Hi, I have lurked for awhile then I took the plunge and signed up. I just wanted to introduce myself and say Hello. I am 32 years old and a proud mom to 3. I was diagnosed via a lip biospy in 2008. In addtion to the sjogrens I have flares of vascultus, and thyroid issues. I will post more later, but I see what a wonderful group you are and I feel like I am in the right place. I have had a hard time accepting my new life and I just started getting disabilty, which has made me think I need support of others who have the same health issues that I have.
Proudmom
Hi Proudmom . . . . welcome to the fold. (I'm a proud mom too! ;D) It's always nice when people who have been "lurking" decide to stay and join. We're happy you want to be a part of our family.
This forum is a place where you will meet people from around the world who are experiencing life with Sjogren's too. As you have seen, if you voice a concern there are members who share similar symptoms, challenges and triumphs. I hope you find this forum to be the support you are looking for.
Bucky
Hi Proudmom
It's good to meet you! I'm also a proud mother of three children, although my children are now 27, 25 and 21 so not really 'children' any more. Where do you live? I'm in Brighton, UK - we're quite an international lot here in SjS World.
It's certainly a journey to acceptance of the new life that SjS brings, and you'll see that we're all at a different point in our travels. Sometimes we reach an even level and sometimes we have wobbles, and it's wonderful to have other people here who understand when we go through the tough times. For me leaving work and accepting I won't work again, going on disability, and having adaptations done in the house have all been stages on this journey. I'm sure I'll have others but for now I'm fine where I am.
Post lots and let us know how you are feeling, what meds you're on etc etc.
Thinking of you - Chickpea
Thanks for the welcome bucky and chickpea. I live in ohio and have my whole life. Right now I am on predisone, plaqunueil for sjogrens. I recently tried mtx but I had a horrible time with mouth sores so my rheumy stopped it. I have been on other meds I did 4 rounds of cytoxan last fall and winter and I was also on imuran for 6 months. Thanks so much for the warm welcome.
Proudmom
Hi Proudmom!
I just want to welcome you as well to Sjogrens World! I'm glad that you found us and decided to join in. Read all that you want to here and ask any questions that come up. Everyone here is very supportive and friendly...so come here often and join in whenever you feel comfortable. This is a safe and friendly place to be!!
Hi Proudmom,
Let me also welcome you to the SJS World! Please look around the board as there are just tons of topics that you might also find interesting.
I'm glad to see that you've taken the plunge and decided to join us! Yeah, this is one of the friendliest boards that I've ever run across too! I often learn more here than from the doctors too! ;) :D
Again, welcome and I hope to chat with you soon.
Take care -
Patze
Hi Proudmom :)
Welcome to Sjogrensworld. I think the dx comes as a shock to everyone and takes a while to get used to. Get used to it we do though - and to many its a relief, in a way, to actually get a 'label' for how they have been feeling.
I'm sure you'll find support in here. It's a supportive friendly forum.
Take care - Scottie :)
Hi Proudmom
Thanks for your reply. Sorry to hear that you haven't got on with Methotrexate. I'm also on Plaquenil and Prednisolone, as lots of us here are. Do you take pain meds too?
Could you tell me about your experience with Cytoxan? I'm due to start it soon after a year on CellCept which didn't help much - well, it maybe a little but not as much as the neuro/rheumy combination had hoped. I'm currently having iron infusions to tackle long term anaemia and once that's done they'll let me start Cytoxan. Apparently you have to be in the best of health before they'll give it to you! Did you have lots of tests prior to starting it? Did you get some remission time after the four treatments?
Ohio seems to be well represented here on SjS World! Maybe you could all arrange a meeting sometime?
Thinking of you - Chickpea
Thanks again for all the warm welcomes.
To Chickpea, yes I had some tests before the cytoxan, a TB test some blood work and a chest xray. I did get some long term relief from my burning pain and while I was on it my pain in my legs was better this is just me looking back. To be honest I was looking for a fix all a magic med to change me back to my old me and that didn't happen. I now have accepted that this may be as good as it gets I hope that makes sense, don't get me wrong I am still holding out hope. I would like to share with you some things that helped me thru my infusions so maybe these can help you. First of all zofran saved my belly the cytoxan made me rather sick to my belly, If I would take the zofran and just give in and go to bed then I didn't have to spend hours vomitting. I was given mesna to help protect my bladder durning the infusion and after to take home, this upset my belly it was a liquid med that center gave me to take home. At one point I refused it because well it tastes horrible and I am no baby to meds this stuff was just bad, so it helped me to stay at infusion center and have my last dose of it there thru my iv. I also lost alot of my hair it came out in clumps, I had long thin hair when I started and after the second treatment about 3 weeks after I gave in and got my hair cut short. I hope this helped you. If you have any questions about cytoxan and how it was for me ask me anytime. When I had my infusions I would search the internet for hours looking for answers. Good luck to you chickpea.
Thanks so much, Proudmom. I don't want to hijack this thread with discussions about chemo so maybe I'll PM you for more information as soon as I know my start date.
When I had my iron infusion on Tuesday the haematology nurse gave me some information about the med to protect the bladder, but she didn't say how bad it tasted! This is just the sort of thing that's really helpful to know. I'll make sure they put all the horrible tasting stuff through my IV. Did you get very bruised from the IV? I've had three of the eight iron infusions so far and my hands/wrists are badly bruised. Maybe it's worse because of the Prednisolone I'm taking?
As you say, I'm not expecting miracles but I would like a bit of remission time, maybe the chance to walk again even if only a short distance. You're right about accepting that this may be as good as it gets and it's important to acknowledge that. I think I'm going to risk the side effects of Cytoxan for the chance of some relief from pain and mobility issues.
Take care - Chickpea