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How many dx with RA/Scleroderma have Raynaud’s? My fingers get so cold when I’m holding a glass with ice in it or even going outside when it’s 60 degrees. They do not hurt just get really cold and redder than usual. Anybody else who has had this experience?
Yes Raynaud’s is a common Scleroderma symptom and often one of the first. Raynaud’s and carpal tunnel were my first signs. There is primary and secondary Raynaud’s and there is medication you can get if it’s severe. It can be very painful and damaging in severe forms.
kateSystemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, CRaynauds is very common with scleroderma -it also shows up to a lesser degree in RA—any family doctor or in internist etc can prescribe a calcium channel blocker which helps the situation greatly —
I don’t think I have typical reynauds but if my hands are exposed to winter cold while I’m also doing some sort of activity (like shoveling) my fingers swell, turn red and itch.
Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinRichie, tell me some about your journey. Do you have systemic or diffuse? How long have you been on AP? You seem to be in remission and living life. So u have no doubts that’s this protocol saved your life? You have no lingering heart or lung issues? Thank for playing 20 questions with me!🤪
Hi I had systemic -been on AP for almost 20 years –full remission and no lingering effects at all —There is no question it saved my life –We sure are living life !!!!
Exact same story as Richie.If I remember correctly we started AP a couple months apart.Richie’s SD was probably cause by chemical called Benzine.Mine could have also as I got a snoot full of the stuff 8 hoyrs a day for almost 2 decades.On top of that I had/have Lyme.It took 2 years for my body to completely recover and close to 4 for my clawed hands
Yes Shannon,clawed hands.Do you not know what SD does to us?Tendon friction rubs are no fun either.I will never ever stop my mino/doxy as I never want to be in that place again.
So what kind of protections does everyone do for the raynauds. I have found that mittens work best for me. I have a radiator heater that i heat my gloves and shoes on before i go outside. i have reusable warmers that i insert in my gloves before i leave to go anywhere. Even in Key west which is warm in winter, i still experienced the numbness and white skin.
Richie,
When you started 20 yrs ago, explain the process, like, how long had you been diagnosed before starting and what symptoms we’re you experiencing, how often did you do the IV treatment and did u take Mino or doxy, how long were you on the treatment before you showed progress and how long before most symptoms we’re gone. Thanks, AprilHi April;
Alas Richie died a few months ago but not from SD.I guess I am the only oldie left.Have you tried Nattokinase? It disolves the clots called Rouleaux that clog the capillaries.Near infrared light works well also and feels so good.It stopped my hair from falling out.Also helps the skin.You can get it on Amazon I like Nattomax,available on Amazon also ,I take one a day but oftem forget for many in a row and have had no problem.Are you aware of Chocolit’s work on the Inspire site.He explains Rouleaux ….or you could just Google the word.
https://myersdetox.com/single-infrared-heat-lamp-therapy/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6043915/
https://www.nature.com/articles/srep11601Lynn, I did read about Richie shortly after i sent that email. I have been trying to read the whole forum to see if i can gleam any good info for myself. I is a long process. I also am trying to copy as much info as possible into a word document so i can try and convince my doc at the VA hospital to either treat me, or approve treatment in private sector.
Thanks Lynn,
April
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