Started hydroxicarbamide : After having the... - MPN Voice

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Started hydroxicarbamide

Mostew profile image
36 Replies

After having the prescription in draw for 2 years I have at last decided it’s the right time to take ( it’s still in date !) took first last night

I am still feeling fine but platelets remain to high… Rather than wait till I might need a higher dose I’m starting on 1 every other day 500mg .

Still taking turkey tail mushrooms CBD oil 10 , vit b , c ,( high dose), Curcumin oil and fish oil .

Trust your gut instinct for decisions . Then stress doesn’t add to problems !!!!

Will let you know how it effects me

Carolyn xx

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Mostew
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36 Replies
Cja1956 profile image
Cja1956

Good luck! I hope it works for you.

Mostew profile image
Mostew in reply toCja1956

It’s so good to have your support x

mhos61 profile image
mhos61

Hi Carolyn

Firstly, well done, I know starting hydrea has been a decision you’ve battled with. You’ve taken an important step in reducing your risk of thrombotic events.

You say you’ve taken the prescription ‘out of the drawer’ after two years. Presumably, your haematology team are aware of your commencing treatment?

I’d like to give you some encouragement on your journey.

I have ET and have been on hydrea for almost six years with absolutely no issues. However, in the first couple of months I did get the odd mouth ulcer which was short lived, so don’t give up if this happens to you, allow your body to get used to the drug. Be cautious, but don’t fall into the trap of thinking every new ache/pain is hydrea related.

I’m lucky that all my blood counts remain stable and within range on a relatively low dose of hydrea - 500mg daily Monday to Friday, weekends free. My platelets weren’t high to begin with though. You may have to titrate the dose to obtain the best results. This doesn’t necessarily mean you will stay on that dose. I was originally on 500mg daily, it was reduced to Monday to Friday only when I achieved the desired result.

Good luck

Mary x

Mostew profile image
Mostew in reply tomhos61

Thank you so much for your advice and thoughts Mary .

Yes , I told Dr. From Heamo. At hospital yesterday.

Very good to hear your other bloods remain stable . You are doing well.

It’s one of the things I’ve been concerned about as mine are all good apart from platelets….

I would know if a pain was related as So far I don’t suffer from any! Lucky me!,,,,,,,,,,!!!!!!

I noticed you were thinking of trying Curcumin . Did you ?

Carolyn xx

yarrowleaf profile image
yarrowleaf in reply toMostew

I have an "interlude" question for you acc. to "normal" level of platelets. I have asked around before, I know, and some follow the doctrine saying 250, but more often now people seemingly agree that 450 is ok.

I am so and so constantly around 450 (on pegasys/fortnightly/65mg/for years), but at the heamo , the doctor sais that 450 is all too high ?? I must admit that they haen't much knowledge here (DK), generally. The real knowledge is centered around the university town Roskilde and dr. Hasselbalch .

I'm 67, have some irritating side effects such as heavy tiredness, dizziness, headaches and ruined nails, teeth and hairloss, due to the Pegasys (or the blood processes caused by it), but otherwise I'm a trimmed motor and heavy physical work does me only good :)

yarrowleaf

Mostew profile image
Mostew in reply toyarrowleaf

Thanks Yarrowleaf

Sounds like you cope well with your symptoms.

Im not really bothered about getting platelets down to what Drs think is the ‘correct’ one. As you say opinions differ.

I’d be well happy to get down to 450, 500..

Carolyn

yarrowleaf profile image
yarrowleaf in reply toMostew

Thanks. I'll lean on that opinion. 👍

mhos61 profile image
mhos61

Yes, I did try circumin for awhile, as some on the forum were advocating its use. I didn’t experience any potential benefit though (don’t know what I was expecting but a cure would have been good🤣) so I decided to stop it.

I’m really hopeful for you with regards to hydrea, as most do tolerate it well. The thing is you can always stop it if it doesn’t suit you, so nothing to lose really. I take mine after my evening meal with a large glass of water. Xx

Mostew profile image
Mostew in reply tomhos61

I suppose I see any of the suppliments as doing subtle good but would be great to find a cure .... always hopeful of cure though... Defined generally feel better than have for many years , so must be doing something...

Yes I had large glass water last nite with tablet ...

Xx

Meatloaf9 profile image
Meatloaf9 in reply tomhos61

Hi mhos, I also take curcumin twice a day, I doubt it does anything, just wondering if anything changed when you stopped it, any immediate change in your blood counts or how you felt. Best to you.

mhos61 profile image
mhos61 in reply toMeatloaf9

Hi there Meatloaf9.

In answer to your question. No, nothing changed at all on stopping.

I took Circumin with piperine for around four months. There was no effect on my bloods. Initially I thought it may have helped a bit with fatigue, but in hindsight that was probably wishful thinking.

Many people do endorse its use however.

Condolences to you if you’re a Meatloaf fan. A great loss in the music world indeed!

Meatloaf9 profile image
Meatloaf9 in reply tomhos61

Thanks for the response on curcumin. We were big Meatloaf fans, hence the handle on my posts, a great vocalist in his prime and a even better person. RIP ML

mhos61 profile image
mhos61 in reply toMeatloaf9

Thought you were a fan of the man, equally you could be a fan of the ‘meatloaf’ dish.

Agree, great music, and such presence. 💔

friendofpiglet profile image
friendofpiglet in reply tomhos61

How could any discerning person not be a fan of meatloaf - man or dish....?

mhos61 profile image
mhos61 in reply tofriendofpiglet

Can’t comment on the dish🤣

Doggy1903 profile image
Doggy1903

really hope you do well. I ve been taking this for 3 and 3 quarter years and touch wood, manage very well. Platelets are down under 400 . Please do let me know how you get on.

Mostew profile image
Mostew in reply toDoggy1903

Glad you are managing in well .Will update with how I’m doing .

Carolyn x

Doggy1903 profile image
Doggy1903 in reply toMostew

Dear Carolyn, so hope this medication works very well. I too started with a lower dose and doctors were very good and only increased slowly to see how I felt and to balance the level of platelets Take care and we ll keep in contact. Fran.

Oscarsboy profile image
Oscarsboy

I hope you do really well with no adverse side effects. I know for many starting on this medication fills one with trepidation. Indeed as was I, but it was that or trying to deal with increasing symptoms. I have been on this now since August with very few side effects, certainly some muscle aches and bone pain, but it is livable with and not there all the time. I pray all goes well for you.

Mostew profile image
Mostew in reply toOscarsboy

Good to hear you have little s effects.lo no may it continue Tha

No you for your kind words

Mostew profile image
Mostew in reply toMostew

Long may it continue .... meant to type

hunter5582 profile image
hunter5582

The first step is the biggest one. Wishing you success with HU. The good news is that if it does not work you can always switch to something else. As Thomas Edison said "I did not fail 10,000 times. I discovered 10,000 things that did not work."

All the best to you on the next phase of your MP journey.

Mostew profile image
Mostew in reply tohunter5582

Thanks HunterWhen I looked ages ago the other meds. Appear not to be a good idea for me as I have underactive thyroid as well .

Hoping all supplements especially CBD and Turkey tail mushrooms will prevent symptoms.

Your thoughts on other meds would be appreciated

Hope you are recovered / recovering

And your mum is ok

Carolyn

hunter5582 profile image
hunter5582

I think you have been through all of the primary medication options: HU, PEG, anagrelide. If you have decide that HU is the best choice, I would certainly not second guess your choice.

I would suggest that you decide on what the treatment goal is. Symptom control, risk reduction (thrombosis, hemorrhage, microvascular sx), cytoreduction target. Symptom/risk goals are not the same thing as the cytoreduction target. There is not a linear relationship between the number of platelets and risks/symptoms.

I know that you have been concerned about the potential for adverse effects with HU. The higher the dose, the higher the risk of adverse effects. Suggest you titrate the dose to meet your treatment goals. If you are using a cytoreduction target, do know that not all MPN Specialists use 450/400 as the target. Some now use 600.

silvermpncenter.weill.corne...

Regarding the use of supplements, I think you are using a nice assortment to help with MPN symptoms. I have found curcumin to be particularly helpful with inflammation. Do be aware that fish oil can potentiate the blood thinning effect of aspirin. I recently added Reishi and Astragalus (similar to Turkey Tail Mushroom) to boost my immune system. unfortunately most docs, even the MPN Specialists, are not familiar with the use of complementary health supplements and how they interact with other medications. That is why I consult with an Integrative Medicine doc.

All the best.

Mostew profile image
Mostew in reply tohunter5582

Thoughts appreciated. I didn't know that some medics are happy with platelets at 600. I'm in no hurry to get platelets down as long as gradual decrease. And would be happy with 500 / 600

Stopped asprin for now as advised as they are just over 1000

I feel grateful have support of my practitioner . If she isn't sure of something she does lots of research..

Mardihel profile image
Mardihel in reply tohunter5582

I am so pleased you had that link re 600 fine for platelet count, my neighbour is a doctor and he says he wouldn't refer patients if their count was between 500 and 600. My 3 monthly check on platelet level always is between 460 and 600 I hate taking hydroxy and I have no other symptoms, I can now refer them to this. Thank you.

mhos61 profile image
mhos61 in reply toMardihel

I would like to highlight something I feel is relevant.

With regards to the concept of not referring platelet counts between 500-600. I feel strongly that GPs should be very cautious/suspicious at these levels. I say this in relation to how my ET presented.

In a random blood test, my platelets were found to be 500, which my GP rightly flagged, and ordered a follow up blood test three months later (still 500). He then referred me to haematology, a further wait of three months. In that six month period, my platelets were stable (500/502) but persistently above 450. After further tests I received a diagnosis of ET (Jak2+).

I am eternally grateful to my GP that he was ‘on the ball’ had he have had the mindset of not referring a patient with a platelet count between 500-600 I may still have not been diagnosed today, and potentially at high risk of having had a heart attack or stroke.

Mardihel profile image
Mardihel in reply tomhos61

Yes I understand that, quite interesting point will mention that to my gp neighbour.

mhos61 profile image
mhos61 in reply toMardihel

If you’re not happy on hydrea for whatever reason, it might be worth considering Pegasys.There are many people on the forum who have switched over.

Meatloaf9 profile image
Meatloaf9

Hi, I have been taking HU for PV since last July. No problems whatsoever thus far. I started out on 2 per day, now down to 8 per week. So far controlling all counts. New CBC next week. Best to you.

Mostew profile image
Mostew in reply toMeatloaf9

Good to hear you have lowered dose. And no problems. Seems lots of people ok on it. Somehow didn't notice that before.

Maybe I was looking for negative s ??!!!

Warm wishes to you

Janis12 profile image
Janis12

Ha ha, I did laugh at your post. When I was put on Hydroxy 18 months ago it sat on my kitchen table for a few days whilst I stalked around it trying to pluck up courage to put in my mouth and also whilst my imagination ran wild relating to the side effects. In reality nothing much happened other than my platelets reduced (good outcome), a little nausea for a couple of weeks and I did notice more hair in my brush. My platelets are stable and I keep my fingers crossed, other than that I forget about it and just go about my daily life of cycling, walking, going to the gym and riding a few horses, I am 63 years old and intend to keep active as long as my arthritic joints allow. So as they say, 'just keep taking the tablets', and get on with life.

Minu68 profile image
Minu68

I hope it works and you don’t get side effects that bother. I’ve been taking Hydroxy for 1.5 years now. Had some nausea at first, taking at night with plenty of water sorted that. I’ve had some hair thinning, but having always had very thick hair, it’s actually easier to manage now lol.My fatigue is worse though. Ran on caffeine at point of diagnosis, just didn’t realise the tiredness was due to the ET. Now I know, have cut caffeine but a lot more fatigued, in part due to the Hydroxy too I think.

Keep us updated, we all have similarities but also react so individually, and I learn so much from other’s experiences x

Mostew profile image
Mostew in reply toMinu68

Thank you so much for sharing your experience of taking meds . Second tablet last nite . No side effects so far . Hope I don't loose hair . Mine is thin already.. lucky you !

Trouble with lots of water is I'm getting up for several wee s . Go back to sleep quickly though .. xx

Minu68 profile image
Minu68

That's the worst about it, drinking lots before going to sleep..... I also have to get up in the night, don't always manage to get back to sleep. Luckily for me (not) I already wake up with night sweats, and also wonder if I would have to get uyp more if I didn't sweat out so much at night....... 🙃😂

Mostew profile image
Mostew in reply toMinu68

Good to look on the positive... yes u might well get up more .. !! I' x

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