Hello everyone !
Hope today is pain free and burning free !!!
I’ve notice my toe nails are getting hard and underneath them is dry skin after skin layers. Started with one toe a year ago. I went to foot doctor who said not fungus but injury to toe must be hitting your shoe. Ok well now they are all getting like that and they don’t look like fungus pictures I see online but my pcp said looks like fungus and maybe spread to the other toes. However it’s not destroying the toe nail and it doesn’t look like fungus picturs on line. Anyone have anything similar because of EM. I figure yes it will change your nails.
Thanks !
Hi there
Yes my toe nails are harder and thicker when I cut them have to be careful they can hurt , it is like an itchy feeling
This is a part of the EM . I use Vaseline to stop the dryness and helps with pain . Hope this helps take care
Hi there, Seenie from Moderator Support throwing her two cents worth in here.
Chances are it’s probably your EM, but if I were you (which I’m not) just to be sure I’d ask for a referral to a dermatologist for an opinion. Here’s the reason: it could also be something else of some significance. From my own experience, I had what the GP said were “fungal” nails. After years of having “fungal” nails that eluded fungus treatment, I became quite ill with something that eluded diagnosis. Finally, (but only after a lot of damage was done), I was diagnosed with severe psoriatic arthritis. The nails, had they been diagnosed properly by a derm in the first place, would have been recognized as psoriasis, the first clue as to what really ailed me. Instead, I had twenty years of mystery complaints, and now, permanent joint damage.
In my experience, GPs don’t know much or care much about nails. If mine had, I’d have been saved a great deal of pain and suffering.
Hi Seenie
I am sure you are right with what you said. My nails are like that and it was quite a while ago that Jules suggested it could be what you said going off photos I put on. However I never got my dermatologist or rheumatologist to agree but as I am now on the same treatment required for rheumatoid arthritis they are better than they were not perfect though.
It’s hard work getting a diagnosis for things like this at least in the UK.
Same in Canada. The wait for routine dermatology is 6-9 months, unless they think you have skin cancer, in which case you get seen promptly. Wait time for routine rheumatology is 6-9 as well. So if you go to one, and then they refer you the other (as they will often do for PsA) you’re waiting a very long time. And then if one or the other gets it wrong … oh my, decades can pass! LOL
Didn’t realise it would be like that in Canada. Maybe they hope you will be dead before it’s time! Same here for cancer when my GP suspected I had nasal cancer years ago I had got a telephone message before I got home 15 minutes later to give me an appointment 3 days later. I had a brilliant GP then he must have phoned the hospital straight away. He was very selfish though just after that he retired I said joking that was mean of him he said he had given the NHS 40 years of his life and wanted time to spend on his boat and with his dogs.
If you show them money by paying private here suddenly they are available to see you very quickly. I had equity release on my bungalow so that if need be I can do that.
Yes, my nails are not good at all. My rheumatologist says it’s not fungus, though I think it is, but that the nails can’t get proper nutritents and blood flow, etc., which sounds reasonable enough to me as to why I can’t fight the fungus. I just take really good care of them and I use Jublia, which has helped them improve a lot but I don’t think they’ll ever look normal…
Very interesting. Thank you. I will bring this to the new rheumo attention in Sept. For now they will clip and send away to see if fungal. I don’t think it is either. It’s probably the disease or something else as you said. I’ll keep you updated.
Me too I had noticed the thick skin also and they are itchy and hurt when I cut them my fingers nails can be the same
I do want to try the CBD oil keep cool
It’s a prescription antifungal for the nails. It’s helped me a lot but it’s taken a couple years to improve. They’re not normal but they’re so much better.
So I do have fungus and I really think that’s a disgusting word and I cringe at it every time I say it. Aspergillus, rare and can be opportunist infection.
I’ll see what the dermatologist says next week as it’s very rare to have this. To my understanding the normal person inhales mold spores outside etc and has no problems but those with weakened immune system it can manifest different parts of the body and of inside the lungs heart can kill you. I don’t believe you can catch it as other toe nail… Fungus… There’s that word again… Thise w hiv cancer can get… I’ve been tested for both numerous times.
My doctor said it could be from the EM disease itself but she’s not sure as she’s not an EM doctor.
Next week I’ll know and hopefully they can help rid of it.
Hi Seenie I wonder how many folks with Psoriatic Arthritis also have EM? It seems that I hear of a number of anecdotal evidence that they are somewhat tied together at least with Achillies Tendonitis . Has anyone else noticed this ?
Seenie pointed me in this direction. Yes I have both, well not so much now the Psoriatic Arthritis as I have had better treatment for my Rheumatoid Vasculitis and it’s now kept at bay. I wasn’t sure what it was and posted some photos so that people like Seenie could see and she was pretty sure that’s what it was.
However, when I asked my rheumatologist he said no it wasn’t. Then again so many times I have been told things aren’t and they turn out to be. It happened with my rheumatoid vasculitis a renal consultant about 4 years ago wondered if I had it again I was told no. Finally must be just over a year ago now my rheumatologist diagnosed it!
I am now having Rituximab infusions, which was originally a cancer treatment but was only approved for the vasculitis a year ago.
So, it obviously is possible to have it along with EM.
I said joking that was mean of him he said he had given the NHS 40 years of his life and wanted time to spend on his boat and with his dogs.