View Full Version : Aloha from Hawaii

11-02-2006, 05:07 PM
I have Lupus to name a few ( I also have RA, Sjogren's, Raynauds, bronchiectasis, scoliosis, herniated disk, degenerative neck). Just wanted to co-mingle with others who are in the same boat. I have been having many "bad" days recently. Fatigued and falling asleep everywhere! But have difficult time stayinng asleep, especially at night. Get up often in pain. Had sores in my mouth for couple weeks now. Was wondering if that was common with having SLE? I am currently taking Plaquenil, prednisone, actonel, prilosec, proventil, and vicodin. What kind of medicine are some of you taking for pain?

11-03-2006, 01:12 AM
wow geeze you must be a fun patient
mouth sores are very common--i thought i just had canker sores until my doctor mentioned that mouth sores are a actually criteria for diagnosing lupus
i have gone on sleeping meds to help with the not sleeping at night, but the fatigue persists, so no advice as far as that goes
as far as meds--do take a NSAID? im on one called mobic as well as a narcotic called ultracet (similar to your vicoden)

11-03-2006, 08:36 AM
Hello and Welcome Atohs from Hawaii :lol:
Yes, as ejrifkin has exlpained, mouth sores are quite common in Lupus. In fact, one of the most common features of lupus is mouth ulcers. This often occurs during flares along with increased joint pains, rashes and hair loss. Mouth ulcers are painful and uncomfortable, but there are simple treatments available such as antiseptic mouthwashes and sometimes steroid lozenges or paste. Occasionally the nose can also be affected in the same way and vaseline cream or steroid paste or nasal spray can be used if necessary. In the vast majority of people these simple measures, and controlling of disease flares with low dose steroids and/or tablets such as hydroxychloroquine usually does the job!
Almost all of us have Lupus with overlap diseases (such as RA, Sjorgen's, etc.) and each of these illnesses have symptoms which include fatigue and non-restful sleep!! Many of us are taking medications to help us sleep - so you see - you are not alone :lol:
We are glad that you've joined us and I know that you will always find someone here who will happy to answer your questions, give you information, provide you with comfort and understanding and to let you know that you are not alone!!

11-03-2006, 08:57 AM

Hi Atohs,
You sound like you have a lot of the same problems I have. I have SLE and Sjogrens. However, I don't have a pos RA factor. I also have Degenrative Disc Disease and a herniated disc. I found that Zilactin B helps on the mouth ulcers. The mouth ulcers are unfortunately part of the illness. I get them quite frequently. I am 47 years old and have had SLE most of my life.

Welcome to the forum. There are a lot of nice folks here.



11-03-2006, 09:34 AM
Thank you so much for your kind reply. You do make me feel that I am not alone. Here at home, I feel like I am alone. Everyone's either too busy to not care or too scared to care. I don't know which it is, but I feel terribly alone. I have tried ultracet, humira, enbrel, mobic, neurontin, amitryptiline, fentanyl, and others. Many wear off in awhile. Doc says body gets used to it and stops working so he gets me off to try something else. Who do most of you see for care? A rheumatologist, internist, or someone else? I am currently under a rheumatologist's care.
Nice to be here in a warm forum.
Thank you very much for the warm and kind welcome.

11-03-2006, 02:08 PM
welcome :lol: