I've searched through all of the topics here, but I don't see a general discussion regarding hair loss with PsA. All of the topics seem to be associated with specific meds which are being taken.
I am new to this site and have just been diagnosed with PsA. I am not on any meds yet. My symptoms started to develop about 3 years ago and have progressed very rapidly.
One thing I have noticed is very significant dramatic hair loss in the crown and front part of my hair, to the point where I'm soon going to need a hairpiece. I also have noticed an extreme change in the texture of what hair I have left.My hair went from being very thick and coarse to being very thin and fine and has turned significantly white. Also, my eyelashes have become fine and have thinned out significantly.
I have been tested for Thyroid and that is not the cause.
I am wondering is this might be caused by the Psoriasis and PsA. Has anyone else had this problem? If so, is there anything which can be done about it?
I definitely am not a medical expert and I don't know the relation of hair loss and PsA, but I did my fair share of research while I was trying to figure out what was wrong with me and I know that hair loss is a big symptom of Lupus. I also know that when you have one autoimmune disease, you are more likely to develop another. So have you been tested for Lupus? And what does your rheumy say about it? Because I don't think hair loss is a symptom that can be disregarded...
Hi Shandy, I don't have any definitive answers either except to say, yes, I've got hair loss too and mine started many, many years (maybe 18/19 years ago now) before either my psoriasis or psoriatic arthritis. Way back at the beginning I saw all sorts of people - pcps, endocrinologist, dermatologist and trichologist and had all sorts of tests but none of them could offer any explanation. As the years have passed what was distinct thinning on the top/crown has become diffuse all over and, oddly, worries me less even though under bright lights or with the sun on my head I look as if I have a halo of hair over a shiny scalp.
Can't remember how old you are but when you next get your bloods done get them to check your ferritin levels (iron store) 'cos in pre-menopausal women this is notoriously low even if your overall iron and red blood count are good. It could be a factor and easily remedied. My has only reached a healthy level now I'm through the menopause. And that hormonal change in itself can impact your hair growth significantly.
My texture changed as well and that thinning of the hair shafts can be symptomatic of androgenetic hair loss ... same cause as male pattern baldness. It can be hereditary so have a look at your older female family members.
I've tried all kinds of things (happy to discuss in more detail if you want) and have a couple of hairpieces too but ultimately a short, choppy cut, a few mixed high/low-lights and thickening styling products have given me the best, sustainable results.
On my very first ever rheumy appointment he commented/asked about it and mentioned an auto-immune connection. Vitamin D insufficiency can also be involved as it is with so many auto-immune issues. Some of the arthritis med we take can also affect our hair/cause thinning but for me, I can't say this has had any impact.
More than happy to tell you about some of the things I've tried/resources and sources of information I've found over the years ... as well as the things which really are a waste of large amounts of money ... I'm happy to private message you on it.
It's such a hard issue for ladies, our crowning glories are very much tied up with our self-esteem and that makes it such a tough issue to come to terms with.
Thank you ladies for the replies! Greatly appreciated, and a lot of very good information here.
When being diagnosed I had a lot of blood work and x-rays done and the Rheumatologist asked me if there was any Lupus in my family, which there isn't. When I went back for my follow-up none of the test results were discussed with me, and I wasn't given any chance to ask questions. So, I really don't know if she tested me for Lupus or not. I'm calling the clinic to request a copy of those tests and results. I was treated very poorly, and so I'm in the process of setting up an appointment for a consultation and 2nd. opinion with different Rheumatologist. Hopefully, he will be a good Dr. and I can just switch over to him.
You have given me much information and several good questions to ask the new Dr., so I'm making a list to take with me for the consultation. I do know that I don't have a vitamin D deficiency. I have been tested for that, as well along with some other possible vitamin deficiencies... Also, I am not on any Arthritis Meds yet, so that is not a possible cause
My concern here is to focus on the "possible cause" of this dramatic change in my hair and the hair loss, and not so much how to cosmetically deal with it and camouflage it. It really concerns me as it is such a drastic change.... Something has to be going on with my body and I feel this is more than just hormonal changes. Like you, I have asked this question to several other different types of specialists, and none of them can offer any explanation for the hair loss.
I can't help but feel this is in some way connected with the PsA (or some other associated autoimmune disorder), as it started to happen at the very same time I developed Psoriasis a few years ago.. Maybe I'm wrong, but hopefully my new Rheumatologist will be able to shed some light on this and I can get some answers.
I agree, my own gut feeling is that my hair loss is somehow connected or was the first sign of the onset of my auto-immune issues that have developed. But it's gone on so long, has had no definitive explanation/reason and none of the numerous 'treatments' have returned my once beautiful head of hair. I have been to the bottom of the pit of despair over it but once you hit rock bottom the only place left to go is back up!
The only limitation the state of my hair can place on me is any that I allow (and there are good camouflage options) whereas my PsA is something I have a lot less control over and is an opponent that I need to fight with every weapon in my armoury .... because it really IS the thief that is stealing my life. So I guess I'm saying with bigger battles to fight I've reached a place of acceptance with my hair.
It would be great for all of us, Shandy211, if you have a doc that can offer an insight. Keep us posted with how you get on.
With a health issue as serious as PsA I am going to make sure I have a good Dr. who will be thorough, communicate well and explain. The first Dr.,while she was brilliant and well educated, did not communicate well at all and had a horrible "bedside manner. I most likely will not be going back to her.
I have specifically requested a consultation with the new Dr. to discuss everything. I'm compiling a list of questions and have had all of my records sent over to his office.
Jules, I certainly will post back here with my results of the consultation and visit with the new Dr. and if he can shed some light on hair change and loss! The first Dr. wanted to put me on Methotrexate, which I see causes even more, if not complete, hair loss. After reading the comments here I am now wondering whether I have been tested for Lupus as well.
Like you, I doubt that I will ever get my once thick and luxurious hair back again. It's sad, but I can deal with it also. My concern is the root cause and what's going on with my body. I want to make sure something hasn't been missed and overlooked. I completely agree that the focus and priority needs to be on the PsA, and whatever else might be going on, and the treatment.
Thank you so much for your comments. This is a wonderful site. Since I was just recently diagnosed I am still learning about what PsA really is. There is lots of good information here which I've been reading as time permits..
I’ve lost hair on my scalp and facial hair, lost most of my teeth, my toe and fingernails are pitted and brittle, and the bottom of my feet is flaky thick skinned. I’ve been on MTX for four years along with Flowmax, and Tramadol. Now I’m being tested for bladder cancer! Just go with the flow and remember to watch some form of comedy everyday! Just laugh the pain away.
I would also welcome answers on the hair loss issue. Although there is a genetic link for me to female pattern baldness, none of my immediate family members have hair loss. I can say for sure that once I began the full regimen of treatment for my PsA, my hair loss was system-wide and not just on my head. As soon as Mtx was added to my treatment regimen, the hair loss began. I can’t say for sure how much Enbrel, my first biologic, contributed to the problem but the hair loss continued. Enbrel was ineffective for my PsA, so now I’m on Mtx and Humira. Not only have I had diffuse hair loss all over my head (not just the crown, which is the worst area), but also my eyebrows have almost disappeared and my lashes are definitely thinner. The bonus to all of this (and we do have to look at the bright side, don’t we?)is that I almost never have to shave under my arms or on my legs. I was formerly an every day “leg shaver” because I can’t abide the feeling of stubble on them, but now they stay smooth like a baby’s for a couple of weeks at a time. When I
mentioned this to my doctor early on in my treatment, he took me off the folic acid and replaced it with Leucovorin.
I am tempted to discontinue the Mtx entirely and see how the Humira works alone, but so far I’m loathe to do that because of the fear that the joint pain will return with a vengeance. So, like those of you who have replied to this discussion, I continue to keep my hair short and have found that Derm Match is a passable product to help hide the shiny scalp. I have dark blonde hair naturally, so the light brown color works best for me. This next suggestion would have non-hair-loss-people rolling on the floor laughing, but I sometimes switch off the Derm Match with patting brown eyeshadow, blended with a touch of face powder to make it the right color, directly on my scalp. I have it down to a pretty good science right now. I do plan to ask the PA at my rheumatology office about this issue once again, and since the PA is a woman, I hope she will at least commiserate with me even if she has no answers to give!
You may find that just cutting down the dose of Mtx may help with the hair loss. It did for me. At 15/20mg I had hair loss, but cutting back to 10mg seems to have stopped it. I also take it wth Humira. Mtx on its own never seemed to help me anyway, so cutting back to 10mg has not made a noticeable difference. I continue to take it in the hope that it is boosting the Humira and 10mg seems, from research to be the cut off dose to do this. It's probably worth discussing with your rheumatologist to see if this is worth a try.
I have no genetic (at least female!) hair loss in my family. I had odd breakage and loss and luxurious growth in strange patterns throughout pregnancy and postpartum.
Then, a year or so later, when PsA suddenly arrived, I lost huge amounts of hair, and the remaining texture change enormously. Like the OP, I hadn’t taken any medication when these changes happened, so I chalk it up to the PsA itself.
It has never quite reversed, as such, but I can report that with good control of the PsA, my hair looks a lot healthier and a lot more like it did before for me that was Enbrel then humira (sadly for me not much effect with the conventionals).
You may find that just cutting down the dose of Mtx may help with the hair loss. It did for me. At 15/20mg I had hair loss, but cutting back to 10mg seems to have stopped it. I also take it wth Humira. Mtx on its own never seemed to help me anyway, so cutting back to 10mg has not made a noticeable difference. I continue to take it in the hope that it is boosting the Humira and 10mg seems, from research to be the cut off dose to do this. It's probably worth discussing with your rheumatologist to see if this is worth a try.
Thanks, Jen. I have reduced the Mtx, with my rheumatologist’s permission, from .06 mg (equivalent to 15 mg. orally) to .04 mg. I cant tell much of a difference, except that maybe the hair loss has stabilized and I don’t seem to be losing as much now.
I'm unclear why the doc discontinued the folic acid....was is not helping? It usually works wonders with MTX side effects, including hair loss.
Swede54 said:
I would also welcome answers on the hair loss issue. Although there is a genetic link for me to female pattern baldness, none of my immediate family members have hair loss. I can say for sure that once I began the full regimen of treatment for my PsA, my hair loss was system-wide and not just on my head. As soon as Mtx was added to my treatment regimen, the hair loss began. I can't say for sure how much Enbrel, my first biologic, contributed to the problem but the hair loss continued. Enbrel was ineffective for my PsA, so now I'm on Mtx and Humira. Not only have I had diffuse hair loss all over my head (not just the crown, which is the worst area), but also my eyebrows have almost disappeared and my lashes are definitely thinner. The bonus to all of this (and we do have to look at the bright side, don't we?)is that I almost never have to shave under my arms or on my legs. I was formerly an every day "leg shaver" because I can't abide the feeling of stubble on them, but now they stay smooth like a baby's for a couple of weeks at a time. When I mentioned this to my doctor early on in my treatment, he took me off the folic acid and replaced it with Leucovorin.
I am tempted to discontinue the Mtx entirely and see how the Humira works alone, but so far I'm loathe to do that because of the fear that the joint pain will return with a vengeance. So, like those of you who have replied to this discussion, I continue to keep my hair short and have found that Derm Match is a passable product to help hide the shiny scalp. I have dark blonde hair naturally, so the light brown color works best for me. This next suggestion would have non-hair-loss-people rolling on the floor laughing, but I sometimes switch off the Derm Match with patting brown eyeshadow, blended with a touch of face powder to make it the right color, directly on my scalp. I have it down to a pretty good science right now. I do plan to ask the PA at my rheumatology office about this issue once again, and since the PA is a woman, I hope she will at least commiserate with me even if she has no answers to give!
I'm sorry ladies, but F.Y.I. the topic of this discussion is " Hair Loss in General with PsA -- Not Associated With any Meds" There are many other discussions here about hair loss associated with various meds people are taking... Just search and you will find them... This topic was started for people with PsA who are NOT on any meds yet....
I am not currently and have never been on meds for PsA and I have been losing my hair for about as long as I can remember the pain starting (about 8 years ago). I have had lots of blood work and it is not caused by anything abnormal. I never thought about a connection to PsA. I have been in a flare for about a month and my hair loss has exacerbated during this time, but I didn't put it together until I read your post. I will ask my rheumatologist about it the next time I see her.
Thank you for your comment Miz Que -- I also have an appointment with a Rheumatologist on May 26th. for a 2nd. opinion. One of the questions I plan to ask him is if hair loss is connected to PsA. I will definitely post back here with what he has to say....
Thank you for your comments Jen! Good information... :)
Jen said:
I have no genetic (at least female!) hair loss in my family. I had odd breakage and loss and luxurious growth in strange patterns throughout pregnancy and postpartum.
Then, a year or so later, when PsA suddenly arrived, I lost huge amounts of hair, and the remaining texture change enormously. Like the OP, I hadn't taken any medication when these changes happened, so I chalk it up to the PsA itself.
It has never quite reversed, as such, but I can report that with good control of the PsA, my hair looks a lot healthier and a lot more like it did before :) for me that was Enbrel then humira (sadly for me not much effect with the conventionals).
Shandy, sorry that this discussion didn’t yield quite the results that you were hoping for. The people who responded were being as helpful as they could be. The truth is that by far the largest proportion of our active members are on some type of medication for their PsA, so input on your very specific question is going to be a bit scarce.
Two suggestions: explore the connection between hair loss and psoriasis, and consult with a dermatologist as well as a rheumatologist. They are the specialists in skin and hair.
Sorry, Shandy, I was responding to this. My mistake.
Shandy211 said:
I'm sorry ladies, but F.Y.I. the topic of this discussion is " Hair Loss in General with PsA -- Not Associated With any Meds" There are many other discussions here about hair loss associated with various meds people are taking... Just search and you will find them... This topic was started for people with PsA who are NOT on any meds yet....
for me that was Enbrel then humira (sadly for me not much effect with the conventionals).