I've had this skin flare up that has got worse since March. Dermatology are on the case but not quite there yet.
My rheumy is aware that it is at least partly fungal but thinks it's predominantly psoriasis or possibly discoid lupus. His take is that psoriasis might be due to stopping Mtx back in January or a side effect of Humira. Nobody seems to think that I've just broken out in psoriasis like people with PsA do ... I guess that's because there's a lot of it, it is sudden and unusual for me.
The discoid lupus possibility really hacks me off. I've got a bald patch on my head like a flipping tonsure, though smaller than Friar Tuck's admittedly. And discoid lupus can cause permanent hair loss. Also, if that's what it is I'd have to stop Humira as again the likely cause would be the drug. To anyone who is on Humira and getting the heebie-jeebies reading this: apparently this would be a rare thing to happen, not your run of the mill side effect at all.
If anyone has any bright ideas about how you slather strong steroid cream on a scalp that is covered by (mainly) thick hair, I'd be very grateful as apparently that is very important.
I've had a blood test for ANA which would indicate D L & I'll need a skin biopsy. Rheumy made all the right noises about 'trying other things' if Humira goes out the window.
Apply topical to scalp: part your hair with a comb, use an orange stick (or similar) tipped with cotton wool (like a big cotton bud!), dip in a blob of steroid cream/gel and then run along line of scalp exposed by parting. Move parting and repeat until whole area to be treated is covered. Jx
That's my evenings sorted out then. Makes perfect sense though Jules, thank you! I guess it's something one gets better at with practice .....
Jules G said:
Apply topical to scalp: part your hair with a comb, use an orange stick (or similar) tipped with cotton wool (like a big cotton bud!), dip in a blob of steroid cream/gel and then run along line of scalp exposed by parting. Move parting and repeat until whole area to be treated is covered. Jx
Oh, what a puzzle, what a pain. You must be so glad that you have a great rheumatologist who you trust, and a file at an excellent dermatology clinic. Other than giving you moral support, I have no suggestions. Figuring out how to spread steroid cream on a scalp covered in long (beautiful)thick hair woul be like me (with my fine, straight thin, short hair) trying to figure out how to high jump. Or even low jump.
I hope you get the biopsy and the answer soon. As if plain PsA isn’t bad enough …
Me & my husband have just had an interesting session in the bathroom involving a stool, a comb, 2 mirrors, a torch, a tube of steroid cream and a lot of bad language. Need to get more equipment!
It is a pain & a puzzle. I want to know what it is so I can start getting to grips with it. I swear I used to be more patient than this.
Seenie said:
Oh, what a puzzle, what a pain. You must be so glad that you have a great rheumatologist who you trust, and a file at an excellent dermatology clinic. Other than giving you moral support, I have no suggestions. Figuring out how to spread steroid cream on a scalp covered in long (beautiful)thick hair woul be like me (with my fine, straight thin, short hair) trying to figure out how to high jump. Or even low jump.
I hope you get the biopsy and the answer soon. As if plain PsA isn't bad enough ...
Omg, I was like, what the hell did she do with the torch?!! Haha, thanks for the insight, Seenie! I thought you were going mad, Sybil--I mean, torches can do lots of damage where I come from! They're not to be used in the bathroom!
I'm an expert at putting the steroid cream on scalp--did it daily--every day for about 32 years until I started using MG217 shampoo. I just spread my hair apart where I was applying, but it's almost impossible to not get it on your hair, too. I would apply it at night and always wash my hair in the morning. The couple times we called the ambulance for my weird heart problems, I had so much of that cream in my hair I looked like a crazy woman with greasy hair sticking out in every direction. They probably thought I hadn't washed my hair in months!
I will be hoping that you don't have lupus or anything resembling it. Idk much about it, but that it's just another shitty autoimmune disease.You don't need that. But, so if it is, and Humira caused it, would it go away if you quit Humira? Well, lucky us--you could switch to Enbrel and I to Humira (if my stupid white cell count keeps going down).!
I'm crossing my fingers and praying your blood test comes out negative! :-)
After finding another bald patch I bit the bullet, phoned the skin clinic and admitted I was not handling losing my hair too well. They saw me the next day but the price I paid for admitting weakness was being seriously patronised by a glamorous woman doctor. When she actually examined me she let up a little and in any case she seemed to know her stuff, which is what counts.
She is sure that the baldness is caused by Alopecia Areata. It's another auto-immune disease that doesn't cause any physical problems other than baldness. The hair may well grow back, she doesn't think I have scarring. But I may also get balder or even lose all body hair which I guess is the worst case scenario. It would be quite cool to have self-depilating legs, less cool to have no eyelashes. She looked at all the other stuff and I go back in a weeks's time, so they are looking after me & I'll see another doctor next time, hopefully one who is just as good but less condescending.
As it happens I'm not worried about hairloss at all now - the misery just evaporated once I got a firm(ish) diagnosis. There's more important things in life, like being able to walk & do the stuff I love doing and need to do.
I might post at some point about co-morbidities. I didn't see the Alopecia thing coming - why would I? Wondering now what else has come out of left field for others.
I knew of Alopecia Areata because a girl my daughter knows had it in her late 20s, just a few years ago. All of her hair grew back, and I'd say fairly quickly. I did not know it was an autoimmune disease!
I guess maybe when it rains (diseases) it pours. It seems so many of us have other problems, like IBS, diabetes, Raynaud's, etc., etc., so why not add another to the fun list?
I'd be purchasing a very nice wig--I have a lumpy head! You seem so calm and accepting of this new cross you have to bear. Glad it's only temporary, and yes, hopeful your Humira is working well to hold down your aches and pains. How is your skin doing? Any improvement?
Sorry to hear you have to deal with hair loss on top of all of this. It’s brutal to accept an insecurity about something we can’t predict. I would like to point out something you and the rest of us can take from this, you didn’t just sit and fret about very long! What an example of taking the time to check with your doctor before it got any worse . maybe you can’t change the outcome but you didn’t sit and let it go without a firm reason to. We can’t always be treated or cured but its not always easy to say “hey, this really bothers me why or what can I do about it?” Really appreciate you sharing this with us and kudos for your outlook!
What an encouraging reply Rachael. Thank you so much! I so often find myself urging people to get on the case but I had to screw up my courage to do it myself. Saying "I'm not coping" is not easy, there's the concern that it might become a self-fulfilling prophecy or that doctors might think badly of us. To my mind I'm better being a willow than trying to be an oak, sometimes need to sway with the wind in order not to break.
Rachael said:
Sorry to hear you have to deal with hair loss on top of all of this. It's brutal to accept an insecurity about something we can't predict. I would like to point out something you and the rest of us can take from this, you didn't just sit and fret about very long! What an example of taking the time to check with your doctor before it got any worse . maybe you can't change the outcome but you didn't sit and let it go without a firm reason to. We can't always be treated or cured but its not always easy to say "hey, this really bothers me why or what can I do about it?" Really appreciate you sharing this with us and kudos for your outlook!
Sorry your daughter had this to deal with, but it's so great that her hair grew back, which is encouraging for me too. I've read that most people with it do not have other health issues. But that it can accompany other auto-immune conditions.
My skin's not great. Nothing seems to help & the rash is joining up. The insane itching is getting on my wick. Now I'm trying to think of a cheerful spin to put on that .... and failing! But down the line I'll either come to terms with it or get on top of it. For no particular reason I reckon that will take a month or two.
Grandma J said:
I knew of Alopecia Areata because a girl my daughter knows had it in her late 20s, just a few years ago. All of her hair grew back, and I'd say fairly quickly. I did not know it was an autoimmune disease!
I guess maybe when it rains (diseases) it pours. It seems so many of us have other problems, like IBS, diabetes, Raynaud's, etc., etc., so why not add another to the fun list?
I'd be purchasing a very nice wig--I have a lumpy head! You seem so calm and accepting of this new cross you have to bear. Glad it's only temporary, and yes, hopeful your Humira is working well to hold down your aches and pains. How is your skin doing? Any improvement?
Sorry to hear that, Sybil. Who knew? who would? I'm still recovering from an ankle broken in three places, and now have really weird numbness on my legs...both of them......I went to my rheumatologist who looked at my blood work very closely, which is ok, and now I have an appointment with a neurologist on Monday. Maybe (I hope) it is caused by stress and will go away by itself. Now I have to have a conductivity test to see about ?? I don't even want to say it. At least someone believes me and it on it.
I hope you stop losing that hair, or that you can get a nice wig. I really hope the former for you! There is always hope.
I am going to start pt for my back and am thinking about acupuncture. Can't hurt.
You've had a lot of ups & downs, isn't that so? How did you break your ankle? Of course you don't have to tell me! It's hard all this. You wait for tests, you're frightened. You give yourself a good talking to, and calm down. Then something else happens ... something that throws you, and so on and so forth. At the risk of sounding very corny and trite .... I need to find some inner peace, some equanimity. Hugs to you jennyb & thanks for your kind words. Worrying is horrible and I hope you get reassuring results.
No wig! No! I'm working up to being a brazen baldy if needs be.
jennyb said:
Sorry to hear that, Sybil. Who knew? who would? I'm still recovering from an ankle broken in three places, and now have really weird numbness on my legs...both of them......I went to my rheumatologist who looked at my blood work very closely, which is ok, and now I have an appointment with a neurologist on Monday. Maybe (I hope) it is caused by stress and will go away by itself. Now I have to have a conductivity test to see about ?? I don't even want to say it. At least someone believes me and it on it.
I hope you stop losing that hair, or that you can get a nice wig. I really hope the former for you! There is always hope.
I am going to start pt for my back and am thinking about acupuncture. Can't hurt.
You've had a lot of ups & downs, isn't that so? How did you break your ankle? Of course you don't have to tell me! It's hard all this. You wait for tests, you're frightened. You give yourself a good talking to, and calm down. Then something else happens ... something that throws you, and so on and so forth. At the risk of sounding very corny and trite .... I need to find some inner peace, some equanimity. Hugs to you jennyb & thanks for your kind words. Worrying is horrible and I hope you get reassuring results.
No wig! No! I'm working up to being a brazen baldy if needs be.
jennyb said:
Sorry to hear that, Sybil. Who knew? who would? I'm still recovering from an ankle broken in three places, and now have really weird numbness on my legs...both of them......I went to my rheumatologist who looked at my blood work very closely, which is ok, and now I have an appointment with a neurologist on Monday. Maybe (I hope) it is caused by stress and will go away by itself. Now I have to have a conductivity test to see about ?? I don't even want to say it. At least someone believes me and it on it.
I hope you stop losing that hair, or that you can get a nice wig. I really hope the former for you! There is always hope.
I am going to start pt for my back and am thinking about acupuncture. Can't hurt.
Tee hee.