To those who got fillers for nose

[Yvonnea]

Decided to get fillers in nose until I can get surgery. Breathing not affected so only for cosmetic reasons.
Can I ask those who got the restylene fillers or maybe another kind, where they in remission? Whatever that is...or if on meds what meds and at how high levels?

[Sangye]

Did you already have it done? If not, I hope you will ask JanW about it.

[Yvonnea]

Hi Sangye,
JanW was very good and replied to one of my other posts. I know there are risks involved. And a lot of Doctors verge on caution.
But I have also read alot about one filler called Restylene. This is a susbstance that the body already produces so it is 100% natural as opposed to silicone etc.
It is only temp. and so can be removed easily should infection occur. Seemingly they inject some other natural substance to remove. I read a really good article published in one of the UK science journals about a 22 year old who got it as a temporary measure while awaiting surgery. The Doctors in that journal just warned about permanent fillers such as silicone. In my case I just can't bear seeing the disease every day. It upsets me too much. Really want to be back to me again.
I have seen other people on the facebook site that have got it and are happy with the results.
So just want to know how long they were in remission and what meds they were on?
Thanking you,
Yvonne

[Sangye]

Oh okay, I just wanted to make sure you had all the info. Good for you for doing your research! :thumbsup:

I hope it works well for you and helps you feel better about your appearance. I can empathize. While I don't have saddle nose I do have huge weight gain from pred that has really damaged my self-esteem.

[JanW]

I met someone who had this done at the Symposium and she was very pleased with the results. Certainly you couldn't tell that she had ever had a saddle nose. She was in complete non-medicated remission and had been for years.

My surgeon will absolutely not do it, for reasons I have outlined before. It's not just an issue of it being a manmade substance, but also doing any work at all around and area that has no blood flow (which is why it collapsed in the first place), and the risk that anything could potentially trigger a flare (in which case it may make sense to do it for something 'big' like surgery, and not smaller like fillers). Doctors definitely disagree on how much of a risk this is.

I would be particularly careful about doing something like this on pred, because healing might be impaired.

Although I don't think about mine nearly as much as when it was first forming, I can completely understand the reason you want to have it fixed.

[Yvonnea]

Thanks Jan for your advice. I will definitely think on it.

[chrisTIn@]

Decided to get fillers in nose until I can get surgery. Breathing not affected so only for cosmetic reasons.
Can I ask those who got the restylene fillers or maybe another kind, where they in remission? Whatever that is...or if on meds what meds and at how high levels?

I'm planning to get a Hyaluronic Acid filler-injection (for cosmetic reasons) next month.
My Wegs-specialist said it's safe to take now,
as I'm in a non-medicated remission since June.

[chrisTIn@]

The cosmetic filler injections have been cancelled.
The doctor who was going to treat me, sent a letter to my specialist, and he (the specialist) wrote in return that the 'filler' might cause the immune-system to react.
So, a 'no-go', so to speak...

[Sangye]

I hope they find another solution for you. :sad:

[Yvonnea]

Hi Christin,

Doctors really seem to disagree on this one. I know both the top ENT guys in UK and New York advise strongly against us using cosmetic fillers. But I wanted to tell you my experience.
I talked first to my Rhumie and he admitted he didnt know enough about restylene. So I was sent to a leading ENT guy here in Sweden. This guy is top of his field in Scandinavia who specialises in nasal deformity and has treated other weg. patients. He had no problem with using either restylene or collagen for a temp. fix to saddle nose. While I was waiting for his consultation, I contacted 10 Doctors (Ireland, UK and Scandinavia) and only one Doctor advised against it. None of these had treated a WG patient before but had treated people with RA, Lupus etc and the fillers never caused a flare or no proof it did.
So after talking to other wg patients who had used fillers, I decided to go ahead with them. It has been two months now and I am very happy with the results. Just minimal bruising on the day. No inflammation etc. Nose did dip slightly but looks so much better.
I would never advise anyone to go against their advice of their Doctor. But I felt I had done my research and I am very happy with my decision. Plan on continuing to take injections every six months until time for surgery.
Kind regards,
Yvonne.

[freakyschizogirl]

I was referred to by my local ENT to one at Addenbrookes to have a consultation, he decided fillers would be a good option for me since i'm not in remission.
Told the Dr Jayne at Addenbrookes and he told me a stern, "No" as from a cosmetic point of view they would be fine but from a vasculitis point of view its too risky.

So happy for you Yvonnea that you did your research and got the fillers you wanted.

[jola57]

Well here we go again, how can we get anything done when even our esteemed doctors can't decide on an answer. I would dearly love to get mine done but noone here in Vancouver will touch it when they find out about me having wegs.

[chrisTIn@]

..he admitted he didn't know enough about restylene.

..I am very happy with the results.

...I felt I had done my research...

Thanks very much for sharing your experience Yvonnea! :thumbsup:
My doc said the same. He said, he did'nt know enough about hyaluronacid (wich is the same as Restylene, according to information I found on the web).
But that was when the cosmetic doctor asked him to write a letter in which he would declare that hyularonacid wasn't harmfull at all, in my case. I guess the doctor got scared, because the laws have been changed lately, and he was afraid he would get a juridical claim if anything went wrong.

You sure did your research!
I'm very happy for you that it all went so well. Congratulations!

I will talk to my specialist when I see him again. Maybe we can reconsider taking the risk.