View Full Version : New Here
09-02-2005, 06:34 PM
Hello everyone I just joined and so glad I found you.I`ve had lupus for about 22 years now.I`ve also been on prednisone that long also.Right now I`m on 20 m a day because I`m having some problems(as usual) Has anyone ever had problems with their salivary glands? This is driving me crazy!! Relafen and tylonol help some.My rheumy is wanting to start me on Avara but I`m kinda scared of it. I have experienced serious side effects with a lot of the meds over the years and read that avara stays in your system for awile even if you stop it. I use to tolerate Imuran pretty good but this last June was running a fever of 103 while on it and rheumy took me off of it. Anyway---So glad I found you!! Suzyq
09-03-2005, 06:34 AM
I have had salivary involvement but it's not really been sorted out as to what is going on other than a hight amylase count. I haven't had a big problem with that. I am on 60 mgs of Prednisone right now due to a flare up.
This is a great site. I've been on it for just a couple of weeks now and have gotten a lot out of it.
I'm not familiar with the other meds you mentioned but I hope things work out for you.
09-03-2005, 12:41 PM
Hi Andyman I don`t really know whats going on with these glands either but I sure wish one of my docs would figure it out.And I don`t understand why my rheumy wants to put me on Avara for it. I love my docs but--sometimes I get frustated with them. So your on 60 m of pred. My heart goes out to you. Do you have many of the side effects? I`m on 20 and eating everything I can get my hands on. Should see my round,red,rashy face. Oh well,part of it--huh Suzyq
09-04-2005, 04:19 AM
Hello again Suzyq.
Finding good doctors is vital. I'm really luck now as I have a great team. If you are not happy with you doc I would recommend getting a second opinion until you get someone you are comfortable with and is getting you a result.
Yeah, the 60 mg. of Prednisone is a bit of a chore. I've been back on it for about 2 weeks now and have about another week before I see my Rheumy. I got really anemic so they had to pump me up. My biggest problems with it are my hands are like cement and I only can sleep about 4-5 hours a night.
I know what you mean about wanting to eat everything in sight. I haven't had that as bad as I've had it in the past. I have found that staying away from carbs helps. The more carbs I eat the worse it gets.
I hope you get things worked out with your salivary glands.
09-09-2005, 08:08 PM
Last year I had a major Flare up and started Cellcept and a higher dose of Pred. After a few weeks my mouth got horrible. I've had yeast infections before but this was the worst feeling. Finally at the next checkup my rheumy said it could be sougrens (that's not how to spell it). anyway, he put me on Salagen and Bingo, much better! I take it 4-6 times a day and drink a lot of water. Hope this helps!
09-10-2005, 03:24 PM
Have they tested you for Sjogren's? Just curious as it effects the salivary glands as well as the eyes.
Best of luck!
09-10-2005, 05:05 PM
Hey Guys---You know,I was wondering about Sjourns too.Well to be truthful the last couple of days I`ve been wondering about a lot of different things.I don`t know whats going on but I DO know its lasting to long this time.Is it Sjournsor a salivary gland stone or a blocked artery or infection or or or---I give up! I don`t know.I do know I`m in a LOT of pain and now I`m getting so weak especially in my legs.I cut my pred.yesterday 5 mg because I was holding so much fluid and swollen that I couldn`t even breathe good and the lasix didn`t help much.I guess I`ll try talking to my docs this week.My primary says talk to my rheumy and my rheumy wants me to start Avara but I just can`t bring myself to do it.There`s way to many serious side effects and its one of the drugs that takes months to get out of your system after you stop it. Needless to say I`m starting to get a little depressed here. Does Sjourns make you feel awful? I did read that sometimes people with lupus get it later on. Oh well---tomorrow is another day.Hopefully better!!!
I JUST GOT MY DIAGNOSIS A COUPLE WEEKS AGO AND HAVE MY FIRST DOCTORS APPOINTMENT OCTOBER 17. I'VE BEEN LOOKING ON THE INTERNET FOR ANSWERS AND FOUND THIS SITE. MY SISTER PASSED AWAY 6 MONTHS AGO (HER FUNERAL WAS ON MY 50th BD). SHE HAD LUPUS BUT WOULD NOT LET ME IN. SHE NEVER LET ME KNOW HOW SHE WAS AND I NEVER REALIZED THE EXTENT OF IT. SHE HAD ME THINKING SHE WAS DOING QUITE WELL. I'M SO FULL OF EMOTION NOW I DON'T KNOW WHICH WAY TO TURN. I DON'T WANT MY SONS OR HUSBAND TO KNOW HOW CONFUSED AND FRIGHTENED I AM. I REGRET THE FACT THAT I DIDN'T KNOW OR INVESTIGATE THIS WHEN MY SISTER WAS DIAGNOSED, SHE WAS A NURSE AND I TOOK HER WORD. I HAVE GUILT AND FRUSTRATION BECAUSE SHE DIDN'T LET ME IN. I DON'T THINK SHE HAD ANY THING LIKE THIS BOARD BECAUSE SHE REFUSED TO USE THE INTERNET. ITS BEEN INTERESTING READING ABOUT EVERYONE AND READING YOURS TELLS ME I CAN TALK TO SOMEONE MY AGE.
09-12-2005, 04:23 AM
Yes, you do have people here that understand what you are going through. I think the beginning is the scariest as you really don't know what is going on.
One of the things that has helped me the most is having an awesome wife who understands and supports me. It has really gotten me through some tough times. Can you talk to your husband? Will he be there to support you?
09-13-2005, 12:25 PM
Do not judge yourself too harshly about not knowing about your sister's illness. As you may have guessed, this board was set up in memory of my daughter who lost her battle with Lupus in 1999. Like you, one of the things that I regret is that fact that we could not find a place like this board when she and I were searching the internet for answers, support and understanding. I, too, often wish that I knew then what I know now and perhaps I could have been more helpful to her.
But, I would venture to say that YOU DID give your sister what she needed the most: Your love, Your compassion and Your understanding! Rest assured that those things were (and still are) more important to her than information (although that, too is important). What you gave her was what she needed from you - I do not think that she shut you out, what she did was to take from you what she needed and you gave it to her.
Your loss is a great one, you must do what is right for you in the grieving process. Grieve in any way that you need to and in as much time as you need!
We are here should you need more information or should you just need to talk!
I wish you the best!
Peace and Blessings