Hi,
I am a newly diagnosed patient. I will be 19 next month, and I just started college, so this is a bit overwhelming right now. I have been dealing with issues since July, and I was officially diagnosed last week. (This is actually a blessing because they initially thought I had leukemia - thankfully they were wrong.) We have looked back over my medical history, and this diagnosis explains many health questions I have had since infancy. I have been looking over the information my doctor gave me, and I noticed that I am rather young to be diagnosed with this disease. (My brother said he always knew I was advanced for my age :)) My doctor has given me information on Plaquenil, so I am wondering what experiences others have had with this medication.
Responses are greatly appreciated.
~Taylor
Hi Taylor . . . welcome to Sjogren's World. There is a lot of information here, feel free to look around at previous posts and you can read about all the different / similar experiences our members all have. Of course, everyone is different - some progress more than others and some have minor symptoms.
We have members in all age groups - both female and male. Our youngest being four yrs. old on up to their 70's, maybe even their 80's.
I'm sure some of the members who are in your age group will pop in to welcome you. :)
Aren't brothers a piece of work??!! LOL
Plaquenil isn't a cure all - but it does help slow down the progression of Sjogren's. Some have problems with the dosage - but by gradually upping it, they can tolerate it. Others start off with no problems at all. It's so individual.
Welcome to the forum . . hope you find lots of useful information here.
Good luck with college. Stress can put you into a "flare", so try to pace yourself and not overdo it.
Bucky
Hi Taylor!
I must say I LOVE your attitude!!!!! I imagine SJS is a relief compared, huh?? One that I am so happy for you, cuz it could be worst! Look Taylor as Bucky said this journey with SJS is very much an individual thang, but check this out, just know that you are not on that road alone, some of are riding in hoopties with may pops (bodies just barely making it), some of us are riding in Cadillacs (comfortable enough not to even notice illness), then there's those in between, riding midgrade (flare enough to know that we are not the best or worst on the road, just comfortable enough to know we gonna make it). Me I'm mid grade, UNTIL I flare, you see me then and will swear I'm a bonfire hooptie! ;D ;D ;D ;D But the thing is we all gonna make it, some just ride in different levels of comfort.
What I'm saying to ya is this Ya gonna be alright! There's meds. to help you and great people here that will too. Just be determined to ride the full distance despite flats, blown engines and running out of gas!
WELCOME!
Bernice
Hi again Taylor!
Glad we got to chat tonight! Sorry I didn't say goodbye... my computer freezes up at the most inopportune times ::)
Welcome to Sjogren's World! I hope you'll find it as big a source of support as I have!
<3 Lauren (wordnerd)
Hi Taylor :)
Welcome to Sjogren's world. You are young for this dx but there are a lot of young'uns in here and the youngest we've had was 4.
Plaquenil is often the first med to be tried. It's a DMARD - (disease-modifying anti-rheumatic drug,) and can help symptoms and slow progression of the disease. Some people have side effects and others have none.
I've been taking Plaquenil for 5 years now withoput any side effects at all.
It's usually best to build up slowly to the recommended dose - like a tablet every other day to begin with. It's best to take it with food too. Some people feel nauseous with it but I never have.
I hope you find the site useful.
Take care - Scottie :)
Poor Taylor , to be affected with this at nineteen is too much!
Stay around tho' as we know what your feeling like, and if it had to be a choice of Leukie or SS, then your much better off here anyway!
You will cope, and at least you have got something going for you. Your young enough to see a cure for this dratted thing, something I can't see for myself..
It will come tho'...they are making great advances in medicine today, as I myself have seen over the years.. so chin up, Dolly x
I want to thank everyone for the kind words and support. I am quickly learning that this is a group I need to be a part of. Today has been a particularly difficult day for battling the fatigue, and the homework level is making it look like today won't end soon. Seeing these comments has helped. I am so lucky to have found these boards.
Thanks everyone.
Hi Taylor,
Let me also welcome you to the SJS World! Please do look around as there are tons of topics that you just might find useful! Oh, and let's not mention the oodles of information here, so much so that I don't bother to ask the rheumy many questions as I learn more here than with him (he's a quiet kind that doesn't say much, don't get me started! ;) :D).
I've been on Plaquenil for better than four years and it's helped the exhaustion level a lot, and the memory a bit too. I'm working on getting the thyroid straightened out, so I hope that helps improve the situation even more.
Hang in there, and I hope to chat with you soon!
Take care -
Patze
Hi Taylor,
and Welcome!! :D I'm sorry to hear of your symptoms but glad you have such a positive attitude. I'm 25 but was diagnosed when I was 14, although just recently actually started having more symptoms. These boards are great to find out info, even more so than some of the doctors I'v seen. Talking to people who really understand the battles we face really helps with the depression or anxiety that can come with being sick. I didn't have good luck with the Plaquenil, hurt my stomach too much, but I also didn't know to start off at lower doses and work your way up. I hope you're doing ok and take care of yourself :) :)
-Heather-
Hi Taylor!
I just want to add my welcome to you as well!
Plaquenil is usually a first line of medicine given to most of us who are diagnosed with sjogrens or some other autoimmune dealie. I have been taking it for almost 5 years?? I think with no bad results or side effects. I take 200 mg two times a day!
Good luck to you in your journey....you will find a lot of information, support and friendship here as everyone understands and can relate to what you are going through in some way or another...we are all individual in how this affects us and how we tolerate medications etc....but we all understand the basic feelings we go though as we learn to accept the diagnosis!
Welcome to the family!