Sticky Blood-Hughes Syndrome Support
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Help butchered by local dentist

Having been discharged from dental care at Guys Hosp I had to go to local emergency dentist yesterday after 5 days of agony. She took x ray showing massive cavity under molar and said it has to come out. I am in so much pain I, stupidly, agree. I try to explain my APS, Lupus & Adissons but she just looks blank and says if inr ok thats ok. I know i know i should have stopped there but it hurt too much so i let her carry on. After approx 10 injections and much screaming, wailing & bleeding she states it must be infected so stops extraction and sends me off for 7 days with antibiotics. So now I have acute trots thanks to amoxycilli and my toothache so bad I haven't slept and I want to smash my own head in. I am also now exhausted and feeling totally incapable bof anything.. Am already taking max dose of codeine for aps & lupus symptoms. Don't know what to do?

12 Replies

Hi Welshexile

I have only just seen this. Are you OK?

Do you have anyone with you? My concern is you don't go into an Adrenal Crisis on your own, which by the sounds of it, is highly possible. Did you manage to at least stress dose before the Dentist tried treating you?

Could you go to Hospital A&E and say you think you are going into Crisis because of what has happened and try and get help that way?

I am not sure what the NHS is like for A&E these days but fear of you having a Crisis might get them helping you?

Just a thought.


Im so sorry you are going through all of this. Is your GP aware of the situation. If not I would call them straight away and see if you can be seen. I do hope things calm down soon when the antibiotics start to kick in. Big Hug x


Is the injections not working a side effect of Hughes? I'm having that problem despite repeated massive antibiotics and massive numbers of injections, they just don't work.


Afternoon all, thanks for your replies, I ended up giving myself an emergency hydrocortisone injection to deal with stress, liberal doses of painkillers and managed to slepp the entire day away. I wasn't aware that Hughes caused complications with injections.....but I do know that I still don't know where to turn....I certainly don't want to return to the ignorant butcher I saw on Tuesday but the current state of NHS appears to mean that I cannot expect knowledgable treatment and even when I try to impart my knowledge on to dentist their basic grasp of English appears to mean that my illnesses are dismissed without a second thought.


Is an oral surgeon out of the question? My dentist has told me she does not want to do any extractions on me due to APS. We are keeping an eye out on a tooth with a cavity which seems to defy our joint efforts to contain it. And when it's time for us to give up on this tooth I'll be off to an oral surgeon.


I honestly don't know! As I said I attended Oral Surgery @ Guys to have 2 previous extractions but they discharged me back into the land of the butchers over 4 months ago. I have a Hughes clinic appt on 8th July so If all else fails I will ask for a re referral to Oral Surgery again. It does seem a stupid waste of NHS resources that travel expenses will have to be paid out for me to travel all the way to London because there is no adequate dental care for me in oxfordshire! And it's also downright cruel that I have to suffer with a half extracted tooth due to incompetence of dentists paid for with my NI contributions aagghhh!


Hi there! I just read your message and I hope you feel better. Maybe It is not consolation but I also have APS and the anticoagulant clinic at Guy's adviced not to go to the dentist because it was quite risky. So I still have a gum that bleed every time without any explanation.

Wishing you the best, Maria39


Hi Maria,

Have a little look at my huge long post , maybe the corsodyl mouthwash I mentioned will be of help to you?



Thanks Maria39, yes as I have been trawling the web all day it would appear that I have little choice but somehow put up with the additional pain and wait until Guys appt. Then I will at least be able to discuss with people who actually give a dam!


Hi Welshexile

Can't help on the dental front, even in NZ Derek's dentist says that anything other than general dental treatment and because of the Addison's and APS he has to go to an oral surgeon. Not an option we really want as it will get very expensive, but our Dentist admits that he doesn't know enough to deal with everything. At least he is honest.

As to the Addison's, I am glad you took your shot. I have been coming on regularly to check you were OK as I know how fast you can go down and when you do go down, your brain won't always acknowledge you need the shot.

Keep us posted and good luck with it all.


Aww thanks Tiggercat, and everyone, that's why I love this community, we know there's always other people looking out for us :-) I know you're right, the sad truth is I will have to stick to trying to get dental via Oral Surgery at Guys. Have kept double dose steroids and max painkillers and it's just about bearable, roll on Guys on the 8th!!!!!



Firstly, I am so sorry that you are in pain. I used to be a Dental Nurse and so I can hopefully offer some explanation regarding the Dentists treatment. Regards to APS, Lupus and Addisons I can't advise - although I have APS and Lupus, MS, Pernicious anaemia and it goes on.

When somebody has an infection in their mouth, as you do it is incredibly painful and local anaesthetic takes a while to work. We would often place local anaesthetic and allow the patient to wait half an hour in the waiting room for it to take effect, and if needed, then another for however long the patient needs. far less traumatic all round.

I hope you are all right on the Amoxycillin. It's a good all round antibiotic, a penicillin and it will ease your pain. It will mean that your next visit goes more smoothly, it's just a shame that you have ended up in this situation. Be careful, of course that your INR is maintained whilst on antibiotics.

Patience is needed on the part of the Dentist here, and I have often seen that a Dentist will prescribe antibiotics to allow the infection to reduce, asking the patient to come back a week later. This just saves time in the day... appointments backing up etc, but it is not always the right thing for the patient. I have heard people being told that the anaesthetic won't work with an infection, but it's not true. It just takes time, time that would have allowed you to feel confident and relaxed for the extraction.

It is possible to have local anaesthetic which does not contain adrenaline, although this takes a little longer to work.

It is OK to have an extraction if your INR is at the right level - usually below theraputic range, however you must be careful during the healing process, until there is a good clot in the extraction site (a healthy one, not an APS one...) no hot drinks, no smoking, no exercise for a while. (for a patient without a bleeding disorder this would be for 1 hour post extraction). You may ask for a sticky plaster to be applied over the site, that will stop you loosing the clot and will help to prevent post surgical infection. It works a little like stitches, but without the stitches!

Until you are seen again you may wish to try a mouthwash containing CHLOROHEXEDINE, there are a few brands that you can buy. I don't know if I can mention a brand, but the most widely used by dentists is Corsodyl. It tastes foul but it is very good. It won't deal with the tooth, but it will help with inflammation and any gum infections. If the cavity that you have is against the gum line then it could be that you have a gum infection as well as a cavity. That's nothing to be afraid of.

Actually, I think that for all of us who have APS it's really important to be aware of our gums, if they bleed a little when brushing it could be an early sign of gum disease, which is completely treatable and by treating it will save us a lot of bother later - gum disease is the greatest cause of tooth loss...

Part of any health professionals job is to explain, to listen and to understand. I do hope that your pain eases very soon. As soon as the tooth is gone you will feel like a new woman, I promise. I just wish you didn't have to go through all that and still be in pain and still need another appointment.

I must add, I am speaking only as a Dental Nurse, I can't advise you on any basis other than the info I have read here.


I hope you feel better really soon.

Annie x


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