Dental Implants ET on HU

[DH65]

Just wondering if folks have had success with dental implants? I have ET/ Jak2+ on HU 3 x wk. Must your platelets be in normal range for them to do implants? Do to poor circulation do we heal properly?

[JediReject]

Hi DH65 , , I guess you'll be ok with your dental work as your 'wounds' should heal well with little risk of excessive bleeding but best check with your Hem obviously. I needed a mouth biopsy recently but the dental clinic wouldn't do it because my Platelets are low (about 40 at the time) . They referred me to Maxilliofacial Dept at Manc Royal to have it done in partnership with Haematology in case I needed a transfusion before it. However since on Ruxolitinib platelets are over 100 so I might be ok.

Good luck with it should you decide to go ahead. Chris

[dscotese in reply to JediReject]

Platelet count might need units on it. As far as I know, normal is 300-400. 40 and 100 are both very low and you shouldn't be taking any Hu if they're that low, as far as I know.

[JediReject in reply to dscotese]

You're absolutely right but they keep a close eye on me at Manc Royal and I won't get anything dodgy done without my Consultant authority. Tis tad different for me as well past the HU stage having undergone a Stem Cell Transplant in Sept 15 for MF. So am on immuno-suppressants which does affect counts especially Platelets and red cells. . Had many many top ups in last 18 mths . . . Cheers Chris

PS platelet transfusion is usually triggered when drop down to 25 below.

[JackLina in reply to JediReject]

I wish you all the best for your future. Time I stopped whinging!

[JediReject in reply to JackLina]

Hi Penelope, , your post caught me by surprise coz I didn't recall this thread , but I see it was a year ago. Thanks for your best wishes, I'm going along ok which is good progress for me so I'm happy. I don't think you should be so hard on yourself as we all have our own issues to deal with.

Good luck to you Penelope. .

Chris

[nodmeister]

Hi, interesting query as I'm most certainly needing similar treatments. At the moment I'm taking tab every other day. I'm rather hoping I may be eligible for an exemption certificate otherwise my new nickname will be the old favourite Gummy!!! Too expensive for my bank account. Anyway good luck😁💋

[Vennie]

Hi, I have ET/Jak2 and have had seven dental implants. I had to have permission from my consultant first, then seven days before the procedures I have to stop Hu. Dentist said Hu makes teeth brittle, I am waiting to have another three extractions at the hospital. It is very invasive so think seriously about going ahead. I rested in a hotel near the clinic for a night as I was far from home, it would have been too much to go home on the same day but if you live nearby, then no problem. I had no after effects except the usual ones expected; pain, swelling but no undue bleeding, in fact, quite straightforward. Because these extractions are at the back I shall probably not have implants fitted because of the toll on my body. Hope this helps.

[DH65 in reply to Vennie]

Thank you Vennie, wow, you are an implant expert! I'm not so worried about the extraction although it is in the back. I had one extracted two yrs ago before I was on HU. I will ask my Heme. about stopping the HU before the extraction. I'm just scared about the idea of a post implanted, do you feel it? Is the implant hard on your body ?

[Vennie in reply to DH65]

The extractions are not too invasive, it is the implants that are. I don't think I stopped the HU for them but for the implant procedures. My haem insisted I had sedation for them as well so I was just very relaxed and in a dream-like state and felt nothing, until the sedation wore off, and then, as I stated, it wasn't too bad providing you rest and don't rush about. Yes, implants are hard on the body, and why I won't have any more unless the front ones drop out, then I'll think twice. Best of luck and good wishes. x

[DH65 in reply to Vennie]

Thank you for your honest opinion. Now that it's over do you feel them and do you feel your health bounced back to your previous level after the recovery. I'm just starting to feel better and stronger and would hate to go backwards.

[Vennie in reply to DH65]

Oh, certainly my health returned 'to previous level after the recovery' and they do not feel out of place in my mouth, infact, having them gave me increased confidence because I was doing something positive about what was negatively happening to me i.e, my teeth falling out due to meds and infections. It can pull you down when 'side-effects' from the medication have deleterious effects than the health condition itself. I cope with my condition, but to have 'added' problems grates on me. I am sure you will feel stronger soon, but please remember, your current condition may be due to other things. I have had many ups and downs concerning my health (which I've posted on this site) and at this very moment my haem has took me off Hu for the time being (and I am high risk after having stroke and having unstable BP) but do you know what? I feel fantastic for the first time in seven years (when I was diagnosed) and although platelet count is steadily rising (but I see haem on Monday) I really do not want to take it anymore, and we are considering other options. V x

[DH65 in reply to Vennie]

I don't like HU either due to its numerous side effects. My harm is letting me try Low dose naltrexone and platelets came down some over last 6 was and I have been able to come off Ativan as I am calmer. I still take my 3 HU a week. I wanted to ask you how many implants they did at one time or was it just one at a time?

[Vennie in reply to DH65]

I had three done together, then I had one on the other side, then recently I had another three rightt at the back, but it was a long procedure over many appointments because I had have an extraction, then I had to grow synthetic bone in my jaw because I didn't have enough bone volume, then mouldings, then the implants. As I stated before, it's been well worth it for my well-being, even though a long time and invasive. I am now waiting to see the oral surgeon in May to discuss three further extractions that cannot be saved because the teeth have just crumbled and cannot be removed under normal dental procedures.

[DH65 in reply to Vennie]

Yes, I will need the bone graft also but I've had that before with an extraction and it wasn't bad.

I'm hoping one implant might be easier than 3 at a time. I'm glad you recovered. Good Luck with the oral surgeon visit. They are the most qualified to deal with us.

[JackLina in reply to Vennie]

Oh that is wonderful to read. Sorry, not for you but to find someone else who is off the drug and enjoying the better feeling.

Please let me know how you're getting on now.

Not heard of naltrexone. There's hope for me yet!

[Mardi in reply to Vennie]

I had a 4 implant bridge done with12 teeth on it - wonderful- my teeth had been removed years before. Worth the $AUD 28,000 that I paid!!!!! This was before my diagnosis however! I had it done under general anaesthetic in hospital- but of a chicken about the dentist chair.

[dscotese]

A few weeks ago, a friend turned me on to Dr. Joel Fuhrman's book, "Fasting and Eating for Health." He also said that he was only eating fruit, and that inspired me to see what would happen if I only ate fruit for a while. It reduced my platelet count. After finishing the book, I decided to try a long term fast (a week or more). I have too many platelets due to too many megakaryocytes (the cells that make patelets) in my bone marrow, and Hu is designed to suppress bone marrow activity (it's a "myelosuppressor"). After the first few days of a water fast, your body starts eating "extra cells" - well, first it burns a off most of your fat - so I figured that if I fast long enough, maybe I will burn the megakaryocytes for energy and cure my disease. If I remember, I'll come back and report on that, but I guess that should be its own thread.

[DH65 in reply to dscotese]

Yes, please let us know how it goes.

[dscotese in reply to DH65]

I'll make a separate post about this, but since you asked, and I had a blood test today, here's the results:

My platelet count was 476 on May 2nd. My 10-day fast ended on 5/7. My prescription is for 11 1/2-gram pills of Hu each week, but for at least the last two weeks, I've been taking only 9 of them. My platelet count is 387 today.

[DH65 in reply to dscotese]

Wow, I'm impressed was it the fruit fast?

[dscotese in reply to DH65]

I don't know. I've written down all my conclusions and the evidence that led to them in the hope that others might help me tease it out, that the info might help others, and that others would be inspired to share their attempts to effect their own health- whether successful or not.

I am proceeding as if my consumption of meat really exacerbates the problem, but there are other possibilities which I hope to either strengthen or weaken through further experimentation.

Eating only fruit seems now to be a bit too drastic, but that doesn't mean it wouldn't do the trick - just not in a way I'm willing to have that trick done. So I'm mostly vegetarian, but I eat eggs and cheese, not often, but not normally either. I'm sticking with meat only one day a week.

[DH65 in reply to dscotese]

It's hard to find the right diet. I just stay middle of the road with a Mediterranean type diet, a little protein, lots veggies, lesss grains, some fruit, no gluten, little diary and as little sugar as I can. I wonder if a skilled nutritionist could be helpful.

[dscotese in reply to DH65]

Is it just too much work to try out different things? That (experimentation) is how I am gaining my edge against this disease.

[socrates_8]

Hey DH65...

I must say that I love your optimism...

I have been trying to use diet and exercise as a cure for some time now... Generally, I do feel a tad better, however, it is not making a great difference for me personally where my Blood Platelets (BPts) are concerned they are still way to high (800's).

When I was previously on HU, I was also suffering from bleeding gums, and blood in the back of my nose while sleeping...

HU was not tolerable in my case, and while my bleeding gums are now far less frequent, the Ruxolitinb seems to have improved my general state of depression somewhat, and for that I am very glad...

I also am classified as in need of specialist dental treatment because of anemia, and my high BPts. However, I also believe that my bleeding gums was apparent before the HU came along, and is possibly therefore more of a symptom of my MF condition than a side-effect of the toxic med's I must take...

Nevertheless, I will keep my diet and exercising for as long as I am able. I am on a Ketagenic diet (Low carbs/No Carbs). I only have an evening meal, with black coffee or green tea during the day (& water of course). In c. 15 weeks, I have lost c. 15kg.

Generally, most of the time, I do feel better for it. However, I have some new problems developing at the present, and my fatigue levels seem to be intensifying with the onset of the colder seasons, in Australia.

Best wishes and I will love to hear how your experiment unfolds...

Steve

(Sydney)