NRAS
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What would you do? I am in desperate need of your opinion.

I do not live in the UK. I live in Canada, and I value your opinion. It seems that my 2 specialist don't communicate with eachother. Here is my problem.

My endodontist & oral surgeon say that my botched dental work gave me symptoms of RA. My rheumatologist says that this could be true, but do I want to take the chance? He thinks my botched dental work could of caused my RA symptoms to be exaggerated. My endodontist says that I need to stop my mtx, sulfa & hydroxy so that my dental extraction can heal properly. They seem to think that all my RA symptoms could disappear. Apparently RA meds and healing don't mix. My rheumatologist says if I stop RA drugs, I could go into a massive flare or I could be symptom free. I do not want to be housebound again. What would you do?

32 Replies
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Hi sue

what a decision to need to make!

For me, my clearest memory from posts, is your wish to be free from RA. What's being said makes some sense in relation to healing but it's a gamble.

Maybe it comes down to how confident you are in each medical professional, combined with the research you e undertaken the dental hygiene / work/ link with RA?

I can't advise but what I can say is if it were my decision to make, knowing your mouth must heal - and I thought this may lead to recovery and being RA free, I'd go for it, on the understanding that if I were to flare, I'd then need to restart Meds and not allow for a full flare - not sure if this makes any sense?

Sometimes we just have to bite the bullet And take the gamble.

Wishing you the best of luck

Marie

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Hi Sue,

I have to agree with Marie as this is what I would do - I think!

Good luck - let us know what you decide

Liza

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Yes, your advice makes total sence. I just got to bite the bullet and stop my drugs to see what happens.

I will restart the drugs if I feel a new flare.

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Wishing you the very best.

Marie

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How much damage to your joints (and the rest of your body) would a flare cause? It would presumably be short term - perhaps around six months or so, as I imagine if you have a flare you would restart medication and it would gradually take effect again.

If I was not having much in the way of symptoms currently and needed to heal, I think I would stop the medication with the proviso that I would go back on it if a flare then occurred. Is that possible for you?

It's a bit like the decision about having a baby!!!

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Thankyou oldtimer for your advice. I am scared to stop the meds....but if I have a chance to be "cured" and live drugfree...well...I just got to know.

I've been on RA meds for 3 years & damage to my joints progressed while being on these drugs. I also believe that the damaged would of happened if I didn't take these drugs....grrr....then I think the damaged to my joints would of been worse, if not for the drugs.

I think I will go drugfree for the month of June. If I "feel" my ra progressing, then I will continue the meds.

Ce la vie.

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I am quite of the same opinion as Eiram and Oldtimer. Your mouth needs to heal and as fast as possible you may be risking both inflamation and infection and a viscous circle of new meds and antibiotics if you let the situation continue for a long time. Hard decision to make without clear support from treating docs. I hope you make a decision that feels right for you. Best of luck. Simba

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Oh Simba, it's so hard to make the "right" decision. It's been almost 4 months since my botched root canal extraction and my mouth still hurts.

I've spent the last 2 months visiting my endodontist & oral sugeon complaining of tooth/mouth pain. I got to the point that I wanted all my teeth extracted. I told them that I would deal with dentures. Both these doctors could have made $1700 per tooth to extract, but they both want me to try to go drugfree. Mtx, sulfa& hydroxy are impeding the "healing" process...grrr...

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Hello Sue,

You poor thing. thinking about your situation I would first and foremost get a picture of if there is an infection going on in your mouth. Did you have the bad tooth extracted? Where exactly is the pain? I am sure your doctors must have quite a good picture of if it is a question of inflammation or infection and also if there eventually are other teeth with hidden problems. What does your CRP say? I think the most important thing is to get your mouth calmed down, the longer you delay the healing the more strain is put on your immunesystem and may increase your symptoms. The RA meds perhaps may only have kept the symptoms down but at the same time letting the infection grow or not heal? I hope you will find a solution soon. Best of luck. xx Simba

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Yes I had the bad tooth extracted in Feb 2017. The 3d xrays show no infection, but a lot of inflammation around the area. Apparently this inflammation is aggravating the roots of my other molars. Thus causing me pain.

My CRP is in the normal range.

Yes, I need my mouth pain to calm down. It's driving me crazy.

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Yes I agree. Your mouth wounds are top priority right now. You need to have that heal asap. The meds will have to stop for a while and also there is a chance you won't get a flare or better still the RA disappears. Go for it girl and stop the RA drugs. X

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I have had my top teeth all out whist taking MTX. Was not told to stop it it was never mentioned. The options are have the work done or dont. One way you keep suffering with your mouth or risk having a flare . You can always restart the RA treatment.

Wish you well and hope you pick the right option for you. XX

Chris

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Hi Chris. How long did it take for your mouth to heal after having your top teeth extracted? How long did it take for your jaw bone to heal while you were on mtx?

Thank you for all the advice you can give me.

Sue

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You are sadly between a rock and a hard place.....but you had such a dramatic improvement after the last lot of dental work that I can understand why you want to go down the dental surgery route. The chance that it may cause the RA to then go into remission is appealling!

However, I do think that once RA is triggered (whether by stress, dentistry, or bad luck) it's hard to get it to go away permanently.

My experience is that stopping MTX for 2 weeks makes no difference to my RA at all. I've never missed it for any longer so no idea how long I could last (not the same reason as you, as due to wanting a "holiday" so have generally kept going with hydroxy & Sulpha) So might there be an option for a "healing pause"? And does it have to be all 3 as hydroxy/sulpha have little immunosuppressive effect I thought? How long does the dental surgeon think that healing would take? (Plus the week before hand to ready yourself I guess).

And my other contribution is this...

academic.oup.com/rheumatolo...

How much does your dental surgeon know about RA drugs?

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I do very much value your opinion helixhelix.

My oral surgeon & endodontist say that they do not understand RA. They also don't understand why I wasn't in severe pain with 2 dental abscesses for 10 years. I'm at a loss as why no dental xray over the 10 years noticed these abscesses. I went to the dentist for a cleaning, xray & checkup every 6 months.

They say they have never seen a "case" like mine...but I just got to know if stopping my RA meds will heal my mouth & thus cure my "RA symptoms". I do not claim dental problems causes RA...but maybe causes "RA like symptoms"?...I just got to know. So I think I will stop RA meds for the month of June. If RA threatens to rear its ugly head, then I will continue the meds.

Thanks for your advice.

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I got confused - I thought you were talking about more dental work rather than completing the healing from the last lot.

But overall I think you have to go with your instinct. And if that says that you need to know what life is like without the drugs then go for it. Do keep a diary some sort as little niggles and aches can creep up on you without you really noticing until you suddenly go into a full blown flare.

A month may well not prove anything one way or another, as maybe it's calmed enough for you to stay in remission without them. Cautious me says that it is rare for people to last more than 2 years drug free - but it does sometimes happen so maybe that person will be you!

But let us know how you get on...we won't be jealous (much!) if symptoms disappear just it's good to know real experiences.

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Yes it's the previous redo dental work that still hasn't healed. Over the last few months, both upper & lower molars on the left side have been causing me pain. 3D xrays show that these molars are healthy. The xrays still show inflammation around the areas that were redone in Feb 2017. Apparently this inflammation is aggravating the roots of my healthy molars. Thus causing me pain.

I've come to the conclusion that I do have RA and the drugs are keeping it controlled. Ce la vie, but this oral pain is driving me crazy.

Keeping a diary is a very good idea. Thanks again for your advice.

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Hi sue, does your endodontist really understand the RA drugs you are taking?

Does he understand the pain & possible joint damage you may suffer if you just stop your meds?! My GP doesn't & I wouldn't take advice from him about when to stop taking them.

Can you ask your rheumatologist if you could start tapering off your RA meds....& see how you you go....if you start to flare I think your Rheumy will have to liaise with the endodintist & find out if there is any proven scientific data he can provide to show stopping the meds really will help.

It sounds like you have two professionals who are standing on their dignity & not putting your wellbeing first.

Are you talking about the dental work you have already had not healing, or about further work you need doing?

I had surgery when I was on Mtx, but only stopped it for two weeks & I healed fine after the operation.....nothing was ever mentioned about me not healing if I went back on on it.

Do hope you get things sorted...you were doing so well after all that dental work you had done. .....it will be such a shame if all you went through then is messed up !

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Yes, I'm talking about the extraction I had 4 months ago. Apparently it can take 6 months for the jaw bone to heal. MTX, sulfa & hydroxy can disrupt this healing process.

Both my oral surgeon & endodontist don't understand RA. I admire them for their honesty. These doctors could have made $1700 per tooth, so that's

$10 000.00 ...but they refused the money they want me to stop the RA meds & see what happens.

My rheumy says he will support what ever I choose...I just don't want to be disabled & in pain again...but if there is a chance of being RAfree...well, I think I need to give it a try. Thanks for your advice.

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An undesirable dilemma...but I think I'd give it a try. You know what a flare feels like and you'll never know what would happen if you didn't give it a go. Just be careful that the rheumatologist isn't going to refuse treatment in the future if needed; do it, but do it under medical guidance. We can only tell you our opinion- that decision should be yours and yours alone x

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For me it would be questions of where is my RA now? Do I feel confident in slightly reducing one or more of my meds to aid healing? If so which one? And for how long? If I flare what physical and moral support do I have to hand to see me through the flare? And then go for it or not!

A tea tree oil anti bacterial mouth wash may also help to keep things clean and as healthy as possible.

All the best

Ali

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Awesome advice Ali. My RA has calmed down since the dental work 4 months ago. I still have RA symptoms, but they are under contol now.

I've been thinking about what my doctors have said for the last month.

I have slowly reduced my mtx to 7.5mg and my hydroxy to 100mg daily. I am continuing my sulfa at 2000mg because I think antibiotics will help "if" my RA symptoms are bacteria related...So far so good. No new RA symptoms, but my mouth still hurts.

Thank you for your adise Ali.

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Hi,

What an awful decision to have to make. I think I would take the chance of getting rid of or reducing this awful disease ( I have PSA but I think that's similar to RA). A massive flare would be awful, but you'd get it under control again with the meds? I came off mine for a while when I had my gall bladder out. You also need your teeth to heal. Take care- I really feel for you. X

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For you personally Sue I see it as an opportunity to determine once & for all if you having RD has been in fact due to your previous poor treatment (root canal work). Stopping all of your RD meds which have the ability to delay healing would be appropriate in order for you to determine that, to the positive or the negative of course, to my thinking that is pretty standard. Think of it this way, if you were to have an op on your knee then you wouldn't question the same advice of the surgeon or anaesthetist, you'd stop whichever meds they recommended. So, the same applies, your endodontists advice is the one you've to heed, he's aware of the type of meds you're taking & knows which will interfere with the healing of the work he's doing.

Your Rheumy's sitting on the fence, basically giving you the option so... the best outcome is you don't flare so you don't need to restart your meds, you may no longer have RD & it's confirmed your endodontists & oral surgeon's thoughts. The worst outcome you do start to flare & you do need to restart your meds to halt it, a hiccup which may cost you a month or so of being uncontrolled, little chance of much if any damage occurring in that time I would think. You have the advantage that you're not starting totally afresh as you know which meds you respond to & may well kick back in quicker too. But you'll have your answer either way, one I think some in the same position would risk in the hope it was the botched dental work that started your RD off.

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I do value your advice NMH, and I thankyou for it. Yes, my rheumy is sitting on the fence. With so much going on in my life, I never even thought of that. Bugger.... I really wish my rheumy would tell me what to do.

I just got to stop the meds & give my mouth a chance to heal. I just got to know if dental work gave me "RA symptoms". At the moment, I don't care what triggered my RA. I just need to know if it will "go away" as my dental surgeon says it might.

I in no way claim to know the cause or cure of RA. I just know I got to try what my endodontist & oral surgeon suggest. I will restart my RA meds if I notice a change in my RA.

Thankyou again NMH for your valued advice.

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I wish you a positive "Drug Free June" Sue. x 😊

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I am in Canada as well. have your endodontist send a letter to your rheumatologist and vice versa. It is easy for them to communicate. I have 6 different specialists right now and when my rheumy dictates a letter to my GP, he copies all of the other doctors i am seeing. The other doctors do the same. Keeps everyone on the same.page regarding treatment and such.

I have had some dental work while on DMARDS with no issue.

It is a question you will have to answer for yourself.

If it were me, i would stop the mtx, sulfa and hydroxy and stick with tje tried and true (albeit shitty) prednisone for a week while the dental surgery is being done. This should keep your RA symptoms at bay for a bit. Remember as well that mtx, sulfa and hydroxy have built up in your system over the course you have been on them. Stopping for a week should not be that big of deal.

Just my 2cents

Scott in Vancouver

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Hello Scott. I value your 2 cents as I live in Vancouver too.

I have notified all my specialists about eachother. I know my GP and rheumy communicate, but I don't think my endo & oral surgeon communicate with my rheumy. Do yours? All my doctors are located in the GVRD. My endo & oral surgeon are located in White Rock. My GP is located in Surrey and my Rheumy is located in Vancouver. Surely it shouldn't be difficult for them to communicate. I do get a sneaking suspicion that my GP & Rheumy don't respect the dental profession. Any advice welcome.

Your fellow Vancouverite

Sue

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Just a thought, but would a lower dose of RA meds (say half dose for example) for a while help? Sort of keep the worst RA symptoms at bay but give the dental work a chance to heal? Does it have to be all or nothing?

Sorry you have this dilemma.

I recently had a tooth extraction (they had to split the gums 😮) and it took longer to heal than normal, but all is fine now.

Big hugs xx

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I did believe it was all or nothing until my husband said that I should try decreasing my dosage. So I just started halving my RA meds to see how it goes. Fingers crossed.

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sorry 4 your dilemma- do they say which meds interfere with healing? AFAIK sulfa is a v low power antibiotic - now i'm off mtx they put me on this and am now down to half dose and diet changes. best is, as said, 2 get them 2 talk x

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Hi Sue, wow, what a hard decision to make, but I like the answers you are getting. I think if it were me I would go for it👍. I would also be exstremely strict on the foods I consumed before going off the meds & during the time Im off the meds to be careful not to aggravate my RA in anyway. You are probably already careful with your diet. I'll be thinking about you & waiting to hear how your doing. I'm sending u thoughts of good healings & will be praying for a great result! Your forum friend, Richgirl🌻

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