Cold weather prep

[lennyplus4]

Hi everyone, our season is starting to begin cold weather 😪 Anyone have suggestions for pre-winter Raynaud’s- swelling /aches/pains/stiffness? I have my heating blanks, compression gloves, prednisone, & lotion to keep skin moisturized.

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This isn’t meant to sound as cute a super it does, but booked my summer holiday end of sept / just back from sunning myself in Nice which staved it off an extra week!

[Jen3131]

I am currently trying the Royal Free’s supplement suggestions (vitamin C&E). Next is a GLA prep (starflower or evening primrose etc). I can’t tolerate fish based products so struggling to find a GLA with the recommended dose quantity. If anyone else uses a vegetarian GLA product, what was the make etc please? Thanks.

[lennyplus4 in reply to Jen3131]

How is that to help? I see help with amuinsystem.

[Jen3131 in reply to lennyplus4]

I haven’t a scanner so will try and summarise the info sheet - Treatment for Raynauds and Digital Ulcers in Scleroderma:

All patients with Scleroderma - recommends Vit A & E due to their antioxidant effect which protects blood vessels from scleroderma damage.

GLA 320mg daily (limited research but many people find it effective for Raynauds - which is in Evening Primrose Oil, Starflower and linseed/flaxseed and fish oils. If no effect after 3 months, try something else.

I can’t find a high enough dose without taking multiple tablets per day and that’s expensive hence my query.

Then there are other things recommended - Gingko Bilbo’s 240mg daily and ginger 2000 to 4000mg daily ++ other stuff with a warning not to take if on warfarin or blood thinning meds.

Then it lists prescription drugs and therapies.

I am on no meds at the moment and a new patient at the Royal Free. They wanted me to try OTC stuff to see if prescription stuff can be avoided.

I am happy to try anything and put off prescription drugs as long as I can.

[lennyplus4 in reply to Jen3131]

Awesome thank you. My doc never told me any of this or anyone else.

[Jen3131 in reply to lennyplus4]

Neither did mine until I asked to be re-referred to the Royal Free. It may or may not work but at least it’s a non prescribed alternative for now. 🤞

[sueobrien in reply to Jen3131]

Thanks for sharing this. I see what you mean about 320mg meaning many tablets. I have some 500mg evening primrose oil tablets i got in lidl previously ( to treat breast pain) and they have 40mg of GLA in each so that would mean 8 tablets a day . I see Numark on the internet have evening primrose 1000mg tablets so i guess they will have 80mg in them and cost about 1.50 for 30 tablets . I will definitely resume taking the evening primrose oil to see does it help.