Hi, new to the site from the uk I saw a rhummy 1 week ago ,went with dry eyes, mouth, nose joint pain, tiredness, rash like hives that come up on my arms in the sun, she did physical examination asked lots of questions said I had joint hypermobility then told me in the doctors letter when a blood test was done in march my kidneys had showed up which a high pointer ,said she wasn?t sure what as going on but would send me for blood tests, also sent me for chest, hand, feet x-rays and would send for me in 6-8 weeks when all my results were back(seems a long time to me)then gave me a letter for my dr, saying I was not to take dicloflex.
Got a appointment the next day with the dr , he had already heard from the rummy and mentioned that the rhummy thought I had sjogrens syndrone I mentioned why he had not told me that my kidneys had showed up something in march, he replied they weren?t showing creatinine so nothing to worry about, but would send me for a ct scan to put my mind at rest
Ive read since about ss and am a bit scared in case this is what is wrong with me ,im 49 yrs old
Thanks for listening to me ,a great site
Ginger_pops
welcome ginger-pops
I hope you get your answers soon.I think not knowing is the worse. The doctors can start to help you once they know what the problem is.
Hi ginger-pops,
I'm sorry to see that you've been feeling ill lately, but I'm so glad that you've found us. Do look around the board as I'm sure that you'll find a lot of answers to some of your questions.
I'm also very happy to see that you've got a sharp rheumy there, how lucky you are (keep that one! :D).
Again, welcome, and I hope to chat with you soon.
Take care -
Patze
Hi Ginger_pops
Welcome from me too, also in the UK. I'm also 49 and until I was diagnosed with SjS last year I had never heard of it. I know it's hard not to be frightened when you're facing something new, and I hope that meeting people here will help you come to terms with the diagnosis. As people here say, SjS is interminable but not terminal although it is 'the gift that keeps on giving'. You'll probably find that lots of symptoms you thought were just you are in fact due to SjS.
Your diagnosis sounds pretty fast - some people here wait years before being diagnosed and it's hard to be in limboland. Your rheumy sounds thorough, and waiting 6-8 weeks for the follow-up appointment is quite standard because they need time to get the results from all the tests.
Did either your rheumy or your GP talk about possible treatments? There are some really good meds for SjS, and most of us start with Plaquenil. If you're given that come here and tell us and you'll get great advice about how to taper the dose so that you reduce the side effects, taking yogurt with the tablets etc. Some people also start on steroids, or have them for flares, so there's lots of good advice about them too.
Where do you live in the UK? There are quite a lot of Sjoggies here from all parts of the UK and we meet in the chat room on Wednesday nights at 7 p.m. Do join us!
Take care - Chickpea
Hi Ginger-pops :)
Welcome to Sjogren's world. :)
I'm a sjoggie in the UK and also go to the Wednesday chats, like Chickpea mentioned.
SjS is a very individual disease and although there can be lots of symptoms, not everybody gets all of them. I also think that 4 to 6 weeks is about par for the course as far as rheumies go. It does feel like a long time to wait but at least you're 'in the system'.
You say that you've been told not to take Dicloflex - have you been told what you can take for pain? I'm not allowed any NSAIDs but I am allowed paracetamol and Tramadol which I take daily.
I thought that kidney involvement was pretty rare with SjS - more common with lupus - but I'm not medical and so am probably wrong.
I find this forum really helpful. Hope you do too.
Take care - Scottie :)
Hi and thanks for making me so welcome
Chickpea- no no one mentioned any kind of treatment, but got the idea from dr that he thought rhummy had mentioned sjs already to me which she hadn?t just to him
Scottie- i also take parecetamols and tramadol for pain
I work nights but every other Wednesday im off so yes will join you
Ginger_pops
Hi Ginger_Pops and welcome to Sjogrens World!
I'm glad that you found us...look around and read all you can and want to in order to gain some more information and get questions answered before you go back to the doctor. It sounds like you have found a good and thorough rheumy.....I know waiting for test results can be nerve wracking though...but your appt. will come and I hope you get some answers and can possibly start some type of treatment for your symptoms.
Keep us posted on how you are doing and ask any questions that come up...someone will always be around to help out!