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.
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
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
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 ...
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.
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!
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
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.
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.
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.
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.
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.
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.
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..
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.
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.
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.
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.
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
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
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....... 🙃😂
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