ET PAINS

[shiela23]

does any body feel very pain in the body and severe headache squeeze pain vertigo? 6 months diagnosed still taking pain killers?

[hunter5582]

What you are experiencing is not uncommon. MPNs are at the core inflammatory disorders, causing a wide variety of problems. Migraine is one of the related issues some face. Pain killers are really not the long-term solution and can cause significant problems of their own.

It is important to deal with the underlying problem. Some people do find relief with ruxolitinib for some symptoms. It seems to work better since it is a JAK-inhibitor. Some people do report symptom relief with other cytoreductive agents like PEGylated interferon and hydroxyurea.

If the headaches are migraine, then there are effective symptomatic solutions. One option I have used successfully is a CGRP-inhibitor (Ubrelvy). There are other CGRP inhibiters. These meds are very effective and have little in the way of adverse effects.

I am not sure of what form of body pain you are experiencing. I have osteoarthritis in many joints. I have had great success with a bioavailable form of curcumin. It works better than any NSAID or Lyrica for joint pain.

It is very important to consult with a MPN Specialist regarding the symptoms you are having. Most hematologists do not have the KSAs to provide optimal care for MPNs. If you are not already consulting with one, here are two lists.

mpnforum.com/list-hem./ worldwide

pvreporter.com/mpn-speciali... USA

Hope you find solutions soon.

[shiela23 in reply to hunter5582]

ruxolitinib what is this ???? im not familiar with this.. is this one will help my symptoms???

[hunter5582 in reply to shiela23]

Ruxolitinib AKA Jakafi (USA) Jakavi(UK/EU) is currently the only FDA approved treatment for PV in the USA. RUX is a JAK inhibitor that works directly on the JAK-STAT pathway that is dysregulated by the JAK2 mutation. It is well known for its efficacy in treating symptoms like pruritis. I cannot say whether it would help in your specific case, only that it might be an option. This is something you need to speak to your care team about. It is the most expensive treatment option at about $14,000+/month. Many formularies make it difficult to access.

Please be sure to consult with your care team (which hopefully incudes a MPN Specialist) about the symptoms you are experiencing. You can find relief, but must advocate for solutions to the issue you are experiencing.

All the best.

[TZJ1]

I’m 10 years ET Jak2. I started having increased migraines and headaches & in last few months started having neurological symptoms with them. Vertigo, vision problems (reverse tunnel vision, could only see a bit on the outside and another time everything was visually diagonal unless i closed one eye (either one) and then vision was normal & lastly pins and needles starting in my fingers moving up to encompass my whole arm & then feeling like I had a dead arm without great control of it. I went to the GP & she said we had better check if it isn’t something to do with the brain. Blood tests showed my platelets were up to 1000 (normally mine sit on 600-800) & the MRI did show up extensive white marking. Too much for just migraines, migraine sufferers can have white spots show up on their MRIs. So I’m not sure which is causing the neurological symptoms at this stage, could be ET and/or brain.

My neurologist has put me on very low dosage of Entrip, which is amitriptyline hydrochloride 10 mg for my migraines. I’ve gone from daily headaches to rarely having them & haven’t had a migraine since I’ve been on it. The neurological symptoms are minor now . This I mention in ruling out any potential other causes of the neurological symptoms if you haven’t already.

Lastly I’ve been on a strict anti-inflammatory diet for 6 weeks and I attribute that greatly to reduced symptoms. I’m on an anti-Candida diet as I wondered if perhaps it was something fungal in my system as I would bodily react to too much sugar - rash, headaches, extremely tired.

Feel better, reduced symptoms and lost 3 kilos.

I’m Hydrea 1000mg currently as platelets 1500 currently, 100mg aspirin and the Entrip 10mg.

[Wyebird in reply to TZJ1]

Really glad your headaches have lessened. Your platelets are still high though. I’m very surprised your hydroxi is only 1000mg daily. Do ou have an MPN specialist?

[LI_Mom]

I am newly diagnosed also and waiting on final diagnosis of ET or pre-MF. I was having headaches every day and lots of dizziness and silent migraines. Also had achy body. I thought it was all my new normal. On my initial diagnosis they found that I had very low ferritin and then had 2 rounds of iron infusion which helped fatigue and dizziness and I had hoped would help headaches and body pain but didn’t. And then looked at other things I was taking. One was Prilosec (Omeprazole). I stopped it and within a day body aches were totally gone. I was also taking a supplement that I was told by my gp doctor would help boost my immune system for covid protection. I stopped that and next day headaches totally gone. I was so happy about that. Turns out that it had serrotin which can cause headaches for some. So my take away is that you need to look at everything that goes in your body. I also added daily 8oz of pomegranate juice that was claimed to help inflammation. So right now I feel great and have no symptoms of ET or pre-MF. Hoping this will last for long time. 😬

[shiela23 in reply to LI_Mom]

what's your highest platelets??? are you on treatment?

[LI_Mom in reply to shiela23]

Highest was 788 in March. Down to 633 in June. Have appt at MSK this Thursday and hopefully they are down again. And just on low dose aspirin so far since I don’t have any risk factors.

[Oscarsboy]

Yes headaches and dizziness. Similar to vertigo. Not so much body pain.