Scleroderma & Raynaud's UK (SRUK)
7,048 members3,351 posts

Telangiectasia

Good morning all. I have servers telangietasia on my face and hands, over the past few weeks i have developed many on y tongue and inner mouth, I did have a couple spring up about a year ago and there's been no trouble but now, the pain of them when I eat or drink is horrendous, I'm losing a !ot of weight because it hurts to eat anything or to eva n have liquids. I don't see my rheumatologist till mid July. Just wanted to know if anybody else is or has suffered from this problem?. I'm on 3000my of mycophenalate but not feeling any benefits from taking them. Any help would be gratefully received.

10 Replies
oldestnewest

Hi Joanne, I have lots of telangi in my mouth. They are really noticeable on my lips, but there are several on the inner sides of my mouth. They don't cause me any significant pain ordinarily, but if I have anything spicy or particularly acid I know about it. I also have to be careful I don't catch them with a toothbrush and make them bleed. (Some toothpastes are too strong to use in my mouth too).

I am not aware of anything specific that will solve the problem, but theoretically the better controlled your scleroderma is the less they should occur...I say theoretically because it seems that some of these symptoms seem to occur whatever medications you are on. I would discuss it with your Rheumatologist and see if they have any more solutions than mine!

You might find that some of the gentle mouthwashes such as those from biotene are helpful.

all my best

Lucy x

Reply

Thankyou for your reply. To be honest my rheumatologist is useless. I dont see her till mid July and my condition has escalated the past 2 months. My medication seems to have stopped working unfortunately lol. It doesn't seem to matter what I eat or drink, it still hurts. And I've just completed a coarse of antibiotics for a chest infection so I thought they would help. Unfortunately not. But thankyou anyway and you take care of yourself x

Reply

Hi Joanne, I don't get the teleangectasias but I do get horrendous mouth ulcers from my lupus. I highly recommend difflam mouth wash you can buy it from the chemist. It is brilliant it numbs the pain for ages so you can eat and helps you to heal more quickly. I can't recommend it enough x

Reply

Many thanks hun. Willing to try anything now. So. Especially as some have started to bleed xx

Reply

Hey Joanne sorry to hear this, how long have u had scleroderma if you don’t mind me asking? It’s just my husband has it for many years and he does have really bad red dots, I’ve even asked him to open his mouth so I can check if there inside, but can’t see any as of yet. So upsetting that there’s another painful symptom coming soon. I really hope u find some pain relief xxxx

Reply

Hi Kc_1411 I was diagnosed June 2016. The telangiectasia was very mild when 1st diagnosed but it's only the past week that it has become so bad in my mouth.throat and tongue that it's interfering with eating and drinking. Even water and it has begun to bleed on my tongue. I've actuall not heard of this effecting anybody else hence the enquiry so your husband might not have any problems. Good luck x

Reply

I’m so sorry to hear this Joanne, call ur rhumi and tell them u need an emergency appointment u can’t wait any longer. Do u find they get worse when u are stressed? My husband has them too but all over the face and body, I find in last year his has got a lot worse. Hope they help u hun xx

1 like
Reply

Hi Joanne

I have quite bad telangectasia on face and hands. They cause no pain. I have had them layered twice quite successfully but now NHS won't do them so other option is camouflage make up. I got anaemic a couple of years ago and they thought I may have telangectasia in my gut which bled sometimes but no real evidence of that on gastroscopy or colonoscopy. I increased iron in diet and no problem now with that. Rheumatologist said the telangectasia were caused by my skin trying to heal. I wonder why yours are so painful?

Reply

Hi Joanne have just read my post! I mean lazered not layered!

Reply

Hi Linda Bickley. I too have had laser treatment on the end of my nose.lol. it lasted around 3 months before coming bk. It's not so much the ones on and around the face and hands, they are not painful, it's the ones on my tongue and all the inner mouth ones that are causing the problems and I'm pretty sure they cannot be lazered lol and I'm not sure I want them to try lol. But thankyou for your reply x

Reply

You may also like...