Dermatologist - Rosacea

I have been experiencing a severe burning sensation on my entire face, to the point were it will even wake me up at night. The thing is I have little to no redness at all, very wierd. I talked to my rhuemy about it when I saw him last week and he said "ah it's just the lupus, but you may want to see a dermatologist." I made an appointment and saw the doctor today. To my surprise the dermatologist said it was "rosacea." He said there were several types of rosacea, typical rocacea is raised redness on the face, but the hardest to treat is the type he believes I have in which the patient experiences a burning sensation and no rash. He prescribed Elidel. When I went to the pharmacy to get the script I was surprised at the cost (co-pay), the pharmacist said this med is used for liver transplant patients typically and is extremely potent stuff!

I just wonder, when does it end? Have any of you experienced any of this? I am having a really bad day I guess, feeling overwhelmed by the littlest thing, even this. Sigh.

Melissa

Melissa

I read your other post on the ins issues and now reading this post and can understand your feelings and being overwhelmed.

My bigest overwhelming issue was when i finaly decided to aply for ssd. I would not let the system beat me and didn't give up, took two yrs but i got it.

Also on the new med issue i am dealing with some what of the same thing right now. My dr called me fri and said he would like for me to start a new med, because of some test results he had gotten back. Not only the high copay for it , but its some nasty stuff as well. Just another decision, stressfull as it is for us living with the wolf. Even tho it might be a little issue for normal people for us its BIG TIME STRESS. But we can not let the wolf or anyone else beat us, because we are strong.

This may have not helped you, but just wanted you to know that you are not alone in you fight.

Wishing you the best and don't ever give up

from the yardman
Take care
Ray

Hi Melissa,

I am sorry to hear you are having a bad day and feeling overwhelmed. It is certainly understandable as it seems to be one thing after another for you lately. I didn't know there was more than one type of rosacea. It's interesting that the med they gave you is for liver transplant patients just like plaquenil is for malaria. I hope in the very near future we will get our own med so we don't have to borrow from others!! Does your dermatologist think it is related to lupus? Thanks.

Ray and Chris,

Thanks so much for lending me a shoulder, it's just been a long day and I let the "system" get the best of me I guess.

Chris, the doctor didn't say if the rosacea was due to the lupus, but hinted that it came with the territory. Like I said, I haven't been quite myself today so I really didn't probe him for questions like I normally do, just wasn't up to it.

Thanks again.

Melissa

Melissa

Your very wellcome and i hope your haveing a better day and many many more!!


from you know who
Take care
Ray

Hi Melissa and Ray,

It does seem there is stuff that just comes with the territory. I just recently broke out with these red spots all up my left forearm. Now I have to find a dermatologist and really don't want to since it will now be my 5th doctor. I just can't stand the thought of having to see another one and have tests done in between appointments. Having to go thru the system for appointments, tests and meds just adds to the frustration and stress.

Some days just get to us more than others. Wishing for a better tomorrow for all of us!!

HI Melissa and Chris

This may not help, but its just my 2cents I to deal with the rashes and the red spots and feeling hot on my face and also my legs. My dr allways tells me that it just part of the lupus . Over the yrs i have found a pattern for me when this is going on. If i have a rash and it itches its from the sun, if i have the red spots, its from some sort of stress(family) if its feeling the hot spots its usaly something to do with my meds but not all the time.
I know that we all all diff but the same in alot of ways I do hope that you ladies can find some answers, just the not knowing causes enought problems, like we don't have enought already!


from the yardman
Take care
Ray

Hi Ray,

Thanks that's very interesting! I know it is not the sun cause it doesn't itch and I do not go out much. It's not hot either. It could very well be stress though and it decided to pop out physically on my arm. The only thing that bothers me is that unlike a rash, the red spots are all different sizes - large, medium and small. I find that very strange but it seems like anything is possible with lupus!!

Hi Melissa, Ray and Chris,

Melissa the Rosacea is very interesting I had the same thing a couple of times last summer I just put a cold facecloth on it and it helped to settle it! As with many things I didn't mention it to my Dr, I just get sick of the never ending things that pop up

You have had so much going on over the last few months it is no wonder you are feeling down, it does get to you after a while no matter how hard you try not to let it and wondering when it is all going to end causes stress on it's own.

As for the medication here is a link to the information that the Mayo Clinic has I wasn't sure whether you had read about it or not so I put it in anyway.

I really do hope things settle down for you soon Melissa, I know what you are going through and it really is tough and not something you wish on anyone. I'll be thinking about you!

Take Care
Love and Hugs
xxxMaz

Maz,

Thanks for the link, your exactly right, I would not wish any of this on anyone, not my worst enemy (if I had one). I had not read anything about the cream, I appreciate the link. What I read was most interesting, especially the side effects! Amazing isn't it? They give you something help you with one thing and it could cause something even worse?

At this point the only thing I have been experiencing is the warmth after putting the cream on. But, that is nothing compared to the extreme burning and itching I was experiencing prior. It was getting so bad it would literally wake me up in the middle of the night.

Thanks again,
Melissa

Hi Melissa,

I'm glad the info helped It's so true what you said about the effects of medication, it gets very confusing sometimes I mean it's hard to know whether we are doing the right thing by taking them or not But we really don't have many choices.

I hope the cream helps and starts to give you some relief soon. Please keep us posted.

Take Care
Love and Hugs
xxxMaz