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#scleroderma — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #scleroderma, aggregated by home.social.

  1. The DMSO Moment: How an Old Medicine Finds New Life - Mary Beth Pfeiffer A woman facing a lung transplant reversed her condition with a $30 over-the-counter treatment. Doctors told her she had no o...

    #autoimmune #DMSO #lung #health #lung #transplant #Mary #Beth #Pfeiffer #scleroderma

    Origin | Interest | Match
  2. The DMSO Moment: How an Old Medicine Finds New Life - Mary Beth Pfeiffer A woman facing a lung transplant reversed her condition with a $30 over-the-counter treatment. Doctors told her she had no o...

    #autoimmune #DMSO #lung #health #lung #transplant #Mary #Beth #Pfeiffer #scleroderma

    Origin | Interest | Match
  3. The DMSO Moment: How an Old Medicine Finds New Life - Mary Beth Pfeiffer A woman facing a lung transplant reversed her condition with a $30 over-the-counter treatment. Doctors told her she had no o...

    #autoimmune #DMSO #lung #health #lung #transplant #Mary #Beth #Pfeiffer #scleroderma

    Origin | Interest | Match
  4. CW: Health - iron infusion question

    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.

    #SystemicSclerosis #Scleroderma #Spoonies #ChronicIllness

  5. CW: Health - iron infusion question

    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.

    #SystemicSclerosis #Scleroderma #Spoonies #ChronicIllness

  6. CW: Health - iron infusion question

    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.

    #SystemicSclerosis #Scleroderma #Spoonies #ChronicIllness

  7. CW: Health - iron infusion question

    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.

    #SystemicSclerosis #Scleroderma #Spoonies #ChronicIllness

  8. CW: Health - iron infusion question

    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.

    #SystemicSclerosis #Scleroderma #Spoonies #ChronicIllness

  9. 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.

    pubmed.ncbi.nlm.nih.gov/219787

    #SystemicSclerosis #Scleroderma #rheumatology #RareDiseases #spoonies

  10. 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.

    pubmed.ncbi.nlm.nih.gov/219787

    #SystemicSclerosis #Scleroderma #rheumatology #RareDiseases #spoonies

  11. 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.

    pubmed.ncbi.nlm.nih.gov/219787

    #SystemicSclerosis #Scleroderma #rheumatology #RareDiseases #spoonies

  12. Patients with #scleroderma who met ASTIS or SCOT inclusion criteria but were managed without autologous stem cell transplant show similar event-free survival to those transplanted in original trials.

    Does this reflect confounders or standard of care improving over time?

    In Arthritis & Rheumatology
    loom.ly/q3uzwLg

  13. #scleroderma en doğal tedavisi yağ enjeksiyonudur ☎️+905322058604☎️+905054925755 #drazimetozdemir

  14. Just came from my last wound care appointment for now. Fingers not completely healed, but out of danger, and I know how to go on caring for them. I want to be all yay! Last wound care appointment! But honestly I am sad, and wish I felt like I had more to look forward to than being careful of my guts and fingers and hoping my lungs don’t get worse. Working on it, I am. Some days I feel more grace and hope than others. Anyway, have a pic of my puppet corner. #scleroderma #processing

  15. Just came from my last wound care appointment for now. Fingers not completely healed, but out of danger, and I know how to go on caring for them. I want to be all yay! Last wound care appointment! But honestly I am sad, and wish I felt like I had more to look forward to than being careful of my guts and fingers and hoping my lungs don’t get worse. Working on it, I am. Some days I feel more grace and hope than others. Anyway, have a pic of my puppet corner. #scleroderma #processing

  16. Just came from my last wound care appointment for now. Fingers not completely healed, but out of danger, and I know how to go on caring for them. I want to be all yay! Last wound care appointment! But honestly I am sad, and wish I felt like I had more to look forward to than being careful of my guts and fingers and hoping my lungs don’t get worse. Working on it, I am. Some days I feel more grace and hope than others. Anyway, have a pic of my puppet corner. #scleroderma #processing

  17. Just came from my last wound care appointment for now. Fingers not completely healed, but out of danger, and I know how to go on caring for them. I want to be all yay! Last wound care appointment! But honestly I am sad, and wish I felt like I had more to look forward to than being careful of my guts and fingers and hoping my lungs don’t get worse. Working on it, I am. Some days I feel more grace and hope than others. Anyway, have a pic of my puppet corner. #scleroderma #processing

  18. Ugh..! That’ll teach me to think I can stop putting k-tape on my oxygen’s that I’ve been using to prevent cheek blisters caused by pressure sores 😢

    I can’t believe how much my cheeks hurt right now, as well as how itchy & swollen everything is on top of it 🥺

    So much owieness… everything touching my face hurts, even my glasses 😣

    I wish there was a for users 😓


  19. Ugh..! That’ll teach me to think I can stop putting k-tape on my oxygen’s #NasalCannula that I’ve been using to prevent cheek blisters caused by pressure sores 😢

    I can’t believe how much my cheeks hurt right now, as well as how itchy & swollen everything is on top of it 🥺

    So much owieness… everything touching my face hurts, even my glasses 😣

    I wish there was a #BetterSolution for #SupplementalOxygen users 😓

    #Scleroderma
    #InterstitialLungDisease #PulmonaryArterialHypertension

  20. Ugh..! That’ll teach me to think I can stop putting k-tape on my oxygen’s #NasalCannula that I’ve been using to prevent cheek blisters caused by pressure sores 😢

    I can’t believe how much my cheeks hurt right now, as well as how itchy & swollen everything is on top of it 🥺

    So much owieness… everything touching my face hurts, even my glasses 😣

    I wish there was a #BetterSolution for #SupplementalOxygen users 😓

    #Scleroderma
    #InterstitialLungDisease #PulmonaryArterialHypertension

  21. Recovery is slow and there is still a ways to go, but having a virtual writing hang for the first time in a while and feeling maybe a little more like myself. Here is Scaramouche. #scleroderma #chronicillness #catsofmastodon

  22. Recovery is slow and there is still a ways to go, but having a virtual writing hang for the first time in a while and feeling maybe a little more like myself. Here is Scaramouche. #scleroderma #chronicillness #catsofmastodon

  23. Recovery is slow and there is still a ways to go, but having a virtual writing hang for the first time in a while and feeling maybe a little more like myself. Here is Scaramouche. #scleroderma #chronicillness #catsofmastodon

  24. I have just been to wound care. Ouch is me. Hand surgeon consult: Yeah, there's not much we can really do; slow, incremental progress is the best we can hope for with scleroderma. After, I had a hot cake with strawberries. Here is Scaramouche, who is an excellent nurse cat. #scleroderma #chronicillness #catsofmastodon

  25. I have just been to wound care. Ouch is me. Hand surgeon consult: Yeah, there's not much we can really do; slow, incremental progress is the best we can hope for with scleroderma. After, I had a hot cake with strawberries. Here is Scaramouche, who is an excellent nurse cat. #scleroderma #chronicillness #catsofmastodon

  26. I have just been to wound care. Ouch is me. Hand surgeon consult: Yeah, there's not much we can really do; slow, incremental progress is the best we can hope for with scleroderma. After, I had a hot cake with strawberries. Here is Scaramouche, who is an excellent nurse cat. #scleroderma #chronicillness #catsofmastodon

  27. I have just been to wound care. Ouch is me. Hand surgeon consult: Yeah, there's not much we can really do; slow, incremental progress is the best we can hope for with scleroderma. After, I had a hot cake with strawberries. Here is Scaramouche, who is an excellent nurse cat. #scleroderma #chronicillness #catsofmastodon

  28. I have just been to wound care. Ouch is me. Hand surgeon consult: Yeah, there's not much we can really do; slow, incremental progress is the best we can hope for with scleroderma. After, I had a hot cake with strawberries. Here is Scaramouche, who is an excellent nurse cat. #scleroderma #chronicillness #catsofmastodon

  29. Well, finished first course of the rifaximin, didn’t make it a full night before cramps, nausea, shaking, faintness, and diarrhea came back after not taking it. So, at least the insurance thing got worked out, I got the pills (for $75) and have started the second course. And my sister is here to help me.
    But, seriously, ugh. And fuck scleroderma. #scleroderma #chronicillness

  30. Well, finished first course of the rifaximin, didn’t make it a full night before cramps, nausea, shaking, faintness, and diarrhea came back after not taking it. So, at least the insurance thing got worked out, I got the pills (for $75) and have started the second course. And my sister is here to help me.
    But, seriously, ugh. And fuck scleroderma. #scleroderma #chronicillness