Has anyone else had problems with bringing they're platelet count down? And finding the right treatment and dosage to do this?

[Tinkerbell75]

Reading people's comments on here seeing others platelet counts, compared to how high mine were is quite worrying. The highest mine went up to were over 3000 but thankfully after dosage changes to the interferon Alfa a injection I inject weekly now on 180mcg, they have now gone down to just over 1000. Anyone else had problems with bringing they're platelet counts down? And finding the right treatment or dosage? Although my haemotoligist has mentioned I may also have to start taking a chemo tablet (hydroxycarbamide) along side the injection. Which is quite worrying but not certain yet depending on if the platelets come down enough.

[Kiki64]

I’m sure the treatment you are on will carry on bringing your platelets down to where your haematologist wants them . That’s fantastic already, considering they were that high . Best wishes

[Plumberasscrack]

I had that same problem my platelets at 1200 And was diagnosed with JAK2 and was told I would be put on hydrea, I told my doctors that I would do my own research on the drug before I would take it. I had other issues and was ordered to take a bone marrow biopsy.

My doctor at that time wasn’t helpful after I told him I wanted a second opinion so I went to my primary doctor and he recommended someone else, she described what I had a said it’s a good thing I didn’t go on hydrea.

I am currently on a drug called Jakafi and I’m just starting to feel a little better.

Ask your doctor about this medication.

Good luck, be well

[Tylerdog1]

I’ve also been taking Interferon - started January and it’s working, slowly but surely. Started on low dose, being increased every 2 months and now like you on 180mcg. Platelets were 1500 now just below 1000 for first time in 10 years. My target is 800

Hope yours come down soon

[hunter5582]

There is some research out on the combo of PEGylated interferon and Ruxolitinib (Jakafi) that looks promising. For myself, I would look at that option. Each of these medications has its own risk/benefit profile. You have to evaluate which is in your own best interests. May people use hydroxycarbamide (hydroxyurea) with little or no problem. Others, myself included, cannot tolerate this medication. Hydroxyurea is a "highly toxic medication with a low therapeutic index" per the NIH. That does not mean you should not consider it, just that you need a thorough understand of how it works, what the risks/benefits are, and what precautions to take when you are on HU if you choose to take it.

It sounds like you are having a great response to the interferon. From 3000 to 1000 is really good. Some people are able to tolerate platelet levels this high, though that varies widely. Perhaps the numbers will continue to creep downwards. Have you seen remission of any of the other symptoms that accompany your MPN? That is just as, if not more, important than a specific lab number on your CBC.

Do let us know how things go. All the best to you.

[Windy51 in reply to hunter5582]

Hi what do you mean about the Hydrea please

[JojoWonder]

Good morning,

I was diagnosed with ET last year and my platelets were just shy of 1200 at their highest point. I started on peg interferon but it had no effect. Hydroxy was then added at first 2 tablets a day and my numbers plummeted to 600’s quickly. I was reduced to 1 tablet a day and I stabilised in the 500’s. I realised at the tail end of last year I was feeling quite unwell. It was a gradual thing, general feeling of illness, brain fog, low mood. I was taken off Hydroxy and felt better almost at once. The good news is my platelets are now in the 200’s! I’ve also been able to reduce my interferon to one 90 injection a week. I think I needed Hydroxy to kick start the process as interferon is a slow acting drug. For me it’s taken about a year to get my platelets where they need to be.

You are doing incredibly well especially from such a high number? Are you CAL-R mutation? We usually have higher numbers but lower clot risk (but higher bleed risk 🙄)

When I was first diagnosed I read constantly that it’s important to stay hydrated. I have really found this helpful and find that I seem to have better results if I’ve made sure I drink plenty before blood tests. Is this scientific? Who knows but it’s encouraged me to up my fluid intake and my results are good so I’m continuing.

Good luck with getting those numbers down. You’ve done amazingly already.

[socrates_8]

Hey Tinkerbell...

You are right of course... 3,000 is a huge number. I personally have not heard of such a number previously, and I look out for this type of thing...

I also once had extremely high platelets, 1.7M (or 1,700 if you like), both HU and Interferon will help bring them down. However, as Hunter mentions above, I too would be less inclined to ever take HU again. There are so many adverse evidenced-based reports out there that suggest HU can cause a myriad of some quite serious issues...

However, again... Every one of us is different and unique within our MPNs & our own bodily chemistry, and therefore, one might have an entirely different experience w/ taking HU.

There are certainly quite a few people here who might say that for them it was some kind of wonder drug...

Presently, I am Post ET / MF taking Ruxolitinib (Jakai), 25mg b/d, w/ low dose enteric-coated aspirin daily...

I am aware of a few others who were taking Ruxo-Peg, w/ varying results, some good and some not so...

Sounds like you have a better doctor now, and perhaps the Interferon will eventually achieve a lower Platelet regime for you, as it once did for me. However, I also suffered other side-effects w/ Interferon Alpha. But my Platelets achieved their best ever result at 537...

Now, they are always in the 800-1M range... and I am looking into undertaking a Clinical Trial that is a combination of Rux' and another drug known as 'Navitoclax'...

Best wishes Tinkerbell... and as Hunter mentioned above, do let us know how you get on...?

Stay safe & well...

Steve

[Wyebird]

The highest mine went to was 802. I responded well to hydroxi and remained stable for the first 8 months. Since then it’s taken 4 years to Keep them 360-440 ish as when platelets rose meds were increased.

I’ve been stable for 1 year now. Relief!!

[Anag]

Hi Tinkerbell!

Mine jump around a lot, but they’re not as high as yours. Sometimes we get resistant to the meds we take and we need to change. Don’t worry, just because something is called chemo. Some of us need careful monitoring much more often than others. Do it and keep a good tab on yourself. By the way, since I started taking turmeric 2000mg with Curcumin 650mg daily, my thrombos are down by 350/400. To really know that was the real cause I will check till Oct/Nov. I’ve been taking this since March. I must say, I did take out all 30 of my amalgams between Feb 2019 and Jan 2020. It was hell. I though I was in 3rd stage Alzheimer’s. Did lots of detox.

I will write about that when the time comes.

I wish you all the best in this change!! Anag

[mochapie in reply to Anag]

Hi can I ask a question I have two metal f fillings and I was reading your post and one dentist said we've got to get those out of there ;another's opinion was they last forever let's leave them in . but I'm a massive night grinder and I do have a mouthguard but there are times I feel dizzy for no reason and I feel foggy for no reason and I do have high platelets and I've had them for over 5 years and I'm wondering if those amalgams have to do with having high platelets and I read your post so any information you can give would be appreciated . I don't have as many as you had but I have two and I'm getting conflicting response on what to do with getting them removed , but I'm just thinking as a massive teeth grinder is that metal just being constantly detached into my mouth at night, then throw some light snoring on top of that and just think of all that metal that could be going into your throat while you're sleeping

[Anag in reply to mochapie]

Hi Mochapie, Our amalgams are about 55% mercury. The greatest toxin known to us, yet it has been put into our mouths for decades. Mercury gases off, when chewing, eating hot foods, brushing teeth, especially when grinding. One doctor wanted to get them all out in 1992. If he had done that, it would have been the end of me. At that time, research was starting to prove the devastation mercury causes on the body. My daughter was born with my mercury!!!! She was Aspergers and ADHD, could never learn for more than 5 minutes. We detoxed her and she can now study for 12 hours straight if necessary.

Removing amalgams needs special procedures, an experienced dentist and long term mercury detoxification. Those procedures were not yet developed In 1992. After removal, only 2 teeth done at a time, a special cement was put in and kept in for 9 months to a year, in order to absorb any mercury that was still in the microscopic canals of the teeth. They were then removed and I had ceramic inlays put in. I still have 5 teeth to go. All top left. Not cheap, but my mouth is beautiful and safe. Gold is also an option, but since 5G is coming, I don’t want to become an antenna!

Taking them out is tough. mercury gases off and you (and the doctor) breath it in. A special drill is used. The tooth has to be sectioned off so no pieces get down you esophagus. I should have had oxygen, but no doctor has that here in Vienna. I took Chlorella (nano-technic for best uptake) Detox before each procedure and also, I swished and rinsed my mouth with a special solution that binds to any mercury still in my mouth. Of course some gets swallowed, which is good and whatever may have gone down it transported out of the body. Then I continued Chlorella for 6 weeks after each removal. Nevertheless, my brain was affected. Terrible memory, short and long term! Brain fog, Dizziness, coordination problems. It took 2-3 months to recover after each removal. That’s all over now.

Most doctors In Europe are grossly uninformed About amalgams, especially here in Austria. Worst dentists in the world. I interviewed 6 in order to find the right one she’s amazing. I’ve had work done in Bodton, SAN Francisco, Canada, England, Denmark, Greece, Germany, even Japan! I know what I’m talking about.

In the meantime, 50% of all dentists In the US have metal free offices. That alone tells us where dentistry is going.

Note: I was a straight A student in advanced classes. At the age of 15, in Feb-April, I got 19 amalgam fillings within 2 months. Most of them were big and deep. Nightmares, hallucinations, massive depression, lack of concentration, anger issues, sleeplessness, weight gain were the result. My grades dropped badly. I passed most classes with a D. Let’s say the teachers pushed me threw. A year later, I almost took my own life. At the age of 54, 40 years later, I finally got that crap out of my mouth.

I also remove two root canals, that were not really ok. There was a light shadow around the root in the X-ray. That’s called a cavitation. Most dentists don’t care about that either The dentist didn’t want to do it. “You’ll lose teeth!” So what? It’s a low grade infection that never gives my immune system a break. Same as the amalgams.

Mercury also has an affinity for our thyroid. It gathers there. The system notices this and runs to the thyroid to kill the mercury. In the ensuing battle, thyroid cells are destroyed and the mercury moves somewhere else. This is one reason for Hashimoto thyroiditis, which I've had since my teens. Also: By switching to bioidentical thyroid hormone, I have now managed to reduce my hormone intake by 60% and last week, an ultra sound proved that my thyroid has grown. The right one even by 40%.

Please check good internet sites regarding amalgams and removal, take time and make that move. We need to reduce all inflammation in our body. Anything that causes problems must be removed from our environment in and out of our bodies. I’m doing well. Better than 5 years ago, despite my meds.

Hope to have helped. Anag

[intothewoods]

My partner’s were over 3000 at one point - settling around 2400 and now after Hydroxy for 10 months and switching to Peg for the last 7 months, they are around 750. He’s triple negative.

Other counts dropped very low and some evidence of liver damage from the peg (we hope!?) so not sure what the future holds. It seems that for some folk it really takes a while to figure out!