Raynauds??

[Karen1983]

Do you think this is raynauds my feet are exactly the same today

TIA

[Barnclown]

Hi Tia

My hands (& feet + parts of face, ears) look like this most of the time year round during my daily cycle of colour shifts & changes. My understanding is that my version of this look is due to typical overlapping causes : SLE & SS arthralgia & neuralgia & relatively mild vasculitis + simultaneous raynauds & erythromelalgia and several other issues.

When my chief of Rheumatology clinic looked at my hands the other day she offered illoprost infusions (vasodilation) which I said no to because this aggravates my erythromelalgia. For some reason, my daily cocktail of lupus meds (hydroxy + myco + pred + amitriptyline) is helping to damp down my raynauds a bit ...but actually I think it's more the daily low dose steroids that are making my erythromelalgia more dominant. I feel generally "warmer", even in the colder spell. But my hands still look the way your hand looks in this pic

🍀🍀🍀🍀 coco

[Karen1983 in reply to Barnclown]

Thank you barnclown for your reply i am very much going through the diagnosis process atm. I have livedo rectilarus and query raynauds. Im "probable SLE' and registrar rheumy refused hydroxy at last appointment focusing on fibromyalgia.

Just dont know where i am with everything to be honest ive been off work last 8 months as i feel my body needs help (drugs). And not getting anywhere

[Barnclown in reply to Karen1983]

Am vvvv much feeling for you Karen. 8 months off work feeling v poorly and not getting much help is really hard

Your words give me the feeling you've got the hang of how this process tends to play out. my feeling is that you'd do well to prepare your case for a trial of daily hydroxy at your next Rheumatology clinic. If a registrar refuses, it seems to me you'd be totally reasonable to ask for a second opinion from the clinic chief.

I'm lucky never to have been fobbed off with fibromyalgia. Others here have lots of experience of dealing with this diagnosis in such a way that it doesn't stop them being prescribed the meds they really need. If you haven't already, might be worth posting a question specifically about this

Take care, Courage...you can & will get the help you need if you keep good logs & pics of your signs & symptoms + become as informed as poss on all this stuff...all that can give you the confidence needed to persevere within health system protocols

🍀😘🍀😘

[soootired]

I was told by a different rheumy I'm seeing for a suspected auto inflammatory condition (which I don't have - they say it's text book lupus!) That some doctors need a push.

Regarding hydroxy, I'd definitely push for a trial. It takes a good 3 months or more to get going but it was a bit of a wonder drug for me! I went from using a walking stick to not needing to, within a 3 month period!

It's considered very safe, they've used it for many years, so low risk to.

I hope you get somewhere soon.

Take care and keep us informed. Xx

[Lupiknits]

Karen, my hands and feet look like this all the time, and my nose matches when I'm really cold. I have a definite diagnosis of Raynaud's and "some kind of auto-immune thingy" (to quote my GP). I was started on hydroxy quite quickly, and, yes, push for a trial of it. Hasn't done anything fir Raynaud's but has eased other problems.

[Karen1983]

Thank you all so much for replying to me i am most certainly going to push for the hydroxy at my next appointment.Thanks for your hints, tips and info i truly would be lost without this group xx

Wishing you all the best too

[misty14]

Hi Karen

Your hand looks just like mine and I have Raynauds and livedo reticular is

I take Adalat that has helped my circulation no end. There are lots of treatments to try. I too have an immune illness as well and Raynauds can sometimes pre-date another illness by several years. Sorry to read your having diagnosis problems at the mo. It can be a long hard road but you will succeed. Good luck for your appointment. Have you had your ANA tested?. You should as you have Raynauds and other symptoms. Keep us posted. X