Diagnosed pv November.....on Hydroxyurea, aspirin and venesections...haematocrit is just below target but struggling with symptoms. Haematology nurses recommended using this forum for advice. Still have terrible burning and tingling in my hands and feet ....not as bad as when I had severe attacks pre- diagnosis. Also have headaches all the time. I am on gabapentin 1200 mg per day. Any advice on reducing symptoms...nurses can't give me any more advice. Any suggestion of checking my bone marrow is far off at this stage.
Appreciate any advice, Therese
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T1960
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Sorry to hear about the continued symptoms despite your current treatment plan. You may find that a change in treatment plan is in order. It sounds like you are struggling with some of the microvascular symptoms associated with PV. Unfortunately gabapentin may reduce perceived pain but will not address the underlying problem.
I also experienced the burning pain in my feet toes. I was off aspirin at the time. Starting the aspirin back up eliminated the symptom immediately. Some people find that they need low dose aspirin 2x/day to find relief.
Headaches can also be a microvascular issue. Dealing with the abnormal interaction between the blood cells and the vascular endothelium is the hey to resolving these problems.
Hydroxyurea has the added benefit of reducing microvascular symptoms but it does not work for all people. If your symptoms are refractory to HU then perhaps a change in treatment plan is indicated. Some find Jakafi (ruxolitinib) to be more effective. Others benefit more from Besremi or Pegasys.
Controlling symptoms like pain in the extremities and headaches is every bit as important as controlling for the risk of thrombosis. If your current treatment plan is not working, it should be changed. This needs to be done in consultation with a MPN Specialist. Hopefully you already have a MPN Specialist on your team to provide the expert guidance needed.
Thank you so much for your reply. I find that you are very helpful and very informative. I am going to be more proactive in seeking further help and support. Perhaps I have been a bit lax. I have been overwhelmed at times. I have no MPN specialist, and am on a mission to find one now. The Specialist dealing with my polycythemia is good and the nurses helpful. But the nurses only deal with my blood counts etc and suggest that I keep referring back to the MPN voice.Thanks again.
The way I manage my care for PV is to have a local hematologist who is a wonderful doc handle the ongoing care. I consult periodically with a MPN Specialist who advises us about my care plan. The MPN Specialist is a couple of hours away and in a different state, making ongoing care there impractical. This arrangement works great. My local hematologist welcomes the consultation and I always get two opinions on all decisions about my care.
I expect you have seen this but just in case here is a link to patient-recommended MPN docs. mpnforum.com/list-hem./
I certainly understand feeling overwhelmed at times. My on journey in the last couple of years has been quite interesting at times. Taking control of my care team and managing it effectively reduces the stress load and results in better care.
I had tingling and numbness in extremities pre Dx and on HU + aspirin. After switching to Besremi INF it got better; less and less often, except when my BP crashes. Blood counts were ok on both HU and Bes.
That was my result, but we see here no one gets the exact same result from any treatment.
For my occasional headaches I didn't notice an obvious change, a slight improvement.
I hope this doesn’t sound too negative, but, in my experience, mist consultants concentrate on the medical risks and not the symptoms. In my case the blood numbers have been fine for a number of years but the symptoms have not gone away. When asked they rarely offer any solutions.
I still suffer from pruritus, brain for and tiredness.
it is quite unfortunate when consultants ignore the symptoms the cause us so much trouble. the other symptoms of MPNs are just as important to treat as primary risks like thrombosis and hemorrhage. Many regular hematologists lack the expertise to MPNs to provide optimal treatment. That is why it is so important to consult with a MPN Specialist.
It is also important to be our own best advocates. Assertive patients receive higher quality care. Passive patients do not. We do sometimes have to be very assertive in pushing so solutions to the problems we face with MPNs. This includes finding a provider with the KSAs and interest to resolve the problems we face. I expect you have seen the list before but here it is again just in case. mpnforum.com/list-hem./
Note that while many of us respond quite well to pegasys or Besremi, not all do. Jakafi/Jakavi is more effective at resolving pruritis for many people with MPNs who experience that symptom. Perhaps the brain fog and fatigue would respond better too. That is a good issue to discuss with a MPN Specialist.
I do hope you find a consultant with the MPN expertise you need and deserve. All the best moving forward.
Hi Hunter it’s Louise. Unfortunately Besremi and Jakavi are not licenced yet by NICE in England for PV patients. It’s deemed as too expensive at £52,000 a year. At the moment it’s licensed in Scotland irritatingly enough but here in good old Blighty we’re stuck with HU and interferon.
I absolutely agree we have to be our own project managers. I decamped to an Mpn specialist and never looked back - my previous haematologist was dictatorial, didn’t listen, and treated me as a lesser being. He didn’t last long! All the best and thank you for you detailed and caring responses. Whereabouts in the states are you?
Your mention of "interferon" probably is Pegasys, is that right? Many on the forum here are doing well with that. Both Pegasys and Besremi are pegylated interferon which are better tolerated than the much older versions. If you mean non-pegylated, that would be not desirable.
I really do not understand the various ins and outs of the NHS in the UK. It seems there are also differences between base hospitals in the same part of the UK. It is really not so different than what we experience here in the USA. Different care plans/systems have vastly different access to medications and services. In the end, it is always up to each of us to be our own best advocate, which includes knowing how the navigate the system of care.
If Besremi and Jakafi cannot be accessed, then Pegasys is definately worth a try if HU is not suitable. I responded way better to PEG than to HU.
It seems we are one the same page about the roles of docs and patients. I would definitely fire any doc who was dictatorial, didn't listen, and treated me like a lesser being. I am quite fortunate to have a fabulous care team. Any docs that did not meet the grade are long gone.
I am blessed to live in Harpers Ferry, West Virginia. A very beautiful part of the country.
How lovely. Don’t know that part of the US Hunter but we have been to the states several times - my husband used to be European finance director for hol inn years ago and we ve had some super trips.
We too live in a glorious part of the uk - in the north west Lake District. Mountains lakes and forests. I count my blessings every day.
Our NHS is on its knees basically. 5 million waiting for operations. My brother in law waited 5 years for a hip replacement and is virtually crippled.
I believe those of us who can afford it should be paying to visit the gp and a and e. We should most certainly be paying for hospital food.
We just pay for healthcare now if we need anything urgent, but I m most fortunate to be a patient of Prof Tim Somervaille and his excellent team.
HU has suited me for 14 years but has caused numerous actinic keratoses on my face ( treatable with some searching cream) so am loathe to change. I ll just look like a leper for a couple of months.
It is good news that we do have options to treat MPNs and the ability to choose between them. If you refer to continue t manage the symptoms and adverse effects on your current treatment plan then that is the right choice for you. The more good news is that treatment options for MPNs are improving. Rusfertide should be available before too much longer as just one example.
Mountains, lakes, and forests sounds much like where I live. Just inside the first ridge of the Blue Ridge Mountains and near the confluence of the Potomac and Shenandoah Rivers. We have a cabin down at the riverfront where we love to spend time when not at home. There is a large tract of forest between my home and cabin. It is a wonderful place to live. We are in the country but washington DC is only a little over an hour away.
All the best to you moving forward on your care plan.
I agree on the Drs etc, my MPN specialist is not too focused on symptoms either, but to be fair there's not much clinical data for them to deal with it. That's left to us to figure out, and ideas here can help sometimes. But as Hunter says, Rux can be good at symptom relief, my Dy says the same. If I end up in excess misery I will consider it, but so far do I sense incremental improvement on INF, mixed with bad days.
I have seen your great allele reductions and not so great symptoms. Studies I've read tend to also have not great correlation of symptoms/clinical results. We would all like the answer there.
My husband still gets occasional brain fog/fatigue from long covid after 2-1/2 years, it's not fun.
I've been taking NAC and Curcumin, it may be helping symptoms. I've tried and quit a few others. Might help T1960 here too, with Dr consult of course.
1) I have gotten some relief from using Voltaren [diclofenac] gel topically on my hands and feet as an adjunct symptom reliever.
Also taking Pepcid [famotidine] 20-40 mg daily [I can't take Zyrtec [cetirizine] due to sedation], along with my usual Allegra for allergies has sometimes been helpful with the horrible itching which has been my most troublesome and persistent symptom.
2) I have read some citations suggesting that a low dose of an interferon like Pegasys or Besremi combined with a low dose of Jakafi may be especially helpful to relieve the inflammatory breakthrough symptoms.
Studies I read implicate 'non-driver mutations' like TET2, CALR, etc. as likely to cause some resistance to all of the interferons' treatment effects, whereas even though those mutations also aren't directly blocked by Jakafi, the resistance is overcome by the combination- just like the non-JAK2 PV patients also get treatment response from it.
This is why, even though I'm still in the early stages of post-diagnosis treatment, I pushed for a bone marrow biopsy [which is happening later today], even though some of the mutations can be tested for in peripheral blood tests.
The burning feet issue…..I have found a cooling mat to be a game changer. Leave it in the fridge all day then use at night to cool your feet down. It also seems to help with the cramp in my legs too.
Oh Therese I m so sorry to hear you re struggling. I was diagnosed 14 years ago and thought the world had come to an end. ( I m 64 now and fine) HU ASPIRIN AND venesection for me too.
I m not sure whether your symptoms of burning etc is aquagenic pruritis or erythromelalgia.
Is it worse after contact with water?
Aquafenic pruritis is like having thrush under your skin a blow torch on the surface and a zillion insects biting all at once. Can affect all parts of the body. No rash or redness. Dire. I had it for a year until I stopped showering bathing and swimming - we installed a bidet and I manage and don’t pong! I don’t wear anything tight like tights either.
Erythromelalgia affects mainly hands and feet. Redness usually as well.
You really need to see an Mpn specialist who will be far more sympathetic and knowledgable than a nurse .
Contact mpnvoice.org.uk - superb website. London based charity at guys and st Thomas’s started by the wonderful Prof Claire Harrison.
Forums countrywide. Well worth going to one.
Not sure where you are but I see a brilliant chap at the Christie in Manchester.
Mpn specialists all over the country.
You can decamp and ask to be registered wherever you wish. I did and travel every 6/8 weeks for an hour and a half to see mine. Worth every mile.
Ask Max at Mpn voice for a buddy. No one knows how you are feeling better than another PV er!
Walk briskly for an hour a day to get your circulation going, drink 2 litres water every 24 hours, ( should help with headaches) try eating an anti inflammatory diet. That’s important.
Thanks for that Louise....it is really interesting that you mention having a great consultant at The Christie, as I work there 😄. Would you mind giving me his/her name? Everybody seems to be intimating that I would be better with an MPN specialist. My haematology care team nurses are fab, but my current symptoms seem to be beyond their scope and as many people are pointing out, my consultant, like theirs, seems to zero in on just keeping my blood readings on target regardless of symptoms.Regards & many, many thanks, Therese
Good heavens Therese that’s amazing!My consultant is Prof Tim Somervaille who - obviously is an Mpn specialist.
Such a nice chap.
Very understanding, very empathetic, incredibly knowledgable and open minded. I can’t speak highly enough about him.
If my haematocrit is edging towards 44 he ll say “ what would you like to do?”
I’ll say “ how about siphoning off half a bag?”
I trust him which is the most important thing, and I know he liaises quite often with Prof Claire Harrison who is one of the world authorities on Mpn’s.
If you’d like to chat go into mpnvoice.org.uk and ask Maz for my phone number - I m not really supposed to leave it on this site.
Or you can just ask for a buddy and Maz will put you in touch with another PV patient. As I said it really helps to talk.
Maybe I ll meet you one of these days!!
You might have to ask your gp to refer you to Tim but as you work there - maybe just pop into dept 26 on a Wednesday and ask at the desk
Hi Therese, I was diagnosed three years ago and since April 2021 have been on HU, (plus aspirin and venesection when needed, from the start). My symptom burden has never been terrible, but I used to get every so often the burning feet sensation during the night. Now it has become a lot rarer and I am also sleeping a lot better. I am under the impression that HU took some time to work on the symptoms. I hope you will soon feel better, but if not, you should consider discussing with the MPN consultant other treatment options.
Sorry to hear how things are for you. I don't forget when I initially had symptoms until they did settle. Yes you will get great support and advice here. You will get more information than you need only because everyone's story/needs are individual.
What worked for me was two things and should only be taken as that, it worked my me, how I perceive things etc. What you find useful at a particular time is correct for you. Other members will answer your queries more directly. My tuppence worth is more general and you may not find helpful
1) Be patient with yourself as your personal situation will take as long as it will to get sorted with meds etc. Go easy on yourself. You are getting used to a lot of stuff and a whole new world which will take time to digest. You have a new best friend called MPN who has decided to stay around. It would be easier if they would F off but it is just not one of the options you have on the menu of options but that's ok!
2) I changed my thinking from the medical people as the experts and I put myself in the middle as the boss and the medical people as 'working' on my team.
You are your best advocate on project YOU. If you need a family member or friend to act as your advocate bring them into your team to appointments etc. Personally, I found it easier to keep it simple, I wrote down what I wanted to know beforehand and if your medical team member didn't answer your question/concern tell them. Remember your medical team members want you to succeed they want to help. Sometimes you are giving them information that is new to them or updated.
Only use what information relates to you. You will come across too much information, and discard what is not relevant for example advice like I am giving you. If you don't understand something you have experts on your team to deal with that; you have people here who have become experts from field experience.
Be like a detective and a motivator at the same time. If I don't get all the answers/results at a particular clinic or day think back to number 1 above....be patient.
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