I am hoping this can help someone

[lindabomba]

Hi, I was recently diagnosed with ET and started taking Hydrea on December 1st 2021. I was already having fatigue which I feel got worse after I starting taking the medication. I was on the medication for about a month and starting getting chills everyday. I then got a sinus infection and caught 2 viruses in about 8 weeks. I decided to try some supplements and acupuncture to deal with this. I started taking Lion's Mane and that has helped the fatigue. I have done one session of acupuncture and it helped with the chills. I am going to continue with this and have another appointment. I have used acupuncture in the past and I have had some great success with it. The acupuncturist that I see she suggested me taking vitamin c and zinc which would help with the chills. These are all side effects from the medication. I wanted to share this here and it may be helpful to someone else.

[Mostew]

Glad you are finding relief from side effects of meds. Acupuncture can be very effective Hope things settle down .

Carolyn

[nightshadow]

Thanks for the information. It is good to hold in reserve.

[Hidden]

I too suffered in the early months with a dreadful dose of fever and chills. From memory it passed after a few days with bedrest and paracetamol. One's immune system is quite fragile on the hydroxy as some of us have learned. I'll be having my 4th Covid injection soon as ET makes us immunocompromised. My main concern after 14 mths on the drug is weight gain.I'm on 500 /day and my platelets are 218,000. Pity we are stuck on this drug for life.

[EPguy in reply to Hidden]

Is it possible you may be ok with a lower HU dose? Is your Dr holding your dose at 500 intentionally?

I did better when my PLT was in the higher normal range, while yours in in the lower normal range. Of course we all respond differently. (my weight is ok on HU)

[Hidden in reply to EPguy]

Thanks for the reply, EPguy. I'm hoping the dose will be reduced at my next visit to the haemo (another month away). That may help. I've no idea why the dose has stayed the same for such a long spell.

[ChillyAsh34 in reply to Hidden]

I put in a lot of weight with hydroxycarbamide ,but went to slimming world a few weeks ago and have lost half a stone up to now ,I suffered the chills but assumed I had a cold also pains in my leg and knee ,lower back they had gone now since end of Dec and hope to stay pain free never suffered the fatigue

[LadieC]

I have Myeloproliferative Disease/Disorder which encompasses all 3 types of blood cells- red, white and platelets. I'm on 1000/day . I have the daily chills and fatigue is a double whammy since both the MPD and Hydrea can cause fatigue . Thanks for the info on the Lions Main.

[lindabomba in reply to LadieC]

Are you taking a 1000/day of the hydrea? The Lions Mane helped with the fatique. I saw my doc today she doesn't think me getting the chills everyday has anything to do with taking the hydrea which I don't agree with her I didn't have any chills before I was diagnosed and taking medication.

[Alfiesarah in reply to lindabomba]

Hi I am new to the group..diagnosed with ET Oct 21..with 800 count for platelets and put on Hydroxy 500mg. Appt 22 Dec down to 650 count but dosage increased to 1000 daily .After 6 weeks of this felt dreadful, chills, extreme fatigue, Weight gain, hair loss headaches generally feeling unwell..went back to 500mg following phone call to nurse who also said she didn't think symptoms connected to meds! Not as bad now down to 500mg daily but unwell feeling comes and goes and can't shift extra weight! Appt yesterday count down to 500...says to stay 500mg but 1000mg 2 days a week!

[EPguy in reply to Alfiesarah]

I also started on 1000/day, and by 4 months felt terrible. Went to 500/day, with occasional 1000. It was better. So your experience is similar to mine in dosing. I think sometimes the Drs hit it too hard and don't give it time to work more gently. I needed about 4 months to get PLT to the range.

I'm now switching to Besremi so my HU should stop soon.

[lindabomba in reply to Alfiesarah]

Sometimes I don't think the doctors understand since I joined this group and meeting others with the same thing and taking Hydrea we all seem to be dealing with the same issues. I have been on 500MG 3X a week. I had an appointment with my oncologist on Thursday my platelets were 379 which she wants my platelets under 400 she wanted to increase it 2 before so I would be taking it everyday if I had agreed with her. I am taking a much less dose and getting my platelets and having the side effects which she somehow feels they are related to the drug.

[Hidden in reply to lindabomba]

Hi lindabomba,Thanks for posting this. Good to hear you had some say in dosage. My platelet count is down to 218,000 and I'm still on 500 mg /day. Haemo stated the platelet count should remain under 240,000. Now I feel empowered to say something about lowering the dose as the extra weight gain (about 3 kgs despite weight watching) in the past 14 mths is demoralising. I don't think it helps that I'm on a low dose of Propranol for alarm clock headaches.

I'm glad to hear your haemo concurs with the 'weighty' effect of this drug.

All the best!

[hunter5582 in reply to Hidden]

I would suggest reviewing the treatment goal with a MPN Specialist. Keeping platelets under 240 seems rather low. Most MPN Specialists when using a cytoreduction target use 400 or 600. Not sure why your target is 240. silvermpncenter.weill.corne...

Some MPN Specialists do not use a cytoreduction target at all. They focus on actual symptoms and quality of life. There are multiple examples of this in the literature.

"Concerning platelet counts, no direct correlation has been demonstrated with thrombotic risk in either ET or PV. Thus, although cytoreductive treatment reduces the rate of vascular complications in high-risk patients, no particular threshold of the platelet counts has been shown to be more protective against thrombosis."

pubmed.ncbi.nlm.nih.gov/248...

"Treatment goals in ET are to avoid thrombosis and bleeding, to treat ET-related symptoms, improve quality of life and to minimize risk of malignant transformation and/or post-ET myelofibrosis."

pubmed.ncbi.nlm.nih.gov/236....

Ultimately it is not up to your hematologist to set your treatment goals. This is your role. It is both your right and your responsibility. Doctors consult, advise and educate. Patients make decisions. It is up to you to decide what your treatment goals should be, which includes the priority you set on quality of life issues. It is also up to you to decide which treatment strategy you wish to use to achieve the goals you set. If you wish to use a lower dose, it is you right to choose to do so. You do not need the doctor's permission. The outcome of your choice is also your responsibility.

If you do not find HU to be a suitable treatment choice, there are other options. PEGylated Interferon is the other first-line treatment option for ET. There are also second line treatment options, Jakavi and anagrelide. The better doctors review all of the options with the patient and let the patient decide.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

There is no question that you have a say in the dosage you take. You are the only one who can make this decision. Assertive patients receive higher quality care. Passive patients do not. It is within you power to decide what your treatment strategy will be. Suggest you seek a second opinion from a MPN Specialist and review all of your options for treatment goals and treatment options.

mpnforum.com/list-hem./

[Hidden in reply to hunter5582]

Hello Hunter,I'm very appreciative of your research and sound comments. I will definitely take this issue up with my specialist and do some more research from the links you have provided. I was very surprised about the recommended platelet level goal. I was in the 600,000's when treatment finally began 14 months ago.

[hunter5582 in reply to Hidden]

Unfortunately it is quite common for hematologists to lack experience with MPNs due to how rare they are. There are some Australian MPN Specialists on the list above. There are also some good resources in Australia from our friends at MPN-Mate. mpn-mate.com/

All the best.

[lindabomba in reply to hunter5582]

Totally agree with you I have gotten much better care when I am active and speaking up

[Pte82 in reply to Alfiesarah]

Alfiesarah, Hydroxy causes loss of magnesium. Adequate magnesium is needed to make thiamine (vitamin B1) become bioactive. Both are required to create ATP, that provides energy to drive processes in living cells. Both are involved in carbohydrate metabolism. Bioactive thiamine can prevent hair loss as well as play a role in regrowth. Search on "headaches thiamine" and "headaches magnesium" for possible relief. Magnesium also prevents platelets from sticking together. Be aware of anti thiamine factors that diminish thiamine. Search on "stuttering anti thiamine factors" for a comprehensive list. Search on 'krispin magnesium" for a list of causes for loss of magnesium. Always consult your health care professional before using any supplement.

[Hidden in reply to Pte82]

Many thanks Pte. I will research those areas now. I do take a magnesium supplement but not the B1. I never knew there was a connection with metabolism.

[Pte82 in reply to Hidden]

222Bobby, I failed to include IBS-constipation as a result of inadequate magnesium/ thiamine. Search on "constipation thiamine". And you also need magnesium to activate vitamin D.

rejuvii.com/post/2017/08/15...

[Hidden]

Thanks for that, Pte82. I'll start on a good sprinkling of sunflower seeds on my daily yoghurt. Being a lacto-ovo vegetarian, my choices are limited. I currently take 400mg magnesium but will switch to the chelated form. Appreciate your time and contact. All the best