Hi,
Has anyone experience or knowledge concerning any impact on teeth for MF patients? One of my molars has just cracked and needs removing.
I’m 40yo and started Peg. Interferon 6 months ago after being dx with secondary MF. I’ve never had any dental problems before. Was wondering if I can blame my MPN for this 😁...
I was diagnosed with PV jak 2+ in 2017 one year later I suffered a fractured vertebrae. Exactly a year after that I suffered another. I have also had 2 broken teeth. When I put it to one of my consultants at the Norfolk and Norwich university hospital she said that any bone marrow condition will weaken the bones. I'm currently on ruxolitinib. Although I was told a year ago that I had not progressed to MF, there have been a few indicators that it might happen.Carol
Hello Carol,
Thank you so much. That is truly helpful. I’m so sorry you’ve had these fractures, I hope they’re better or at least manageable now..?
I’m also with the N&N! I’m primarily under Dr Lawes but have seen a lot of the team there. I was also dx in 2017, with ET. It progressed to MF last year. Please could you let me know which consultant told you about weakening bones?
Warm wishes,
Lucy
Yes I mostly have Dr lawes. I have sent you a private message.
Hi, I have had 3 broken teeth in the last couple of years, my MPN specialist recently said that it is probably caused by Pegasys.
Hi, thank you for your message, I’m sorry to hear about your gnashers. That’s so interesting about Peg...
Hi! I also have peg-interferon and have grown severe tooth trouble. Have lost 6 teeth and the others are crumbling. I also have got a much higher carius rate, but I guess that this has to do with the reflux, which is (seemingly) another of our "blisses" !!
I wish we could create awareness, at least, among doctors, so they could find out the reason. Is it calcium defiency? It could be, cause all the blood we lose through the injections--or what ?
Take care -- have a nice day !
Yarrowleaf
Hello Yarrowleaf,
Thank you so much for your reply. How long have you been on Peg? The leaflet which comes with my Peg injections says nothing about teeth, despite being many pages long. I’m so sorry you’ve lost those teeth. I’m going to get my one replaced with an implant, as long as the bone beneath it can be grafted. Do you have crowns, implants, or a plate where you’ve lost them?
Also that’s so interesting about the reflux, I also get it and try to manage it so as not to damage my teeth. Hmm. Dental care has only recently been joined up, and still in a minimal way, with general healthcare in the U.K. - not helpful.
Dental health care in the UK has always been part of general healthcare for those who use it regularly.
Hi. NHS dental care is, but private dentalcare has only recently been joined up.
Sorry but they have always been joined up. Dental care of both kinds has always been part of general healthcare. All dentists are registered with the GDC the same as all doctors are registered with the GMC.
Thank you, and yes, of course all UK healthcare is technically joined up. In my experience, with these very rare illnesses about which so much is still unknown, practically this has not always been the case. I find a proactive approach is best. Which MPN/s do you have?
My partner has ET and is a retired dentist!! He has referred someone, following a dental checkup, for specialist treatment as he spotted the signs of a brain tumour. One life saved.
Your partner is clearly an excellent dental practitioner. I’d be really interested to know if he has experienced anything himself to do with his teeth and his MPN, and any drug therapy he might have for his ET.
He has no ET symptoms other than occasional itching. He is on 500mg Hydroxycarbamide daily and that keeps his platelets within normal range. The second half of his career was spent as a clinical director in the Community Dental Service caring for those with special needs.
Hi, not sure what you mean by "joined up" but my dental practice has been open since August. We do need to have a lot in place and for example have fallow time et cetera , so a bit different but we even have normal Weekend emergency work.
Hi lucy, I have PV andI have been having severe reflux problems( 80 mg of Nexium only helps partially, especially in the night it cannot be controlled) since on pegasys since april last year.
I use 45 microgram every three weeks, now trying every six weeks to see if reflux subsides meanwhile my blood counts stay below the limits. The reflux is so bad it has caused erosion of my enamel. I also lost two molars ( due to cracking) one I had replaced by a bridge , the other one was in the back and the dentist surgeon advised me not to have implants due to higher risk of rejection ( but this happened before april last year, the reflux was already there but in lighter form, ) I have heard from several mpn patients having similar dental problems..I did have a dexa scan done last week: it came back well: no osteoporosis...
take care and all the best for you, Gabrielle
Hi Gabrielle,
Thanks so much for your reply. There does seem to be an issue with teeth doesn’t there. I’m so sorry your reflux is so bad, I hope it subsides soon for you. Rotten to have it going on 24/7. My Mum lost a few teeth with her PV / MF, she was given a plate which worked well.
It’s great that Peg is otherwise working for you at that dose and interval, and no sign of osteoporosis is a definite thumbs-up. I’m on 90ug of Peg weekly, which seems to be at the higher end of dosage, but it’s working for my blood counts. I know with any strong medication it’s a question of balancing and management, I hope your reflux is under control very soon.
All best wishes,
Lucy
Hi Lucy, thank you! yes I also have a plate which i normally use every night but since the reflux i don't since otherwise the erosion would become even worse ( the acid getting caught between the plate and my teeth all night and not being able to flush it out sufficiently) I do use "xylimelts" a harmless pills that attach to your gum and that are basic and so neutralize the acid a bit and protect the teeth..Yes the pegasys works magic on my blood..and amazingly in a relative small dose and with a long interval.... unfortunately that's not the only thing it does.. well .. nothing comes for free.. just have to see how long I can keep up with it.. I am putting my hopes on Besremi , supposedly it has less side effects than Pegasys.. ( it is available in Europe but in Holland the health insurance will still not reimburse it)
good luck with the dental problems.. take care, all the best!
Hi I have ET Jak2 positive and take hydroxy and aspirin. Was diagnosed nearly 4 years ago. Past couple of years have had real problems with my teeth, I’ve hit a loose crown as my gum is receding, but dentist won’t do anything with it due to my blood disorder and referred me to hospital to have it out sling with the tooth next to it. I do t really want a big gap. Also fillings are falling out snd just wondering if it’s all down to the ET or medication.?
Hi best-name-ever GrumpyFairy,
I’m so sorry you’re having teeth issues too, it’s an unwelcome extra on top of everything else isn’t it. My Mum was on hydroxy for her PV, and it caused her 24hr gingival bleeds so she was put on anagrelide instead. Can you talk to the hospital about implants, a plate, crowns or caps?
My dentist didn’t suggest anything to fill my prospective gap to me, I looked into options myself and then asked him. Usually he’s brilliant and thorough, so I think it’s a sign of these times getting to him. Must be so worrying being a frontline health worker.
Hi Lucy, yes a name my husband gave me many years ago!! Gosh your poor mum, I do worry sometimes about hydroxy, especially when I often read on hear people similar age with higher platelets than me just on aspirin?
Yes it’s an another extra problem and worry I could do without, I’ve already been on the waiting list to see a max fax doctor at the hospital for 12 months and that was before Covid, so I think it will be a while I’m going to be stuck with my rattling crown!
Hi Lucy. I had severe problems with relux before being diagnosed with Etjak2, in fact I suffered significant weight loss as a result. I've also had a host of problems with my gums and teeth since being diagnosed. I don't know whether the Hydrea or the condition as anything to do with it or in fact any other of the medications I take for other health issues. I've had to have several teeth removed and wear a partial. My Dentist did not have any concerns about treating me when I informed him of my condition or medications. Best wishes. Tina.x🤗
Hi Tina,
Thank you for your reply and sorry for my late response. Severe reflux sounds rubbish, I hope it’s under control now. When one starts taking these serious medications, it’s about management of any side effects they cause as much as the conditions they’re treating isn’t it.
My first extraction and jawbone graft is going well but I think I’ve just cracked the corresponding molar on the other side 🤦🏻♀️. Definitely blaming MPN world for that...
Kind regards,
Lucy
Very high B12 blood results
myelofibrosis 
Chronic cough and MF
Myelofibrosis and platelets
