Hi I had an telephone appointment with my haematologist nurse specialist today . She gave me my results of my most recent blood test. My platelets have jumped from 892 to 1142 . She said my chemistry was fine including my ferritin which had gone back to normal range . I have been taking iron tablets for the last three months . My monocytes were slightly out of normal range which apparently is because of inflammation .she said this also could be due to the fact I have Parkinson’s disease too. They are not going to start hydroxy this time but will consider if this increases to 1500 . At the moment I’m getting symptoms from the increase I’m ET JAK 2 positive. I have burning aching hands and feet and have really prickly skin ,especially after a shower. Has anyone else had similar experiences ?
Increase in platelets : Hi I had an telephone... - MPN Voice
Increase in platelets
Gosh I went onto hydroxi when First diagnosed and my platelets were 800+.I’m high risk I had a stroke 10 yrs prior to diagnosis ( et CALR). Are you under an MPN specialist? Is it your Parkinson’s that prevents you from taking meds for ET.?
Hi Wyebird no it’s not my Parkinson’s meds they just say I’m not in high risk bracket . I’m under haematologist specialist nurse in Mpn’s . How do you find hydroxy ?
I couldn’t wait to start hydroxi. As my platelets went down so did my symptoms( fatigue and lethargy) I think you need a second opinion FAST!!
Hi Wyebird . That’s so good to know . I’m uncomfortable at the moment with the symptoms . I’m battling PD too! I’m in the UK x
Get a second opinion. You need support. Maz should be able to recommend a list.
I have an amazing mpn nurse and consultant . They always ask how do I feel ? What are my thought? We then discuss my dose and symptoms together.
Having PD is a double whammy.
I will ask Maz. Thanks very much Wyebird.
Wouldn’t you feel a whole lot better if your MPN SYMPTOMS diminished greatly. Fingers crossed xxxxx
Here is a list of MPN Specialists mpnforum.com/list-hem./
Are you sure your provider is a MPN-Specialist rather than a regular hematology nurse? Most hematologists will move forward on treating you, but actually have very little experience with MPNs. It is a good idea to ask the provider how many MPN cases they have treated.
Regarding the other symptoms you are experiencing,k they are fairly common. Something to know is that there is not distinct line between ET and PV - it is more like a continuum. You can show with symptoms of both. Dealing with the systemic inflammation that comes from the JAK2 mutation can be really challenging. These kinds of symptoms tend to respond better to Ruxolitinib or PEGylated interferon that hydroxyurea if you do need to consider medication at some point. There are also other interventions available to deal with the inflammation issues. Integrative (Functional) Medicine docs are often a good choice to look at those kinds of interventions.
Hope you get some relief ASAP.
Hi Hunter thank you for your advice . My symptoms are causing me so much grief! I’m taking 300mg of pregabalin and 15mg of codeine phosphate i am either in so much pain or in space . I was told all the Chemistry part of my blood was ok. U and E bone mg and lfts ,ferritin , I wonder what all these meds are doing to my system long term?
I did take Lyrica for a brief period of time. It made it so hard to concentrate that I had to stop taking it. Pregabalin can decrease platelets, but it does not sound like that is happening to you. I would be more concerned about the codeine long term. Something my Functional Med cod discussed with me is Low Dose Naltrexone. It might be worth considering as another option. I hope you find a Functional Med doc you can talk to about options like this.
Al the best
Hi Yes it’s very hard to concentrate with pregabalin and codeine on top . I’ve read that both drugs are extremely addictive. I tried coming off pregabalin and followed my physician’s advice , only to be in extreme pain at 100mg dose . I will look at a functional Med doctor, but never heard of them before? Also naltrexone . Thank you very much Hunter
Functional Medicine (aka Integrative Medicine) is a holistic approach to medical care that looks at the whole body as a system. There docs are Western trained physicians, but tend to be open to complementary health approaches when indicated. Will typically look at nutrition, exposure to toxins, and other things regular docs usually do not consider. No miracles here, but can be very helpful.
All the best. Hope relief will be found ASAP.
Hi Hunter have wondered if my diet could be exacerbating my problems. I tend to eat the wrong things when I’m anxious . I’ve decided not to put any more hair dyes on my scalp . This pandemic we are going through has made me sit up and think of all sorts of things . I can live with grey hair !! I used to be a heavy smoker and I know this has been linked and can cause a secondary PV ,all those toxins not good. Thanks for your best wishes
An anti-inflammatory diet can definitely be helpful. Some foods are pro-inflammatory and definitely not our friends. A healthier diet really does just make you feel better overall.
BTW - Grey is beautiful!
Thanks for your advice and encouragement Hunter
Thanks hunter
I'm glad you've had some good advice, I find it upsetting to read of people in pain and really quite high platelets ,not appearing to get the right treatment. Your doctor's really need this to come down ,I'm surprised you haven't started hydroxy carbamide or a similar treatment, as you have been diagnosed with et jak2 your quite a high risk patient. Have you someone to talk too. You can get a buddy on here if you ask the administrator.
Hi
Your doctor thinks if your platelets increse until 1500, you will be in risk a for this reason you will take Hidroxiurea. I undertood it. How los are you? My doctor believe than with 550 platelets and my age and hematocrit 48 I have to take Hydroxiurea. Very diferent opinion.
Thanks
Hi soledadBarcelona That’s such a big difference in opinion . Thanks for that !
Hi - yes, I have burning toes and my upper back is extremely sensitive - prickling, itching, burning sensations. I’m told the feet thing is erythromelalgia and a symptom of my PV. I have low level headaches most of the time, which get worse in the night, so my doc has increased my hydroxycarbamide - so far, no difference. But I’m getting great treatment and life goes on....
Hi Tomsgranny
It’s extremely troublesome I know exactly how you suffer with this ! I’m taking anti histamine for it . I get worse when I’ve been in water . Best wishes to you .
My platelets were 1300-1800 range for 10 years before i decided to go on Hydroxy. The Dr told me about them. But i didnt want them for various reasons. However. About 18 months ago i started on hydroxy. I dont get prickly skin anymore and platelets came down. My spleen returned to normal size too. However i have heard that Hydroxy is not a long term solution but ill have to ask to Dr what is classified as long term.
I started off with ET Jak 2 positive in 2008 and my hematologist immediately started me on hydroxy. My platelets were about 600. Your other symptoms seem concerning to me. I would definitely seek out an MPN specialist.
Hi Kiki: I used to have tingling feet - really bad but after five years in hydroxy that has gone. Skin, however, is bad. Lots of horrid scaly (sp.?) areas: arms, hands, face, legs plus mysterious (to me) little red blotches. No pain but very
unsightly.
Hi Kiki64
I am so sorry for what you are going through. Why don't you ask Maz what her thoughts are on continuing with the iron medication. Maybe it is time to stop. You can't look at your platelet count in isolation. Check you red, white counts, your Hematocrit, Haemoglobin levels. In combination with your platelet count it all tells a story.
God bless
Anna
Hi Kiki,
I’m sorry you seem to be suffering.
I am ET Jak2+ too.
I take hydroxy because I am high risk.
I have burning hands and feet and my skin prickles after the shower. I had put it down to the medication, but it looks like it is the disease that causes it,
I hope they can sort your medication to make you feel more comfortable.
Kind regards
Marcia
Hi mardigras
Does the Hydroxy help. I think I may go mad if it doesn’t .
Thank you so much for sharing with me your journey. Best wishes to you
I’m sorry, Kiki, but I am on hydroxy and I still have prickly skin and problems with my feet and hands.
It may well be that it would be more severe if I did not take hydroxy, i’m not sure. I also get bone pain and several other symptoms that might or might not be related to taking hydroxy.
I wish I could be if more help.
Kind regards,
Marcia
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