Derma fillers: Hi all, I was just... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Derma fillers

k9lover58 profile image
17 Replies

Hi all, I was just wondering if anybody has had any derma fillers especially Sculptra with this connective tissue disease? I am so depressed that I can't even look at myself in the mirror and refuse to have my picture taken let alone go out other then to my daughters houses.

Thank you for reading and any advise would be amazing, k9lover58

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k9lover58 profile image
k9lover58
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17 Replies
BendyClare profile image
BendyClare

I had Dysport about 12 months ago, before I knew of my EDS/HSD/Reynauds diagnosis and I had no immediate ill effects. My symptoms have got dramatically worse over the last 8 months though, and I’m not sure if it is related so I’ll be following along for other people’s advice. I’d love to get more.

k9lover58 profile image
k9lover58 in reply toBendyClare

Thank you so much for your reply. Did you as your doc if it was ok to have more?

k9lover58 profile image
k9lover58 in reply tok9lover58

I am assuming that you are referring to Dysport Botox?

k9lover58 profile image
k9lover58 in reply tok9lover58

I have been using Dysport for over 10 years and have never had a problem and it was cleared by my doctor. I want to try fillers because of volume loss in my face but can't get an answer anywhere regarding the product Sculptra :(

BendyClare profile image
BendyClare in reply tok9lover58

Ah sorry, yes I meant dysport botox. I didn’t ask my Dr. good to know you had that particular one cleared. I haven’t actually even heard of Sculptra specifically 😊

MissusTee profile image
MissusTee

Sorry to hear that you're low. I have read a few articles now that link the rise of autoimmune conditions with dental implants and silicones, so I would urge caution.

k9lover58 profile image
k9lover58 in reply toMissusTee

I know about the silicones and wouldn't go near them however this product doesn't have silicone However I still can't seem to get a definitive thumbs up or down. This product stimulates the bodies own collagen and actually takes 3-4 months to show the results and you need approximately 3 courses of the treatment. Thank you for your advise Missus Tee :)

MissusTee profile image
MissusTee in reply tok9lover58

I guess what I'm trying to say is that when you introduce something into your body, that isn't part of your body, then your immune system starts an immune response, hence the rise in autoimmune conditions.

k9lover58 profile image
k9lover58 in reply toMissusTee

I know and hear you however I am so depressed I am at the point of no return. I don't want to carry on the way I am. I would rather have quality of live then quantity after living with this condition for over 30 years. I don't mean to upset you or anyone but I have to tell it like it is. There is so much more to this story. I had a 1 month old and was pregnant with my second when they told me I had a massive tumour on my ovary after my last ultrasound. I decided to continue the pregnancy and gave birth to my second daughter. At that point I was told that I had stage 4 ovarian CA and was given 6 months to live. I told them to tell me this when my girls have grow up and graduated college and that I would buy green bananas, LOL! I had a trial chemo & at that time I was given a dose that was 100% stronger then they use now an have been paying the price for that medically however I wouldn't change a thing because both my girls have become successful. Sorry for the useless info I have spewed just a bit of why I am so depressed. Wish all the very best and pleased never get this depressed :) <3 <3

MissusTee profile image
MissusTee in reply tok9lover58

Don't worry, it sounds as if you have been through a lot, all the more reason to look at things that let you smile including your children. I have a history of severe mental health problems, and have found cbd oil to be helpful, as well as magnesium.

-missymoo profile image
-missymoo

Hi all

I’m really interested in fillers too, so will be watching for responses. Just out of interest, I see some talking about avoiding silicons. Why is that?

k9lover58 profile image
k9lover58 in reply to-missymoo

Definitely avoid any silicone injections as our autoimmune diseases cause a horrible reaction and on top of that horrible lumps will form where the silicone was injected. I don't know where you are located but here in the States they have this new product called Sculptra (no silicone) and they even use it on people with HIV/Aids and it has never been a problem. What it is made of is the same material the docs use in dissolvable sutures and what it does is it fills out all the lines and hollows from this disease. It enables your face to produce the natural collagen. There is one minor down side as it takes 2 to 4 months to work but will last up to 3 years after that you get a top up. I have seen people I know who have had this done and they look 12-15 years younger however they don't have what we have. It is better know as the non invasive (liquid facelift). Check it out and ask your doc what he or she thinks. Best of luck, :)

puggyboy profile image
puggyboy

Hi, I remember reading a while ago about a trial at the Royal Free, where they were injecting a mixture of stem cells and fat cells harvested from elsewhere on the body, in order to regain volume. Apparently it showed good results. If I can track down the info again, I'll post it here :)

k9lover58 profile image
k9lover58 in reply topuggyboy

Thank you for that :)

puggyboy profile image
puggyboy in reply tok9lover58

Hmm, can't find the original study, but there's some blurb here:

sruk.co.uk/about-us/news/we...

Seems that Peter Butler at UCL did the work I was referring to - here's a presentation about how it works:

youtu.be/uzmTwfNNOn4?t=468

Have no idea if this is available where you are, but might be worth investigating?

SherrySanford65 profile image
SherrySanford65 in reply topuggyboy

I had the fat from other parts of my body injected into my face three times, and it was great for the first few weeks. All three times my body absorbed all the fat and within a month it was gone. It must be because of my scleroderma.

SherrySanford65 profile image
SherrySanford65

I’ve had sculptra, and it caused bumps under my skin. I have scleroderma, and I think that’s why. I would be careful with that if you have a connective tissue disease.

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