[iksyfaye]

Hi all,
New here, been "lurking" for a while. Just wanted to say hello, and thanks for the info I have been finding...In the last 2 weeks I have been formally diagnosed with SLE with secondary Sjogren's and the Rheumy is also checking for Renal Tubular Acidosis (RTA)...He started me on Plaquenil, 200mg 2x/day. I have been taking 1 a day so far, as I am a little worried about all of it...overwhelmed would be more like it..
I was diagnosed with Interstitial Cystitis (IC) in 2003, it is a chronic bladder disease, where basically the bladder lining is defective, and I get ulcer/bleeding areas on it, my bladder is small, and lots of the time it feels like a chronic UTI, although there is no infection. I do have burning, pain, frequency, etc...unsure of the cause, and no cure at this time...although some do think it may also be auto-immune. The Dr.'s are not sure the IC is related to the Lupus and Sjogrens, but it seems like it could all be related??... I also have had 15+ kidney stones over the last 15 or so yrs...hmm...it sounds like I may be "falling apart"...lol...I sometimes have to laugh to not cry...Thanks for listening,
I

 

[keebler]

Hi Iksfaye,

Welcome to the lupus site.:welcome:
It is nice to meet you. You are right there is lots of update information here on the site.

It is a roller coaster ride of emotions when we get diagnosed.
There is a lot of information here. To me knowledge is power.You can go to your doctors with that knowledge and understand what the doctor is saying. Don't worry though I have been diagnosed since Nov. 04 and I am still learning something new everyday about lupus.

Take care,
Lyn

 

[Katharine]

Hello and welcome

I'm sorry to hear that you have been so poorly.

Getting a diagnosis is not easy. One the one hand we might be relieved to finally have an answer for a lot of things, on the other it is indeed rather overwhelming.

There are several members here who have different health issues alongside and linked to their lupus. I'm not sure the IC and RTA are linked to auto-immune diseases as I don't know anything really about either.

Plaquenil is a very good baseline drug for treating lupus. It is very safe (safer than many OTC meds) with few or no side effects. Some people have some digestion or heartburn problems to begin with but they usually go pretty quickly when the body gets used to the med. It takes a relatively long time to work fully (often between 3-6 months) but it is disease modifying and will help reduce the severity and frequency of flares in the longer term.

Everyone here on the boards is familiar with the ups and downs of getting diagnosed, diagnosis and living with lupus and there is a great deal of simple, warm understanding here. Feel free to ask any questions you may have, we'll all do our best to help out if we can.

bye for now,
Katharine

 

[debatat]

Hi

Just wanted to say hi and welcome you to the site. It can be a lot to take in at first, but if you have any questions, there are loads of great, really knowlegeable people on this site. Come and join us in chat sometime. Hope that you feel better soon.

Deb

 

[onetay]

Iksfaye,
Hi and welcome to the site. It seems you have been having problems for awhile and for that I am so sorry. I am glad that you came out of the shades and joined us for information, support, and advice. I hope that you will join us in the chat room from time to time, we have a blast in there. I hope that you are feeling well.

 

[spellbinder]

greetings and salutations

hi iksfaye..:wavesmile:

welcome to our sand box. :rotfl: sounds you have alot of things going on like the rest of us. hopefully your latest diagnosis isn't too overwhelming. as the others have said there is a wealth of information here plus its just a great place to ask questions, vent, cry and tell daily stories and fun times.
hope to hear more from you

take care
hugs and kisses

 

[iksyfaye]

Wow!!
Thanks to all of you for your warm replies, reassurances, and welcomes! Its great to know there is somewhere we can go...just to know that others "get it"...I hope I can be helpful some day as well...I am still just trying to find out what I can...not be too scared to take the Plaquenil...and breathe!! My grandpa had Dermoid Lupus, but he was diagnosed way back in the early 1970's...and he passed away about 8 yrs ago...what I mostly remember about his was what a time he had with the rash, he had it pretty severe on his face and ears...but, he did live to be 79 yrs old...although, the older I get...the younger that seems!:wink2:
I have been a member of the IC network regarding my Interstitial Cystitis for a while, but have not joined in on a chat...I hope to be able to here...surely I can figure it out...
Thanks again,
I

 

[KarolH]

Hi I and welcome to a great place. I am sorry you have not been well but now with a diagnosis, and on the right meds you should notice things eventually calm down a bit.

I am glad you decided to join us. Hope to see you in the chat room sometime. Any questions you need answer just post them......you will love the support and knowledge you will get from a great group of people.:wink2:

 

[ROSJAC]

Hi , I'm fairly new here,also. I was diagnosed with SLE, 11 years ago. I first had Raynauds which led to the SLE finding. I also started with Plaquenial but stopped after 1 year as I made no improvement. I seemed to sweat and urinate the smell of quinine. My son has suffered with kidney stones all his adult life. I have witnessed how painful they are. My heart goes out to all with kidney stone problems. Lupus is itself enough, but most of us deal with many other health issues with it. Also, I find to many, Lupus is just a word. Although they are compassionate they do not fully comprehend what we are dealing with.... This Site is a Godsend.....finally people who understand. Take care, Rose

 

[LolaLola]

Dear Iksyfaye,

A big welcome to you. The Chat Room here is very good. Maybe like me you cannot type very fast. If so don't worry. people here understand that.

Could I just remind you that Lupus treatment has improved significantly over the years. Please do not frighten yourself with anything over five years old at the very most. Also please stick to reputable sites, there is a lot of misinformation out there and it is pointless for you to complicate your lupus journey with scare stories.

I hope you really enjoy being here.
x Lola

 

[iksyfaye]

More thanks to all of you! I agree about being careful about where to "look" for information...I also know we are all different, and our lupus, or whatever we may have, will affect each one of us in a different way...as will the medications we are prescribed.
As Rose said, it is hard for some people to "get it" when they hear about lupus, so I totally agree with her that it is nice to have a place where we can "talk"...and listen...
Take care all,
I