Lupus Support Group

Hi , I stopped sharing cause my rheumy appt. went sour but told you guys I'd try another rheumy and keep you in the loop about medical decisions. I had an appt. with my nurse practitioner and they are referring me to a different rheumatologist. It may take 3 months and I will have to pay out of pocket as the insurance does not cover him. The decision was also made to keep me on the plaquenil, which is a relief cause I could barely walk before without it.

I've been well considering. Have missed everyone. Have had bronchitis for a couple of weeks and am still being treated for it. Don't seem to be able to have a "common cold" like everyone else.

Today I discovered that I have a mouth sore right inside the right corner of my lips. Is there anything I can or should do about this? I have never had one before.

I've been having problems with pain in the muscles from them cramping up when I move around. I guess I just have to hang in there. It's scarry because I believe that I do have lupus, but it's a stranger who decides who gets treatment and who doesn't. This causes a lot of anxiety for me.

Congratulations April for becomming a new group leader!

Hugs

Hope

Thanks Hope, I have had issues with muscle cramps and they always check a lab (I think that is the one) but it checks for muscle breakdown. So far I haven't had an elevated level but I know it was important because they check it every time I complain of cramps. I get cold sores on my lips but I don't get sores inside my mouth so not sure what can be done for that. I hope things work out quickly with getting into see the new doctor. It is frustrating when you feel like other people are orchestrating your life.

April

I know this is something others have complained about. Hopefully they will check in soon. I only get the while on antibiotics and I know they will go away when I am done.

Alison

That's interesting Alison, because I've been and am on antibiotics now for the bronchial infection I have. I'll have to keep this in mind.

This situation with the diagnosis is frustrating. I feel that at some point I will have to get off the plaquenil so that the doctor can have a clear picture of what is going on when he evaluates me.

Hope

I hate it when I have to go on antibiotics. I feel like crap the whole time.

Alison

Hope....I get the mouth sores when I am in a flare and I can get them anywhere in my mouth from inside my lips to under my tongue to up on the roof of my mouth....I usually don't do anything for them and eventually they go away.

I think it's a good idea to stay on plaquenil as this might keep your illness at bay.....I'm sorry to hear that you've had an infection for a long time....my thoughts and prayers are with you.

Eva

Ali, November was a wreck for me and it all started with a bad UTI and I had to take antibiotics. I never thought something that is supposed to help you could make you feel so terrible.

April

Hi, I have sores inside my mouth quite often and use bonjela to numb them. I also have sore ulcers inside my nose which end up bleeding. They are a pain, but I am in a flare up recently and you could be too.

annmaz, I get the sore inside my nose to. It is like my skin is really dry. Do you use anything for that? Just curious, I always use vaseline but wonder if there is a product that is better (or maybe something to prevent it) I thought about a humidifier on my nightstand when I sleep but didn't know if it would work.

April

I have been having the sores in my nose forover a year, well before I was diagnosed with Lupus. Now I know it's one of the lupus gifts... I use an herbal cream that I find natural food stores. It's from Vogel company but I am pretty sure they don't sell over the border. But I'm sure you could find something similar. It's not perfect but it brings some relief.

For the mouth ulcers, there is an amazing product (at least here in Quebec, Canada) called Amosan. It's an oral rinse and it does wonders (remember, I use to be a dental hygienist)! Maybe you can check it out at your drugstore...

Here's a link for the description of the product: http://en.wikipedia.org/wiki/Amosan

Good luck!