BOTOX - How do you go about getting it?! - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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BOTOX - How do you go about getting it?!


Hi, I have systemic sclerosis and raynaud's and get severe ulcers on my fingers that just won't go!! I'm on viagra at the minute, but only for a short period. I've seen that some people have had BOTOX and wondered how they went about getting it done? Ashton x

16 Replies

I thought that Botox was not advised for us. Perhaps you can get better advice from the RSA.

Hi Ashton, I have had BOTOX in my hands. I was offered it last year after having a severe ulcer on my index finger for 6 months. I went in Hospital for Iloprost and whilst I was in my consultant arranged for me to see a plastic surgeon with a view of cutting into the ulcer and cleaning it inside but she said that doing that would only make it worse and offered me BOTOX.... I was also put on Viagra for 6 weeks to help clear the ulcer.... So I had Iloprost, IV antibiotics, Viagra and Botox which eventually cleared the ulcer ... I have had the botox 3 times now but the tip of my index finger is swelling again but no ulcer has formed yet !!!! Will I remain Ulcer free - god I hope so. This is the test for me now with the BOTOX.... Plastics only use it at the moment at my hospital but I dont think it is widely used you will have to ask your consultant. Obviously, it will not work for us all but I am giving it a try - watch this space. Oh by the way I have Raynauds and Scleroderma plus other Auto Immune conditions and just been dianosed as having Pulmonary Hypertension. I have had Raynauds -diagnosed when I was 17 and Scleroderma when I was 40 but now know I had the effects of Scleroderma in my late 20's I am now 55. Take care and warm xx

lifeforce in reply to Anteater

Iwas diagnosed with scleroderma at 42, but as you said I had the symptoms years before. I am now almost 53 and am grateful to get up every day.

You need to discuss this with your rheumatologist. It is still early days for Botox in scleroderma but is of interest to researchers. More needs to be done to find out the true benefits.


I have all the above and have been advised against Botox. My left index finger which is the worse for ulcers has been amputated 3 times now. Changing the subject my lips have got thinner and my mouth smaller and so is puckering - I have been offered to have tissue transfer from my bottom to my lips - still undecided. Look after yourself x

nannysue1950 in reply to Mode

Re lips - don't wish to be rude but this can't just be for cosmetic reasons. Will this help to improve how wide you can open your mouth? My mouth opening has got smaller over the years and I, too, have very small 'mean' lips and the puckering all round (looks like I have smoked 20 cigarettes a day - but I've always been a non-smoker). Will be very interested as to what you decide and then how you get on. Please keep us all informed. Best of luck to you whatever your decision.

Mode in reply to nannysue1950

No it's not just for cosmetic reasons, I have all the above you have just written and I find it hard to open my mouth wide enough at the dentist as well. But having it done would boost my self-esteem !! As I said I'm still undecided. x

nannysue1950 in reply to Mode

Yes, I have to go to specialist dentist because of small mouth opening. I'm dreading if I ever need work on my back teeth!! You're quite right re self-esteem. I always feel that I look mean and miserable whereas, in fact, most of the time I'm feeling quite cheerful. How major would this operation be? What are the drawbacks, if any? I really am very interested - it has never been suggested to me and I'm wondering if it is something I could speak to my rheumatologist about. As I said before, please let us know what you decide and how you get on and BEST OF LUCK whatever xx

lifeforce in reply to Mode

I have lost most of my full lips as well.I have recently been having dental work done and my poor dentist told me I have the smallest mouth opening her has worked on,but he is a good guy and does not give up on me. Even though the overproduction of collegan keeps most wrinkles from happening it sure does not around the mouth. I guess if it did though we would not be able to speak.

lifeforce in reply to Mode

with the poor circulation and slow healing we have, I would be very careful. Good luck.

This is of great interest to me as I have the same mouth features that you both have described. I'm starting to get very shy about looking people in the face, I feel deformed. Keep us posted on this.

I have been taking viagra for three years and I did do the botox injections in my hands. I actually found a pain specialist that tried it. Unfortunately, I did get approximately 24hours of relief from the Raynaud's. But then my hands were so swollen I could barely move them. So, after 24 hours it showed no help. I did this multiple times. Sorry, if you chose hopefully it works for you. My doctor did tell me that it helps some and not others. Everyone is different, hopefully the least amount invasive will provide you with some benefits. I also did stellate ganglion blocks, approx 6 times. Very little effects for my self. They told me the more I did them and the more frequent the better benefits. I tried but I couldn't handle it anymore!!

My hand specialist tried this with me for severe gangerene in my fingers to help with pain it worked for about two day;s ultimately my fingers were amputated this year to the first joint, both small fingers at the same time. Contact a person who is a hand specialist and also is up to date with new procedures. sorry for your ulcers I know this pain all to well! good luck. I don't know where you live but I live near Baltimore and my hand specialist is Dr. Michael McClinton.

RE: Botox and the lips...... I have the same features im and around my mouth. It can be actually difficult to even use a straw because my lips are ridgid. Kissing...thats a whole new ball game. I love to kiss and it seems very difficult to enjoy that even. I am very self constious about my mouth area. For crying out loud I have had 4 kids and bad stretch marks and a baby belly that will never go away, but I am more worried about my mouth area... LOL. Let me know if any of you do try the botox there... I was considering checking into it. Dang this scleroderma!!! Hang in there everyone... Im so glad I found this support site. What a blessing!!!

I would be very careful with botox , with scleroderma your body sees everything as an injury and starts producing scarring on the inside.I would talk to your rheumie before doing this. Good Luck!!!

Hi all, I had a fat transfer to my mouth area over 2 years ago because of the reduced mouth opening and no top lip and altho done by a top surgeon it infected and ended up with 4 courses of antibiotics n getting it eventually drained. It was not a success at all and I still have scar tissue for the op. I’ve heard loads of success stories for this procedure- at least in the short term so think I was very unlucky. My mouth is a terrible state and I’m very conscious. At 48, I look more like 88!! This has been a very hard part of the disease for me as with everything else it throws at me I try to remain upbeat but this really gets me down. My max fac Consultant now investigating hyaluronidase injection for it for me. Google hyaluronidase for microstomia. I’ve not heard yet if I’m a candidate but after very painful fillers with very little impact I would be keen to try something different.

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