Hello all,
Like to see if anyone out there can help me with a question. My Hemo is talking about starting me on Hydroxyruea . I do believe he is on the right track and let me add I am with a research hospital. My hope if I do start the meds it will relieve some of my symptoms? Any information appreciated.
Why not request for Besremi which is the only FDA approved treatment for PV. There are a lot of internet articles about the pros and cons of Hydroxyurea that are available for you to read. My experience with Besremi is very good; but I never had hydroxyurea even though it was recommended by my hematologist years before I started Besremi. Good luck!
I was on HU for over a year. It fixed blood counts quite well and helped with the worst of the symptoms at my Dx. Are your blood counts bad? If so getting them right should help.
But I only rarely felt "right" on HU, and too much HU can be as bad for symptoms as too little. You need to coordinate that carefully with your Dr.
I'm on Besremi now, and feeling ok this week. There are some recent threads on supplements, I think for me there may be some help there on symptoms.
Bes, and PEG, (INF type agents) are the only meds that have possibility to reverse the disease. How that is defined, and whether it is actually possible, is another subject of many posts. But HU is not known to have that ability. This is one reason many members are choosing INF.
Hydroxyurea is in common use to treat PV, but it is off-label in the USA. The only two FDA approved meds for PV are Jakafi and Besremi. Pegasys is also in common use, also off-label. Being off-label does not mean it should not be considered when it is in common use.
The best approach is to do your own research about the two first-line treatment options, Hydroxyurea and the Interferons (Besremi, Pegasys). The answer is not black-and-white. It is based on your treatment goals, risk tolerance, and preferences. It is also based on your individual MPN profile and any co-occurring conditions. There are different contraindications for each. Depending on your symptom profile (e.g. pruriritis), Jakafi may also be an appropriate choice .
We are each different in how we respond to the treatment options. Hydroxyurea was ineffective for me and i experienced toxicity even at very low doses. Phlebotomy-only worked for a while, but the adverse effects were worse than the PV symptoms in the long-run. I started on Pegasys and then switched to Besremi when it was FDA approved. The interferons have been more effective and much easier to tolerate. In addition, the research indicates that the interferons offer the best chance to avoid progression of the PV. This is particularly important for me since I have an additional non-driver mutation (NF1) that increases my risk of progression into AML.
It sounds like you may have access to the kind of data and research you will need to look at to make a good decision. Hopefully, your hematologist is a MPN Specialist. If not, this would be a good time for a second opinion.
pvreporter.com/mpn-speciali...
All the best.
What does off label mean? Hydroxyurea is not FDA approved?
Off-label means that a drug that is FDA-approved for something is used to treat a different condition. This is a pretty common practice and is supported by practice guidelines and research. HU has been in common use to treat MPNs for many years. The number of people with MPNs is relatively small so there is not any financial incentive for the companies to pay for the expense of FDA approval for HU for MPNs. Note that this is part of the reason that Jakafi and Besremi are so expensive. Note that the other common use medication, Pegasys, is also off label.
We had a prior conversation on the forum about this topic.
healthunlocked.com/mpnvoice...
Here is a piece on HU if you are interested.
rhochistj.org/RhoChiPost/re...
The bottom line is that just because HU is not FDA approved for MPNs does not mean that its use is not warranted. It is a very common practice. Evaluation of HU in anyone's case should be based on efficacy and tolerance to the medication.
Hope that helps.
As always Hunter you provide great info. I will present this to my hemo next week. Thank you very much for you'er reply.
Hi. I’ve taken Hydroxyurea for 8(?) years without any problems. My problem is fatigue & it hasn’t improved that. Good luck. Remember that whatever you try can always be changed under your doctors supervision. Katie
Thank you Katie.
I have taken this medication for 4 years and the team are very supportive. Blood tests every 4 months to check platelets and also always help if you are concerned. The doctor adjusts the dose slowly to make sure you are tolerating it well. I must say, so far, excellent results with platelets back in normal limits. Very grateful for this treatment.Please let us know how you get on.
😀
It's different for everyone. I had been on Hydrea 4500mg per week for 7 months but it didn't really make a lot of difference to my platelets. I also developed peripheral neuropathy so my haemo has discontinued treatment for now. Apparently it is well tolerated by most and works well. I was just unlucky. Best of luck with it.
Hi Josup26,
I was diagnosed with ET + Calr six years ago. I was put on Hydrea to begin with and the dose was gradually increased until my blood tests showed a platelet level that was acceptable - 350,000 or so. This process lasted about six months and I ended on 9,000 mg per week since then and I have 12 weeks reviews and blood tests in the hospital ever since.
I have not had any side effects of any kind and I live my life to the full.
I hope this will be your experience too.
From reading the experiences of others I suspect it can depend on how much you are on. I am currently on 500mg daily, before I started on Hydroxy just over 3 years ago I suffered dreadfully from fatigue. Over the course of the last 3 years or so I went from 500 mg every second day to 500 mg for 5 days and 2 days rest. During this time I found it difficult to carry out my love of walking even to the extent that even a mile a day was difficult. The effects were so bad that I gave up on trying to walk any distance at all. Since I have been on daily Hydroxy I am now walking anything between 4 and 10 miles daily. I also need fewer Venesections maybe 1 to 2 annually rather 3 to 5.
For me I am at present tolerating Hydroxy well but one needs to be mindful of the fact that not everyone does. It is a toxic drug and higher and even lower doses can cause problems to some people. I would certainly say give it a try with the the provisio that if you find it is not suiting you look for an alternative.
Wishing you the best of luck if you decide to go with it.
Garry
Thank you so much for you'er experience. I appreciate you'er response.
starting hydroxy as pathway to Rux
New with ET and this week I completely fell apart
Pegasys starting dose
What are parents doing for childcare arrangements? 
Liver enzymes up on Besremi
