Had my SD Ruemy app't today

[Lindar]

Well, seen my SD rhuemy today, will try to make this short:
-already posted re: new med for Raynaud's
-took me off Plaquenil, been on since 2003-04;he doesn't think it's doing anything for me
-tiredness is not caused by SD (he is 2nd rhuemy to tell me this); he is saying it's because of the Fibromyalgia (boy did it ever hurt when he touched me)
-pain meds; I'm currently taking 5mg Statex Morphine, it's a short acting and boy is it short. Only releives pain for 10-30 minutes, tld me to get gp to write rx for slow release hoping would work better
-skin score today is 18
-PFT, ECG, CT Scan and chest x-rays all came back good. They are going to keep an eye on my lungs though due to some fibrosis previously found and my dclo or whatever it is. Too tired now to remember
-past 4 ecg's showed had blood spurting from aorata and fluid around it as well, 4th test did not change, was stable. BUT it's not reported on this recent one ;D ;D ;D
-staying on Imuran and see how it goes
-need to exercise exercise exercise....to help with pain,stiffness etc as well as my weight
-told me that I have had sd for 6yrs now and it should be levelling out. Said sd does after 5 yrs. Don't know about that cause at 5yrs I got worse.
Well, think that's it. Next app't is July 30th and I hope I get the dr that I like.
Linda

[steve201]

glad your getting some results....for me it was hard hitting and long lasting...it hit just about everything in my body......hit everything except my heart....lungs/intestins..lower and upper...didn't hit the colon thank god!!.....and some parts of the skin was beginning to harden.....

doc's prescribed cytoxan/prednisone..then went to zofran for nausea and diltiazem for blood thinning......deep tissue massage to move the cologen around and physical therapy...needed to build my strength up and get my breathing going...it was hard but that is what helped out ....9 yrs and the only thing I have to complain about is this danged diabete's from the prednisone attcking my pancreas...

Steve

[aajmom]

Hi Linda- certainly sounds lilke your rheumy is covering all bases and that you're in good hands! Sorry you are feeling so tired and painful! I hope you can spend some time taking it easy after that big appt (I know I always need to!!)

It's SOOO interesting to me that all these docs say the sd will level off after 5 years and they also know what an individual disease this is! I certainly hope that yours calms down! I've had sd for 6 years and the past several were really good for me (I've been on minocycline for a year and a half- I believe it's really helped) . Unfortunately, I have recently hit a few "Bumpy spots"- but I believe that with good medical care and lots of tending to the different needs (tests, doctor appts, meds, rest, etc, etc.), I will get thru this.

I hope that you're able to begin some exercise- I, too, find that it helps. Some days I need to take it easier than other days, but I always try to do something even if it's a simple walk.

Good luck and keep us updated!- Adriane

[thefangs]

my personal opinion is the same as you guys as far as SD leveling off. jeff had it for 5 years before it "reared it's ugly head". thank God he's done REALLY well for almost 1 1/2 years again now (but i don't want to speak too loudly, if you know what i mean). laurie

[Lindar]

Thanks Steve, Adrianne and Laurie. By the sounds of it it's not just my docs who are saying "well you've had it for this long, it shoud be getting better/levelling off". Next time I see him I'll be giving him a few choice words. Thinking about symptoms that I already had, I swear that I've had this since my 20's/30's. I'd have to find out from my gp when he started me on water pills. I remember my hands, ankles and feet, mostly hands, use to swell something awefull. So they can't say after 5 yrs it tapers off.

[Cubby]

I am surprised the doctor said the SD does not cause fatigue because that is one of the MAJOR complaints of those of us with diffuse sytemic scleroderma. Because of the pain and the horrible fatigue, I spent most of 2005 in bed!!!!

Regarding the leveling off, I have never met a scleroderma patient who leveled off at 5 years, UNLESS they were already getting better before that--like I did.

No, I'm not contradicting your doctor, just telling you what other patients have told me and what my personal experience was.

[jojo19551]

I was taking 90 mg of Nedipine for my Raynaud's, then I purchased an infrared sauna. This has changed my life. I no longer have joint pain and my Raynaud's is not an issue. My fingers sometimes get a little white but not painful. It took me about 2 weeks to start sweating but once I did my body temperature changed. I am no longer constantly cold; I feel like a normal person. I am happy to say I no longer take any Nifedipine; I simply take grape seed extract twice a day. The sauna cost $400 and it was the best $$ I have ever spent.
JoAnn

[sherion]

Cubby, my doc also says that sclero causes very LITTLE pain and that all my pain and fatigue are caused by the fibromylgia!

Sherion

[Cubby]

I'm sure not gonna argue with a medical doctor, I will just tell you my experience. Then,, if you have a minute, take a look at the thread under MEDS and you will see what I took when I was really bad.

I had HORRIBLE PAIN and HORRIBLE FATIGUE and every RHEUMATOLOGIST I went to told me that the PAIN and the FATIGUE were the most common parts of the Scleroderma. I also went to a pain management doc and she told me the same thing. Remember, tho, I have/(had) rapidly progressing diffuse systemic and I was bleeding from the esophagus and stomach.

My friend, who died, was in horrible, horrible pain and never did find anything to totally take it away.

[christine10]

Hi Linda;
I am in Ontario also but very close to the Quebec border.Where are you?
Re SD...any doc who tells you that SD levels off and that it is not painful is full of B____S____.I was given less than a year to live once I finally got diagnosed.Looking back I see that I had it quite a few years before it became "official" Hurt more every year
Today you would never know that I have SD,full remission after several years on AP and big diet changes.
Lynne Christine

[Lindar]

Hi Lynne,
sending you a pm

[christine10]

AAAAACK Linda,I was trying to change my profile after answering you and somehow screwed things up and changed your.No idea how I did that but I am a real computer dummy

[Lindar]

Lynne, did you fix whatever the problem was?

[Christine]

Hi Linda;
Guess thing are fixed but sure don't know how.Maybe guardian angel Cubby did it???
I can't find your e-mail anywhere,on this message board or regular e-mail.Can you send it to [e-mail]

[Cubby]

LINDAR: Look at your profile and if it is not OK, and if you can't change it, tell me or Steve or jeffn what you need and we will fix it for you.