Thinking ahead

[Mostew]

Just had appointment with consultant.

I wanted to consider options of meds. ( JAK2pos)

My platelets are remaining fluctuating between 750 and 900 over a year. My head feels more constantly ‘clamped’ getting weary of it.

So.

Has anyone started with every other day on hydroxy ? I would rather try slower reduction and possible less of shock to my system?

She said more people have side effects with Anagrelide ....

Thoughts welcome please

Carolyn x

[Otterfield]

I was on Anagrelide for a couple of years when I was first diagnosed (I was in a trial comparing Hydroxycarbamide and Anagrelide). I had side effects for a couple of weeks - headaches and palpitations - but then I was fine and felt really well. We're all different I suppose but it was no problem for me.

[Mostew in reply to Otterfield]

Thanks for response.I guess no one knows until we try. Not ready yet.

Hope you are doing OK

Carolyn

[socrates_8]

Hey Carolyn...

Have you heard of Pegasys' Interferon, might prove to be a better substitute, ask you MPN specialist if it's an option for you...

Best wishes

Steve

[Splb3317 in reply to socrates_8]

Hi everyone.I've forgotten how to start a post from scratch, so I've come in via a reply. (Any instructions very welcome!!)

What I would like to know is how others react to Hydroxy. I used to take it several years ago, but had to stop because it was causing very sore legs. Since stopping it, I have survived on Aspirin and Omeprazole. but, a couple of weeks ago, I became very dizzy, so much so that I couldn't stand upright. After that incident, I felt a bit 'woozy, but not the severe dizziness. Fortunately, 2 weeks later, I was due my haemo appointment and saw the consultant rather than my usual doctor. I only had to glimpse at the results in front of her and could see lots of red lines.

She said that I could have a stroke or heart attack at any minute with those results. I needed urgent medication and Hydroxy is the most fast acting. So, I am taking 2x 500 a day.

So, after that ramble, what I want to know is others' reactions to Hydroxy. I split the 2 doses between morning and evening, but I am still feeling very sick. I have asked to try Pegasus once the numbers are down, and she agrees with that, but in the mean time, have to cope with Hydroxy. Any suggestions gratefully received. Thanks everybody.

What would we do without this site?

Sandra

[Mostew in reply to Splb3317]

Oh I do hope you feel better soon .

Can’t help with reaction , but just wanted to respond .

What was your platelet count ?

Carolyn

[Splb3317 in reply to Mostew]

Hi Carolyn,I didn't see what the actual count was. I could just see all the red underlining and the doc telling me that all the counts were high. I usually as for a print out, but she was a new doctor and was just anxious to get all my numbers down, so I forgot to ask.

Sandra

[Mostew in reply to Splb3317]

Ps . To start new thread go on to communities then you should see a

Sign at top right to press

[mhos61 in reply to Splb3317]

Hi Sandra, when you want to write a post, click on ‘write’ at the top right of page highlighted in blue.

[Splb3317 in reply to mhos61]

Got It. Well, how blind can you be? Thank you so much. I shan't forget again! Sandra.

[Mostew in reply to socrates_8]

Thanks Steve

Don’t fancy the idea of hospital at moment if it was on offer but as Tico said doubt it would be ....

Carolyn

[Tico]

I agree with steve ( Socrates) that Pegasys' Interferon would probaby be a better option if it is available at your Hospital. With some the issue of cost can come into it,I know it did in my case at the Hospital I attended. When I changed Hospitals, Pegasys' was mentioned if my platelets didn't stablize. I didn't want to rock the boat at the time and said i'd wait and see. Now with Covid and Hospitals strained to the limit I feel the time as gone because obviously when you start new medication you have to be closely monitered in the beginning and because of the situation outlined above concerning the strain on Hospitals that would now be impossible.

[Mostew in reply to Tico]

Thanks Tico .

Yes no chance .

Hope u r doing ok .

Wondering if any more tries of new drugs on the horizon...

Carolyn

[hunter5582]

You have already heard the recommendation for PEGylated interferon (Pegasys) from others. Many docs now prefer this option to HU, particularly for younger patients. Besremi (ropgylated interferon) is an easier form of interferon for people to tolerate. It is currently in clinical trials for ET (already approved in Europe for PV - soon to be approved in the USA). Ruxolitinib is also an option, though its use for ET is off-label since it is only approved for PV.

Like you, I am cycling between 700s - 900s these days. It appears for me that the issue is that the phlebotomy-related iron deficiency is driving the thrombocytosis up. While I remain asymptomatic, I am concerned. My plan is to either enroll in the PTG-300 clinical trial or consider Besremi once it is approved. Getting my iron levels closer to normal without driving up erythrocytosis would be the better outcome.

If you do choose to start HU, you most certainly try every other day. It will take longer to reduce the platelets, but you may find the HU easier to tolerate at the lower dosing. Half-life of HU is 3-4 hours, so it does not stay in your system very long. While I experienced significant toxicity even at every other day, others tolerate it OK on that schedule.

Hope you get it all sorted out. Do please let us know how you get on.

[1219Smokey]

I would be very very careful if you are on Hydroxycarbamide because it gave my husband bone marrow cancer and you definitely do not want that. My husband did not sign a Consent form before they gave him Hydroxycarbamide. Waiting to see what the so called consultants have to say about that.

They did not even try my husband on any other medication.

Look after yourself.

[Mostew in reply to 1219Smokey]

So sorry about you husband

Try and Stay strong and calm when following up with consultants. Stress does no one any good ( easier said than done )

Hydroxy seems to be first choice . I guess it’s cheaper.

Swings and roundabouts . All choices have risks .

Warm wishes to you

Carolyn

[Ladygolf]

I was on Hydroxyurea for over 10 years. I started very gradually and finished at 3 caps a day. After that time my platelet count started rising while all other counts continued to fall. I was switched to anagrelide. It specifically targets platelets and doesn’t affect your other counts. It got my platelet count lower than it had been since diagnosis however it caused me a lot of side effects - heart palpitations, headache, cough, cramps, diarrhea, elevated blood pressure. Some side effects decreased over time but others persisted. Diarrhea was the worst. Here in Canada the only other option is interferon but it requires government approval. My MPN specialist decided to give me a complete holiday from meds. I’m triple negative, 68 and fairly fit. My platelet went to 934 in 4 weeks. My doc believed hydroxyurea would work again after the two year break from it. I’ve worked up to 2 per day and platelets are holding steady and no side effects. I’m due for lab work next week so I’ll see if platelet count is coming down.I don’t think starting with one a day would be too much shock to your system unless you are a person who can’t tolerate hydroxyurea at all as some are. Some others tolerate Anagrelide well but I didn’t. It’s very personal. You don’t give your age but your platelet count is not that high so if you wanted to start every other day and work up gradually I doubt your doctor would have a problem with it. Hope this helps and all the best to you.

[Mostew in reply to Ladygolf]

Thanks for your thoughts and experience.

I have always kept away from conventional meds so even taking aspirin doesn’t sit well...

BUT I am grateful to modern medicine for giving us choice .

I’m 64 . Thought 900 was high? It’s over double what should be ...

Warm wishes

Carolyn

[Mostew]

Thanks for thoughts,

Hunter

Yes I’m just thinking about trying to eat some red meat to increase iron.. havnt eaten it since I was 13 (now 64 ). Just about manage chicken ...

Best wishes to you

Carolyn

[nightshadow]

I was diagnosed with ET in January and started on 500mg Hydroxy/day. I have had no ill effects from it, and it has been helpful in reducing fatigue, joint pain and brain fog. It has been lowering my platelet counts at a steady pace, but not affecting rising hemoglobin and hematocrit counts.

But tolerance to Hydroxy seems extremely variable, including some allergic reactions, so the only way to tell if it will be good for you is to try it. If I had a lot of allergies, I would ask if there was any chance of having an allergic response before taking it though.

[Mostew in reply to nightshadow]

Good to hear you are responding well. Long may it continueI must remember I might be OK.

[Andrew8]

I was diagnosed with ET in April 2016 platelets about 1100k , put on hydroxy which reduced to about 300, but in December 2016 I developed severe fatigue episodes, and after several haemo appointments, in early 2017 was changed to Anagrelide which did not make any difference. In late April 2017 my GP doctor made some basic checks finding that my heart rhythm was abnormal. After another bone marrow sample I was re-diagnosed with myelofibrosis, and put on Jakavi Roxolitinib. One of the known side effects of hydroxy is abnormal heart rhythm, after taking it for 6 months being male over 65yrs, which fits me. I still have the heart problem. My platelet level stays in the 300 - 400 range.

[Mostew in reply to Andrew8]

So good in some ways (platelets) hope u an manag e heart problem. Medics are good at treating the heart.