I saw my rheumy today and he says I do have SS and as far as the tests that have been run so far tell, it is primary. So I guess I am officially part of the SS clan, huh? It is really weird to feel relieved to an extent. I finally have a name for my condition and no one can say I am faking. 3 years it took to get someone to listen to me and diagnose me. But I know I am blessed in the fact some don't get diagnosed for 7+ years.
About the worry regarding my liver disease, he said i needed to take the plaquenil and he would be watchful of any adverse affects. That is all I wanted, was for him to show he is paying attention. So I started the meds today. Not really sure what a malaria drug has to do with anything but, hey I will try.
I just want to thank you all for welcoming me and ask that you be patient with me since I know almost nothing about the disease I have.
Hi Jon, welcome to the club. LOL. I actually cried (well, what little tearing we have but the emotion was there) when I got the news. I was scared and very relieved at the same time. I was one of the 10+ yrs people and it was a huge relief to have someone finally say "This is it".
I'm glad you have a doc that it paying attention. It makes a big difference. I know Plaquenil is a disease modifier but I don't think they know why it works for us exactly. They kind of found out by accident that it does during the war. I'm just grateful something without a lot of side effects does work.
We are all here for each other because, even though you have a name for it, sometimes other Sjoggies are the only ones who really understand it.
sorry it is hapining to us but at least we finally know what it is that were not crazy but still the drs do not seem to relize how many things are going in us. I hope you feel better soon.
I'm glad you finally have an answer! I feel really bad that you had to suffer with this for so long! 3 years?! Yikes. I went through this for a year and it has been absolute hell. So many doctors just kept trying to pass it off as "anxiety" and I have had to deal with so many cold and unsympathetic doctors and nurses. Let me tell you, some nurses in hospitals can be real b*****s. I could tell stories about times they were literally laughing about me and making jokes when they thought I couldn't hear them. They treated me like a psychiatric case instead of someone who was actually sick and needed help. Something has to change. There are WAY too many stories from people who are treated like this. They suffer for months and years, needlessly, just because doctors don't take their symptoms seriously. I really think we need stricter laws which force doctors and nurses to listen to patients and treat them better.
I can definitely sympathize with the mixed emotions you must be feeling right now. Relief because FINALLY you have a real diagnosis and a name for this horrible thing that is making you feel miserable. And I'm sure you feel vindicated too, because no one can say it was "all in your head" anymore. But probably also nervous because you don't know what's going to happen now. At least, this is how I felt. I'm barely a week into my diagnosis. I'm taking Plaquenil too now. But before I was actually diagnosed, I had read a lot about it and it seemed to be a big help for people with Sjogren's Disease and Lupus. In fact, in the reviews I had read, it had an 85% positive rating. A lot of people said it helped with fatigue and joint pain, and it apparently helps to keep organ involvement under control or even prevent organ involvement.
Try to be hopeful that now you finally have a diagnosis and you're getting treatment. You've climbed the first few steps. That's how I'm looking at it. For all this time, I just kept getting worse and worse, and the doctors were wasting time. I switched to a better doctor, I got a diagnosis and now I'm finally getting medicine. I'm hopeful that I'll slowly start to get better. I think you will too. We just have to be patient and try to take it one day at a time. At least now there is light at the end of the tunnel. It might be a little ways ahead still, but it is there.
It is so frustrating not to know and a relief to finally find out what it wrong even though you have SS. This is a great site to stay connected with others who feel your pain and can relate to you and help you on your way. Welcome and get feeling well.
From what I am reading, Plaquenil is a sulfa drug. I am allergic to them. Is there any alternative to it?
To the Poet, no, not in the malaria drug family. It did not work for me so the next alternatives are steroids and methotrexate. Which also didn’t work. Then you are given a nice pat on the head and are told sorry, learn to live with it.
I was relive to get the diagnose when I finally got it. I am glad you found out group I feel that we are all contenuly learning and educating our self. I am always learning something from this group. And they are very patient which is good because I have not be diagnose that long.