“I really can’t recommend systemic sclerosis as a preventative.”
I was explaining how SSc messes with collagen and causes fibrosis inside and psych made the link with far too much wonder and glee “that’s why you have no wrinkles!”
#systemicsclerosis #autoimmunedisease #spoonies #chronicillness
Just two mornings of light strength training, radio taisho movements and tai chi warmups, and omgowhowamigoingtogetthroughtheday?!
Yes, this is normal for me - muscle and tendon and bursa inflammation cause painful overreactions to exertion (in addition to the PEM fatigue/exhaustion). Docs usually say stop when they see/feel the inflammation and cramping, but this time, ortho wants me to push through it and continue as intensively as possible - her theory is doing something different may have a different (better?) outcome.
Holding an experiment mindset is much harder in the midst of this pain.
A good mask also really helps when out walking in freezing weather as warmed air means less coughing and less drying out of the airways. On top of the allergy, pollution and illness defence.
— my experience yesterday walking an hour with #SystemicSclerosis damaged lungs and oesophagus (I’m normally dropped off at doctors)
Not a welcome Christmas present - not welcome at any time - failed roadworthy ‘cos steering bearings are shot. Geordie passed its annual physical only a couple of months ago though! (That’s not on the check list)
Glad it was caught before any accident. But this does mean I now need to walk to physio tomorrow - about 3 months sooner than the training plan. And walk back home. Eeep.
Will take it slowly, and clear the calendar for several days.
One of the anxiety-inducing appointments down. I’ve had to bully for care on this previously.
Apparently, covid can continue affecting the bowel for a year or more after infection - in my case, softness has helped reduce bleeding, which is good! But any massive change in consistency is worrying with SSc.
So they want to do a full from mouth-to-out test with biopsies the whole way - SSc increases cancer risk, and as symptoms have gotten worse. Normally with SSc - colonoscopies every 5 years, gastroscopies every 2-3 because of the cancer risk and increased swallowing problems.
But this time, I only need to go under once early next year - they’ll do both ends at the same time!
May be TMI, but this amused me.
If you have had an iron infusion … what should I expect afterwards?
Got hematology finally booked for end October through a special booking website for the whole of Germany with a ‘vermittlungscode’ (priority code) from the GP as the iron anaemia is not resolving with ingested rust (years now… is a sclerosis thing). The folate anaemia came good with tablets.
The site booked the same place that said they can’t take new patients at the start of the year (didn’t have a special code back then). Hah. This amuses me.
I hesitate to ask, but doc has prescribed me a new painkiller - a step up from the novamin drops I used for migraines but have stopped working after menopause. (Codeine hasn’t worked for years)
Does anyone have experience with tilidine? (with naloxone in the same tablet)
Does it hit the kidneys?
Or cause constipation?
*nervous about this one*
#spoonies #migraine #ChronicPain #PsoriaticArthritis #SystemicSclerosis
My habit of reading deeply into medical journals is definitely provoking mountains of anxiety around the systemic sclerosis. But it is also confirming many of my gut feels.
Yes, the triple virus start to this year, particularly the final covid infection (from the dentist), triggered progression in the ILD component of the sclerosis so that it is easily seen on a CT scan. Thankfully, kidneys and heart remained stable.
https://journal-inflammation.biomedcentral.com/articles/10.1186/s12950-023-00362-x
#SystemicSclerosis #covid #autoimmune #rheumatology #spoonies
Background Coronavirus disease 2019 (COVID-19) induces a dysfunctional immune response, inflammation, autoantibody production, and coagulopathy, which are symptoms that bear resemblance to those of autoimmune diseases, including systemic sclerosis (SSc). Methods While there is a single case report suggesting an association between COVID-19 and SSc, the effects of COVID-19 on SSc are not yet fully understood. Human embryonic kidney 293 (HEK293) cells were transfected with the SARS-CoV-2 spike protein gene, in the presence of TGF-β. The expression levels of fibrosis-related proteins were measured via Western blotting. A bleomycin (BLM)-induced SSc mouse model was employed, wherein mice were injected with the gene encoding the SARS-CoV-2 spike protein and the ACE2 receptor. The levels of fibrosis, autoantibodies, thrombotic factors, and inflammatory cytokines in tissues and serum were analyzed. Results In vitro, the expression levels of fibrosis marker proteins were elevated in the spike protein group compared to the control group. In vivo, the skin thickness of SSc mice increased following exposure to the SARS-CoV-2 spike protein. Furthermore, the levels of autoantibodies and thrombotic factors, such as anti-phospholipid antibodies (APLA), were significantly increased in the presence of the protein. Flow cytometry analysis revealed increased expression of the proinflammatory cytokine IL-17 in the skin, lungs, and blood. Moreover, tissue fibrosis and levels of inflammatory cytokines in skin and lung tissues were markedly escalated in SSc mice subjected to the protein. Conclusion COVID-19 may accelerate the development and progression of SSc by intensifying fibrosis through the upregulation of inflammation, autoantibody production, and thrombosis.
Gut feeling was on the money - from self experimentation with ACC dissolvable tablets - acetylcysteine seems to help long term with lung issues in systemic sclerosis. Personally, it helps stop the coughing fits and makes it easier to swallow. I’ll double check with the rheumy next I see her, but happy to find this study.
https://pubmed.ncbi.nlm.nih.gov/21978705/
#SystemicSclerosis #Scleroderma #rheumatology #RareDiseases #spoonies
Systemic sclerosis (SSc) is associated with interstitial lung diseases. The primary endpoints of this study were changes between baseline and month 24 in single-breath carbon monoxide diffusing capacity (DLco). The secondary endpoints were: vital capacity (VC), forced expired volume in 1 sec (FEV1), …
Chalk another one up for “it’s not in your head”.
Have had systemic sclerosis as well as the spondy since I was a kid, when Reynaud’s first appeared. It’s only now starting to distort my mouth, which is why the rheumy noticed it. Clearly visible in lung scans now too - cell culture will determine an appropriate inhaler.
10 years for an #endometriosis diagnosis, 30 for #spondyloarthritis, 40 for the #SystemicSclerosis. All of which so many doctors and specialists told me “you’re imagining it”.
What made the hindsight diagnosis clearer? A concept map of everything grouping related symptoms/diagnoses and a timeline of the same. Rheumy wants to use them with her student docs.
Kymberly