Raynards

[Tm64]

Hi I have recently been told I have raynards my hands are really painful even when warm I have ulcers on the tips of fingers that aren't healing well I have already had three lots of anibotics I am also taking nifedipine 3 times a day

My mouth is constantly dry even while drinking lots would be grateful of any suggestions

Many thanks

[overnighthearingloss]

You could try boosting your vit c levels. I have noticed some improvements when I do that. But you have to keep it up to see results.

[Tm64 in reply to overnighthearingloss]

Thank you I have started to take pure cod liver oil recently

[tall-tim in reply to Tm64]

Cod liver oil covers vitamins A and D.

Sainsburys do fizzy VitC+Zinc tablets - three tubes for the price of two.

[Tm64 in reply to tall-tim]

The cod liver oil I have started to take is the liquid orange flavour one plus omega 3 fish oil it says it supports vitamin d & c

[tall-tim in reply to Tm64]

[lindyanne]

Sorry to hear of your troubles I can offer a little advice if it helps. I have raynauds with scleroderma diagnosed 10 years. I have iloprost infusion at the Royal Free twice a year but can't tolerate any other medication such as nifedipine. I do get ulcers and get can take up to two months to heal. You can get impregnated dressings from your hospital or pharmacy they do aid healing and make them much more comfortable. Only use breathable dressing such as melolin with micropore tape to keep in place and then a cotton finger bandage gives cushioning as they hurt SO much if you knock them. Leave them open at night if you can tolerate it. Have fresh ginger root in hot water and warm your gloves before you put them on. Put hand/foot warmers in gloves and boots I don't go out without them. Go online and get 'little hotties' they're half the price of some. My specialist scleroderma nurse at the Royal Free has a dedicated helpline so I strongly recommend you can see if your unit can offer you something too. Roll on summer!! Good luck.

[Mummagee in reply to lindyanne]

Hi lindyanne, I also go to Royal Free for Iloprost, I may already have met you, but am terrible with names and on here with 'Nick' names it's even harder. The only thing is I have to go on 11West as I have continuos Iloprost at a very low dose as My body doesn't tolerate any higher. Years ago I used to go to P.I.T.U. when they opened at night , I'm still in contact with some of the staff, some no longer work there but I have remained friends with them as I've known them a long while. I have Diffuse Systemic Scleroderma . If you ever feel like a chat or compare notes ( not literally ,I'm organised but not THAT organised !! ) I would be happy to do so.

[Tm64]

Thank you for your advise I am waiting to have the infusion hopefully that helps I will try anything to help I had never heard of raynards till a couple of weeks ago so any advise is really helpful

Thank you again

[zenabb]

You may need an Iloprost infusion to dilate your blood vessels. Because of our poor blood supply things take a long time to heal.

[Tm64 in reply to zenabb]

Thank you I am waiting for my appointment for the infusion

[judyt]

Be very aware that ulcers on fingers can very easily turn to gangrene and then you are in real trouble. Don't waste time asking for help or next thing it will be too late. I had correspondence recently with a lady who didn't really know much about Raynaud's and how to look after herself and she has already had some fingertips amputated.

[Tm64 in reply to judyt]

I have been the doctors and already had three lot of antibiotics doctor said they do take a long time to heal

[tall-tim]

I have Sildenafil (Viagra) prescribed to boost circulation to my fingers, and it has been working well without side effects for my cold fingers and ulcers. I said 'no' to Iloprost because of the side effects, and I asked for Sildenafil after I had done some internet research. Luckily they gave it to me.

See, for example: sclerodermatt.org/articles/....

Good luck.

[triumph in reply to tall-tim]

Im on sildeafil 50mg x3 you can actually feel the blood pumping through your fingers,i avoid taking it late at night as it keeps me awake as im buzzing.

[Tm64]

Thank you for link

[overnighthearingloss]

Just thought I would report back.

It might just be coincidental but I think my experimenting with high dose vitamin c might have provided healing for some longstanding finger ulcers.

I was taking high dose vit c for a while dosing several times a day. You are taking too much if you get gassy or lose bowel function but our bodies cant make it and we get rid of any excess.

I was seeing better skin conditions overall but the ulcers wouldn't completely heal. Then I added a zinc supplement and there seems to be some real positives.

Several fingers are markedly better.

There is still sensitivity in the fingertips but I am hoping that will also improve over time.

I was almost refered to a plastics team in December as one finger in particular was looking really bad and potentially gangrenous.

Take care and don't take unnecessary risks but thought it was worth sharing

[sweetsister]

Ask your dr to give u minimum dose of prednisolone it help to heal ur ulcers

[overnighthearingloss]

Ok I know it has been a little while but I think high dose vit c has indeed helped in healing my finger ulcers. There were additional breakouts along the way but really do think they are not just healed but that new skin does appear to be forming where the ulcers were.

I hope that this information will be useful to others

[triumph]

I had ulcers on finger tips so painful,my doctor at hospital put me on sildenafil and they healed up after a week.