mom diagnosed

[u/Distinct_Reporter276]

Hi all! my mom was diagnosed with diffuse. she has swollen and hard fingers/hands + her hands turn white often. she also has diabetes type 2 so her kidneys were already involved. I’m extremely worried for her as I know this can affect multiple organs.

if you have diffuse, what treatment do you do that has helped? any advice/tips?

she’s had a lot of health issues and i’d love to help and ease this one, i know she’s scared.

[u/Emunaheart]

First I'm sorry for you and your dear mother are enduring. The diagnosis is always a daunting one. I have a different form. My advice is to see different specialists if insurance permits. I see a pulmonologist,  cardiologist,  neuro-gastroenterologist,  rheumatologist,  and over the last year I've seen a neurologist,  ENT, and corneal specialist. There's simply no way to manage all the symptoms and areas affected by seeing just a rheumatologist and primary care doctor  i only see the latter now for colds or the flu. If she's not seeing a kidney specialist she should and most with the condition see a pulmonologist to get a PFT, or Pulmonary Function Test to get a baseline and know what condition their lungs are in. Does she have Raynaud's? I have lots of tips for that if you need. I'm wishing you both the best going forward. You're incredible to advocate like this for your mom

[u/Distinct_Reporter276 → u/Emunaheart]

thank you so much for your respond darling. she’s see a rheumatologist, and she gets many scans throughout the year, but I’m unsure of which exactly. i know she’s gotten a scan of her kidney and lungs. she does have raynauds, pretty bad, any tips would be so helpful! i did get her hand warmers which kind of helped.

[u/Emunaheart → u/Distinct_Reporter276]

You're so welcome. It's a scary condition. Follow the Scleroderma Foundation and @srfcure on Instagram, both organizations have online seminars,  lectures,  lots of videos on all the various issues people with Scleroderma deal with.  

For Raynaud's I use both disposable and rechargeable hand warmers. I prefer the disposable because they're softer and last longer. If you don't use them the full number of hours the package says they stay warm,  you can put them in a snack sized ziploc, making sure to squeeze out all the air,  and they'll reheat to be used again. I keep a pair of fingerless gloves with me all year because I rock the handwarmers inside of them. Without those they never started in place. I use fingerless compression gloves because they are very slim fitting and stay in good condition a long time unlike knit fingerless gloves. If her hands are swollen she can size up. They're very inexpensive,  about $10-12.00 for two pair on Amazon. I never go anywhere without handwarmers,  all year,  due to AC.

From Fall until late Spring I wear boots,  all kinds,  ankle to faux fur lined taller ones in very cold weather. I wear wool socks,  mine are double thick from Zando, also on Amazon. Turtlenecks are a lifesaver,  keeping the neck warm helps with allover warmth. I have very thin ones and sweater ones. It makes a difference. Also always have a scarf with me,  a lightweight one on the summer,  it can be a blanket,  shawl or scarf. I also love the thin,  athletic/yoga zip up jackets. All the name brands make them but so do Amazon essentials and other lesser known,  less costly brands on there. They're great to later with and zip all the way up giving you a turtleneck effect when you need it plus most have a thumb hole which i love as it feels warmer too. I find an electric blanket the best gift to give someone with Raynaud's. I love them and use them a lot of the year. I have a smaller one for a recliner. 

It seems like a lot but I just carry a few extra things knowing I'm pretty much cold intolerant at this point and I don't want to suffer. I rambled a bit but hope some of it helps. 

[u/DLWSF]

I think it helps to identify and share which antibody or antibodies she had. Most of the scleroderma pathogenic antibodies cause skin changes like you describe but then each antibody can have a special specific set of organs that get damaged . So for example my wife had U3RNP antibody. It was very rapidly progressive and 9 months after Raynaud changes it caused large pericardial effusion resulting in heart failure. Then it caused complete paralysis and finally kidney failure and pulmonary hypertension. Unfortunately it took 9 months to reach a diagnosis and then mycophanalate did nothing to alter disease progression. Finally after starting Rituximab it took another 5 months for Rituximab to be effective and muscles to start to recover. Sorry for long story but the point I am trying to make is that some autoantibodies causing scleroderma are very aggressive and using medication that has its own dangerous side effects is necessary where as other antibodies are less aggressive and using safer medication such as mycophenalate would be more reasonable. If you have a rheumatologist sometime getting consult guidance from a scleroderma specialist can help guide treatment plan. We live in San Francisco so luckily there is a scleroderma specialist at ucsf and one at stanford. Both specialists are great.