I’m having increasing problems with skin tightening on my face, due to this my mouth has got tighter , making it difficult to open my mouth, smile (looks more like a grimace) chew and is having an effect on my speech now. My front teeth seem to have been pushed forward and one has overlapped bridgework (three tooth bridge) which has made the bridge unstable. Four weeks ago I bit into a soft sandwich (not with any great force) heard a crack and the bridge fell out, to be honest I was half expecting this as it became so unstable, necessitating a trip to the dentist. Long shot is whilst most of the tooth (2) had cracked off they still remain in the gum so have to be removed, I take Warfarin an anticoagulant and the dentist asked me to ring my Warfarin clinic to get a written regime to reduce my Warfarin levels down before the procedure. Basically Warfarin stops your blood from clotting so easily and causing a stroke or heart attack (already had mini stroke and heart attack in my fourties) it also prevents clots from forming on a device in my heart. This means though that I am at much greater risk of a serious bleed especially with tooth removal. Reducing warfarin before the procedure should help to allay this hopefully! I have had to do this before heart ops etc so know the procedure. Anyway I rang my clinic expecting this to happen and to be a formality as in the past but at other clinics, I was shocked and dismayed when they said they couldn’t help me and said my dentist would have to implement this. I said my dentist is a Doctor of Dentistry not a Heamatologist . I know that I would need a blood test (INR) a few days before the procedure and then one the day before to establish that my Warfarin levels have come down sufficiently to go ahead. I said the dentist has no knowledge as such of my health probs., other than that I have a working diagnosis of SSc and both she and I are not happy for her to attempt this, just too dangerous plus she obviously doesn’t want the responsibility and rightly so. I then asked the W. Clinic nurse was I just expected then to let the remains of the teeth rot in my gum. She replied I would have to ring round and find a dentist who would do this, like that’s going to happen! I was so shocked at her callousness and disinterest in my problem that I just burst into tears. My dentist was shocked also and is trying to find a way around this.
My question is this is anyone else firstly suffering from this facial tightness and having problems with their teeth and secondly is anyone else taking warfarin and has suffered similar problems with any op or procedure, especially dental and been refused help. My dentist is aware of the SSC issue but not exactly why I am on Warfarin, she understands the heart issues but it’s not in her remit to give advice on this issue.
So much for the caring NHS or is this just another means of cost cutting!
Sorry this is such a long rant but any advice would be much appreciated.
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Bkart
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Hi there, so sorry to hear about the unnecessary stress you have been going through. As you say it should be a simple matter of following the protocol that you did before to stop the warfarin prior to your dental procedure. I would try again and see if you can get to speak to your consultant or a nurse who will help you. I might also discuss it with your GP because they may be able to help and have a protocol that they follow. Stick with it, someone should just do what they did before when you had your heart ops.
Hi Lucy, thank you for your kind reply, unfortunately I have tried all of your suggestions without any success, all roads lead back to the Anticoagulant Clinic!
I have managed to locate a private GP who is ringing me tomorrow morning with a view I presume to referring me to a local private hospital who would be able to do the blood test and protocol. Of course I will have to pay for this which I resent, sadly now this sort of NHS failure of care is becoming all too common.
What a horrible situation to be in! I agree with Lucy ask your gp if they can help. Surely your dentist could refer you to your local nhs dental hospital where they would hopefully better equipped to deal with the issues. Fingers crossed you get this sorted soon all the best.
Hi Clangerscat, again thank you for your kind reply, GP doesn’t want to know. My Dentist is ringing me back tomorrow and I think the dental hospital might be her suggestion. I suffer from dental phobia and I really trust my dentist who is very kind and patient with me and has an understanding of Scleroderma, so I would much prefer her to do the dental work. I’m also worried that I might have to join a long waiting list, ordinarily I would accept this but my dental work is urgent. This may be, depending on the cost of the private hospital treatment, my only option though.
I just feel so shocked, appalled and angry that people can be treated in this uncaring way - next please, move on!
I manage a dental office in Florida and some of our patients that require surgery and are on blood thinner get an alternative treatment of Levonox injection so they can stop the blood thinner. This is something your cardiologist or primary care physician can decide if this may be right for you. Also the dental surgeon can do additional steps like using membrane and extra sutures to help mange the bleeding too. Good luck
Thank you for responding to my predicament. I looked up Levonox and how it is used in the UK NHS hospitals, it is classed as an anticoagulant similar to Heparin. Here in the UK it is used to treat blood clots, strokes, heart attacks by ‘thinning’ the blood to help prevent further clots forming and to break down clots which have caused the event, thereby preventing further damage. Warfarin is an anticoagulant which also ‘thins the blood’ and is mostly used as a preventative medication. Unfortunately my dentist needs my anticoagulant clinic to reverse the ‘thinning’ by reducing and stopping the amount of Warfarin I take for a short period thereby ‘thickening the blood to make it clot quicker so effectively making it less likely I would have a serious bleed or at least a bleed the dentist could control. So as you can see taking another anticoagulant would surely increase the risk of bleeding but I stand to be corrected and will enquire about this. For the uninitiated everybody has an INR international normal blood clotting factor of 1, if you are at risk of blood clots because you have ‘sticky blood’ etc., you will be given an anticoagulant and the dosage is directed according to the level of ‘blood thinning’ required to prevent clots forming. You are given a target range, mine is 2 - 2.5 target -3 you are monitored by blood tests regularly as many foods, medications, alcohol etc., can affect how it works, moving the clotting factor lower or higher, either way can be dangerous, than your target range, hope 🥱your still with me🥱! Basically if your blood test shows you are out of range the clinic adjusts the dosage, so the higher the dosage of anticoagulants stops your blood from clotting so quickly preventing bleeding which can be internal as well as external and you may not be aware. Of course for most people clotting is a normal process to help wounds to heal after accidents, surgery etc, so as you can see quite complicated to get the balance right.
Sorry to sound a ‘know all’ but felt it important to try to explain a complicated subject and why I am so concerned. I certainly wouldn’t want to offend you in any way and thank you for your reply, as I said I may stand to be corrected.
Hi, I really don’t understand your warfarin nurses issue. I’m a podiatrist and if we do nail surgery on patients on anticoagulants it is part of the protocol for the prescribing doctor/clinic to be contacted by the patient prior to surgery and for the prescriber to advise on the reduction of the dose to allow for surgery to go ahead with the least possible amount of post operative haemorrhage and more timely coagulation at the surgery site. It’s definitely not my job as the podiatrist carrying out the nail surgery/procedure to advise the patient on dose reduction. It’s the prescriber of the medication therefore it’s not the dentists job either to make that decision.
I can definitely relate to your issues with facial tightness, small mouth and smile. It’s hard enough dealing with these changes without all the worry about your tooth extraction. I hope you get the help you deserve soon xx
Hi, thanks for your reply, I must have forgot to press send with my thank you! Yes I agree with your words totally, I’m still baffled by their response or lack of it, having the INR protocol done privately now but shouldn’t have been put in this position as would have much preferred the anticoagulant clinic to take responsibility. At my next appointment I shall be taking it up with them! What was already a scary procedure for me has now just become a whole lot worse.
Yes the facial tightness is not nice is it, I looked at myself in the mirror (try not to look too closely these days 🙀) and smiled or tried to, together with the missing bridgework it was like a mask looking back at me OMgoodness! 🫣😂
Sounds such a nightmare for you, you just want someone in the know to take charge. It’s such a mess when no one is taking responsibility. Wish I could help, but I can’t, sorry. Try and stay strong and let us know what happens .
I am not with The Royal Free hospital London rheumatology but I read that they have their own dentist who is an expert in scelerderma, maybe someone here knows if that is still true.
Thanks also for your kind reply as you can read from my reply to Midgbite21, I’ve had to pay privately but at least as you have said someone is now taking charge. The private GP has agreed to liaise directly with my dentist so hopefully (never thought I would hear myself saying this🫣😂) the extractions can be done, unfortunately though I can’t have another bridge because of the front teeth moving or implants so will have to have a part denture 😢😭. Hey ho!
Hi Bkart just wondering how you got on, hope things are resolved. I agree mouth tightening is horrible and I hate the way mine looks. I put off going to my dentist for ages blaming my scleroderma but actually just couldn’t cope with the idea of being put through any more medical procedures. Stupid of me because I ended up having an extraction, without any of your added problems admittedly, and my gums aren’t as healthy as they could be. We live and learn😅.
Thank you also for your reply, I’m afraid I did exactly the same thing - put off going, partly because of my phobia but also I was embarrassed because I had put my head in the sand and tried to ignore my gum and teeth problems caused by mouth tightening, but when the bridge fell off I had to get an appointment. I was worried that the dentist wouldn’t have heard about Scleroderma and therefore not understand, I was lucky my dentist does know and is very supportive, more understanding than my GP in fact! She used a small child’s size impression plate (I was dreading having an adults size forced into my mouth). I certainly understand about not wanting to be put through any more medical procedures too!
Yes we do live and learn but trying to explain about mouth tightening is just weird! 🤐😅
The extraction has been set back so I took the plunge to ring the Anticoagulation clinic a second time. I left a message to ask why I had been refused an INR protocol test for tooth extraction and explained what had been said to me. I received a phone call and they immediately agreed to do one when the date for extraction is now given. I asked why the request had been initially refused despite being clear as to why it was needed but no answer! At least they are now willing but could have done without the extra stress caused.
It's wise that you're in touch with your dentist and Warfarin clinic to ensure a safe procedure for the tooth removal, considering your medical history and the medication you're on. Dental issues can be challenging, but having a healthcare team to guide you is essential.
If you ever have questions or want to explore dental-related topics further, you might find valuable information on meetmydentist.com/blog/ . It's always good to stay informed and connected with dental professionals who can provide the right guidance for your unique situation. Wishing you the best of health and a smooth dental procedure ahead!
Thank you for your kind reply and info., which I will look up. Just to update you I had the roots from my defunct bridgework taken out successfully but it did take a few days for the bleeding to stop and healing was very slow but all ok now. I was hoping that I could have implants but having been assessed the procedure was thought to be too risky. I was told I would need a block bone graft from my pelvis as I don’t have enough bone, it could be done but given health situation I don’t want to put myself under that risk, I think the Dental specialist was quite relieved. Plus it would have had to be done under anaesthetic in a private hospital and the whole cost would have been prohibitive. The only thing is a denture which I’m finding hard to get used to, it makes me lisp ( I was already have speech problems due to mouth tightening) and impossible to swallow tablets with it in, so at home I leave it out and then forget to put it in when I do go out! 😂🥴🤭
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