Spots....

[EmmieJayne]

Hello,

Today I returned to work for a few hours after 2 weeks off following Neurological symptoms of Behçet’s. The headache seems on it’s way out (for now) and joint pain is under control. No ulcers for a few weeks...

I’ve never experienced skin lesions or spots as part of this condition however, today I’ve noticed a rash on my forearm that looks like little spots. Could anyone tell me if this looks like a symptom of Behçet’s they have experienced or know of?

Thanks

Em xx

[Pixie013]

I currently have spots that look just like that--they are located on the inner sides of my knees. Over the last month, they covered my upper arms. I don't know what they are as Behcet's can present with numerous types of lesions. They tend to go away after I take my cocktail that consists of a biologic, an immunosuppressant, and a drug that has recently shown promise for the treatment of Behcet's--Otezla.

Thanks,

Pixie

[EmmieJayne in reply to Pixie013]

Hi Pixie, thank you for your reply. I will keep a record of any more spots that appear like this to take to my appointments as sounds like it’s related... xx

[gillianTS]

what medication are you taking?

[gillianTS]

Me again, I have just looked at my pictures from last year when I started with a rash on my arms and they started just like what your image shows and I had a bad allergic reaction to Colchicine, if this get any worse please go to the GP although mine would not let me stop taking the drug until I made contact with the rheumatologist who emailed me a letter to give to GP by which time I was covered with a huge rash that got very sore and red. My blood test showed my liver enzymes were high showing the following:

Liver Function test Serum ALT level (value 208 - normal range 9 - 55) and Serum gamma GT level (value 166 - normal range 6 - 35.

Good luck and lets hope this is something simple and calms down soon.

Gillian

[EmmieJayne in reply to gillianTS]

Hi Gillian,

Currently I’m taking no medication. My Rheumatologist did prescribe me Colchicine, but I decided not to take it until the mouth ulcers are more unbearable - I can cope with the ulcers, my main issue is the headaches which hopefully will get on top of soon as I’ve just been referred to CofE in London. I’ll take the photos with me. Thanks for checking yours xx

[gillianTS in reply to EmmieJayne]

Hi EmmieJayne

Might be worth taking a antihistamine to help with the itching. Hope you get it sorted soon.

Gillian

[gillianTS in reply to gillianTS]

Hi EmmieJayne, how are your spots now did you get a diagnosis and treatment?

[EmmieJayne in reply to gillianTS]

Hi Gillian,

The spots cleared up after a few days, I didn’t get any treatment as was still suffering with my headache that comes with my flare ups so just needed to rest. My Rheumatologist has referred me to CofE in London for this do hopefully I can start some treatment. I will show them the photos of the spots too. Thanks for your message xx

[LLocke]

Yes. I get those types. And all the types. Some start like those you showed and change over a short time to different looking. Some stay exactly like that till they go away. And i was on nothing when i get them. So mine were not medication induced. On the medicine my doctor put me on for my Behcet's i rarely get the skin sores now. Only a handfull each month now. Yes thats rare for me. As they were daily and continuous since they started. Please let your doctor see the photos of them. Hopefully they can tell you what they call them. I gave up naming the types. I just call them all skin sores. Take photos. And bring them each visit i have every 3 months. Keep your log of them and bring them with for your appointments. Thats all we can do. Monitor this disease and try to slow it down. Hopefully they can get you on something that helps controll your symptoms better.

[EmmieJayne in reply to LLocke]

Hi Locke,

Thanks for your reply. It sounds like the same skin rash you have experienced. I keep records of all of my flare ups, and I’ve just been referred to CofE in London so I’ll take the photos with me xx

[Mcgs]

I recently started struggling with a bumpy rash as well. I went to see my family doctor and he couldn’t quite figure it out. However, he said it was not caused by the HUmira. The rash was getting worse so I went to see my rheumatologist and agreed that it wasn’t caused by HUmira but is definitely something significant, so he sent me to a dermatologist. The dermatologist took a biopsy which came back saying it was caused by some sort of auto-immune related disease and is inflamed.

Are your dots itchy? When they go away do the leave discoloured skin?

[EmmieJayne]

Hi Mcgs,

That’s very interesting and good you got the result that it’s autoimmune related.

They were very itchy last night and my arm feels hot inside. They have only gone down slightly, so still red at the moment. I think mine could be autoimmune related also. I’ve just been referred to CofE in London. I’ll take the photos with me xx

[muttiof3]

On a recent visit to see my sister in New Orleans, I got a similar rash. I had been working in her garden and got a couple of bug bites but there was nothing on my neck at all. Two days later I was reading a book and scratched my neck and next thing I know I started to get a rash and it moved all the way down my arm within a few hours. It both itched and burned. A day later, when it didn’t get better, I went to an urgent care doctor there and they decided it was Behcets related and put me on a seven day course of prednisone which took care of it.

This has never happened before but that’s sort of how my Behcets is. I don’t seem to get a lot of repeats of things (besides constant joint/ “shooting” pains, being tired all the time, and mouth ulcers) just a lot of new things on a regular basis... I did get some scarring and, like the rest of my scars, they get inflamed and itch when I’m getting a flare... I have pictures but don’t think I can post but I looked at them and my spots look like yours🤓.

[EmmieJayne in reply to muttiof3]

Hello, thank you for your reply. Yes, I do believe mine is Behçet’s related too. It has improved a lot today so I am going to keep and Eye on it. Today I have a small ulcer on the side of my mouth. Like you, I don’t get lots of repeats on things, apart from the monthly headaches which usually are blocked out by Sumatriptan (migraine tablets, although it’s not a migraine) it helps me get on with normal day to day life, until recently when it didn’t block it and I was very unwell with the pain - as I kept a record of all my headaches and mouth ulcers over the last 7 months I’ve now been referred to the CofE in London.

I too do suffer with shooting pains in my arms and terrible fatigue just like you. I’ve had genital ulcers but not for some years now. Intermediate uveitis diagnosis many years before Behçet’s came into question.

I hope your flares are at a minimum and you are resting well, I do find I sleep a LOT with this condition.

All my best xx

[2106]

Regarding you ulcers and joint pain I use a natural toothpaste made by The Green People and since using haven’t had any ulcers. Takes a month or so once you start for things to settle down. Also I take flax/linseed oil tablets vegetarian one’s these really help my inflammation. A natural Coconut wash will sooth the skin xx

[EmmieJayne in reply to 2106]

Hi 2106, thank you for the advice. Glad to hear they have worked for you.

I will take a look and get some of those straight away! 😊xx

[DrMaggs16]

Yes it is a symptom but they will have to do a skin biopsy to determine if BD or eczema. I have them on my leg. Is the rash near a sight where you had an injection. If so then it is pathergy and form of BD. Get to Doctor.