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Delker

New--seeking Solutions

9 posts in this topic

Hi all:

 

I'm new to this site. After preganancy about 4 years ago, I started getting accelerating symptoms of Scleroderma (before that I had reynaud's and puffy hands, but few other symptoms).

 

Now, fingertips and cuticles have so many sores, I can barely feel anything, my lung capacity has started to diminish and I get bouts of acid reflux almost everyday---in addition to general knee stiffness and puffiness and weakness.

 

I go to my rheumatologist and he confirms that "yup, it's progressing". He suggested that I consider being part of the clinical trial for Gleevac, but I didn't qualify based on a better than required skin score. I am about to go see a pulimanologist.

 

What could/should I be doing to at least minimize symptoms.

 

Thanks

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Hello, dre, and welcome to the ISN Sclero Forums. You have come to the right place for information and support. I believe there are a couple of people who have mentioned the Gleevac trial.

 

Please let us know how your visit to the pulmonologist goes. Have you seen a scleroderma specialist or just a regular rheumatologist?

 

One of the best things you can do in the winter season is to keep your Raynaud's at bay. Here is a link on Raynaud's rewarming tips from our Medical web pages. Hopefully others will join in to give you further advice on your questions. Also feel free to poke around, read and comment wherever you can.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Dre,
Hi. I'm glad you found us. This is a great place to learn; share ideas, symptoms and worries.
I know it can be overwhelming when you body is progressing and doing things and you don't know what to do to shop it. Finding a scleroderma specialist, like jefa said is a great idea. Also check out other clinical trials I'm looking to be apart of one at Northwestern Hospital in Chicago.

You should ask about a vasolidator or nitro bid cream for your fingers. These meds will help open the vessels in your fingers increasing circulation and lessening ulcers. Revatio is also good for getting rid of ulcers.

For heartburn I use nexium, but there are some good OTC pills too. Try eating less fried foods, chocolate, caffeine; not eating 3 hours before you sleep and elevating your head when you sleep. Some find sleeping sitting up helps.

Seeing a pulmonologist is a very good idea. They may suggest tests like a chest x-ray, CT scan, a pulmonary function test (pft) and labs. I get labs done 2x/month but I'm pretty poorly. Hopefully you'll be less often.

I think the most important things are to get educated, take care of yourself and listen to your body's needs. It might be a good idea to keep your own set of records. It makes it a lot easier communicating between doctors if you get copies of all your tests.


Take care,
peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Dre, Welcome to the Forums. I am sorry to hear that your scleroderma symptoms are progressing right now. I am sure that many here will be willing to supply you with some answers along with personal experiences. The ISN (link to the left) contains valuable reading and links to scleroderma related issues.

 

It sounds like you are on the right track with a team of knowledgable doctors.


*WestCoast*

 

********

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Hi DRE - At a recent rheumatologist appt the dr said that Univ. of Pittsburgh has the "best" care available and that I should go there because no one in my area (Georgia) is really qualified to help stem the disease and introduce meds to lessen the symptoms. He also said the Mayo Clinic in Minnesota (not Daytona, FL according to him) would be a good choice then Univ. of Michigan. If you are able & insurance alllows you really should see a specialist in the field of sclero who won't be guessing with your treatment. The facilities have everything in one place and he said it wouldn't take but a couple of days. While in a flare you have a greater chance of one of the "in the know" doctors to help you. That's my 2 cents worth! Hope you feel better soon!


Soft hugs your way,

 

Michele

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Hello dre and welcome!

 

I'm so glad you've joined the Sclero Forums and our sclero family. I'm really sorry to hear that you are having progression with the disease. One of the things I can suggest is to really pace yourself. Look at your routine and see if there is anything you can do to reduce stress in order to rest more.

 

Looking forward to knowing you better!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Your doctor's "yup, it's progressing" attitude sounds pathetic. As other's have mentioned, you need to find a scleroderma specialist. You might also find a top facility for treating pulmonary symptoms. Recently there have been great new treatments for Secondary Pulmonary Hypertension. A good facility will do a right heart catheterization for diagnoses, and possibly put you on one of the new drugs such as Tracleer (Bosentan).

 

As mentioned above, there are many treatments for Raynauds. I had a horrible bout with it after a stem cell transplant for lymphoma. Adalat (a calcium channel blocker) and especially Mini-press (Prazosin) helped a lot. I've never had much luck with nitro cream, but others have. Some get relief from Viagra or Cialis. Different drugs work for different people, so you should be able to get some relief.

 

Craig

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Hi Dre,

You definately need a scleroderma specialist that can help you, not just sit by and say it's progressing! There are many trials out there and there are always new one's popping up. If you can, get to a true specialist and look at the links that were previously provided for trials and other tips!

 

Don't give up, you'll find someone to help!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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I'm in complete agreement with everyone who suggested you get in touch with a Sclero Specialist. Shame on the rheumatologist for responding to you as he did... Unfortunately, these people exist... we can only move on, removing from our physician lineup.

 

peanut gave excellent suggestions and I hope that you are able to get the symptoms you are experiencing... under control.

 

Keep us posted on how you are doing?

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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