has anyone with ET JAK2+?and taking Hydroxycarbamide found that after being on HU they have started getting muscle pain especially in upper back?
I was put on Hydroxycarbamide due to age but I didn’t have any symptoms at all and no thrombotic events.
I’d be interested to know those of you who have also experienced this as since my dose was increaed in January my muscle pain has got a lot worse.
Originally they started a few months after starting it
thank you
Yes! I was diagnosed in January 2016 and started on 4x500mg Hydroxy daily. Not only do I get muscle pain, my bone pain is also rife at the moment. I've been on 2x500mg HU for around 4 years, as that dose seems to suit me in reducing my platelets. I refuse to discuss anything with my Haemo anymore as I'm sick of hearing ''it has nothing to do with ET or the chemo'' . I ask for my FBC results and that's it. I'm currently waiting to be referred to a MPN Specialist in Cambridge. Oddly enough, I find exercise or walking helps with the muscle pain.
thanks for your reply.
I never had any symptoms before starting HU but this all started after taking it. Had a dose increase in January and it’s all got worse.
It’s only in my back. No other mucked or Noe’s hurt !
himarevyouvstill getting muscle pains since you started Hydroxycarbamide?
Arthralgia, joint pain and body aches are all known hydroxycarbamide adverse effects. While these symptoms can occur for tother reasons, it would be reasonable to look to expect that the HU is the cause given the timing of what you report.
An uptick in apparent adverse effects in synch with a dose increase is something to review with your MPN care team. The good news is that there are other options should HU prove not to be suitable for you,
All the best.
hi hunter
Thanks for you reply.
Do you have anything to support this that I can show my haematologist?
Does it also cause muscle pain too??
Do you know which alternative is the best for least side effects ?
Many thanks
Rose
We each respond differently to the treatment options for MPNs. I was not able to tolerate HU and did much better on the interferons (Pegasys/Besremi). I had fewer side effects and the IFNs are more effective for me. Note that others experience significant adverse effects with the IFNs.
Here are some of the references regarding HU. There is more if you care to look.
drugs.com/sfx/hydroxyurea-s...
medlineplus.gov/druginfo/me...
online.epocrates.com/drugs/...
mayoclinic.org/drugs-supple...
There should not be an issue getting the hematologist to accept that this could be a HU adverse effect. If that becomes a problem, you may want to consider that forwardocho suggests and consult with a MPN Specialist. mpnforum.com/list-hem./
For more information about ET treatment options, here are a few resources to start with.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
Wishing you all the best moving forward
thanks hunter
I can see that drugs.com mention back pain . Can’t see anything about muscle pain
Hope you’re keeping well
The references are usually to joint pain, body aches, arthralgia, and back pain. I have not seen a specific reference to muscle pain (myalgia) per se, Given what you have described, it is very reasonable, but not definitieve, to suspect an HU adverse effect. This is really something to discuss with a MPN Specialist. Note that a regular hematologist may not have the level of experience using HU to treat an MPN that you would need to ensure optimal care.
All the best.
I don’t see an MPN specialist. There aren’t any where I live
Thank for replying though
Many of us travel to consult with a MPN Specialist. I drive about 2 hours to see the MPN Specialist at Johns Hopkins. I also have a great local hematologist who handles the ongoing care. This arrangement works great. Ethical doctors are are always willing to have the patient consult with a more knowledgeable colleague. The best doctors actively encourage it.
Wishing you all the best.
I’m in uk and it doesn’t work like that here. We can’t choose who we see
Many here on the forum who are in the UK have consulted with a MPN Specialist outside of their local doctor/hospital. There are several ways this can be done. They can best advise you as to how best to proceed.
Assertive patients receive higher quality care. Passive patients do not. If you wish to pursue a different provider. seek a second opinion, or consider a different course of treatment, that is your right as a patient. You have the power to make these choices if you wish to do so.
Wishing you success on your journey.
I have been in contact with an MPN expert I. Guy’s hospital London but she says she doesn’t think my problems are down to HU.
It comes down to whether you feel your question/issues have been addressed to your satisfaction. If they have been, that is all well and good. If not, then it is your prerogative to seek another opinion. Given what you are asking, it would likely be advisable to be seen in person for a thorough evaluation and review of your case.
Pain is a way that the body tells you something is wrong. No one should stay in pain that is not understood. There is no way for any of us to know whether the HU is the cause. Regardless of the cause, continuing to seek and answer and solution is in your own best interests.
Wishing you all the best.
that’s exactly what I’m trying to do. Find the answer myself
Can I ask how you managed to be in contact with the specialist at Guys and which specialist you dealt with? I tried emailing Prof Harrison using an email address I saw mentioned either on this forum or something similar, but got no reply or even acknowledgement. I'd really like to put some questions to a specialist! Thanks
Sarah
it was professor Harrison who I emailed . I can’t give you her email address if your not a patient of hers or not seen her
Sorry
Hi Hunter
Since I wrote this my muscle pains have got much worse. I’ve had 3 dose increases in the last year.
Can I insist on trying something else?
I’m 71 now abd had muscle pains since starting HU in 2014
Yes. You can insist on trying something else if the HU is not working for you. It is your prerogative to choose between the first-line treatment option for ET, the other being Pegasys. Anagrelide is also an option but most would try pegasys first since it has a better side effect profile. Please refer to Dr. Harrison's article on making this choice. mpnjournal.org/how-i-treat-...
While thinks work somewhat differently in my healthcare system in the USA, people in the UK can and do successfully advocate for the care they wish to receive. Many on the forum from the UK have changed their hematology provider to a recognized MPN Specialist. All the is required is a referral, which your GP can do. Some have reported better success by contracting the MPN Specialist office and getting an agreement to see you once you get the referral. If you run into resistance, wyou can concat PALS nhs.uk/nhs-services/hospita... or one of the patient advcacy services pohwer.net/ .
Assertive patients receive higher quality care. Passive patients do not. We much be out own best advocates. Here is a list of MPN expert docs just in case you have not seen it. mpnforum.com/tsr-the-list/
I have been there and done that myself. It certainly helps when you have a care team you can rely on to get to the cause of what you are experiencing. If you determine that a different care plan for the ET is indicated, there are other options that it is your perogative to pursue.
Wishing you success in your journey.
I really have no idea what else to do.
We do not have care teams here. Just haematologist and I’ve had opinion from our MPN Ecpert in London
The care team can be one you create yourself. I see a regular hematologist, MPN Specialist, NF Specialist/Neurologist, Ophthalmologist, Retina Specialist, Integrated Medicine Specialist, various other specialists, and of course my GP. They practice in several different healthcare systems. I coordinate between the providers, acting as my own case manager and advocate. I ensure that information gets moved between the providers. I request provider-to-provider consults when needed, but mostly do this myself. It helps to have functional patient portals that allow me to move information efficiently and communicate with my care team. It is quite common to need to educate providers about MPNs and another rare condition I have (NF1). Providers who do not want to work collaboratively do not stay on my care team.
My GP and Integrative Medicine docs are very good at sorting out potential causes for the issues I deal with. Like you, I experience chronic back pain and a host of muscle aches. One of the issues is the chronic inflammation caused by the JAK2 mutation. This along with spinal deterioration, osteoarthritis and tendonitis can cause significant discomfort. Fortunately, working collaboratively with my care team, we figured out effective solutions to the issues I face. I manage the chronic inflammation with a combination of curcumin, L-Glutathione, and SPM Active. I manage the back pain with massage therapy and exercise/Qigong. When I did not tolerate HU, I discontinued it and ultimately moved to treatment with the interferons (Pegasys/Besremi) The IFNs have been much more effective for me and easier to tolerate.
It is essential to educate ourselves when managing a MPN and the related/unrelated issues we face. This is essential in enabling us to collaborate with our care team. It sounds like that is where you are at in this stage of your journey. MPN Voice has excellent resources on line and offers terrific patient forums. There are other excellent resources that you may find helpful. The MPN Education Foundation 2023 conference had some excellent presentations you may find of interest. They are all worth watching. You may find the presentations on ET, MPN Molecular Biology, Inflammation, and Complementary Health of particular interest. mpninfo.org/conferences/202...
All the best.
you have a better system where you live.
It’s not possible here in uk to do all that
Are you in uk?
Have you had your vitamin D level checked? Low D may be contributing to your muscle pain. Magnesium is needed to activate vitamin D as well as vitamin B1 and activated B1 is needed to activate B6. All the B vitamins work better together. Magnesium and activated B1 are needed to create ATP. Hydra can cause magnesium and vitamin D deficiencies.
thanks for your reply.
I keep on top of VitD magnesium and my B vitamins so they’re all at optimal levels.
So the aim isn’t because my levels are low
But thanks for your reply
Are you using magnesium threonate and thiamine tetrahydrofuryl disulfide (TTFD)? Both are quickly absorbed and can pass through the blood brain barrier. They helped me with digestion issues. Research TTFD for chronic pain. Low copper can contribute to back pain too.
I’m taking glycinate taurine malate with malic acid
No idea what my copper is though
Get a panel done for vitamin and mineral levels. Just because you take it doesn't mean you absorbed it. Many, like my brother-in-law, believe the serving size listed on the bottle constitutes that day's dose. Check the magnesium label for the total elemental magnesium in each dose against the recommended daily requirement. I take 500 mg of elemental magnesium a day based on my weight. Four magnesium threonate capsules contain only 144 mg of elemental magnesium and that is the max for a day so I make up the difference with a supplement like you are using and I divide them up to take them with a meal. I also take 6 mg of boron to reduce magnesium and calcium loss. Check with a dietition your doctor recommends to counsel you on nutritional matters.
very much doubt my dr will agree to check those levels.
My mag result was really good thoughb
Maybe a select few?
just checked my last results
Copper 19 (11.30)
ectoplasm 0.25(0.15-59)
Zinc 18(21-24)
Magnesium 0.98(0.7-1.0)
I'm glad you have results and their interpretation rules out a nutritional issue.
thank you. I knew they were all good . Was just a case of finding them on my notes
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