Lupus Support Group

Hey everyone. It's good to be back on the support site. I just got home from 7 days of hospitalization

The main problem with me is this persistent sore throat!! Over three months of pain and last Saturday the pain level(on a scale of 1-10) was a 17!... I have been told that I most likely have a secondary Sjogren's in addition to the lupus that may be adding to the the throat problems.

I am grateful for all of the testing that I received in the hospital to rule out lots of other "stuff". Most people would never get the tests I got so I do feel blessed. Geez, this Lupus really is complex! I have over 200 pages of reading material that was sent home with me today, so will be hanging out reading all afternoon.

Anyone else have mucous (lack of) related issues associated with Lupus?

Hugs & <3 to you peeps ~ Julie

Sorry you are going through this. I think there are a couple of people here with Sjogren's. Hopefully they will check in soon. It is good you are out of the hospital and hopefully the pain is now a little less.

Alison

Hello Julie, I have recently gone through my medical records and realized that at one of my early appointments my doctor had also mentioned Sjogrens but didn't make a big deal about it. So I didn't really look into it until a few weeks ago but it will cause dry mucous membranes and many issues with your eyes and tear ducts. I also have dry skin and I have to use tons of lotion. I often have a sore throat (only mild). I didn't realize that Sjogrens also can cause joint pain and many of the same symptoms as lupus does. They also use many of the same drugs to treat both diseases. Good luck with your reading it is a lot of information to soak in. Welcome to the forum you will love everyone here. April

Julie,

I'm glad you are back home. I also have Sjogrens and I suffer from painfully dry eyes, mouth and throat. I also have esophagitis, so that adds to my sore throat as well. Luckily, the pain from mine has not gotten as bad as yours, but I am on a lot of lupus meds and pain meds. I hope they can get your throat feeling better.

Take Care,

Amy

Thanks for the replies. Was home for 4-5 hours from the hospital last Sat., spiked a raging fever and went right back to the ER after a call to the previous floor/nurses station... They admitted me AGAIN. I think it has been determined that I have secondary Sjogren's and a couple of other issues going on (Raynaud's, Postherpetic Neuralgia, and now they think possible Fibro). I sure have had my share of Esophageal problems as well and I notice that many people on this board have Esophagitis?....

I didn't get to read the last chunk of paperwork before returning to the hospital and now have more to read ;o I can't believe I went from working out each day and only taking Thyroid meds to all of THIS. I am thanking my lucky stars every day just to be alive and truly am stopping to smell the roses! ~ Jul

Jul, Sorry to hear you are back in the hospital! I sure hope they can get you feeling better and back home. We have many of the same diseases. When did you have shingles? and where were they? I do have esophagitis and think it is from the lupus since my prednisone is super low now. Please keep us posted when you can. I hope that you are feeling better soon.

Take Care,

Amy

I have no idea when I had Shingles. It was such a surprise!! When the labs came back I was like "whaaaaatttt???" (LOL). I never had any classic rash that I remember. I was hoping that this pain in my throat was shingles and would clear up with the shingles meds. I don't need +shingles lab work on top of everything else BUT what the heck, add it to my growing list.... *this is where you all smile at my smart-alecky attitude I hope*

I am so glad to have found this site and people who suffer/encounter many of the same medical issues. At least we can bounce things/ideas etc. off each other and know that we are not alone in in our struggles. I seems like I have some more support groups that i could join on this site now.

I am sorry you are having such a rough time. Hopefully the doctors can get everything under control soon. Take care.

Alison

Jul......It does take a chronic illness sometimes to realize how precious life really is. I sure hope that you get well soon and are back on your feet.

Eva

I am sorry all of this is happening. Sounds like you just need a break from it. I hope you are feeling better soon. April