Questions for my fellow sjoggies!

[bigb00]

I know I could surf the internet for hours looking for the answers to these questions or just come to the most knowlegable place I know ....


1. Has anyone ever had a Mucocele? (dead/inflammed/injured salivary gland) Are they SS related?
2. Has anyone tried Aleve for Joint pain? I've tried Celebrex, Arthrotec, Tramacet & high doses of Ibuprofen without much relief...
3. I've had 4 major upper respiratory tract infections since February. Could this be SS related? or just bad luck? Should I bring this up with my Rheumy?
4. My tips of my fingers turn purple when they get chilly ( not super cold but chilly ) is this a form of raynaud's? or.. . nothing?

Thanks for your help to my questions. I appreciate your feedback!

[lori]

Big,

caant answer your first question...

not sure about the aleve- i take voltaren xl... along iwth my heavy duty ra meds

yes you should tell rhuemy about the respiratory infections

and due to brain fog i forgot the other question!!!lol

God bless

lori

[lori]

yes.. the purple fingers sound like raynauds to me...if your fingers should ever suddeenly swell... DO NOT ICE THEM.... i have raynauds and noone told me ther could be sudden swelling so a month ago that happened & i iced it on the way to the dr.....killed major tissue and came close to losing finger!!!!

Lori

[angielyn]

I did the Aleve thing for about 2 weeks and that was it. My stomach was a mess My Rheumy prescribed Mobic BUT still waiting for my ins. to approve it. And yes I usually ate at least crackers but it was just to much for the belly. As for it working... Well... It didn't take it away that's for sure but for me it did help a bit. It actually helped me more then the 800mg Ibuprofen they gave me.

[Joe S.]

1: not me
2:Yes, try also carrot juice, reflexology, reiki, and high active dark cherry or dehydrated cherries, and always remember to breathe
http://www.chakraforce.com/LEDlist.html#Joints
3: yes, yes, and yes
4: yes
http://www.chakraforce.com/Tonations.html#173.

My answers are short it was a very long weekend and today's flair is almost gone.

[cremer]

Hi

1. Never heard of it, sorry.
2. I've tried many things including Aleve, it didn't agree with me and made me feel sick. Only thing that works for joint ache is Plaquinel.
3. A big YES for this one.
4. It sounds like Raynaulds to me. I have a mild version in that I find it hard to grip and write, also my fingers tingle a lot, my Rheumy won't DX it though.

[Linda196]

Looks like all your questions except #1 have been dealt with well and comprehensively, but you and I seem to be the only ones who experience mucoceles. Mine take the form of what looks like a clear bubble pushing through the mucosa...a see through pimple, sort of; or a "blood blister". They eventually break with no residual trauma.

Mine aren't painful, but one of those annoying things thats always in the wrong place so it attracts scraping with utensils, biting the lip at that point, or just frequently running the tongue over it like a sharp edge on a tooth, because it's there!

As to the relationship with SjS....I've had them since I was a child, so in my case.....no relationship.

[hollowoakfarm]

I had to go look up the Mucocele, but it appears that's something I've had since I was a kid.  Small ones only, none of the several-centimeter ones mentioned, but more along the lines of a few millimeters.  For me, not Sjs related, then.

Never tried Aleve.

Don't know about the respiratory issues, but I'd bring it up to the rheumy.

Yes, Raynaud's.

[amk922]

I also has to look up mucoceles and I do get them, often inside my lower lip and in my upper left cheek where the duct is for my parotid. They are usually 1-2mm, no more than 3. They don't hurt. I usually break/pop them to release the saliva as I've just assumed they were from my salivary ducts getting clogged up. I got these for a number of years before my diagnosis, but I thought in retrospect that they were SS related.

I do take Naproxen twice daily (prescription Aleve) and it is great for me but most people can't tolerate it.

[lea78]

i have also had upper respiritory infections 3 in last twelve months never had one before that and had a crackly chest inbetween infections rarely, i was thinking the same thing could it be related

[bigb00]

thanks so much for all the replies! helps a lot!

[irish]

For number one, I believe if you look it up mucoceles can be from many sources and autoimmune disease is one of them.

2. I always had good luck with Aleve which is the same as prescription naprosyn. The OTC med is much weaker dose than what is prescribed. I do take 2 Aleve at times and always take food with it. I would talk to your doc about finding some med that your stomach can tolerate. Are you suffering from GERD or reflux and if so, are you on medication. That needs to be addressed also.

3. Any time you suffer from a lot of infections (whether you have autoimmune or not) you need to tell your doc. I would tell your rheumy and ask him to check your blood levels of IgG plus the B and C cells levels. These tests show if you are low in the substances that prevent infection in the body. People with autoimmune disease can have immune deficiencies also.

Check out this website: http://www.primaryimmune.org   Just glance through it so that you get a general idea of some of the problems that cause infections. It will help you feel more comfortable when talking to your rheumy. If he doesn't want to test you then find an immunologist or a hematologist who can do blood work and advise you on what to do if anything is abnormal.

Don't panic above all as sometimes we go through periods when we are more susceptible to infection and then it will improve. Need to have it checked out to be safe. Good luck. Irish