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Did you know that exercise increases inflammation in systemic sclerosis?


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#1 Cathy20

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Posted 21 June 2016 - 12:45 AM

Thank you all for this site as it teaches me more and more about this condition of which I'm still confused, but this site makes all the confusion more understandable by the day. I received my last dose of cyclophosphamide last December 2015 which was 1dose every 3 weeks.

This is my 1st result after the treatment : urine protein +, myopathy much improved ,CVS -s4 + , s2 PSH but thin pt , - murmus , PM -SCL - ,MIZ - ,RIBO P - ,UIRNP - , APLS - ,U _PCR 0,113 ,C3 /C4 - , RF 10 ,ANA + 1:160 ,DSDNA + ,RO + ,LA + ,SCL70 ,RNP 70 - ,SM - ,FIBRILLIN + , PCNA - . This are my previous ones : polyclonal increase in Ig ,anti fibrillin antibody + ,anti ds DNA - ,anti RO & LA + ,CVS :S1S2 - Murmur , Resp :GBAE - ,GEPS - ,ABD :soft ,non tender + BS ,CNS : intact ,urine protein + ,B12 (N) , - dysphagia. I hope I wrote all the terms correctly.

I need to know if I'm really making a positive progress with the treatment I'm taking now ,which is prednisone, folic acid, chloroquine everyday and methotrexate weekly . Thank you for taking so much time to attend to our queries.

Much appreciation, :happy:

#2 Joelf

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Posted 21 June 2016 - 03:21 AM

Hi Cathy,

Thanks for updating us with your progress.

I'm afraid as I have no medical qualifications I'm unable to comment on your test results; however, it would appear that the myopathy has improved and I do hope that you are feeling the benefit of the treatment you've received. I would say that treatment for scleroderma does tend to be ongoing, but would suggest that you contact your scleroderma expert and discuss your test results and progress with him/ her.

I received treatment with cyclophosphamide a few years ago for my lung fibrosis, which, whilst it's not a drug I would take through choice, was very successful in my case.

I do hope that you will continue to improve.

Kind regards,

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#3 Cathy20

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Posted 21 June 2016 - 09:26 AM

Thanks a lot for the reply; I do feel much better compared to last year.

 

July I will be turning one year since my diagnosis and to tell you the truth I'm so glad I'm alive and able to care for my family the best way that I can. It's not the way I wanted to help them, but they understand this is the best I can provide.

 

I still can't do long walks or squat to save my life, but I survive. My arms can't stretch outwards like a normal arm would but at least I can hold them up to my breast level which I couldn't do a few months ago . I wouldn't have survived all the mysteries about this condition if it wasn't for my husband and daughter but most especially this forum; I think I'm addicted to this site hahaha.



#4 Shelley Ensz

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Posted 11 July 2016 - 06:59 AM

Hi Cathy,

 

Generally speaking, if you are wondering if you are improving with treatment, look to your symptoms for the answers, and not to lab results.  Blood tests can be erroneous (up to 20% of the time) and even misleading sometimes (indicating you are either better or worse than you actually are.)

 

Look at the really big picture, such as how you felt overall before you started treatment, how you think you'd be doing without any treatment at all (if you were on a decided downhill slide beforehand), and how you're doing now.

 

We tend not to notice things like a disease that has stabilized, or that has quit progressing, because we want to be restored to perfect health. So it is easy to look a gift horse in the mouth when it comes to treatments, and to be a bit unaware of how they have truly helped.  And then again, of course, some treatments just don't help at all, the side effects are worse than the disease, and they need to be stopped.

 

How do you assess things, apart from the lab work?

 

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Shelley Ensz
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#5 Cathy20

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Posted 18 July 2016 - 01:06 AM

Hi Shelley,

Thanks for this advice. To tell you the truth I feel better than I was a year back, in a way I think it's a good sign with this condition. I'm confused whether it stabilised or not but I don't believe it's progressing, as I haven't experienced anything compared to what my body went through. I had an early pulmonary hypertention diagnosis along with diffuse systemic scleroderma; I was taking Karsedilol and methotrexate for about five months and they were both stopped. So does this mean I won't have my heart problem anymore because I still experience the strong and fast pounding of it, but it doesn't last long and I no longer suffer from shortness of breath like before? Overall I don't have much to complain about; I'm just curious to know more and preventing any complications. I'm 33 years of age and I hope that I live to see my grandchildren without any serious outcome of this illness.

Much appreciation :happy:

#6 Shelley Ensz

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Posted 19 July 2016 - 05:18 PM

Hi Cathy,

 

Ir's common for scleroderma to stabilize, so it's usually safe to figure that if it's not progressing, then it's probably stable or even improving. The only caveat is, never skip your recommended follow-up appointments just because you feel fine, because occasionally some things can progress silently. So, overconfidence is silly with this disease, but I doubt that will be a hazard for you.

 

Ask your doctor what symptoms you can safely ignore, and when you should seek medical care. Our hearts are supposed to beat hard and strong under some conditions, like exercise or anxiety, so it's more a matter of what is in the realm of normal for you, with all your conditions. 

 

You may even want to see if you are eligible for a cardio rehab program, where you can safely build exercise tolerance while being carefully monitored. Its very easy to get frightened from heart problems, and then avoid doing things that will make them stronger and healthier. It's good to relax and truly enjoy the pleasant spells when symptoms relent a bit.

 

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Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.