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Biomarker for Diffuse Scleroderma skin has been discovered!


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Mine Is Scleredema Of Bushke


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12 replies to this topic

#1 Jimmy Mac

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Posted 15 January 2008 - 09:11 AM

Hello everyone> My name is Jim and I am 54 years old. It seems we all have something in common. Pain and wanting to get rid of it seems to be on the top of the list. I started to notice something was wrong about ten years ago. I was a news cameraman for one of your major tv networks. Bending over to pick up the camera became more troublesome. Then the shoulders would kick in. I would ocasionally get a shot of cortazone and lanacain until the surgeon said no more. I had surgery on both shoulders for the rotator cuff. After months of rehab and even accupuncture,the problems will not go away. Range of motion was / is bad.
About 5 years ago I was diagnosed with scleredima of Bushke. ( Bushke was a dermatoligist in Germany in the 30s and 40s.) With the dermatoligist we tried narrow band ultra violet light, No luck.
In the last six months the scledema has kicked in again. My doctor had me on Cozar for blood preasure. The shoulders, elbows and knees really suffered. when I stopped the Cozar , the muscle pain ,stiffness and lack of range of motion slowed up. Change blood presure meds and everthing comes back. It seems to me that there is some connection with Beta blockers ,statins and others and the advancement of scleredema. I have a new rheumatoligist and hopefully we can attack scleredema like it is attacking me.
Here is to a better new year! Even pain Free. I will talk to everyone soon. Jim

#2 Sweet

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Posted 15 January 2008 - 11:15 AM

Hi Jim,

Welcome to the Sclero Forums. I'm so happy you found us, but sorry it's due to your illness. You certainly are now among those that will truly understand what you are going through!

Looking forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 truman

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Posted 15 January 2008 - 12:43 PM

Hi Jim:

Nice to meet you. This site is the most up to date and informative site for this illness and loaded with people like you and me who share everyday occurrences and new additions to what we may face or already face. I have posted here numerous times to share ideas and to get advice from all my friends I have made here.

It's when you arrive here and get acquainted with everyone, that you realize you are not alone and we are a population in and of ourselves.

Try to join in on the chat Wednesday and get acquainted with additional members.
Tru

It is what it is...........

#4 jefa

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Posted 15 January 2008 - 03:34 PM

Hi, Jimmy Mac. Welcome to the ISN Sclero Forums. It is a wonderful spot for information and support. Sounds like you have your finger on the pulse of scleredema, one of the diseases that is similar to scleroderma. For you and others who may not be aware, please refer to our page on Scleredema Adultorum Buschke. We look forward to hearing more about your own progress.
Warm wishes,
Jefa

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#5 Michelle2

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Posted 16 January 2008 - 08:15 AM

Hi Jim~

I'm glad you found us. WELCOME :D You will find that there are so many wonderful people here to led a helping hand and ear to your problems and questions.
Take care and stay warm,

Michelle

#6 barefut

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Posted 16 January 2008 - 04:06 PM

Hi Jimmy Mac,

Welcome! I look forward to getting to now you better and learning more about scleredema.

#7 gladigo

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Posted 25 April 2008 - 11:00 PM

Hi,
I'm Gladys and I have Scleredema of Bushke. I am 52 and I have also active Rheumatoid Arthritis. I mostly have the Scleredema on my neck and back. I would like to know more about your consition and the medication you are taking.

Regards

Gladys

#8 gladigo

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Posted 25 April 2008 - 11:05 PM

Hello Jimmy

I am Gladys. I am 52 years old and live in teh UK. I have been diagnosed with Scleredema of Bushke in 2004 and lately I have also been diagnosed with active Rheumatoid Arthritis. I am constantly in pain and whatever I take soed not seem to alleviate my pain. I have Scleredema on my neck and back and would like to know more about your consition and maybe be able to compare our condition and medication.

Hoping to hear from you soon

Regards

Gladys

#9 gladigo

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Posted 25 April 2008 - 11:11 PM

Hi Pam

My name is Gladys and I'm 52 years old and live in the UK. I have Scleredema of Bushke and would like to communicate with people who have the same consition and see how we can help each other. I also have active Rheumatoid Arthritis and I am diabetic too. Do you have the consition and are you taking any medication. As for me I am not taking anything for the Scleredema but have been told that the medication for Rheumatoid Arthritis will help my skin. So far all the medication have not proved helpful. I was on methotrxate and came off it becasue of some skin problem. I was then prescribed Leflunomide which I have now discontinued for other side effect. I am now waiting to see my consultant and see what he says. Hoping to hear from you soon,

Regards
Gladys

#10 gladigo

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Posted 25 April 2008 - 11:13 PM

Hi Pamela

I am Gladys and sorry, I seemed to have sent you the weong e-mail thinking that you are a patient suffering from Scleredema of Bushke while I just noticed that you are the support people. Sorry about that misunderstanding.

Regards
Gladys

#11 Sweet

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Posted 26 April 2008 - 12:49 PM

Hi Gladys,

No need to apologize. I do have Scleroderma, and we are all here to help each other anyway we can!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#12 gladigo

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Posted 27 April 2008 - 02:30 AM

Hi Pam

Thanks for your e-mail. Ihave Scleredema of Bushke and was wrongly diagnosed the first time. They thought that I have localised Scleroderma. That was 6 years ago but in 2004, I was referred to the specialist hospital in Scleroderma and was told tha I have Scleredema of Bushke and not Scleroderma. Anyway, how long have you been suffering from Scleroderma, if I may ask. Are you on any medication? As for me, I haven't been given any medication as such but since I laso have active Rheumatoid Arthritis, I was prescribed Methotrxate which the doctor said will help with the Scleredema. The sad thing is that science hasn't find a cure yet for our condition. Let's hope that soon, they will come with some medication for us. Looking forward to hearing from you, all the best,

Regards

Glad

N.b: Thanks for the hug, we do need it!!!!!!! Yesterday I was in pain all day with swollen figure.

#13 Sweet

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Posted 29 April 2008 - 08:06 AM

Hi Glad,

I've been diagnosed for 8 years. I'm on Plaquenil, meds for GERD, muscle relaxers, pain pills, anti-inflammatory, thryroid meds, digestive enzymes, Miralax for motility issues, ummmmmm I know there is much more, but I can't think right now! :)

Again, so glad you've joined us!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)