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Biomarker for Diffuse Scleroderma skin has been discovered!


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Boosting Immunity


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#1 judyt

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Posted 15 June 2016 - 01:06 PM

Hi Everybody,

 

I have met a young lady here in Auckland NZ through the local Scleroderma Forum and have a question about what she thinks.

She is of the opinion that the best thing she can do to help herself is to boost her immunity in every way she can.

 

I have a little problem in my own mind about that.   What I read and believe is that Sclero is caused by an out-of-control immune system.   So boosting immunity seems to be the exact wrong thing to do, but maybe I am wrong, what do the rest of you think?

 

Best wishes

Judyt



#2 Shelley Ensz

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Posted 15 June 2016 - 05:27 PM

Hi Judy,

 

I'd recommend that you advise her to consult her scleroderma expert about this. In scleroderma, the immune system is in overdrive (as opposed to AIDS, in which it needs to be boosted.)  So the goal in scleroderma is typically to regulate the immune system, which often requires immune suppressants.

 

Exercise has been shown to increase inflammation in systemic sclerosis, so a health kick that entails excessive exercise could provoke rather than ameliorate symptoms.  See Exercise in systemic sclerosis intensifies systemic inflammation and oxidative stress. PubMed, Scand J Rheumatol, 2010;39(1):63-70.

 

However, some "health kicks" may be beneficial, such as adopting an anti-inflammatory diet. It's great that she wants to take responsibility for her health and is willing to exert effort on it!  However, hopefully some of that effort will also entail consulting and listening to her scleroderma expert, as well. See Diet and Systemic Scleroderma and Supplement Guide for Systemic Scleroderma on our main site.

 

:hug-group:


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.

#3 Joelf

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Posted 15 June 2016 - 07:46 PM

Hi Judy,

Like you, I was always under the impression that the last thing one would need to do is boost the immune system in autoimmune diseases, as it's too active already and would therefore make things worse. I have actually had people say the same thing to me and they have been quite surprised when I've explained that I take immunosuppressants to suppress my immune system, not encourage it.

It's interesting about exercise increasing inflammation, as when I was first diagnosed, I was very fit and almost fanatical about going to the gym, so inadvertently I was probably making my symptoms worse. However, the fact that I was so fit did enable me to pick up on my lung involvement very quickly, plus the fact that my lungs were super efficient to begin with, which did help. However, all the successful treatment I received (cyclophosphamide, azathioprine and prednisolone) involved suppressing my immune system and thus the inflammation in my lungs. I've just had my second hip replaced and have been off the immune suppressants for the past six weeks prior to the operation. I had also been cutting down on the prednisolone with a view to discontinuing it completely and unfortunately the result has been a little flare up in my lungs, so I've had to up the prednisolone again to settle it down. As well as being anti inflammatory the steroid also acts as an immune suppressant, which is why I mention it.

Like Shelley, I would advise your friend to consult her scleroderma expert and be advised by him.

Kind regards,

Jo Frowde
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#4 judyt

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Posted 16 June 2016 - 12:03 AM

Hi,

 

Dream on you lucky ladies in the UK and US, we don't have any Scleroderma experts here.   One or two Rheumies who have an interest in our problems but no experts.  

 

Judyt



#5 Margaret

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Posted 16 June 2016 - 12:56 AM

Hi Judy,
Gareth has a new rheumatologist (trained at JH Sclero center) and when I questioned her about raising his Plaquenil level because of pain/fatigue, she said *no* . Her reasoning was that his pain/fatigue was due to exercising (post neck surgery) and not inflammatory/sclero related. She also stated since he was receiving monthly IV Ig infusions, due to his immune deficiencies, that would be his next line of therapy anyway. If you Google *scleroderma treatment and IV Ig*, you will find many medical articles about it. The immune system obviously has a mind of it's own since Gareth has UCTD and immune deficiencies.....but then again, that's par for Gareth !! :dont-know: :wink: To me, your young friend is reiterating what the rheumatologist said may be the next line of therapy for autoimmune diseases. Obviously, more studies need to be completed for IV Ig infusions and autoimmune diseases, but they are being used for treatment.

Take care, Everyone.
Margaret
Mom to Gareth, 28 years old, DS/ASD/UCTD/MBL deficiency/Ig 2/4 deficiency

#6 Margaret

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Posted 17 June 2016 - 12:16 AM

Judy, I just read this about MBL deficiency while Googling this morning.  It seems MBL deficiency is considered an autoimmune disease and the last line of this information, his IvG 2/4 deficiency,  says they are susceptible to autoimmune issues. Which came first; the chicken or the egg ?!?!?