Platelet raise

[Oscarsboy]

Hi, just wonder if anyone has had the following issues. Been on Hydroxy now nearly two years and suddenly platelets are on the rise again, back up to 460 from 409 three weeks ago and in the 300's susbequent to that. I am ET Jak2 . Can anyone enlighten me on what the indicators for this may be ie can meds stop working, could it mean progression etc. I do not have another appointment until mid July but have contacted haemo department to query, as this was an independent test taken whilst I am away, which is normal procedure for checking bloods etc. Am anxious about the continual raise. Thanks for any replies you may have.

[Cat1001954]

hi Iv had ET for 10 months been on hydroxy. 1 a day all my numbers have gone up and my meds have been increased to 2 every other day and 1 on other days no reason why

[Oscarsboy in reply to Cat1001954]

Ok thank you for that info. You just hope that after two years it would be reasonably stable of the usual meds. I have queried in case I need to adjust.

[Cat1001954 in reply to Oscarsboy]

try not to worry my heamatologist said that my rise might end up being my normal number so don’t worry yourself too much x

[Bazzak]

May not be helpful but I have been on hydroxy for a number of years and have ET jak2, the only times my platelets have gone up is when I've had a heavy cold or infection but they always return to normal after.

[Oscarsboy in reply to Bazzak]

Thanks. Don't have either at the moment although I have some bad inflammation going on for which I'm awaiting ultra sound.

[Bazzak]

That may be the reason, wishing you all the best and I'm sure you're platelets we reduce soon.x

[netty64]

If you have been or are unwell this can cause platelets to rise.

[Andrew8]

Best to contact your haemotologist ASAP, and get advice.

[HazeBlue]

I’ve been on Hydroxy for twelve years but platelets still go up and down . Also Red cells up too. Hate taking these drugs . Has affected my hair and skin . Heam says it’s tge best drug to use though as others have more side effects .

[Oscarsboy in reply to HazeBlue]

Hi HazeBlue. Yes me too I hate taking it but know they all have side effects. It has also affected my hair etc. I take a pure marine collagen to try and help with skin and nails etc, but it doesn't stop the hair loss sadly. Thankfully all my other bloods seem within right perimeters.

[Exeter21 in reply to HazeBlue]

not true about best drug it’s the cheapest & they don’t like recommending other good drugs . I was on Hydroxy hair fell out , caused gastric problems. Saw MPN Consultant & changed to Peg Interferon which has been excellent & hair grown again . I inject monthly . Hydroxy made me exhausted & the Interferon has given me back my fitness & health . I am ET Jak 2

[Oscarsboy in reply to Exeter21]

I do plan discussing this at my next f to f in july but imagine being fobbed off with you are too old etc because it is so much more costly. Thank you for your reply, however am going to pursue it.

[Exeter21 in reply to Oscarsboy]

yes there are excellent options now for our treatment . Get a referral to speak with Professor Harrison at Guys Hospital. She is MPN expert . I would still be very ill on Hydroxy if I had not contacted her . Good luck 👍

[Bantams123 in reply to Exeter21]

Hi I am interested in what you say regarding hydroxy. I have been on it for 10 months and although it is controlling my platelet I suffer with debilitating fatigue and muscle aches in my legs. It is like my body just shut s down. My haematologist says fatigue is normal when taking hydroxy but this ain’t normal fatigue. I don’t know if she is a men expert, perhaps I need to find out.

[Exeter21 in reply to Bantams123]

I can definitely say the Hydroxy caused horrendous fatigue & side effects within a month of being on it. I was only on 500 per day 5 times a week my life changed dramatically. I was fit healthy cycling walking etc before Hydroxy. No symptoms from ET Jak2 diagnosis & platelets 590. All discovered from a shoulder injury sailing. I had severe muscle tears & inflammation & exteme pain from this injury . I asked for blood tests when it did not heal & ET was diagnosed. My platelets had been normal on tests 18 months previously.

The Fatigue was from the Hydroxy. I was exhausted. I could sit down & be asleep immediately. It was abnormal & the aching I was sure the drug. It then gave me horrendous gastric problems.

I came off it & took nothing. Within 3 weeks my energy was back & no muscular aches or pain . I refused to go back on it . I stayed drug free for 6 months & my platelets hardly increased. I tried Peg Interferon next but adjusted weekly injection to monthly. I feel normal , fit & no tiredness. However I made a big effort on none inflammatory foods. Do not drink as even a small glass of red feels awful. Lots of water . Lots cope with Hydroxy but it was the worst I have ever felt on it . Glad I made the choice to Interferon . 👍

[Oscarsboy in reply to Exeter21]

Thank you for your reply. I too am now going to look at Peg on my next f to f in july.

[Oscarsboy in reply to Bantams123]

Thankfully I do not suffer fatigue too much, other than sleeping issues. Yes I think you are right. Check out whether there is an MPN specialist you can refer too.

[Exeter21 in reply to Oscarsboy]

Professor Claire Harrison is brilliant Guys Hospital London . I wrote to her & now get phone consultation s she is so knowledgeable. I still go to my local hospital for my Haemotology but glad I made change to Peg Interferon . 👍 Julia

[Oscarsboy in reply to Exeter21]

Thank you. I have see her once initially as I had a referral by a consultant at my local hospital. It's very helpful to know, and if after I have had my f to f in july I feel it is not taking me anywhere, I may well do the same and refer back to her by writing.

[Mirror368 in reply to Exeter21]

I am very interested in your progress. What dosage did you start taking Pegasys? How long to monthly injections and what is your current dosage?

Thank you, Eileen

[Oscarsboy in reply to Mirror368]

Hi thanks for your reply. I am actually on Hydroxy not pegasys so am sorry cannot answer your query.

[Exeter21 in reply to Mirror368]

Eileen I started on 45 weekly however I was getting bad headaches after a few weeks . But in 4 weeks it bought platelets down to 300 from 590. However the headaches were a side effect. So Professor Harrison reduced me to monthly on 30 , for my body to get used to it. I am fine on that dose & feel very healthy & energy. No side effects . I have my bloods checked every 6 weeks at present. It is a slow acting drug but very good. Injection no problem squeeze skin on stomach then put ice or freezer pack to numb skin. Never feel anything. Very good . Julia 👍

[Exeter21 in reply to Mirror368]

Eileen they started me on 45 a week Interferon . I reacted to that with bad headaches but tried for 6 weeks. I then consulted Professor Harrison who changed me to 30 monthly then 45.

I am fine on this dose no headaches or reactions . I inject mornings as it worked better than night for me. Daytime you can drink plenty & excercise which I feel gets it through system than lying in bed .

It is a journey of experimenting & it’s now 15 months since diagnosis. I am still experimenting on doseage but platelets dropped to 300 on weekly dose . Rise slightly on monthly but no side effects whatsoever. Julia 👍

[RazB]

hi, your platelets are still within healthy range and the increase isn’t very big. I’m ET jak2 pos. I’ve been on Hydroxy for 15 yrs, platelets we’re at 1550+ when I started. They came down slowly but have never been below 520, I take 3 Hydroxy 4x a wk and 2 the other 3 days. I have tried taking more to get platelets to about where yours sit but I can’t tolerate it. My consultant (Prof Harrison) has agreed that they can stay in the 500 range and we monitor them. They definitely move around and sometimes are +600. Try not to worry, I’m absolutely sure that stress can be a major factor in our platelets (and other things) moving out of line. X

[Oscarsboy in reply to RazB]

Thank you so much for your reply. I saw Professor Harrison once early on in my diagnosis and now under local team, and one of the consultants works within her mentorship. It is reassuring to know that. When things suddenly appear out of the norm concern creeps in, so thank you for your input.

[STK52]

hi, I have PV and my platelet count is nearly 900. It doesn’t answer your question, but hopefully it provides tiny bit of reassurance.

[Oscarsboy in reply to STK52]

Thank you.

[Wyebird]

I’d say it was nothing to worry about unless you feel different. Anything over 400 and haemoglobin in the low 10s and I was just existing.

July isn’t far away but if it’s worrying you that much and it would me, contact your team

For 6 years nearly every 3 months I had to increase my Hydroxicarbomide/ anagrelide due to a platelet rise ( I think I went a whole yr once without a meds rise 😀)

Interferon has made a huge difference to my life.

Hope you get sorted soon

[Oscarsboy in reply to Wyebird]

Thank you. Definitely going to pursue a change. Am so glad it works really well for you.

[HazeBlue in reply to Oscarsboy]

hope you get on well and they change drug . I’m going to ask to change . Ulcers on tongue and can’t eat . Might be due to hydroxy ,

Hazel

[Oscarsboy in reply to HazeBlue]

It's definitely one of the side effects. Thankfully haven't had those. I've just been reading up the difference between interferon and pegylated interferon. It's worth having some ammunition I guess ! Hope all goes well.

[HazeBlue in reply to Oscarsboy]

what’s the difference then please .?

[Oscarsboy in reply to HazeBlue]

As there are many very knowledgeable people on here and on the treatment, I would leave the correct detail to them to explain . I googled it to get some insight as to what the difference is between the two.

[Another_Possibility in reply to HazeBlue]

Yes, this is a known side effect of hydroxyurea. What is your dosage?

You may also want to try rinsing your mouth with peroxyl. It's an over-the-counter mouthwash made by Colgate here in the US. Don't know if it's available in other places. It's 1.5% hydrogen peroxide. Doesn't taste too bad. Also, I would avoid eating spicy foods. Hope this helps!

[Oscarsboy in reply to Another_Possibility]

Hi. I don't actually have the mouth ulcers myself, I was just in reply to a comment of someone who did and is looking to change meds. Many thanks .

[HazeBlue in reply to Another_Possibility]

just increased to two a day six days a week . Can’t eat hardly as so painful .

[Mirror368 in reply to HazeBlue]

HazeBlue,

Regarding ulcers….to minimize this I swirl water around my mouth before swallowing the capsule and follow up with full glass of water. Any time I have an ulcer I gargle with warm salt water. Eileen

[Cokopops]

Morning. I’ve just been through the exact same thing. On hydroxy for almost 3 years, platelets going down from 700 to 420 and few weeks later started to go up again. Meds was increased to 2 a day 5 days a week.. and platelet down again. No reasons as far as I know. Haematologist said to carry on with same meds till next appointment at the end of the month. Then hopefully reduce the dosage. I know it’s worrying but apparently common. Best wishes

[Oscarsboy in reply to Cokopops]

Thank you. Reassuring.

[shiftzz]

Just be aware that machine have variance. I had a blood test at one hospital and a week later a different hospital the results were 50 point different..

[ainslie]

one thing to factor in is different labs tend to give different results, platelets as we know can jump around. Drugs can stop working or may need an increase. Platelets in the 400’s is just above normal so nothing urgent unless you have other risk factors or symptoms.

Best try to get a retest where you normally get labs and see your Haem. Also levels vary on what time of day you do the test (more dehydrated in early morning can give higher counts). Flying and alcohol can increase counts. With counts it’s the trend we should follow and not to be concerned about one unusual count. From what you say it looks like trend is maybe slowly up in which case it’s one for your Haem.

[Oscarsboy in reply to ainslie]

Thank you, yes that was myt hinking, it has been trending upwards for the last few tests, so am in touch with Haemo Dept now and awaiting a reply until I have next appointment.

[Minu68]

Just wanted to add in that platelet count can also come out higher if you are dehydrated. Make sure you drink plenty of water throughout the day. Mine regularly vary by 50 - 100, depending on inflammation that I get in my joints/tendons. I know if the inflammation is there when I get a blood test, the count is likely to be higher. With ET, our bodies overreact to any inflammation, making it worse sadly, so looking at diet and supplements to help reduce inflammation can also be helpful overall.

[Oscarsboy in reply to Minu68]

Thank you for that advice. I do havew a lot of inflammation going on at the moment, which is in my shoulders and having scans for that soon as the physio I saw thinks it is inflammation of tendons/shoulder muscles, so may be a contribution.

[Minu68 in reply to Oscarsboy]

It's not easy is it, I get it in my fingers and sometimes hip/knees. So weird, but yes, think it could be a factor for you like it is for me. Hunter has posted about anti inflammatory diet, turmeric and other things you can do to help. Cutting out sugar and processed food I've done, think it has helped a bit.

[hunter5582]

Fluctuation from 409 to 460 is well within the normal variance in platelet levels. It is normal for platelets to vary by as much as 100K in response to what is going on in your body. It is the trend over time that matters, not a single lab.

If you are interested in changing meds, it is important to advocate for that change based on meeting your treatment goals, a medication adverse effect profile that falls within your risk tolerance, and ho your preference for how to approach treatment. If you believe that another medication (e.g., Pegasys) is preferable based on your treatment priorities, then it is your prerogative to advocate for that choice. This is a conversation to have with a MPN Specialist, who is more likely to be comfortable prescribing a medication like Pegasys.

Wishing you all the best.

[Oscarsboy in reply to hunter5582]

Thank you so much for your valued reply. I have taken on board all comments, and have been thinking for quite a while about the pegasys route as opposed to Hydroxy, especially as thus far no one has been able to find out what is causing the awful pain and discomfort to my shoulders and arms. Hence ultra sounds in the next two weeks. I think if it is discovered there is indeed a lot of inflammation there that could be caused or aggrevated by the medication, then when I have my face to face in July I will certainly advocate for a discussion for change. Hope you are keeping well. Many thanks.

[mbr8076]

Hi

I have ET Jak2+ and have been on Hydroxy for 5 years @ 500mg 4x and 1000mg 3x per week. The first couple years we got my platelets within normal range but the last 2 years they keep rising and my last blood draw 1 month ago platelets were slightly above 600. Although I am concerned my MPN specialist is not and keeps stating that the high platelets do not correlate to thrombosis. My MPN was found out following a mild heart attack 5 years ago when they found my platelets to be at 1 million. So, there seems to be no concern.

[Oscarsboy in reply to mbr8076]

Thank you. Many reassuring comments. I assume as long as they are not giving us uncomfortable symptoms, it's a continuing juggling act.

[Fairydust1111]

hi, have been recently diagnosed with ET and on one tablet of Hydroxy daily. Consultant told me surely but surelely but at some stage it may plateau and we will have to increase your dose. Being new and ignorant to all of this I asked…. Well if Hydroxy is lowering the platelet count, why would it ‘plateau’? And he said that that is the nature of cancer…. Bone marrow will know that platelets are lowering and will produce more….. wicked🥴

[Oscarsboy in reply to Fairydust1111]

I'm also one a day. But for how long now I ask! Thank you for your reply.

[Fairydust1111 in reply to Oscarsboy]

best of luck🤞