I have been taking Hydroxy since the end of December (shortly after the diagnosis of ET Jak2) last year when my platelets were 1025, they came down quite a lot initially in just a few weeks to 660. My last blood test 3 weeks ago platelets had only reduced to 620 so the Hydroxy was increased for 4 days a week to 1000 from 500 and i have certainly notice a difference, fatigue levels being worse. When i tell the doctors about the fatigue they (because i have a different doctor at every telephone call) just seem to think its part and parcel of the disease and nothing can be done about it, all the emphasis is on the platelet levels which i get but i would still like some quality of life.
When i was diagnosed Hydroxy was the only option i was given in terms of medication, although i have not been happy with the idea of putting poison into my body everyday and even more so now the dose has increased. I am now wondering what the criteria is for being given Interferon as opposed to Hydroxy. Would welcome any thoughts on this please?
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Arnoldthecat
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can’t help re. Interferon , but I was recommended to take Hydroxy every day . I said I prefer to go slow and steady. And have remained on 500 every other day.
Do you have concerning symptoms or other reasons to lower platelets quickly? And were you reasonably ok with taking Hydroxy before increase?
I agree , some. Doctors focus too much on platelets.
Maybe ring your hospital haematology nurse and talk about your concerns and ask for an appointment soon to look at options .
If you havnt seen an MPN consultant ask Gp to write asking for consultation. You may find it useful.
My symptoms have got worse on the higher dose i have no idea why they want to lower platelets so urgently. Yes, i think maybe seeing an MPN consultant would be a good idea although there are none in the area of the UK i live.
If you find it hard to ask questions , write down questions before appointment .
It should be a conversation where you feel an equal partner .
I agree with Hunter. Well worth travelling to see consultant. I'm combining trip to London in May with an overnight stay. Care can be with your local hospital combined with yearly trip further afield . ( I live in Norfolk)
The most important factor in choosing between hydroxy and Pegasys is your preference. Both are recognized as viable treatments for ET. The decision should be based on your treatment goals, risk tolerance, and treatment preference.
It is important to recognize that hydroxy is significantly less expensive than Pegasys ($25.00/60 tabs vs $4,177.00/4 syringes). Access to the more expensive options varies by healthcare system. It is often necessary to advocate for your preference when you would prefer a more costly option.
Consulting with a different provider every time you access care significantly reduces the consistency and quality of care when managing a rare condition like a MPN. Moreover, it is essential to consult with a MPN Specialist to ensure optimal MPN care. Suggest that you would benefit from a second opinion from a MPN Specialist. mpnforum.com/list-hem./ . Provided the MPN Specialist is not too far away, you may want to switch your care to that provider. Some have also switched their base hospital when unable to receive the consistent care they wish from their current healthcare system. That would be your prerogative to determine. Assertive patients receive higher quality care. Passive patients do not.
Mostew correctly asks why there is a hurry to reduce your platelet levels. There is no linear relationship between platelet levels and risk of thrombosis. Some MPN Specialists now use 600 as a target when a number is used. Others no longer use a set numeric target, considering the delta (degree of change) as the most relevant factor. If you have had incidents of thrombosis, hemorrhage or significant microvascular issue then perhaps a more aggressive course of treatment would be indicated. Otherwise, working steadily towards an individualized treatment goal could be a viable approach. Note that you would likely need to consult with a MPN Specialist to individualize your treatment plan.
The MPN Specialist would also likely be more aware of the adverse effects associated with the treatment options. It is true that fatigue is the most common constitutional symptom associated with ET. It is also true that dyspnea and asthenia (fatigue) is a very common adverse effect from hydroxy. Sometimes timing is the best clue as to which is which. If you did not experience fatigue prior to taking a med, but do after starting/increasing the med, then it is logical to assume that the med is the issue.
It is up to you to set the treatment goals, including prioritizing quality of life as you define it. It is also up to you to define what is/is not an acceptable risk/adverse effect to tolerate when pursuing your treatment goals. Your right to autonomy is one of the most fundamental of patient rights. We must often be out own best advocates. Wishing you success in doing so.
Thanks Hunter for the advice. I had some TIA's four years ago and at the time they didn't really know what caused them but now i have been told they were probably down to the ET. I have been watching a lot of webinars about treatment plans and they all say that the treatment should be set with the patients wishes and goals included. I have not been given a choice just told this is what we are going to give you. As you and Mostew have both advised i think i need to get a second opinion, there is no specialist in the area. Thank you.
It is worth travelling to consult with a MPN Specialist. I drive abut 2 hours to consult 2x/year with a MPN Specialist. I also have a wonderful local hematologist who handles the ongoing care. This arrangement works great.
hydroxy is a lot cheaper than interferon. I was offered hydroxy as first choice when first told I needed treatment but said I wanted to take Pegasys and there was no problem. You need to be firm and tell them that hydroxy isn’t working for you and unless there is a reason why you can’t take interferon they should allow you to try it. Once there was a lottery post code on this with the nhs but I believe that isn’t the case anymore. Be persistent with them and I am sure you will be able to try it.
Hi, I travel from South Devon to London to see my consultant. It’s absolutely the best thing I can do for myself. Find an MPN specialist. I’m on Hydroxy, 3 daily. Platelets sit at about 560. When I’ve taken one more pill a week it throws everything out and I feel grim. I’m just trying to change over to Peg but am having to do it very slowly due to bad reaction with first two doses. I think it’s very, very important that you find an expert to support you. X
Thank you RazB. Yes, that is how i am feeling on the increased dose......grim. I am beginning to forget what it feels like to feel well, but i am beginning to realise i am more than just a platelet! Hope your change of treatment goes well.
Hi Arnold - some great advice as usual from Hunter - I can't add to that -were you allocated a McMillan (Cancer Specialist) nurse to discuss any issues? They usually respond quickly. Keep us informed & good luck!
In Denmark, MPN specialists have a profoundly different view about Interferon vs hydroxy than the UK specialists as you can see by reading the "Conclusions" section of this 2014 article: mpnforum.com/an-open-letter/
I was diagnosed 5 1/2 years ago. I have been on anagrelide since then, but have now reduced and started Besremi last October. Because anagrelide was causing heart problems and I wasn’t able to take peg interferon or HU I had to keep my part anagrelide intake low. Our goal was always to keep the thrombocytes no more than 750. That worked really well. Many of us who are not taking any medication are able to hover around 1000 thrombocytes, while only taking aspirin. In that case, the question is have you had TIAs before? That would put you in. A higher risk category. I have had six very light TIAs last one being four years ago.
many doctors like to keep their patients in normal range. All that has to be balanced out with the side-effects. Because I was also suffering with fatigue. I take 100 mg of coenzyme Q10 daily and 2 g of acetyl l-carnitine daily, which I have since reduced to 1g daily 500g + 500g. these two supplements helps the mitochondria in cells to have more energy and for myself to be able to use my food, more efficiently for energy! In other words, I feel completely normal, despite medications! 🙂
this is something you can try hard and with time, find a balance for yourself. The most important thing is quality of life! Living with fatigue is a real bore!
Hi ArnoldtheCat, Here in the US I found that I could only affordably see a specialist by arranging a video appointment, in my case with an MPN specialist at the Mayo Clinic. Getting all parties to share data promptly and thoroughly was a bit of a job, but the appointment was worth it, and because I am in a smaller city, I will "see" the Mayo specialist again after a few more months of treatment, to help me evaluate it all. I was diagnosed with ET in late summer last year (though I've had high platelets for decades) but only started treatments this year after PV seemed a more likely diagnosis. I had two phlebotomies for the HCT count, and that got down the level. Then I started Besremi ropeginterferon every other week, going up by 50 mcg each time. No change for a while, but suddenly my platelets dropped; They were 1198 in January, then 901, then 603 in March. My HCT has remained in the acceptable zone during this time. I recently watched the Dr Silvers portion of the MPN conference that Hunter posted. His talk certainly reinforced the added advantages of interferons over HU or blood-letting.
I can't say I'm side effect free, however. I have waves of tiredness hit me, have worse insomnia, GERD and gas frequently, weird nerve issue (freezing/burning sensation only on back and back of arms.) However, I'm going to try to treat the side effects and soldier on, as the results have impressed me. I understand interferons sometimes take much more time to do their job, so I am lucky. So far. For someone unlucky enough to fine oneself in the MPN camp in the first place. I'm also hoping I might reach the doctor's (not my) platelet goal of 400 before I reach maximum dose of 500 mcg, so I could hang on at a lower level of drug toxicity.
Thank you Ovidess for your comments. After reading them all i think that probably cost in the driver for treatment here in the UK for what treatment you are given, but i shall continue to pursue.
You NEED to get an MPN Specialist. Even a hematologist without a specialty in MPNs is while not useless, not equipped to handle your disease. My QOL quality of life eg:" shortness of breath" has improved immeasurably since I first came under her watchful eyes. I was diagnosed MF about 8 years ago and as my disease progresses she is there changing my meds.
You had a huge drop from 1025 to 660 in a few weeks taking 500 mg HU daily, Platelets can jump around depending on what is going on in your body. If I were you I would continue taking 500 mg HU daily (or call and ask if okay) until your next appointment. How far apart are your appointments?
I am 78 with ET JAK2 and live in the United States. Pegasys is very expensive so HU is usually used first.
HU was the only option I was given too. I admit it keeps my platelets under 300 so I’m happy about that. I’m not fatigued either but I am struggling with cosmetic side effects… discolored nails and hyperpigmentation.
Was on hydrea for 2 years and the fatigue became extreme. About 18 months ago I switched to interferon Pegasys and felt amazing until very recently. Fatigue has returned. Both significantly reduced platelet counts. Pegasys is very expensive but I have very good insurance so I can afford it. It seems to be a side effect not only of the medication but of the condition, ET. We have to be grateful there is medication to reduce high levels of platelets and adjust our lifestyles accordingly.
Thank you for your post, sorry for the delay in replying. I have had an appointment with specialist nurse and she has told me they normally give 3 months for platelets to lower before changing treatment, although she didn't say what that may be. I am now at 3 1/2 months and they have stalled at 620, due another blood test next week so its a case of wait and see.
Wow, just reading your levels and I was hoping my levels would drop quickly once on the Hydroxyurea. My levels were close to 13000 in Jan, they have dropped to 780 last blood test - last week in August. I’ve only just had my first 3 doses.
Does it usually take a long time to have the platelets drop?
Hi Well, since my previous post platelets started to go up even on an increased dose of Hydroxy so it was decided it wasn't working for me. I am now taking Interferon, platelets only came down slightly after the first month have been told to give it several more weeks and they will review, due to have more bloods in 2 weeks time. The rate in which platelets come down seems to vary from person to person and i guess what the starting point was.
Hello Arnoldthecat! When diagnosed with ET about 15 months ago my platelets were around 1600. It has taken until now for platelets to drop to 474( on Pegasys interferon). The count fluctuates from month to month although not by a significant or worrying amount.
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