ulcers and boils ???

[TedTheMaineCoon]

Hi

Can anyone inform me please , do you get mouth ulcers , sores & boils up nose & a runny nose , as if you’ve got a constant cold with PmR ? I go through boxes and boxes of tissues !

[PMRpro Ambassador]

No, that isn't normally a part of PMR. How sure are they about your diagnosis?

[TedTheMaineCoon in reply to PMRpro]

I’m not sure that I do have pmr to be honest !

I think the symptoms from my spinal stenosis is similar to some of pmr symptoms & I think there’s maybe lupus, srogrens or myositis going on . I expect time will tell .

[PMRpro Ambassador in reply to TedTheMaineCoon]

I was wondering about another vasculitis.

[TedTheMaineCoon in reply to PMRpro]

Ahhhh yes ! Could very well be . Hope they get a diagnosis soon . I appreciate it’s tricky to diagnose autoimmune diseases as there’s many of them & they can mimic each other .

[SnazzyD]

I used to get mouth ulcers and after Covid I had nose sores for months. Perhaps you need to have a swab taken from your nose just in case an organism has set up shop there while you are immunocompromised. Or as PMRPro says, you have another diagnosis. There are autoimmune problems that affect the nose tissues and oral/throat area.

[TedTheMaineCoon in reply to SnazzyD]

Ahhh yes I had covid back in March .

[SnazzyD in reply to TedTheMaineCoon]

I did find that Naseptin a nasal cream from the GP helped a lot. I don’t know if the sores were virally induced and then a secondary bacterial infection crept in or what but the fact the cream helped says it could be. I also had a permanent bunged up feel high up in the nose. You’ll need a doctor whatever.

[TedTheMaineCoon in reply to SnazzyD]

Thank you for your advice 😊👍🏼

[Hidden in reply to SnazzyD]

Hi! I am being tested for various things (mainly IBD) atm and my nostrils overnight were COVERED in ulcer like things, i also used naseptin cream! My question is, after using the cream on your ulcers, did they crisp up and fall off? Almost like a coldsore would? I’ve never had anything like this and have no idea why i would get this!

[SnazzyD in reply to Hidden]

I couldn’t tell because they were inside my nose.

Crusting can certainly could be caused by the cold sore virus herpes simplex, but a crust can also form with a Staphylococcus bacterium, commonly called impetigo. It makes a golden crust and falls off but tends to spread. There are other causes too though. Have you had them swabbed?

[Hidden in reply to SnazzyD]

Thanks for getting back to me so quick!!

No she put a torch thing up my nose and just gave me naseptin cream (works amazing)

I’ve been back and forth the doctors so many times this month i think they’re just sick of me so did a check and that was it, what is strange is a family friend has chron’s disease and she has had this a few times!! Yet when i went to the doctors and said “I’m waiting for tests to confirm IBD so this inflammation in my nose must be linked” she was like “I don’t know of any link so i am treating this as a separate issue” 🤦‍♀️

[SnazzyD in reply to Hidden]

Well with Crohns you can have ulcers from top to bottom of your tract but I don’t know if that extends to the nasal passages, even though there is a link via the back of the throat. The fact that Nasepin works suggests a bacterial infection, particularly Staphylococcus. The doctor thinks it’s a separate issue, it might be but in any case a swab would be handy to know what the causative organism strain is. If it keeps coming back perhaps it’s MRSA or something else that is rattled by the cream but not eradicated. If it were me, I’d go back and say, “look the cream works but it keeps coming back, what about a swab to see exactly what it is to avoid repeated visits”. Surely that will help them ‘get rid of you’ because they are not constantly treating blind and besides it’s better science.

[Hidden in reply to SnazzyD]

Thank you for getting back to me, i went to the hospital and they didn’t swap me either and even though i said i’m getting the golden crust they said it don’t look like staph so keep using the cream 😫

[PMRpro Ambassador in reply to Hidden]

Dear me - microscope eyes now ...

[Hidden in reply to PMRpro]

Huh?

[PMRpro Ambassador in reply to Hidden]

"It doesn't look like staph" - with the naked eye?????????

[Hidden in reply to PMRpro]

Bloods were clear, but yes just a torch up the nose, couldn’t even find the proper nose opener tweezers either so could barely see 🤦‍♀️

[SnazzyD in reply to Hidden]

Did you ask for a swab and they just said no?

[Hidden in reply to SnazzyD]

Yeh, i said I’m scared its a staph infection as I’m showing two different signs of one including the nose, and said i need tests sent off and they said because bloods came back clear and it looked like it’s healing they said to leave it and keep using the cream

[SnazzyD in reply to Hidden]

Clear of what? Any explanation? If not, whenever you get bloods done it is worth asking and them writing down exactly what they are testing for and what the results were. Otherwise blanket terms like this just make it even more foggy. You walk out the door and they forget about you but you are left with you and your body, not knowing what to do next with no answers.

See if it heals and if it comes back, hopefully you’ll have more ammunition.

[Hidden in reply to SnazzyD]

Thank you!! I know right! I even asked for a copy of my blood results but i was refused and told to have discharge papers instead but I wasn’t admitted so i didn’t have any papers, I personally think it could be behcets disease but no way to confirm without knowing my blood results 😫

[Janet57]

No more than before PMR. I don’t think it’s one of the regular issues.

[Stills]

note my diagnosis is Stills Disease which for me manifests as rheumatoid disease. Diagnosed aged 17 now 61. Yes I get nose ulcers, ear boils, constant very sore throats, weepy eyes, soft tissue overgrowth on gums, evidence of chronic illness within nails and strange grainy brown irregular mole like growths over my torso. GP not interested in any of these so I have to self manage until treatments has to be applied, usually removal of gum tissue or mole growth. I have other AI ailments diagnosed such as Lichen Sclerosis so accept these afflictions as part of Stills and that it’s just something to put up with. It wears you down though which is bad as I need all my inner resources to tolerate joint pain and stiffness from Stills. Sorry I don’t have any cures to recommend.

[TedTheMaineCoon in reply to Stills]

Awwww sorry to hear of your health issues . Thank you for replying . Sounds a lot like what’s going on with me . Yes it’s just trying to manage and cope with it all !

Take care

[Gimme]

Mouth ulcers can be a sign of anemia and supposedly a lot of PMR sufferers are low on iron. Though when we have spoken before, there seems to be some doubt that you have PMR, therefore, I would talk to your doc. Those symptoms do sound unpleasant. But one thing that I have discovered with my PMR journey from having seemingly random symptoms which never occurred to me that it might all be connected until I dumped my collective misery on my GP. Then I got my diagnosis. You might need to do similar to help them decide what is really going on for you.

[TedTheMaineCoon in reply to Gimme]

Thank you!! I think you’re right there !

I’m going to have a talk with Gp , because it’s like I’m getting no where ! Appreciate your reply !

Take care yourself 😊