Re: Caro/scleroderma

[Guest guest]

Caro, what you're describing on your fingers could be Raynauds,

another lovely AI issue. It usually goes right along with lupus and

scleroderma. It's very important to keep your hands warm, especially

in the winter. The tips can actually develop gangrene and that is NOT

a good thing. I've lost small bits off the tips of a few fingers from

having them bust open and then not heal. Also beware of extreme hot

water.

I've been dealing with the raynauds for a great many years too, and

you should see the lovely colors my hands can turn...I was once asked

if I had dipped my hands in ink, they were so dark blue/purple.

It's a circulation issue, so always keep your hands and feet warm.

And yes, scleroderma can attack any organ in your body. Your skin is

of course your largest organ and the one most associated with

scleroderma, but it can cause serious problems with kidneys, lungs,

heart, etc.

My Mom died from complications of scleroderma after having mitral

valve repair surgery. The scleroderma had attacked her heart. We

didn't have a clue that she had scleroderma until they found the heart

problem.

So, best advice is to go see the Rheumy regularly, eat healthy, drink

lots of water, and get proper rest. Keep your hands and feet warm, and

maybe have a circulation test done. I'm told I have " incompetent "

veins...and I said to the lady who did the test " that's not the only

incompetent thing about me " ! LOL! I also blame my memory loss and

anything that goes wrong in my day on " brain fog " caused by the

lupus/scleroderma. Yes, it's an actual term they use for that foggy

feeling that can come over you. Happens to me quite frequently.

The good news is that the older you get with these AI diseases the

better your chance of fewer flares and a longer life.

I'm here if you need me!

Hugs!

Babs in Texas

> > > >

> > > > Hi All,

> > > >

> > > > Sorry I haven't posted in a few days again, but I am back from

> > > > Birmingham. Still don't know anything definite other than the

> > > > diagnosis I already have of UIP. First when I got there, they did

> > > > ABGs (OMG!! It hurt so bad!! I had it done once before and I

didn't

> > > > even feel it, but not this time. She had to pry (her words)). Then

> > > > I had to do PFTs, which showed 57% lung function, compared to the

> > 68%

> > > > I had in December. Next, I visited with the doc. Actually there

> > > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was

> > > > the Assistant Professor). His name was Dr. , very nice guy.

> > > > He took down all my history and said he thinks I may have

pulmonary

> > > > hypertension (which would explain the rapid heart rate). He

did exam

> > > > and then goes to discuss with Dr. de Andrade, who comes back

in and

> > > > again, very nice guy. He explains that it is very rare in a woman

> > > > under the age of 50 to have pulmonary fibrosis and since I

have been

> > > > sick for 6 years already, even more rare, not unheard of, just

rare.

> > > > So I am a model case!! Anyhoo, due to this fact that I AM so rare,

> > > > he thinks there is an underlying disease causing the PF, so I get

> > > > blood work (10 tubes of blood) for various autoimmune diseases. He

> > > > is leaning towards Sjogren's or scleroderma (mostly

scleroderma for

> > > > which also there is no cure). Dr.. did a heart exam and

> looked

> > > > at the veins in my neck before talking to Dr. de Andrade who

decided

> > > > I needed another chest CT (my last one was in February 2008), so I

> > > > had that done (without contrast thank God!!) and also that I

needed

> > > > an ultrasound of my heart to check for blood flow to the heart and

> > > > for any blockages to the valves. All in all, he said if I

don't hear

> > > > from them in a week, to call them to get the results. Other than

> > > > that, he didn't change any of my medications, except to

decrease the

> > > > prednisone even further to 10 mg a day. He said he wants me to get

> > > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I

> > > > told him I had gained 20 pounds since being on them starting in

> > > > January, and told him I have moon faces and he agreed.. He

said they

> > > > want me lean and healthy and I did not need to be on that for

sure.

> > > > Any weight gain is out of the question, he said. He told me I have

> > > > to keep moving. He told me to eat lean proteins, fruits, and

veggies

> > > > and no snacks. He PROMISED me the weight will come off. He said he

> > > > expects me to lose 10 pounds rather quickly. I sure hope he is

> > > > right, because I am miserable and I told him so, too!! He said

there

> > > > are no real medications to treat PF, and I knew that, but he said

> > > > when I come back, I can decide either to go with the Imuran and N-

> > > > Acetyl-Cysteine (NAC), which is all the best they know at this

point

> > > > to give patients with PF, or I can try an experimental drug

> > (clinical

> > > > trial), which I don't know what the side effects will be, but I am

> > > > kinda leaning towards doing anyway, because I feel like even if it

> > > > doesn't help me, it may help some other person with this stupid

> > > > disease on down the road and it would be worth it. As for lung

> > > > transplant, I don't yet qualify because my sats are not low enough

> > > > and I am not on oxygen yet. Note that I said " YET. " He said

the key

> > > > to prolonging oxygen use as long as possible is to stay as active

> > and

> > > > healthy as possible and that is what I am going to try and do.

> > > > (my grandson) is here with me this summer, and he really

> > > > helps to keep me motivated and I think I need that right now. Also

> > > > the docs were really glad to know that I am in pulmonary rehab and

> > > > that I am going to stay in the Wellness Program when I get

done with

> > > > the rehab program. All in all, even though I did get some not so

> > > > good news, I feel like I got some good news, also, so until next

> > week

> > > > or whenever I get the results, I am just trying to keep my self in

> > > > exercise and health mode the best I can and keep going.

> > > >

> > > > So that was my Birmingham visit. My parents went with me and we

> > > > really had a nice trip. I don't know what I would do without them.

> > > > They have been my rock through all of this. Thank God for my Mama

> > > > and Daddy!!

> > > >

> > > > I hope you all have a great week and now that I am back I hope

to be

> > > > able to keep up with posts better and write more than I have

been. I

> > > > do reads all the posts and think of each and every one of you

> > > > everyday. You are my air family and you are my rock, as well.

Don't

> > > > know what I would do without you guys, either!! I love you all!!

> > > >

> > > > Have a great day!!

> > > >

> > > > Caro

> > > >

> > >

> >

>

[Guest guest]

Caro, be sure and put a triple antibiotic ointment over the fingers

when they open. Also, soak them in epsom salts in very warm water (not

hot, it will hurt) and then let them air for a while before applying

the antibiotic. This helped mine tremendously. Oh yes, it stings at

first but really feels good afterwards.

They treat scleroderma with immunosuppressants also. Prednisone,

plaquenil, etc. Same old, same old.

I use Aleve for my arthritis, and also take darvocet for pain. Those

are the only western meds I use. I take fish oil, serrapeptase and

probiotics. I'm going to see a naturopath/MD soon. Chaz has been

seeing him and is very pleased with his results. I know my hormones

are wacky from the premature menopause and this Doc is well-known for

his alternative therapies.

I think the clinical trials are your best bet. I've also taken all the

standards, i.e. prednisone, imuran and cytoxan. They did nothing to

help me and caused so many more problems. I'm not an advocate of those

drugs though there are some people who do well or ok with them.

I'll be watching your posts for test results and what you decide on

the trials. I'm wishing you lots of luck and saying big prayers!

Oh, and you're NOT an idiot! We can't know everything about

everything....I only know a little something about some things....

Hugs at ya!

Babs in Texas

> > > > >

> > > > > Hi All,

> > > > >

> > > > > Sorry I haven't posted in a few days again, but I am back from

> > > > > Birmingham. Still don't know anything definite other than the

> > > > > diagnosis I already have of UIP. First when I got there,

they did

> > > > > ABGs (OMG!! It hurt so bad!! I had it done once before and I

> didn't

> > > > > even feel it, but not this time. She had to pry (her

words)). Then

> > > > > I had to do PFTs, which showed 57% lung function, compared

to the

> > > 68%

> > > > > I had in December. Next, I visited with the doc. Actually there

> > > > > were 2 docs. The first one was a fellow of Dr. de Andrade

(who was

> > > > > the Assistant Professor). His name was Dr. , very nice

guy.

> > > > > He took down all my history and said he thinks I may have

> pulmonary

> > > > > hypertension (which would explain the rapid heart rate). He

> did exam

> > > > > and then goes to discuss with Dr. de Andrade, who comes back

> in and

> > > > > again, very nice guy. He explains that it is very rare in a

woman

> > > > > under the age of 50 to have pulmonary fibrosis and since I

> have been

> > > > > sick for 6 years already, even more rare, not unheard of, just

> rare.

> > > > > So I am a model case!! Anyhoo, due to this fact that I AM so

rare,

> > > > > he thinks there is an underlying disease causing the PF, so

I get

> > > > > blood work (10 tubes of blood) for various autoimmune

diseases. He

> > > > > is leaning towards Sjogren's or scleroderma (mostly

> scleroderma for

> > > > > which also there is no cure). Dr.. did a heart exam and

> > looked

> > > > > at the veins in my neck before talking to Dr. de Andrade who

> decided

> > > > > I needed another chest CT (my last one was in February

2008), so I

> > > > > had that done (without contrast thank God!!) and also that I

> needed

> > > > > an ultrasound of my heart to check for blood flow to the

heart and

> > > > > for any blockages to the valves. All in all, he said if I

> don't hear

> > > > > from them in a week, to call them to get the results. Other than

> > > > > that, he didn't change any of my medications, except to

> decrease the

> > > > > prednisone even further to 10 mg a day. He said he wants me

to get

> > > > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I

> > > > > told him I had gained 20 pounds since being on them starting in

> > > > > January, and told him I have moon faces and he agreed.. He

> said they

> > > > > want me lean and healthy and I did not need to be on that for

> sure.

> > > > > Any weight gain is out of the question, he said. He told me

I have

> > > > > to keep moving. He told me to eat lean proteins, fruits, and

> veggies

> > > > > and no snacks. He PROMISED me the weight will come off. He

said he

> > > > > expects me to lose 10 pounds rather quickly. I sure hope he is

> > > > > right, because I am miserable and I told him so, too!! He said

> there

> > > > > are no real medications to treat PF, and I knew that, but he

said

> > > > > when I come back, I can decide either to go with the Imuran

and N-

> > > > > Acetyl-Cysteine (NAC), which is all the best they know at this

> point

> > > > > to give patients with PF, or I can try an experimental drug

> > > (clinical

> > > > > trial), which I don't know what the side effects will be,

but I am

> > > > > kinda leaning towards doing anyway, because I feel like even

if it

> > > > > doesn't help me, it may help some other person with this stupid

> > > > > disease on down the road and it would be worth it. As for lung

> > > > > transplant, I don't yet qualify because my sats are not low

enough

> > > > > and I am not on oxygen yet. Note that I said " YET. " He said

> the key

> > > > > to prolonging oxygen use as long as possible is to stay as

active

> > > and

> > > > > healthy as possible and that is what I am going to try and do.

> > > > > (my grandson) is here with me this summer, and he really

> > > > > helps to keep me motivated and I think I need that right

now. Also

> > > > > the docs were really glad to know that I am in pulmonary

rehab and

> > > > > that I am going to stay in the Wellness Program when I get

> done with

> > > > > the rehab program. All in all, even though I did get some not so

> > > > > good news, I feel like I got some good news, also, so until next

> > > week

> > > > > or whenever I get the results, I am just trying to keep my

self in

> > > > > exercise and health mode the best I can and keep going.

> > > > >

> > > > > So that was my Birmingham visit. My parents went with me and we

> > > > > really had a nice trip. I don't know what I would do without

them.

> > > > > They have been my rock through all of this. Thank God for my

Mama

> > > > > and Daddy!!

> > > > >

> > > > > I hope you all have a great week and now that I am back I hope

> to be

> > > > > able to keep up with posts better and write more than I have

> been. I

> > > > > do reads all the posts and think of each and every one of you

> > > > > everyday. You are my air family and you are my rock, as well.

> Don't

> > > > > know what I would do without you guys, either!! I love you all!!

> > > > >

> > > > > Have a great day!!

> > > > >

> > > > > Caro

> > > > >

> > > >

> > >

> >

>