Hello, Ruxolitinib is not available everywhere and my doctor said that I would have to apply for it, and hope I would get it. I was also put on Hydroxycarbamide, 2007 and still am. The amount and when to take it has varied over the years. I hope you will be "investigated" so you get the right treatment.
Ruxolitinib is in clinical trials for ET but not yet approved for this purpose Others are currently using it for ET off-label. Approval can be a challenge due to the expense of this medication. It is certainly worth giving it s try if you can. You may find it resolves the musculoskeletal issue. Or not as it could be unrelated to the HU/ET.
Not sure why an antihistamine would help with the apparent musculoskeletal pain. Would ask for more detail on that.
My rheumatologist was the first to recommend trying turmeric/curcumin for osteoarthritis pain. This was also recommended by my Internal Medicine doctor to manage the systemic inflammation caused by the JAK2 mutation. Curcumin is more effective than any NSAID I ever took. Very happy with the outcome and it has not had any side effects. While there are some warnings about curcumin + aspirin (increased bleeding), this has not been an issue for me. If you are interested, suggest you consult with a provider who is knowledgeable about complementary health interventions.
She did say that possibly try angrelaide first & if it didn’t agree with me then she’d apply for then Ruxinitib for me.
I’m am so restricted with what I can take for this inflammation as being on warfarin restricts a lot of medication but in particular anti inflammatories .
Do you take a stomach protector with the Termaric??
I had a steroid injection in y left side ribs on Monday and it’s a bit better today but can’t keep having the injections .
I’m having to have more Botox in my back next week as I can feel it’s wearing off
Although my free light chains are both above range my Haemo said the ratio was ok so nothing to worry about.
Hunter, when taking Turmeric if you add black pepper, it works synergisticly 2000 times more potent...I make huge saucepans of lamb and red lentil soup, I add half a cup of Turmeric, its superb.
Likely something seen on MyMPNTeam. This is my understanding. While platelets can release some histamine during thrombosis, most histamine is released by mast cells. There is an interaction between platelets and mast cells. When platelets are excessively activated, they can promote mast cell degranulation, leading to the release of histamine. In addition, the excessive inflammation we experience with MPNs also plays a role in excess histamine production.
Perhaps one of our more knowledgeable scientists on the forum can give a better explanation.
I have had mast cell activation and histamine intolerance for 12 years. I’m also on Ruxolitinib ( I have PV)
Firstly as Hunter says I have no idea why an antihistamine would help with muscular pain - it’s the one symptom of HI I don’t have!
Too much histamine causes severe itching, nausea, headache, tinnitus, depression, and a plethora of other things that one would never dream of!! See symptoms on histaminintoleranz.ch
This is a superb Swiss website
I take one loratidine / one citirizune / one Fexofenadine ( alternating them as don’t want a build up of one particular drug) when I get up in the morning every day to combat this. Fingers crossed I don’t seem to have problems so far with interactions with Rux.
To be honest if I were you I would see a haematologist who specialises in MPNs. and seek other opinions including rheumatologists.
(You could of course try antihistamines and see if there’s an improvement!)
Contact monvoice.org.uk for info.
It’s really important to read read read and become familiar with terms and names.
The more knowledgable you are the better treatment you will receive.
Where I live there is no haematologist who specialises in MPN . However, my haematologist is in close contact with Professor Harrison regarding my condition.
Professor Harrison told me herself that high ESR was indicative of an inflammatory process which isn’t to go with ET.
On her advice my haematologist referred me to rheumatologist who I e seem twice and has carried out numerous blood tests and PETCT scan.
I saw my haematologist yesterday & she told me she had been speaking to Professor Harrison and that Prof Harrison has advised reducing my HU to just 500mg mon-fri and stopping 1000mg say & sun.
She said she’d also been in touch with my rheumatologist who has said he cannot find any reason for high ESR.
My haematologist said professor Harrison has said that histamine can cause high ESR due to the systemic inflammation that it causes . So no harm in trying an antihistamine.
As Professor Harrison is the number one MPN expert I feel she has the knowledge and that together with my haematologist hopefully my pains will be sorted out.
There was talk of getting my rheumatologist to administer a deli steroid injection
good! Had my Mpn for almost 17 years and know Claire Harrison. She’s brilliant. I have also a superb Mpn specialist at the Christie in Manchester - Prof Tim Somervaille - who I see monthly. We live in the lakes so it’s a two hour journey. Worth every mile.
Apologies if my post upset you, but you sounded as though you were floundering a bit. We have to be our own project managers. Hope the antihistamines work for you. Louise
I’m 7- and had ET for 17 years. My haematologist said yesterday my platelets were high when put on HU as they were just 515 but due to my age then (62) it was the normal thing to do due to being over 60.
This muscle pain and spasms are just one side of my back. She explained that inflammation increase platelets and therefore it’s the inflammation that needs to be treated .
Along with Professor Harrison my haematologist has reduced HU in professor Harrison’s advice
I’ve seen Professor Harrison twice but she emails me back when I have concerns. She’s aware that the muscle pain inky started after starting HU and seen to get worse every time I’ve had a dose increase but she strongly feels it’s not the Hu siding them but systemic inflammation targeting these left sided back muscles.
My Gp thinks the excruciating spasms were triggered by an over vigorous back massage and has triggered the inflammation,
I’m feeling that they’re coming back as it is 16 weeks since I had the Botox in my back and I can feel things starting up again .
I’ve booked more Botox for next Thursday,
I had a steroid injection close to where my rib pains are but although it’s lessened the pain it’s still there.
I just don’t understand why all blood tests are coming back negative that the rheumatologist did except for the free light chains,
The good thing will be that once my Hu has been reduced again that the WBC and RBC will get up above bottom of range.
I’m also on warfarin due to multiple blood clots in both lungs.
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Xarelto (blood thinner) and hydroxycarbamide
Diet changes 
Criteria for diagnosing ET!
