Rheumy Today

Well, shock and gasp, I actually got an appointment when I should have! A delightful junior doc who said halfway through "I don't need to tell you much at length because you seem clued up". That was after I showed him my legs and asked if those blotches were livedo reticularis. Thank you forum!

It's a matter of carrying on as I am doing as there was no change in bloods four months ago. They'd like to do another nailfold capilleroscopy and I'll get an appt for that. We discussed the pain, but I'm mostly on top of that. SPF50 as well as hiding from the sun helps with the malar rash ( I didn't tell him I spend a lot on rosascea facial stuff for sensitive skin because that seems to be like discussing lipstick)

We discussed my weight, which remains about 15 kg under what would be good. I explained my experience of dieticians hadn't got me far. I'm starting to have some bowel problems, but they can wait, for now.

Overall, it's currently a matter of getting straight onto my GP or rheumy if I have any sort of flare.

The most exciting thing ( for me) is that I've been given a small dose of fast acting nifedipine to see whether my blood pressure can tolerate it. I'm hoping very much that it can, and helps the Raynaud's which seems to hang around even on a relatively warm August day. Having a cold nose as well as hands and feet is not fun.

Going to try the nifedipine now. Let's see!

10 Replies

  • That seems have been the cake with the cherry on top!!!! Hope it lasts!

  • With cream, Pro x

  • Oooops - thought it and forgot to say it!

    You should have seen the icecreams I was standing behind on Sunday! I wasn't sure they'd survive out of the shop - especially the ENORMOUS squoosh of cream on the top!!!!!!!

  • Oh, now I want one, but nothing beats the Italian stuff!

  • I go as often as I can persuade OH to go into town - one scoop in a cup and then I don't feel guilty. I've waited all summer for their crema catalana (what they call creme brulee here) so have had 3 already. It's better than a real creme brulee in a restaurant. Tried a taste of liquorice - bit like children, I like them but couldn't eat a whole one...

    It was the mega Italian holiday on Tuesday and most of Italy was here for the coolth of the mountains (relatively speaking that is). And our icecream shop was closed - how's that for self-confidence?

  • Glad you had s good trip to the rheumy, it does lift your spirits 😀 . I was just wondering what cream you are using for the rosacea ?

  • For the rosascia I use sensitive dry skin products from Avene or Bioderma. Avene do a concentrated cream, then I top up with their usual cream, then I slap Nivea on top. Avene do a cooling anti-redness mask, too. The Avene antirougere creams are very slightly tinted green. Never use water or soap, but micellar water to cleanse. All of this works for me, but everybody's different. I hunt for these on Amazon Warehouse deals.

    The one time my GP prescribed something for rosascea, I tried it on my leg first. Ripped my skin off, but it clearly works for others.

  • I have been using la roche posay rosaliac intense for about 8 weeks with a tiny difference

  • Sounds quite a cheering day, lupiknits. Let us know how the nifedipine works.x

  • A good appointment makes everything so much more manageable, I'm pleased for you. Have you tried supplements on prescription for your low body weight? My GP prescribed them for me and they did help a bit.

    Good luck with the nifedipine xx

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