic when it’s all wrapped around my fingers. I’ve collected every strand, sounds obsessive but it’s evidence.

I have a weeks worth of hair in a bag that I’ve kept to show my doctor. Mine falls out everywhere, from waking up in the morning to it on my pillow, to finding it in my food, (angel pasta) it’s so distressing I hate it. I have bold patches on the side of my scalp that is hard to conceal. Cannot use hair dryers or straighteners any more. The luxury of having my hair highlighted has gone out the window as well.

I have had many positive blood results that indicate lupus, maybe it’s malnutrition anaemia & GI for me too.

But I’m just messaging you to say I understand what it feels like & the same amount you posted is what I deal with everyday 😭 I wish I knew what was making my hair fall out, if it was medication I’d be able to except it & hope it would grow back once better But I’m not taking any & I woke up one day and never got better.

I hope you find the answers Hun, & please let me know what happens. I’m sorry if I’ve jumped into this post as a (maybe) lupus sufferer & as I’m not on meds i don’t think I clarify to be commenting, but I sincerely & genuinely understand About the hair loss part.

X

[CarolMcl in reply to LauraMk30]

Hi LauraMk30

Please don't every feel that you don't clarify to answer any posts on this forum. By the sounds of it you are also suffering significantly, maybe even more so due to your lack of definitive diagnosis. I didn't think of keeping the hair, was so upset that I just flushed it away. Maybe I should have done so like you, hopefully the picture will be enough indication of what is happening. I really do hope that you get some answers soon. Thanks very much again and a happy New year xx

[LauraMk30 in reply to CarolMcl]

Thanks for your kindness. I do worry sometimes about commenting, but I won’t from now on. Yes your right I am 💔. Everything in my body has been torn apart, but my hair was left untouched which for me was a HUGE relief. But for whatever reason To see it fall out now in clumps & washing away down the plug hole terrifies & upset me beyond belief! I bet it was really upsetting for you to of flushed it away.

I’m glad you took a picture, & keep a picture log or god forbid if any more does fall out just place it in a freezer bag to keep it safe. I collected mine daily, and did a bag each day. It became so unbearable too look at, I just piled the entire weeks worth into a see through bag & hid it away..

I went to see my doctor, who as we all know is a 🤬

I expressed my new but significant issues with my hair to be told not too worry. I brought out the bag full of hair & my doctor was shocked. I said this is something to worry about. You do not understand the extent of worry this is causing me. I am going bold! I’m 31 years old, severely sick, to know my hair is being affected & I don’t know why or how to fix it is considerably devastating for me. I need to be referred to someone who can help me.. thankfully my doctor didn’t give me the silent treatment & mentioned🗣 Chronic telogen effluvium Alopecia.

But recently I have been back to see him & he’s now going to refer me to a trichologist on the NHS. He’s made me aware it could of evolved into Alopecia Areata.

Do you have the tiny white bulbs still attached to hair ?

If so please mention it too your GP.

Each strand that falls from my head has, & that’s what made my doctor think twice about letting it slide.

Thank you very much Hun, I’ll be thinking & praying you get some answers to xx

[CarolMcl in reply to LauraMk30]

Thanks Laura, no don't have white bulbs. Hope you get some answers soon too xx

[quirkytizzy in reply to LauraMk30]

That's brilliant that you brought the bag of hair with you to the doctors - and shameful that the doctor was willing to fob off the severity until you showed him/her the bag of hair.

Significant hair loss was a huge part of my initial Lupus symptoms. I lost over 50% of my hair, was quite literally half-bald, and while it's grown mostly back over a year, it's still far thinner than it used to be.

I don't have any advice, but much love and support. Losing our hair can be an especially cruel part of Lupus. *HUGS*

[Hidden]

Hi carolmcl

I've experienced hair loss definitely when flaring up hair everywhere in food all round house etc. I'm also on hydroxy have been for over 3 yrs now. Noticed since I've been put on regular vitamin d the hair loss is a lot less vitamin d plays a big part in this condition so might be worth asking your gp for blood test. My family are always telling me how fine my hair looks which doesn't help with self esteem I turn it into positive by saying it won't be long until I have to invest in a wig then 😂. Worrying about it isn't going to do any favours it's a life card we have been dealt we need to live with it the best we can always look on the positive side. Hope it helps take care x

[CarolMcl in reply to Hidden]

Hi 12derby.

As you say, everything can have an upside, save a fortune on hairdressing appointments 😁. Saying that, would like to enjoy that luxury for a while to come. As I've previously said, I've got an appointment with the rhumatology nurses clinic this week and an appointment with my GP the following day, will say about the vitamin D. Thanks, have a happy New year x

[JazPont]

My aunty has rheumatoid arthritis and is on hydroxy and has a lot of hair loss. My rheumy also asvised it can cause hair loss but I lost all of my hair a couple of months ago so wouldn’t effect me anyway ha xxx

[CarolMcl in reply to JazPont]

Hi JazPont.

Pity we don't get the opposite effect of luxurious thick hair lol. Happy New year xx

[JazPont in reply to CarolMcl]

Haha yep! I’m wearing a wig now though as I’m completely bald 🙈 so I’ve got the thickness - Infact, it’s thicker than my real hair was haha xxx

[Margas]

Derby12 is right. My hair is much better since I take supplements after blood tests showing deficiencies. I began taking vit d3+ K2, vit B12, silic acid and in just 3 weeks my nails and air are much stronger. This together with a diet free from sugar, cow protein, gluten and yeast. If you fight what is causing your inflammation and your immune system to be hyperactive, slowly will get some improvement in your lupus too. X

[Chin-up]

Hi CarolMcl, my hair has been falling out a lot for the last 9 months so I know how upsetting it is, I’ve been feeling the same and also wondering if it’s meds or purely the lupus which is in a flare right now. One thing I can say is I’ve only been taking hydroxy for about a month so I know this isn’t the cause of my hair loss. I know everyone is different so can’t say this isn’t the cause of yours but sometimes good to hear about other people’s experiences.

I think the thinning has reduced over the last few weeks, could be a new hair loss shampoo I’ve been trying or just the fact that I have less to lose now! I’m getting a lot of it cut off on Friday, fingers crossed it looks a bit thicker with a short bob!

Fingers crossed things start to improve for you 😀

[CarolMcl in reply to Chin-up]

Thanks very much for that Chin-up. Happy new hair do 😁

[LauraMk30]

Aww hey quirkytizzy,

First of all thank you for writing back 💛 & Thank you so much for agreeing 💜 I’m actually really happy that you thought it was brilliant idea . This Gp is like the rest I have seen at my surgery, (patronising)

It’s such a touchy subject for me, & upsets me greatly but to talk to people who have or who are going through hair loss means a lot to me, there is no one I know who’s ever lost or loosing there hair at my age of 31 , so not a soul in sight to talk to... but I’m very grateful to talk to you & others. It’s a little light in the dark.

The one person I know who is suffering is my closest Aunty my mother’s sister & she’s 65 & she’s been loosing her hair significantly too, she’s had to have her cut very short to disguise the loss. & recommended I do the same... (I just can’t 😭) she can’t talk about it to me & neither can I.

With everything that is going on I feel older than my years. My doctors are very careless & assume I’m being dramatic. I decided to back up my story with pictures, and hard evidence like the bag of hair.

Too prove I’m actually loosing it. It’s very distressing to have to do this just to make someone listen but I guess I have to do what I have to do to be taken seriously.

I’m really sorry you went through this, to loose 50% has gotta to of had a huge impact !! I’m on my way to that mark & it’s beyond upsetting, My hair is thin, light weighted like a feather & there’s literally nothing to it. It’s Lifeless. I used to love running my fingers through my hair but if I do now I’ll have a hand full of hair.

I was told at first no more would fall, until one day I woke up to find hair on my pillow got up in shock to find as I stood up, massive amounts were all over my pj top and falling on the floor. I was literally sick. What I was told was completely wrong, and I wondered what they would do or say If it was there daughter or relative. Surely they would have some care but for me nada.

It’s impacted me severely regarding mental health. I’m emotionally exhausted.

Prior to Christmas I was having a moment at home, collecting hair, looking at myself, uncontrollably crying, & it came to me... my Gps haven’t made an effort to diagnose me, they’ve fobbed me off with all kind of things, I’ve been tirelessly trying to show them how ill I am and they tried to convince me that I am not, the only thing they have handed out is umpteen amounts of antibiotics!!

obviously what I have antibiotics will not cure I’ve experienced years of neglect & suffered some terrible consequences for there careless actions, I’ve spent endless hours researching a possible cause of my health problems & my hair loss, I was doing my best to help save myself from anymore unnecessary torture & I tried to help them see what it’s really like for me, but... on there behalf they’ve wasted precious time & my hair loss is an act of there negligence. Yes I’m blaming my Gp, but it’s been a very painful long waiting game & thanks to them I’m back to the drawing board. I know they don’t care as you can see from the endless posts on my profile but it would be nice one day to receive the decency that my friends & family get when they go for help. They try to get rid of me like I’m a bad rash, but I guess I’ll have to keep coming/going back till I get some answers.

Sorry I’m rambling... (isolation)

I’m soooooooo relieved to hear your hair did grow back ❤️💜💛🧡💚💙 there is hope.... thank you for listening & replying it’s most appreciated & I’m very grateful to you x

[Paul_Howard Partner LUPUS UK]

Hi CarolMcl ,

I'm sorry to hear that you are experiencing so much hair loss at the moment. Have you discussed this with your doctor? Are they considering any changes to your treatment to see whether it could help alleviate this?

We have a blog article about hair loss which may be of interest to you. You can read it at lupusuk.org.uk/coping-with-...

[CarolMcl in reply to Paul_Howard]

Thanks Paul, will have a read. My GP has arranged to take a selection of bloods as not willing to say it's just side effects from the medication. I've to continue with the hydroxy and commence Azathioprine once I'm over my cold like symptoms.