Hi all. The good news - my joints have never been as good as they are now, never ever! Joint wise it's like not having PsA.
The not so good news - over the last few months I've had an outbreak of skin problems. Got fast-tracked to dermatology in case one lesion was skin cancer, but fortunately it wasn't. Fortunate too that I got sent so quickly or I'd still be waiting for help with all the other 'stuff'. I reckon I have about 35 lesions and plaques - not massive coverage but quite a lot of itchy, unsightly patches just about everywhere (and I mean everywhere!).
Scraping of my feet showed that I have a fungal infection. Other bits were thought to be psoriasis but the jury's out now, they could all be fungal. The other night my husband suddenly noticed a completely bald patch on the top of my head, rather bigger than a 50 pence bit I suppose. My hair's quite thick so it's just down to the rash.
Strange .... after years of coping okay with joints, fatigue, etc. etc. this bald patch left me feeling kind of like I'd been mugged.
The dermatologists are thinking that Humira (which evidently is working fantastically for me in most ways) may have left me unable to fight off or limit fungal infections. I'm now taking anti-fungal tablets as well as using steroid creams & coal tar shampoo.
Has anyone else experienced this particular problem? I gather fungal infections can be hard to treat sometimes. My fear is that I won't be able to continue on Humira. I cannot contemplate going bald either!
My daughter doesn't have arthritis but she does have Chronic Fatigue Syndrome/ME and at one time she had a terrible time with fungal skin problems she just didn't seem to be able to fight off. She had horrible black & dark green stains on her skin - all over her neck and forearms. (Not at all a good look when you're 15....) It took several treatments with fluconazole to get rid of them. At the same time she developed dozens of verrucas. The doctors decided it was down to immune system problems connected to her CFS/ME and so I could see similar things happening to people on drugs for RD.
It's so frustrating that a drug that is great for you in other ways seems to be causing new problems. :S
Thanks Livingston. I'm glad to hear your daughter got on top of the infections eventually.
It's incredibly difficult to work what's going on. With RA and so on the 'why?' bit is something we probably all think about but it doesn't really have much bearing on how we behave. But with this we (I mean 'they' really - the doctors) need to find out what's behind it because if it influences whether or not I continue Humira.
Was your daughter taking any drugs that might have been involved? Or was the upshot that the fungal infection and verrucas were definitely autoimmune issues in their own right?
She wasn't on any drugs but they decided in the end that her immune system was so misdirected & busy attacking her, causing all her fatigue & memory loss that it just wasn't responding to these outside invaders. The effect was almost as if she was on immunosuppressant drugs.
She did have (and still has) a fairly high ANA titre which concerns me because that's where my auto-immunity issues started out many moons ago. For now we stick with CFS/ME but I remain very vigilant to the possibility of Lupus, RD and the like.
As you say, these things are not straightforward. I hope you are able to continue with Humira without losing your hair. I have thought about what I might do if a treatment made my hair fall out. Although I am far from precious about my appearance, I suspect that would be one indignity too far for me.
Good luck with your assorted new lotions, potions and pills.
That's very interesting about the immune system being 'too busy'. Hadn't thought of it like that but I guess it makes sense.
It must be worse seeing your daughter struggling with all this stuff than dealing with it yourself. I do hope she gets better rather than worse. My daughter in law has fibro and was pretty much housebound by it for a few years. Just lately though she's been feeling so much better - smiling again, finding her zest for life.
My daughter's much better now too - just about to go into 3rd year at Uni. It was horrible at the time. I felt so helpless. Having a child with hard to define medical problems turns you into a whole other kind of crazy person and you would take it all on yourself in a heartbeat if you could. I still worry that I have passed her on a big barrowful of crappy DNA - but I can't take it back now.
I can relate myself to that idea of the immune system being busy with other business. On the whole, I think mine is still hypervigilant, even on DMARDs. I haven't had so much as a sniffle in more than 2 years - no coughs, sore throats, sickness bugs, nothing. But occasionally, something slips through, like chickenpox did about 10 years ago, and I mount no immune response to it whatsoever.
Anyway, that's enough of my family. Good luck with your fungus. ;P
Hi Young lady, I am glad that you feel so much better though I am sorry about the rashes and damn don't tell hubby but bald ladies are number one xx have you tried a cream called zerodouble, it has given relief to me so it might help with the itching ect
Fungal infections are a £&@*^ - fungus is definitely a bogeyman. Not to depress you but it took me two years to conquer a bout I had a while back. So sympathy. Especially on your head, as I find it hard to cope with anything too visible. I think I've got used to RA being a largely invisible disease which allows me to pretend that all's well, so anything that marks me out as a diseased person is soul destroying.
You probably know this, but I was sad to learn that wright's coal tar soap no longer contains coal tar (and it no longer smells right). So I did get a prescription coal tar cream that helped - alongside heavy duty anti-fungal drugs.
Thank you! Just hearing from someone who has had similar things occur is encouraging.
I've got shampoo with coal tar in it and also salycylic acid to remove the scales ready for the heavy duty steroid cream. Funnily enough, I've read the instructions & started doing it properly since finding bald patch!
Perhaps mistakenly I think myself a safe googler by now, guaranteed not to faint or think I'm dying. But the weird and whacky world of fungus is something else.
Yesterday something made me limp, it doesn't take much. But it doesn't last these days either. I started thinking just how much I love the real ease of movement that I have most of the time ...... if this battle of the fungus is the price I pay for that, it's not a bad deal.
Hi I have been on methotrxate since last November and have been experiencing fungal skin infections since April. Consutant has now referred me to dermatologist to try and track cause but I think it is down to lowered immune system. I have had three courses of sporanex which clears it up but then when I stop taking it, the rash comes back in a new place. However, the benefits of methotrexate are really outweighing the side effects as I can cover the rash up, may be difficult on holiday next week though, and to be pain free all over is worth it.
Thanks MColc, hearing about others' experiences is helping me get my head around this.
I too feel that the benefits of my current treatment outweigh this side effect (assuming that is what it is in my case, still not 100% sure). I'm just a little concerned in case I lose more hair - the baldness is a little dramatic and my scalp is badly affected.
Great to hear that Mtx is working so well for you in other respects. Being pain free all over is a wonderful result. I hope you have a great holiday, don't let the rash cramp your style!
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