Back to GP...again....: Still waiting... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Back to GP...again....

tcogb profile image
6 Replies

Still waiting for my appointment to come through since my referral to the Royal Free. Meanwhile it's so difficult to get to see a GP of my choice and I have to wait weeks sometimes so I give up and have an appointment with someone else which turns out to be a complete waste of time. Grrrr. I had a blister and red inflamed patch on my lower leg literally appear overnight 2 weeks ago - went to the doctor who said it was best left to the specialist and now it has burst leaving a large scab and the surrounding skin is swollen, inflamed, sore and red so I think there's an infection- the only difference to how it is now to when I went to doctor initially is the blister has burst so it's not getting any better but hasn't spread (outwards anyway). FInally get to see GP of my choice on Thursday so hoping they can tell me what's going on and treat my leg. Also I was finally prescribed Nifedipine but it is having no effect, primarily I think because the dose is far too low! I was presrcribed 5mg 3 x daily and I see from the Royal Free info they reccomend Nifedipine Retard @ 10mg-20mg 2 x daily or Nifedipine LA 20mg-30mg daily. The Raynaud's is dominating my life as I avoid going out, can't work outside, can't do many of the things I enjoyed and just simple,things like getting washing out of the machine can set off an attack .I have a hot water bottle and heated bean bag constantly with me and need to make sure I always wear long sleeves, wrist warmers and gloves both inside and outside. My gloves and hands need to be warm before I go out otherwise I get an immediate attack. Having a steering wheel cover and a hot water bottle with me in the car have helped a lot in preventing attacks if I need to drive anywhere. And that's just the Raynaud's! Have many other symptoms to cope with and sometimes feel I am falling apart....Roll on my appointment with The Royal Free please!

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6 Replies
Blue-Bunny profile image
Blue-Bunny

See this is why I tell people my Raynaud's isn't that bad. If I had blisters, it would drive me nuts. You're going to have to go through the Nifedipine slowly, too much all at once can be quite a hit to the body, it needs to get used to the dosage.

Also, Nifedipine isn't something that reacts instantly. It's one of those drugs that needs to build up in the system to really be effective as it needs to take control of certain systems in your body to enable it to do its job properly. I saw a reaction in two weeks but some can take longer.

mrsqwerty11 profile image
mrsqwerty11

I agree Ravenside, painfully enough without blisters, sores, fortunately mine must be mild now, bare with the Nipedine if you can.I take 30mg of the la nipedine per day and keeps attacks at bay, been taking it 9yrs now, however I did try reducing to 20 mg per day a few yrs bk and within 2wks symptoms showing more, was soon bk upto 30 mg and settled attacks, long process with gp, rheumatologist, hoping you get sorted soon..

I have found that the best solution to the Raynauds is to keep at least one room really warm and to try not to skip meals.

All the pain and infections seem to be at least reduced if the temperature is correct for you. Everything else is just chasing rainbows.

The need for adequate heat should be something that is medically recognised in my opinion.

Hi Delazey. It's worth waiting for the appointment at the Royal Free. They are thorough with investigations. I spent the whole afternoon there last time

AliW profile image
AliW

Bless you this all sounds so horrid - you are very brave - only the Raynauds sufferer really knows how horrid it truly is .... Yes the RF will be worth waiting for .. but yes take a book & prepare to wait ..their clinic is busy & slow but that is becasuethey are thorough & you do not feel rushed .. you feel you DO matter & how you are IS a concern to them . Good Luck xxx Roll on Spring :)

fairygoddess83 profile image
fairygoddess83

Hey, i really feel for you. I get the same but minus the blisters..I was put on Nipedine on a low dose to start with but had no effect so i went back and told him i wanted to up the mg.. Which he agreed... after a few more weeks went by spent living on my bed freezing!! i decided to do what it say on the raynaulds site about treatments.. which is try one for 3 weeks if ill effect stop wait a few days or a week and try another.. also go to a earth food store and have a chat with someone from there as im sure they will help you find some natural ways to help... xxxxx

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