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Biomarker for Diffuse Scleroderma skin has been discovered!


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My Husband has Scleroderma


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#1 faith

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Posted 30 March 2008 - 04:43 AM

Hello,

My husband was diagnosed with slceroderma 2 month ago. The desease is moving so fast, he feels tired most of the time, he is not sleeping as he used to..he barely sleeps 3-4 hours..

He was accepted for the gleevec trial, and he should start next month.

Last time he went to the Dr. he found out that he has fluid in his left elbow. His Dr asked him to go to the rehumatologist to drain the fluid from his elbow! Is this painful..is it safe!! He has a business trip overseas early next week, and he is afraid to go the rehumatoglist now...he wants to wait until he comes back..he will be away for one week.

All this happened suddenly, we were in FL in October, we had fun with our 2 children ( 5 years and 18 month)..in November, he had cold, and his cough never stopped till today....

He started taking all kind of Vitamins _ fish iol( for joints), B12( for nerve system), Vitamin E( for skin hardening), Kelp(souce of Iodine)...he changed his diet, no bread, no diary products........more fish, less red meet...

It breaks my heart to see him in pain..., and I be thinking of every one in pain and hope there is cure for this desease soon...,

Thank you for listening

#2 Guest_SADIE_*

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Posted 30 March 2008 - 06:06 AM

Faith, I'm so sorry to hear about your husband having some rough times. This is a nasty disease but theres hope. I was diagnosis 18 years ago with diffuse scleroderma and the doctors sure have come a long way with treating the different problems that go in with Scleroderma. I've never heard of fluid in the elbow. That sounds painful. Maybe theres someone else on this board who has had that and will chime in. I wish I could help you more. Your husband is in my thoughts.
Sadie

#3 debonair susie

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Posted 30 March 2008 - 07:10 AM

Hi Faith,

I'm glad you have chosen to post here, as this is a great place to get the information you and your husband will find useful in better understanding what's happening.

The dr advising your husband to see a rhematologist is wise... how the rheumatologist will handle the elbow is something your hubby and the rheumatologist will decide. Getting established witha rheumatologist, should your hubby not already happen to be, is also a good move.

Being tired and losing sleep are some things that can be dealt with by his doctors. In the meantime, his vitamin regimen sounds like it will help. The fish oil will also help reduce inflammation, the B12 will help with his energy level... in addition to those, my hubby and I also take a multi-vitamin.

When loved ones are in pain, it is a helpless feeling. Your husband is fortunate that you are such a great support system for him... the more you both learn, the more empowered you will feel.
Take care of yourselves and keep us posted?

Hugs, Susie
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#4 Sheryl

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Posted 30 March 2008 - 12:48 PM

Faith, unless your husband already has a rheumatologist he might not even be able to get into one by next week. If he was already at his doctor's office you would have thought that doctor would have drained the fluid to ease some of the pressure or possible infection that is building inside of his elbow. Strange how doctors are passing even the simplest things on to other doctors. More office calls, more money. If it is that painful he should have been given an antibiotic to at least take any of the infection away while he is out of the country. By the time he came back it might have been gone. I am sure your husband is no stranger to pain. He will deal with it how he thinks is best for himself. I am glad you joined out group, not only for his sake but for your own. Sheryl
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#5 peanut

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Posted 30 March 2008 - 01:23 PM

Hi Faith,
It's good to hear you seem to be on a good track.

Sleep & Energy are two difficult accomplishments. Regarding energy, I get b-vit complex shots for energy. My friend with sclero is prescribed narcolepcy meds. Even though I have fatigue I don't always sleep... can't always sleep. I use OTC Melatonin because prescriptions like Ambien CR made me grumpy. Melatonin seems to work well.

Does your hubby have gastro issues? Sometimes a cough can be related uncontrolled gastro issues.

I take fish oil too. I also take Omega-3. Both are anti-inflammatories which are good in my opinion since scleroderma relates to inflammation.

It might be a good idea to keep a library of your record and tests your hubby goes thru. I have a horrible memory, so I also keep a typed journal of all my doctor appts, symptoms, etc. This way I know when I remember exactly when I had the last eye exam or whatever. It also allows me to track symptoms, so I can tell the doctor my finger’s been orange since last weds.

take care, peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#6 faith

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Posted 30 March 2008 - 02:23 PM

Thanks to all of you..

I really do feel better after reading your comments..my husband has a rehumatoligist, he is the one who found about Sclero. He is just hesitate to go now, he wants to wait after he comeback from his business trip....but, after you mentioning that he might get infection, I am going to talk to him now and ask him to talk to his rehumatologist tomorrow and ask him for opinion.

He was accepted for the Gleevec trial too, he will start next month...do you know of someone who is taking gGleevec?

Thank you again.

#7 Sheryl

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Posted 31 March 2008 - 12:51 AM

I don't know of any one taking Gleevec. Several people are starting one of the trials in the next 3 months. Have your hubby get that situation taken care of so there aren't any hiccups in him starting the trial. You don't want to have it delayed because he is healing from something else. Make sure he mentions the trial to his rheumatologist so they can nip the elbow problem right away. Sheryl
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