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It's Hard To Be Patient


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#1 Paul

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Posted 03 April 2007 - 07:45 AM

Hi,
My name is Paul and I am new to these forums. I am engadged to an absolutely beautiful woman outside and in who has just received a preliminary diagnosis of Scleroderma. I have been scouring the internet for information after not having much faith in the initial Rheumatolgist who gave the diagnosis. I have found a lot of great information here on this site.
The Rheumatologist basically said there was not much he could do except treat symtoms as they arise so we got her into see a Scleroderma specialist at Duke later this month.
I realize that there is no cure, but it seems to me there are some preventative things that could be done in the short term to prevent the onset of symtoms.
She currently has Raynaud's, swollen fingers and is very fatigued.
Is it common that if there is no evidence of internal organ damage or skin hardening yet then do nothing? I am sure we will get better answers at Duke, but was hoping to get her some relief and possibly treatment more quickly.

She is currently taking vitamen E and ibprofen for the swelling.

I might have asked my question too soon. I just read another post where Plaquenil was recommended. That seems to be a good choice.
I have a diffcult time being patient. I guess we need to wait till the appoiintment at Duke in 3 weeks and go from there.

Any other advice would also be appreciated.

Thanks,
Paul

#2 Heidi

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Posted 03 April 2007 - 10:18 AM

Hi Paul,

Welcome to the forums! I am glad you found us, but sorry it is due to your fiance's diagnosis of scleroderma. I am glad that you are going to go see a specialist at Duke. I am sure you will get some good information then. As you read, Plaquenil is considered to be a DMARD (Disease Modifying Drug) and supposedly works by decreasing the internal inflammation. My guess (and hope) is that the doctors at Duke will also to do a lot of testing to make sure that there is no internal involvement yet and to get baseline readings for internal organs as well.

Please do keep us posted and let us know what you find out. We are all here to help, support, and encourage in any way we can.

Again, welcome!

Warm wishes,
Heidi

#3 janey

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Posted 03 April 2007 - 10:33 AM

Paul,
Welcome to the forum! I'm so sorry to read about your fiancee's preliminary diagnosis, but am glad that you two have taken that next step of seeing the specialist at Duke. I trust that you will receive a wealth of information as well as a series of tests for your fiancee to take. Duke University is right there on the leading edge of new treatments for scleroderma. It has some trials going on currently using stem cell transplants for scleroderma. You definitely have made the right choice in pursuing this expertise.

In reference to your question about treatments for the disease rather than just treating the symptoms, I would encourage you not to do anything prior to your visit to Duke. Many of us are on immunosuppresants drugs that are designed to suppress the immune system and slow down the damage being done by the disease. In my humble opinion, this is treating the disease, not the symptoms. However, such treatment should be conducted under the close supervision of a rheumatologist. These medications can cause liver damage, kidney damage and so on, so weekly to monthly bloodtests need to be taken to make sure that they aren't doing more harm than good. Since her appointment with Duke is later this month, I would strongly advise waiting to see what the specialist say.

Please let us know how her appointment goes and please - do not hesitate to post more questions and just vent. That's what we're here for.

Big Hugs,


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#4 WestCoast1

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Posted 03 April 2007 - 11:15 AM

Paul,
I am truley sorry for your fiances diagnosis. She is very fortunate to have someone so supportive, caring and concerned about her illness. Having support is what keeps us smiling from day to day.

You have recieved some good advice from others on this post. Finding a correct diagnosis, caring doctors, and propper treatment for these autoimmune disfunctions does take a long time. Treating the symptoms is a good step to feeling like "yourself" again....we all hope for a cure some day.

As far as taking other meds besides IBprofen and vit. E, I also think it is best to wait for the diagnosis and recomendation from the Dr. at Duke. Every person responds differently to different meds, and it is a good idea to check for all of the other things like blood pressure, heart, liver, kidnes and lungs before begining treatment, as it could do more harm than good.

Hang in there,
*WestCoast*

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#5 oddone

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Posted 03 April 2007 - 11:49 AM

Paul:
I agree its hard to be patient. The vastness of this disease and the individuality of it also makes it tough.
My husband was diagnosed in Oct/06, and I am like you, taking in all the information I can.
It gets exhausting sometimes and sometimes you just have to walk away from it for a little while, cause unlike some illnesses, there are no concrete answers.
This forum is a great source of knowledge and insight.
It helps me (the one without the disease) to learn how others with the disease are coping, and gives me a better sense in "how to help" the one I love.
Even some of the "venting" is interesting and helpful.
so, welcome to the forum, and never be afraid to ask your questions, there are sooooo many people here with helpful hints, and tips.
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)

#6 Paul

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Posted 03 April 2007 - 04:38 PM

Thank you to all for all the great advice. It really means a lot.

I struggle on a number of different levels.
Fist of all, I keep searching for another condition that would cause Raynaud's, finger swelling and a high ANA blood reading. I keep thinking that 30 in 100,000 is like winning a lottery I didn't want us to enter. We will deal with whatever final diagnosis comes, but I hope for the best. Based on the responses to my original post and other comments on this forum, Duke is a great place to go and we are fortunate to be right down the road in Chapel Hill, NC. I will take the advice here and not do anything more until we go to Duke in a little over 2 weeks.

Second, is that I struggle with how to be supportive without upsetting her more. I have found that it is not good for her at this point to research the internet as it just upsets her more, but I struggle with whether she needs to cry or be strong. I know that I am terrified and it is not my body with all the strange symtoms cropping up. She is terrified of having to have all the tests done. I know the tests are not optional and keep trying to stress that, but decided tonight that I just shouldn't discuss the neccessity of testing anymore. I will let the doctors tell her what needs to be done then just be there for her.

Lastly, a crisis like this has made me realize how important she is to me and how unimportant everything else is. Reading the stories on this forum and being there for my fiance make me feel fortunate to be alive and in love.

Thanks,
Paul

#7 LisaBulman

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Posted 04 April 2007 - 02:28 AM

Hi Paul,
Welcome to the forums! I was so sad to hear of your fiance's diagnosis. It reminded me of my life. She is probably in the initial shock phase. we all go through it. It is like someone just told you your life will end or atleast that is what you hear. She will have many days where she cries and many days when she will be strong. It comes with the territory. After living with this for 14 or so years now, I still have days when I am strong and days I cry. Just be there for her, even if you don't say anything....

Please keep us posted on the information you receive at the appointment and feel free to ask questions here. We are always willing to help.

Hugs,
Lisa
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#8 nan

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Posted 04 April 2007 - 02:42 AM

Paul,
Welcome to the forum. I am so sorry about your fiance's diagnosis. She is very lucky to have you. As far as testing goes it really isn't that bad. I had to have a chest x-ray, echocardiogram, and pulmonary function tests. I also had some other x-rays done. Nothing was painful. It is sorta scary waiting for the results. Hang in there! I am sure that Duke will do a great job.
Nan

#9 jefa

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Posted 04 April 2007 - 06:44 AM

Hey, Paul, it is so good to hear from significant others who are so supportive of their partners' conditions. There are several other people on the forum who are in the same boat and I congratulate all of you for caring. One thing you mention is your struggle with whether she needs to cry or be strong--the answer is, of course, yes. Sometimes we need to cry AND sometimes we need to be strong. The key in supporting effectively is that she is the one who gets to decide. Be there for her. And I am sure you will be.

#10 americanmike

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Posted 04 April 2007 - 11:51 AM

HI Paul--

I'm so sorry for what your fiance and you are going thru. It can be overwhelming.
This might help you keep your hope and feelings positive.

1) check out all the articles on this site for stem cell transplants. Read all of them word for word.

2) find the article on survival numbers and ana pattern. The numbers are like 65-90% 10 year survival. And that was 10 years ago.

3) Do the math. With all the amazing new medicine research from stem cell transplants, to allo transplants, to organ transplants, to cellular therapy. Chances are your fiance will beat this thing.

4) Some people have been cured. Well, they don't know if it is a cure yet... but they have had no disease return for over 10 years.

She can beat this. And you must keep positive about that. It is not an automatic death sentence.

Michael in Florida

#11 Lori-Scleroderma Spouse

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Posted 04 April 2007 - 12:44 PM

Hi, Paul
I am sorry you are discovering this disease this way. My husband was diagnosed a year ago this week. The rummy told us the same thing. We were devastated. He made us an appointment in Charlston, but we were going to have to wait 2 months. In the mean time, I found Duke. He got us an appointment there in about 2 weeks. Dr. Shanahan at Duke was much more encourging. He believes in treating this disease aggressively. He has also been very supportive. He will give you his e-mail and responds to questions very quickly. He now calls me the e-mail Queen. Although all this is frightening, stay positive, it really does help. I will be glad to talk with you or e-mail with you. We all need a shoulder to cry on sometimes. I will pm you my e-mail address.

Keep smiling
Lori
Scleroderma Spouse

#12 Gi Gi

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Posted 04 April 2007 - 01:07 PM

Hi Paul,

Welcome to the Sclero forums. I'm really sorry your girlfriend is recently diagnosed. :( This site is great! You will find a lot of information and support. Plaquenil is a good drug to start with. Give the doctors a chance, sometimes it takes a bit of time to work through the beginnings of it all.
Your Friend,

Gi Gi

#13 Paul

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Posted 05 April 2007 - 04:06 AM

Thank you again for all the great advice and kind words. I will send an update after we have visited Duke.

Thank you,
Paul