Teeth again

[jillydabrat]

I commented a couple of weeks ago about problems with my teeth since taking Hydroxy.

Well, I was called by a very junior doctor for my 10 week phone consultation and I told him of the problems with my teeth and not being able to get to a dentist because of the back log from Covid. I asked if I could be referred to a hospital dentist and I was told he would ask my consultant but he had never heard of Hydroxy causing dentistry problems.

Today i got a copy of the letter that has been sent to my GP and I have been referred to the Maxiofacial dept at the hospital but she has put down that dental problems are not a side effect of the drug. I now feel the dentist will show little belief in what I know to be true. The only way I can show him/her is to take some of the responses from members on here who have had the same problem whilst taking the same drug. If you have had problems can you please share it with me. It seems another case of the patient having to teach the professional.

[jamieisabella]

Hi there, I have had many problems but mainly with gums and the soft tissue inside my mouth. This manifests itself in mouth ulcers and very sensitive when eating hard items, toast etc. However as gum problems and general mouth health is the root (pardon the pun) of all tooth problems I’d say HU hasn’t helped. I have been on it since 2015. As an aside my dentist blames everything on it!Hope you get some answers but I wouldn’t hold your breath!

Good luck

[katiewalsh]

Hi. Will it matter whether or not this doctor accepts that hydroxyurea is the cause? My dentist said it dries out the saliva leading to more decay but since it eats through our gum tissue to cause mouth sores (ulcers) it’s clearly caustic & seems unlikely it wouldn’t also cause some degree of tooth/jaw harm. Good luck. And don’t sweat it if this doc doesn’t believe it. We know from all the others on here who’ve had teeth break & jaw problems. Katie

[Rockstone]

Hi, I had toothache and expected a filling but the dentist said it was an infection under the tooth and hydroxy was probably the cause as it weakens the teeth. He prescribed antibiotics

[Leighcox85]

Hiya Hun I did see your post before and I wanted comment so I will now I have mf and I have lost all my teeth it’s not the medication it’s part of mf iam under st guys in London mpn specialist team and we have a specialist dental team there unfortunately for me I will lose my teeth and iam waiting for surgery I take rux hydroxy didn’t suit me I have had mf for 12 years and iam on the last stretch meds not working platelets to low for trials so sct for me but mf does cause teeth problems so I would definitely ask your team I can’t see a normal dentist because of condition having teeth removed has to be done in hospital I hope you manage get in soon nothing worse than tooth ache

[BonnieJ]

I used to have beautiful teeth and hair before taking Hydroxyurea. Within the first 6 months of taking it, my hair thinned out considerably and my teeth started to chip away. I told my hematologist about it, and just like your doctor, he scoffed at my suggestion that HU could be the cause. When my platelet count got down to 528, I decided to do an experiment. I continued taking Aspirin 81mg. daily but stopped the Hydroxyurea. Within months my hair was growing back. I had no further cracking and chipping of my teeth.

Obviously, Dr.s are reluctant to report such findings back to the drug manufacturers. I believe these are side effects that are underreported, if reported at all.

As to taking myself off the HU, there is another interesting angle to this story that I I will share in a separate post.

[Teresa-E in reply to BonnieJ]

Bonnie, I would love to hear about this interesting angle!!!

[Hydranga18 in reply to Teresa-E]

Bonnie .. I too would like to hear your experience of coming off Hydroxycarbamide

[Wyebird]

Good luck

[IntheBag]

Hello Jillydabrat, this is my first time posting, I have ET and Budd Chiari, diagnosed 2020. Have you heard of the Yellow Card Scheme. This allow you to report a side effect not already recognised. If there is enough reports the MHRA will investigate. I know this doesn’t help you now but if this is an issue in the MPN community then maybe power in numbers etc.. link attached. Good luck. yellowcard.mhra.gov.uk/the-...

[jillydabrat in reply to IntheBag]

Thank you for that. I have filled in the details on the site. It would be really, really helpful if those of you who have had dental problems on Hydroxy would do the same. Thanks everyone.

[IntheBag in reply to jillydabrat]

You are welcome,

[Hughesf]

Bleeding gums is in the side effects if Hydroxy

[Mabellucie]

Interesting what you say about your teeth - when first on Hydroxy my dentist was very worried about my gums but last visit he said they have improved. The lack of proper blood flow with platelet problems apparently can cause all sorts of problems in our bodies so sounds reasonable it could be causing problems with your teeth. Good luck x