Raynards type 3 ???

[amandajane76]

Anyone heard of type 3 raynards plz

[Paul_Howard Partner LUPUS UK]

Hi amandajane76,

I'm afraid this isn't something I've heard of before. Have you considered contacted the Raynaud's & Scleroderma association for information? raynauds.org.uk/

[Sher78 in reply to Paul_Howard]

Never heard of it either Paul. Very intrigued...... :/

[Fennella02]

Could it be Raynauds caused by a type lll hypersensitivity perhaps? The only reason I suggest this is because I had no end of problems caused by a type lll hypersensitivity to iron infusions. Just a thought . .

[amandajane76 in reply to Fennella02]

Oh....now its clearer.i wonder iv what they mean is the my raynards has been caused by mctd,

[Fennella02 in reply to amandajane76]

It's all a bit over my head but yes, I think you could be right 😊

[EOLHPC]

Am v glad you've posted your ?s & got these good replies. I'm managing simultaneous raynauds & erythromelalgia too (consciously had these together for 10ish years, but had raynauds from childhood with infant onset lupus). I hope you can figure out more about this and hypersensitivity type lll re mctd

PS just found this link on the subject (& others...I googled: mctd type lll hypersensitivity & quite a few good links turned up):

en.m.wikipedia.org/wiki/Typ...

[amandajane76 in reply to EOLHPC]

Sooo complex.what meds have helped you barnclown ?

[EOLHPC in reply to amandajane76]

Tough question: my issues are so multisystem...due to infant onset lupus going without daily systemic meds until just 4 years ago (am 62). So now I have treatment plans & prescrip meds for almost all systems of my bod. And I continue the lifestyle management that apparently has helped all my life...enough do that am as relatively well as I am now. But the general debilitation has progressed quite steadily & is now relatively advanced.

The greatest help with lifestyle managing my EM (erythromelalgia) has been via the erythromelalgia organisation...their website has great archives:

erythromelalgia.org

They also have an active Facebook page

Otherwise, my feeling is that my daily sle meds do somewhat damp down both my EM & my RP (raynauds): myco + hydroxy + amitrip + pred tapers.

I find hydration is vvvv important re EM & RP....and I slather on l'occitane's shea butter moisturisers

Am v interested in how you get on...hope to learn from you too

XO

[amandajane76 in reply to EOLHPC]

All Dr suggested was to either up amtrip (currently on 30 mg) or retry pregab but I ve had it before and could only tolerate very low dose.what does of amtrip Are you on

[EOLHPC in reply to amandajane76]

Only take 20mg amitrip. before bed each night.

Might be worth asking the erythromelalgia.org gang on Facebook? Here's the link:

facebook.com/erythromelalgia

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I think it may be put into three categories, according to blood serum levels being active. Usually only mention primary and secondary. Type 1,2,3 , stable, decreasing, increasing. (Not necessarily in that order). Raynaud's makes blood vessels constrict, reducing blood flow - although it usually returns in time. Each type I think looks at this, through serum level markers and collagen in the blood. The third doesn't often seem to be mentioned unless you suffer greatly. Not sure if this is true of you? Hope this helps.

[Sher78]

Intrigued by this as my Raynauds appears all year round (get the colour change in fingers, toes, lips & sometimes nose, as well as the numbness). Used to take Valsartan to try & ease it but had too many side effects from it soi came off them.

[Hidden]

I do too but the colour returns. I think in some people the venous return is so slow that the veins are damaged. I don't think I'm there yet just a lovely colour.