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Newly diagnosed with Scleroderma overlap


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#1 VTDMSCL

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Posted 01 February 2016 - 09:02 AM

Hello everyone,

I stumbled upon this site today when searching for information regarding scleroderma. I was diagnosed with dermatomysitis in 2007. Through the progression of the dermatomyositis and moving back to the small town I had grown up in, finding medical care for a rare disease has been difficult.

 

I recently discovered we had a Rheumatologist in town and was able to get in to him. He was very concerned as I hadn't been treated for the dermatomyositis in many years, in spite of the progression. I had also been diagnosed with Raynauds phenomenon years ago. With the progression, I have been dealing with swallowing problems, bowel issues, significant muscle weakness etc..  He ran a lot of lab work as well as examination and discovered I also have scleroderma.

He wants to start treatment as soon as possible to try to slow things down. I do have lung disease as well, so he had me see my pulmonologist as well to make sure it was safe to start treatment. We are all working as a team, and said they will be watching me closely.

Right now I am not sure how to feel. I am an emotionally strong person, and have already known I was dealing with a rare, progressive, non curable disease, being dermatomyositis. I keep pushing forward, and adjusting my activities along the way.

I guess I need to know I'm not alone. To be able to talk things through with others who may be experiencing the same things.

Thanks for taking the time to read this through.

VTDMSCL



 



#2 Joelf

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Posted 01 February 2016 - 11:41 AM

Hi VTDMSCL,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with dermatomyositis since 2007 and now could have the added complication of Scleroderma in Overlap to deal with. We do recommend that if possible, our members consult a listed scleroderma expert, although at least now it sounds as if your rheumatologist is trying to get to grips with your symptoms and hopefully, he will be able to improve things for you.

 

Now that you've found our forums and joined our community, you will find that you are no longer alone and will have the benefit of the advice and support of our members.  Please do keep posting and let us know the results of your tests and any treatment.

 

Kind regards,


Jo Frowde
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#3 VTDMSCL

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Posted 01 February 2016 - 02:14 PM

Thanks so much for your response, as well as the links you've shared, they were helpful.

My Rheumatologist actually called me this afternoon. He wants to start treatment as soon as possible. Years ago I was put on prednisone for the Dermatomyositis, which I had adverse reaction to, and had to be weaned off.
So he was going to start me with methotrexate, but due to the condition of my lungs he said we can't use that drug. So he spoke of trying Cellcept. He mentioned that sometimes insurance companies won't cover these drugs so he wanted to send the script to my pharmacy to find out if they will.
He said the team will be following me closely and running blood work every 2 weeks to make sure I'm not having any ill effects due to this med.

Obviously this is all new to me, not knowing much regarding the meds, other than what I am finding online. Has anyone here had success with Cellcept?
Also, any idea as to the cost of this drug? I know it depends on your insurance but wondering if this is an expensive medication in general. Funds are limited and I'm hoping this will be affordable to me. Sad that we have to worry about cost when it comes to our health, but it is a sad reality today.

It's nice to know I will have others that I can hash things over with, not that I'm glad others are experiencing the same thing, but I'm sure you understand what I mean.

Again, thank you for your kindness and response

#4 Joelf

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Posted 01 February 2016 - 09:22 PM

Hi VTDMSCL,

I've never taken Cellcept (mycophenolate) but many of our members do, with fairly successful results.

We have a thread on Cellcept which describes other Immunosuppressants as well. We also have a recent news items regarding mycophenolate and interstitial lung disease and Safety and Effectiveness of Mycophenolate in Systemic Sclerosis which I hope you'll find helpful and interesting.

I'm afraid I can't advise you as to the cost of Cellcept, as I'm in the UK and we have a different system, whereby we have a set amount that we pay for medications (in some cases we're exempt from the charges, having paid for them throughout our life by way of compulsory national insurance contributions) but I've included a link to our page on Free and Low Cost Medication Programs. It's possible that our US members will be able to advise you further.

Kind regards,


Jo Frowde
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#5 VTDMSCL

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Posted 02 February 2016 - 03:36 AM

Thank you again for posting all the links. I will sift through those as well!

 

:happy:

 



#6 Sweet

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Posted 02 February 2016 - 06:32 AM

Hi VTDMSCL!

 

Let me just give you a nice big hug and welcome! I do hope your treatment that you will be starting will be helpful. Keep us posted!


Warm and gentle hugs,

Pamela
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#7 VTDMSCL

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Posted 02 February 2016 - 07:33 AM

Thank you so much! I sure will keep you posted.

Trying to learn as much as I can about all this. When I was diagnosed in 2007 with the dermatomyositis at a University hospital, it was expressed upon me just how important it was to educate myself on all my conditions, as they were rare. At that time I had ONE of the doctors, ask me if anyone had ever mentioned scleroderma to me before, as he was examining my hands, and going over other symptoms I was having. He was a GI doctor. He then referred me to a rheumatologist. The rheumatologist examined my hands, and said no, that's probably from the work I did at the time. He did run some labs, but I am getting the impression at this point, that perhaps he may have disregarded testing for scleroderma given he didn't believe that was what I had. Not that that will change things at this point, just thinking out loud.

Then, In 2010 I started having trouble swallowing. Something I had mentioned to my pulmonologist. He ordered a Video fluoro swallow study which showed significant dysphagia at that time. I was then sent to a GI doctor, he had done a endoscopy, which showed inflammation throughout the esophagus due to a non infection cause, as well as multiple stomach erosion's with findings of 'coffee ground" old blood.

 

He put me on Prilosec for reflux. I asked him if it could be due to the dermatomyositis, his answer was, "Not that I know of."

 

So at this point, I am guessing it was either the dermatomyositis or scleroderma causing it back then?

The rheumatologist I have now, after going over all my records with tests I've had over the years, as well as looking at my hands, tested for the scleroderma overlap,(though he did not tell me what he was thinking at the time) and had mentioned that he believed I may very well have another disease on top of the one I already had been diagnosed with. Which now has been confirmed when he received the lab results. I've also had the chest CT, and seen my pulmonologist, as well as an infectious disease doctor, due to the fact I have had infection in my lungs in the past. I will be seeing a GI doctor on the 15th of this month as well. My rheumatologist has stressed to make sure I inform the GI doctor about the dermatomyositis/scleroderma overlap diagnosis when I see him.

I guess I have to look at all of this with the attitude that at least NOW, FINALLY, we will start treatment, and hope for some improvement. I do at least feel like I have a good team with the doctors I have now. That's one positive. :~)

I feel like I'm rambling at this point.

 

Thanks for listening!



 



#8 VTDMSCL

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Posted 05 February 2016 - 02:26 PM

Just an update:

I have started treatment with Cellcept today. He is starting my dosage with 250mg twice a day and he will gradually raise the dosage as long as I can tolerate it.
Hoping for some positive results!



#9 Joelf

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Posted 06 February 2016 - 09:09 AM

Hi VTDMSCL,

 

Thanks so much for the update.

 

Please let us know how you get on with Cellcept.

 

Kind regards,


Jo Frowde
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#10 Sweet

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Posted 08 February 2016 - 06:22 AM

Thank you for the update! Look forward to hearing how the Cellcept works for you. 


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)