New to group. Thanks for the connection. I have ET. I was diagnosed in 2008. I was on just aspirin then I tried TCM herbs and acupuncture .

[Nirbhebe]

TCM Herbs and acupuncture was slowly showing results but my doc convinced I go on Hydrea 14 months ago. I was worried before Hydrea! now I have a number of side effects that are strongly effecting my life negatively BUT my platelets look great....toss up which side of this coin is better...

[piggie50]

Hi Nirbhebe,

Welcome to the site. What side effects do you have and did they start when you started the Hydrea or have they come on over the last 14 months. I started 7 weeks ago and have had no side effects so far. I take 500 mg daily. What are TCM herbs?

Thank you

[Nirbhebe in reply to piggie50]

Hi Piggie,

Everyone responds differently to Hydrea...my symptoms did come on after starting Hydrea. Tons of fatigue, itching, numbness, some bone pain.

TCM= traditional Chinese medicine. I was on a formula used usually for an illness TCM calls Bi syndrome...Bi syndromes are usually chronic illnesses. Some acupuncturist tried this herb formula with ET and had good results...So I showed it to my acupuncturist and she was willing to give it a try. Yay! The herbs are a pain to prepare and taste nasty but I felt better on them. I am off them now, just on aspirin and Hydrea. Quality of life is less now. Sad face. But remember, my side effects are mine...sounds like you are tolerating Hydrea well so that's fantastic!

[JediReject]

Ah so those would be Chinese meds = Hi Nirbhebe - gee had difficulty with spellin there. be interestin to hear bout an alternative approach. even hooked in with the dreaded H.

[JediReject]

Say Nirbh - How often do you have acupunture and how does it feel. I read it can stimulate red cell production, whereas the Hydrox in higher dose can reduce it as you know. . so do you still have the acupuncture. So many questions. Cheers

[Nirbhebe in reply to JediReject]

Hi Jedi,

I've been taking a break from acupuncture but you are reminding me it's worth keeping up. My Acupuncturist does community acupuncture. So when you start you have a longer session, get a plan going then future sessions are in a room with several acupuncture chairs. The provider goes along and gets the needles going then you rest and let them do their thing. After anywhere from 20 minutes to an hour you wave or clear your throat and the acupuncturist comes over, removes the needles and off you go. It's a fraction of the cost for a regular treatment, and much more traditional. (As it happens in china) that way even folks of modest means can go several times a week and still find it affordable. Using an acupuncturist who has gone to an accredited acupuncture school means you get assured quality care within a framework of medical needling as the system is intended. Chiropractors and MDs who offer acupuncture often have very little training and just learn a few protocols, usually for pain. Anyhow...I've gone off on a rant. Best to you

[Twinkly]

I'm worried about the practicing of acupuncture on we with these blood problems we bleed so easily and we are suseptable to infections too ,,I did have acupuncture for back pain ,it was a god send then ,but I feel it's best to find the experts in conventional medicines and work with them ,and we are what we eat ,so really work on the good diet from the inside ,building healthy tissue iv seen such excellent results,it's true.

[Nirbhebe in reply to Twinkly]

Thanks Twinkly! We do need to be true to ourselves....sounds like you have a solid plan working for you. That's fantastic!

[lizzziep]

Did you get the side effects straight away? I have ET, diagnosed just over 2 years ago, I've been on aspirin until 5 weeks ago when I started on Hydrea. I had alot of acid in the morning at first, which is gradually fading, and I'm still getting a few headaches. I had a test after 2 weeks and my platelets had gone down but not by much so I am now on 1000mg one day and 500mg the next. I go back next week for my next test. I'm hoping they've come down a bit more. Like you say it's take the hydrea and get the platelets down or risk clotting!!! Good luck for the future.

[Nirbhebe in reply to lizzziep]

Hi Lizzie,

I had a similar first few weeks with Hydrea. The symptoms do wax and wane...I think at first they were scarier to me...the newness and all. Now I feel less fear and more annoyance. It's all part of the deal I guess.

Best of luck to you too.

[TrickyDicky]

Hi Nirbhebe

I started on aspirin and hydroxy initially on a low dose with little effect but due to rising platelets this was increased. Because I wasn't comfortable being on hyrdroxy I wasn't particularly compliant but as the dosage increased so did the side effects. The worst thing for me was the mouth ulcers. I am now on aspirin only thanks to the support from mpd voice who gave me the confidence to challenge - politely - my haematologist. My platelets have always been below 1500 and so with support I was gradually weaned off hydroxy. Fortunately my platelets are remaining low enough to stay this way for now. So it very much depends on your personal circumstances. My understanding is the trade off between risk of complications such as stroke with high platelets compared to minimising medication. This will be something to work through with your haematologist. Hope this helps.

[Nirbhebe in reply to TrickyDicky]

Thanks Tricky....your comments do really help. I have a second opinion appointment coming up. I may shift to a new clinic if it seems that they would be open to weaning me off the HU.

Take care

[Hidden in reply to Nirbhebe]

Hi Nirbhebe,

Keep us informed if you will be attempting to wean off the hydrea medication. What is your present platelet level, and how long have on been on the Hu med?

I know the the meds have to be increased and then decreased over a period of time. to get to a certain level below 400, and then what the individual decides to do is their choice..

Please make us a post as to whether you are able to do it with your doctor's permission, and if so, what you regime of daily intake of the medication will be on a weekly basis with changes.

Thanks, and have a Happy and Healthy New Year.

Adail

[Nirbhebe in reply to Hidden]

Well, my doc was not on board. I got a second opinion with a platelet specialist at the university in my town. She was in agreement with my doc....so for now I'm staying on HU. I'm trying to get a better attitude...but I long for an interferon trial....so my plans are foiled

[Hidden in reply to TrickyDicky]

Hi Tricky,

What was your platelet level when you started weaning off the Hydrea, and how many millegrams were you taking daily , Also, if you don;t mind me asking are you over the age of 60, that they claim is the high risk, that is if one does not have any other medical conditions such as: high blood pressure, previous stroke, or heart conditions?

Appreciate hearing from you.

Thanks,

Adail

[TrickyDicky in reply to Hidden]

Hi Adail, I'm 41 now, was around 39 when I was supported with weaning off hydroxy. From recollection my platelet count was quite low at the time and I think within the normal range as I'd been on hydroxy for quite a while up to that point. When I was first put on hydroxy my platelet count had just topped 1000. I was initially started on .5 increasing to 1.5 and then the same in reverse when weaned off. I've been off hydroxy now for just over a year. My platelets have fluctuated in the high hundreds between 700 and 900ish since I've been off. I have had venesections several times since I've stopped the hydroxy to keep my haematocrit down. Otherwise so far so good. Hope that helps.

[Hidden in reply to TrickyDicky]

Hi Tricky,

If I read correctly what you typed: platelet count topped 1000, started Hu med 500mg daily, then increased to 1500mg daily, then the same in reverse? What does that mean in daily mgs taken weekly?, and how low did your count go to when weaned off? You also mentioned that you had several venesections. From what I have read platelets have a rebound effect when having that done. Take notice if your platelet count starts to increase after the blood letting sessions.

Appreciated hearing from you. Trying to find others who have tried or considering weaning off the Hu med. It is not done easily, and lots of rebound effect when being done.

Thanks,

adail

[MaggieAggie in reply to TrickyDicky]

Hello Tricky Dicky, I was interested to read that your platelets have always been below 1500, as my own for 12 years have been between 590-890 on aspirin alone, and a sort of agreement I made with my permanent consultant at the time was that when either my platelets reach 1000 or I reach 60 yrs, I would then consider going on HU. 1500 in comparison sounds horrific, but obviously its not, maybe you are a lot younger than me, & that probably makes a difference. Or possibly the fact that I sometimes have to many red cells also treated by venesection as and when, also makes a difference. Interesting!! MAGGIE AGGIE

[JediReject]

Cheers for your interesting reply Nirbhebe. . I find alternative cancer management a fascinating area and if I had the funds I might have been tempted to explore some of the natural remedies which have been touched on here a good time back. But Im a long way on with the HU and apart from that I'm on a low income. I know there are things you can do on a budget diet wise etc but I guess we put our trust in conventional drugs. So good luck to you on whatever you decide to do in the future. Cheers

[Hidden in reply to JediReject]

To Jedi.

I have googled some sites on E.T., as well as alternative approaches, which to date there is none, Try googling mejthrombocythameia a site for E.T. and P.V.. Sometimes it is spelled thrombocythemia. You will come across a posting of someone who has tried an alternative approach, but it took that person more than a year to be successful, but was not any hydrea drug to start with. Just google., and anyone can join.

Adail

[JediReject in reply to Hidden]

Dear adail thanks for your thoughtful reply, one of the things I appreciate with our forum is that peops just want the best for one another as we all know how difficult it can get. I will take a peek tho I have MF and like I say Im well on with traditional meds and could be moved onto Rux sometime in the New Year. Cheers to you.

[Twinkly in reply to JediReject]

Hi there JediReject .if you do get offered ruxolitinib ,seriously consider trying it! At the forum we were shown actual slides of patients with enlarged spleen ,now in reduction ,if you don't do well ,you can always revert to the old treatment ,, Be well ,,,x

[Nirbhebe]

Thanks Jedi, best to you as well!

[Sherry2]

Hi

I was diagnosed with ET and recently started Pegylated Interferon Alpha.

the side effects are minimal (slight headache). I take it once a week at night, which means i sleep off most of the side effects.

It is too early to see the impact or to confirm if dose is correct, but I am hopeful.

Hope this helps

[Nirbhebe in reply to Sherry2]

Thanks Sherry2 keep us posted on the interferon. I'm envious!

[MaggieAggie]

Hello Nirbhebe I don't know anything about TCM herbs or even what they are. But I agree totally with your comment ...tossup which side of the coin is better! Diagnosed 12 years ago with et & put onto aspirin, then it changed to et Rubra Vera. Checked every 12 weeks since. Not a lot has changed over this time really, platelets varying from 590 - 890, but as I am on medication for high bp& statins, they say I am high risk for stroke. But, seeing lots of people's comments on this site on various side effects they are constantly suffering on HU, I think I will stay off it as long as I can. My biggest concern lately is sleeplessness, but I they tell me this has nothing to do with the condition. Hope things are better for you soon MAGGIE AGGIE