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moe

worried

6 posts in this topic

hi everyone diagnosed in december with diffuse systemic scelo after only four mounths had lots of tests and will be starting treatment in the next week or two I have been told it will be fifteen weeks treatment and I am a little bit nervous its nice to find others to talk to as I can't get my head around it all yet moe (maureen)

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Hello Moe

 

Welcome to the forum, it's a great place to be for all things scleroderma.

 

What treatment are you going to have and for which symptom(s)? I also have diffuse sclero and am into my 3rd year. It is overwhelming in the beginning but it gets better, you'll find this forum very helpful.

 

Take care


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda I am going for a lung function today and fingers crossed will be starting treatment next week. My consultant told me they will be starting me on cyclophosphamide probably by infusion as my symptoms are so aggresive hopfully this will slow down my skin hardening and help my breathing. Must add I was refered to Chapel Allerton four weeks ago and they were brilliant. moe

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Hello Moe

 

I'm glad you're getting treatment sooner rather than later. We have a page about cyclophosphamide that may be of interest to you.

 

Keep us informed of your progress and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Moe

 

Welcome to this very helpful and informative forum although it's a shame you've been diagnosed with Diffuse Sclero.

 

I have Systemic Limited Sclero with lung involvement and like you my lung symptoms were quite aggressive so I was also put on a treatment of 6 cycles of IV Cyclophosphamide combined with a low dose of Prednisolone.

 

I finished the course in December and I have to say that the improvement in my lung function tests after the treatment are nothing short of miraculous!!! :emoticons-yes: (see thread 'Lung Function Tests' for all the gruesome details!! ;) )

 

Obviously everyone responds to treatment differently and I was very fortunate that my fibrosis was picked up early whilst a lot of it was still at the inflammation stage, whereby I was able to reap the full benefit of the cyclophosphamide but hopefully you will also show a marked improvement after you finish your treatment. It also sounds as if, like me, you have an excellent medical team working wth you. :)

 

Please don't feel nervous of the treatment; it is a little unpleasant but certainly not unbearable and the result is well worth a little temporary discomfort!! :D


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Hi Moe, sorry to hear that you have rather aggressive scleroderma. Hopefully the cyclophosphamide will have a good effect. At least you have the reassuarnce of being treated at a centre where they are experts in scleroderma.

 

Lizzie

Ps I'm also in West Yorkshire

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