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Thread: Think maybe I am going into a flare

  1. #11
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    Yes mam, he also mentioned that something with your folic acid could, and low iron levels, he thought about checking my iron but he said my hemoglobin and stuff looked good on a recent test I had done, but said they might check my folic levels at a later time.

    So many possibilities, geezz I was really hoping they would biopsy it since these tests can help link it to being an autoimmune disorder. I don't have enough to go on and this test would have been helpful.

    I still can't believe I'm using Lamisil on my lip, treats athlete's foot, jock itch and ringworm. He thinks if it's oral thrush, it might be helpful, yet it hasn't done a thing except make it look worse. It says not to even stick it near your mouth.

    There is a place in the roof of my mouth that will likely need a biopsy at a later time. I have had it there forever, it started out as a blister and it won't go away.

    This doctor was super nice, but I am getting tired of that whole guessing game. They clearly don't have a clue, and could do something to find out, but don't. It's goofy. I guess I'll have to wait for the next breakout and nag them again.

  2. #12
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    My blistering starts out small, then it gets pretty bad, typically alot larger than those photos are showing. Thanks for looking at those pictures. I'm amazed it looks the same. Did they think yours was raynaud's & lupus the first time they saw them? I just can't understand why none of my doctors can acknowledge that if it does look autoimmune related. The thing with getting a dermatologist to look at them, I mean all I could do is show him photos. I cannot control when this breaks out. I have no idea when it's going to happen. I was getting them very frequently last year, then after the antimalarials, they stopped until the other day.

  3. #13
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    Mary go to my profile and click on the blog section at the top and scroll down to you come to what (what raynauds can do to you) and see if you think your mouth looks the same as mine, you'll see a large blister on the skin between my nose and lip.

  4. #14
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    Quote Originally Posted by maryalice40 View Post
    Yes mam, he also mentioned that something with your folic acid could, and low iron levels, he thought about checking my iron but he said my hemoglobin and stuff looked good on a recent test I had done, but said they might check my folic levels at a later time.

    So many possibilities, geezz I was really hoping they would biopsy it since these tests can help link it to being an autoimmune disorder. I don't have enough to go on and this test would have been helpful.

    I still can't believe I'm using Lamisil on my lip, treats athlete's foot, jock itch and ringworm. He thinks if it's oral thrush, it might be helpful, yet it hasn't done a thing except make it look worse. It says not to even stick it near your mouth.

    There is a place in the roof of my mouth that will likely need a biopsy at a later time. I have had it there forever, it started out as a blister and it won't go away.

    This doctor was super nice, but I am getting tired of that whole guessing game. They clearly don't have a clue, and could do something to find out, but don't. It's goofy. I guess I'll have to wait for the next breakout and nag them again.
    He's saying your iron and folic levels look good but lupus gives off false readings, the rheumo and my gp got great readings at 13.5 until it showed itself at 8.0 after 6mths of feeling more ill.

    A biopsy would have helped incase your getting false readings through your bloods and you should'nt really be using Lamisil, i've even used vaseline and that's been no good either, you could be damaging your lips more.

    Just watch what your using that's all i can say mary.
    Last edited by Peridot20_Gem; 05-23-2011 at 03:48 PM.

  5. #15
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    Quote Originally Posted by maryalice40 View Post
    My blistering starts out small, then it gets pretty bad, typically alot larger than those photos are showing. Thanks for looking at those pictures. I'm amazed it looks the same. Did they think yours was raynaud's & lupus the first time they saw them? I just can't understand why none of my doctors can acknowledge that if it does look autoimmune related. The thing with getting a dermatologist to look at them, I mean all I could do is show him photos. I cannot control when this breaks out. I have no idea when it's going to happen. I was getting them very frequently last year, then after the antimalarials, they stopped until the other day.
    I did'nt have them 4yrs ago when i first saw my dermo but he still diagnosed me with raynauds through a mimicing ringworm rash which was psoriasis and when i saw him last year that's when they was there and he gave me stronger steriod cream twice daily but he's told me it's to do with the raynauds and SLE working strongly.

    The only thing which moved them was the plaquenil after 5wks of taking it and i could only stretch 12wks with that and within a week of pulling of it, bang i've had them since.

  6. #16
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    I can see a little bit of a similarity there. I can also tell this is not sjogren's now. I've had rashes on my face and scalp that looked like psoriasis too, but once it went away, it never came back. I kept telling that doctor today the only thing that helped was antimalarials. You know, I bet you could go see my doctors, and they'd tell you it was something else. LOL.

  7. #17
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    I am laughing mary because even though all the results the doctor's have on me plus myself having paperwork, it would be a laugh in one way to see your doctor and see what he'd say about me GOOD POINT MADE.

    I really did find the plaquenil ACE refering my skin and i can't knock the medication on that what so ever.

  8. #18
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    Your right too, shouldn't be using those medications, I blistered more, skin peeled off, and now it's all irritated and itchy. I knew it wasn't oral thrush anyways, and who treats that without testing or giving you antibiotics? Isn't that a serious condition?

  9. #19
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    Mary, thrush is a serious condition especially if you have a partner it can be passed back from one to the other, that's why i suggested the dentist in one way so they could check your mouth and they'll answer your questions otherwise as mine are quite good, mind you i've been with them for years.
    If those medications are making it worse i would'nt touch them but it's up to you at the end of the day but if they're getting irritated you want to be careful.

  10. #20
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    My great aunt had oral thrush once, her immunity was run down, and she couldn't swallow, she also had white patches in her mouth/throat. She got very sick. I do not have oral thrush. My tounge is just a little white from where I smoke. It's been there for a very long time. My doctor called it black tounge once, but when I quit smoking last year, it completely cleared up. I'm calling my dentist in a half hour, maybe he can get me in today or tomorrow. It looks horrific this morning. And trust me, I know I'm not contagious. If it was viral, I'd be sick. I don't have any STD's and I haven't had a partner or dated anyone since my divorce in 2000. Only thing I have is epstein bar virus, and this is not mono. I haven't kissed anyone except my puppies on the cheek, lol.

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