Dealing With Facial Changes

[LeLe_]

hi all, I’m quite new to this & was hoping for some advise. I’m 34 and have been diagnosed almost 4 years now, I’m struggling to come to terms with all the changes scleroderma & raynauds can cause. I’ve become very self conscious with regards to my skin complexion becoming lighter in patches & my lips have become very thin & dark.. has anyone had any procedures/ fillers etc ..did they work.. are they worth getting. I’d really appreciate any advice. Thanks

[OldTed60]

hi LeLe. Sorry you’re experiencing this disease at 34. I can’t help with fillers, Botox etc but hoping others will. I’m 61 so am not that bothered by the facial changes from an appearance point of view but they are starting to impact on my teeth, lips and nose and this worries me more. I do think iloprost infusions and Mycophenolate have helped keep it all at bay apart from severe GI involvement and related complications. Are you on any treatments to slow down the scleroderma and reduce the impact of rsynaud’s?

[LeLe_ in reply to OldTed60]

Thank you for responding, I’m taking mycophenolate 2000mg a day & 400mg hydroxycloroquine a day + niphadamine (please excuse spelling) I’ve also just stopped taking steroids.

[Jaq1971]

hey Le Le I’m 52 and have both Botox and fillers it has helped me massively I do still have patches but people always say oh you don’t have much skin involvement which can be a blessing and a curse as I have to explain I’ve been having fillers and Botox for five years my consultant has warned me there are risks as it could cause scaring if done incorrectly but as to now I have nothing but positive results it is a personal choice I guess hope this helps

[LeLe_ in reply to Jaq1971]

Thank you for response, this is good to know that it’s a personal choice & also that there could be risks

[CLSH]

Hi, I agree with OldTed the most important thing is being on the right treatment to slow disease down. However …

I was diagnosed 3 years ago and the area around my mouth and lips has aged 20 years. Because of this I was referred for fat transfer treatment.

Indeed I had the procedure on Wednesday and I am currently recovering. I am extremely bruised and swollen and only time will tell if what I’m currently going through will be worth it.

I understand your concerns it is a very hard disease to live and deal with.

[OldTed60 in reply to CLSH]

From your bio I think you’re about 7 years younger than me and maybe this factors into how we feel about our appearance. My lips are a complete mess and I have noticeable perioral furrows but never sure how much of this is scleroderma weight loss and sun damage related as lip biopsy showed dysplasia. After Steven’s Johnson reaction in lips and mouth after a salivary gland and 4 skin punch biopsies for dysplasia plus chemo cream treatments - I'm now definitively diagnosed with SSc. I find I just can’t bear the idea of any more messing with lips or mouth as soo sensitive - even dental stuff is hell on my lips for pain now. But I really hope the fat transfer works well for you. I notice the spring edition of SRUK magazine has a young woman with SSc who had one and shared her very positive experience of this in her story Xx

[LeLe_ in reply to CLSH]

I really hope the procedure works out for you. It’s something I’m definitely going to look into, thank you for responding

[Jules1821 in reply to CLSH]

Hi CLSH, how are you recovering and were the results what you expected. Would love to see a before and after picture.

[Kilncadzow]

Look on the positive side. I know you’re quite young but I developed scleroderma slightly earlier than you did but I didn’t develop any lines / wrinkles! Even by the time I recovered in my late thirties I still didn’t have any. Even now in my late seventies I have far fewer lines / wrinkles than my friends. I did lose my dimples but they did come back and are still there

I was treated with Penicillamine which worked wonders with no side effects. I don’t know why it doesn’t seem to be used now.r

[Lyndabickley]

Hi

I had fat transfer at The Royal Free twice. The first time it was good for about 9 months.?The second time I got an infection which was very painful and the effects were not so good. I have been offered further treatment but so far have not taken it up. I have one tooth which protrudes slightly and stops my mouth closing fully so I dribble a bit and feel embarrassed eating in public. I probably need to have the tooth removed but I’m not sure at 74 it’s worth having the fat transfer unless removal of the tooth doesn’t solve the dribbling. Hope you find a good solution.

[LeLe_ in reply to Lyndabickley]

I’ve only just heard about the fat transfer via the website, I’m currently under royal free hospital, I may discuss this option with my consultant. Personally when it comes to procedures I’m a bit of a wimp but it’s good to know I have options. It’s soo unfortunate that scleroderma affects us in soo many ways I recently had issues with my teeth & had to have an extraction luckily it was a success as my mouth doesn’t open very wide either. I really appreciate your response thank you

[Lion-yellow057 in reply to LeLe_]

I also have same issues with skin patches thin and black lips. Now i have teeth issues started please explain this issue how you solve this.

[Bkart in reply to Lion-yellow057]

Hi Lion-yellow, I’m afraid a lot of people seem to have issues with their teeth if they have tightening facial issues, me included. My front teeth have moved forward and overlapped bridge work at the side causing it to crack and drop out, leaving only stubs of teeth. These had to be removed leaving a three tooth gap, I now have to wear a denture as upper bone in jaw has worn away and would need a bone graft from hip to replace bone to support implants, just too risky an operation for me and out of my price as the NHS will not cover this anyway. You will need to register with a Dentist, preferably one who understands Scleroderma and how facial tightening affects the mouth and teeth. I feel from my own experience you can’t really solve the dental issues as they will be ongoing but a good dentist will certainly help and advise you in that journey. I suffer from dental phobia so I know how hard it is but in order to maintain speech, eating comfortably etc., anyone with these issues needs to get help asap, don’t delay as I did. Even with small mouth opening dentists can work around this, my dentist was more knowledgable and understanding than my GP.

[Helenlouise40]

Hi

I was diagnosed in my late thirties around 6 years ago. I have a big issue with skin redness . Make up can make a huge difference if you find the right products. Your issue is different to mine but the skin patches could be covered with make up maybe. I wound recommend the changing faces charity, they have a website and you can ask for an appointment for specialist help with make up. They are also a great charity to seek support from to deal with facial differences. I find this and the mental health issues that come with the disease can sometimes be overlooked and it can be a huge part of it. And this site is great as everyone is so helpful and understanding . ❤️

[LeLe_ in reply to Helenlouise40]

Thank you for responding, I will have a look into changing faces charity. I really appreciate all the support