HI all, im hoping someone will be able to help me or at least tell me their story. I am 48 have had PV for 2 years now. Treatment has been baby aspirin and venesection. I am now anaemic and suffering to the point its effecting my work and home life.
Im literally at breaking point, ive spoken to my GP who gave me irontablets and has been little help, my consultant keeps cancelling appointments and i literally have no idea where to turn.
I struggle to stay focused and awake at work to the point that i changed jobs from an Ambulance tech to now working behind a desk !
My homelife is suffering, i cannot plan days out as long drives are a def no go and i just do not have the energy.
Any advice would be greatly received
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hi sorry your struggling I’m 69 only diagnosed last august I’m on oral chemo have triple negative ET. And this last week Iv literally just been on my bed. Today I have a bit of energy so I will do what I can cope with. .try and cope on a day to day basis. And don’t plan too far ahead and then you won’t feel so bad do what you can manage and don’t beat yourself up if you can’t do much. Try to get appointment with your coworker nsultant best of luck x
sorry to hear you’re going thru such seemingly scant management of your condition. I’m with the advice LittleLuna and mhos61, as well as Hunter have given.
I was diagnosed a year ago and it is certainly manageable with meds. Good luck! I’m sure you’ll get back on the ambulance again.
Thank you for responding, honestly I feel so stupid as im getting nowhere with Consultant . Ill keep going though and it really helps to hear everyone elses stories.
Sorry you are feeling like this. I have PV, on aspirin and venesection too. Also anaemic now due to venesections, its a balancing act. The fatigue is worse with anaemia too.
The thing that worries me is GP putting you on iron.
This is one thing specialists and haematologist do not usually recommend. We have to be very careful with supplements and only with MPN Specialist support. Please get in touch with your haematology department, speak with the secretary if you have too and let them know ur GP has prescribed iron and need to discuss ur case even if via phone call.
It could be ok in your case but should be managed by your MPN Specialist or haematologist if you dont have specialist.
Thank you for taking the time to message. I have tried to get in touch with my consultant regarding the iron tablets but as yet She is still on holiday and nobody else hasd come back to me. My GP literally said its like playing Russian roulette and every time my bloods are done just to monitor my levels ! Its ridiculous . Ill keep pushing and see where i get
Hi iswhatitis, I’m so sorry to hear of the issues you’re experiencing, it’s really not acceptable care; don’t settle for it, start advocating strongly for yourself. You are young, and have many years ahead of you living with this disease. There are treatments other than venesection for PV such as interferon, which may suit you better symptom wise, but also may halt the progress of your disease in the long term. If you can’t see your consultant how can you even discuss this? Absolutely not good enough!
Having venesections to the point of requiring iron tablets for venesection induced anaemia is a contradiction in itself. The fact your Consultant is consistently cancelling your appointments doesn’t help the situation. You then have no option but turn to your GP who may not necessarily understand the intricacies of treating MPNs.
You could begin by outlining your concerns (strongly) in an email to PALS. It would be beneficial to insist on a face to face appointment in that email to address these significant concerns. PALS are usually efficient and effective in working with the patient to resolve any issues. I have used them in the past in a similar situation with a good outcome.
The other option is to ask for a referral to a hospital with an MPN Specialist, or at least a haematologist with an evidence based ‘interest’ in MPNs. You will have to be referred by your haematologist or GP, but don’t let that put you off.
I agree fully that you need to be your own strongest advocate- it's how I went from being prescribed HU [hydroxyurea], which is a generally toxic drug, with which I experienced huge side-effects [daily headaches, vertigo/balance issues, GERD/abdominal pain despite PPI tx, and brain fog, among others], and no specific action against the underlying causes of PV, and even worse, has not been shown to prevent disease progression and transformation, to Besremi [INF] which has all of the opposite characteristics.
This is the global list of MPN specialists, of which there are quite a few listed for the UK:
Hi,interested in your comment about hydrea.Im taking it daily and wondered if it could be stopped and about its benefits to me with PV.No one really explains anything completely. I've Googled it but nothing .Do you know of a reliable web page/ research paper I could read please??
I have been saving and re-reading as many articles and studies as I can find, not just in support of INF for MPNs, but also looking at what other treatments are in the "pipeline", and what the relative risk vs. benefits are to each, so if you would like more to read, please just let me know.
Thanks for your comments, and FYI, I am always aware that there are patients who are on HU, believe it's a good medication for their disease, and aren't interested in hearing anything negative about it, and I do try to maintain some degree of circumspection for that reason. For that reason, I apologize for having [apparently] upset you.
1) Therefore, see the new edit of my post above.
2) While blood count control is important- for me, preventing my disease progression to myelofibrosis and/or leukemia [the things that make us sick and kill us besides acute thrombosis] is at least as important, and SWMBO, who wants and needs me around, agrees. HU has NEVER been promoted as or proven to prevent disease progression, and some experts think that it may [in the long term] promote transformation to leukemia.
3) I don't think that there is any question that long-term use of HU has been proven to promote the development of new cancers- especially skin cancer, which is often 'excused' by saying well, it's non-melanoma skin cancer.
BUT, as someone who has just been diagnosed with a BCC, on the bridge of my nose approx. 1 CM from my eye, and is awaiting Mohs surgery to try to remove it without significantly [further] disfiguring my admittedly already homely face, or damaging my sight, that's small compensation.
Agree there I have been on hydroxy for 11 years and it has been good to me Still think I was put on meds too early, but been ok. Like others evidence of Kidney Disease, skin issues but on interferon in addition now. Thyroid, liver and rh factors raised now aahhh think due to interferon Docs and Consultants dont liaise with each other to help this a problem they shoulf combine their skills But hey ho I cant complain , still doing good Seems like we are all so different with the reactions to the different treatments really essential to have the best care from our Consultants thats the key I think, and positive thinking with good self care x
Ok, then I'm sorry to have assumed you were upset.
Could you please provide your references for "many renowned MPN specialists" comment, because I do always try to attend to as many points of view as possible re: MPN disease prognosis, and treatment recommendations.
No MPN specialist would tell you that besremi or any other IFN has been provem superior to Hydroxyurea, because that would be a falsehood.
Sure there is evidence that IFNs reduce the jak2 burden
But there is no conclusive evidence that improves patiient outcome.
As mpn patients we may not have time to wait for conclusive trials.
My criticism of your post was that you dismissed Hydroxyurea as toxic.
That;s wrong, it helps many patients with little to no side effects. Ans\d it has never been shown that any IFN is a superior treatment in terms of overall survivability.
You are entitled to your opinions, but in my opinion, those that you have stated are far from being established as facts.
"Hydroxyurea is an extremely toxic drug with a low therapeutic index. Since hydroxyurea inhibits DNA synthesis, it can result in significant toxicity, including myelosuppression. Furthermore, inhibition of DNA synthesis without affecting RNA synthesis may result in red blood cells becoming megaloblastic."
"They also use hydroxyurea off-label in the treatment of polycythemia vera, essential thrombocythemia, psoriasis, acute myeloid leukemia, meningioma, melanoma, and ovarian cancer."
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This is from The National Library of Medicine.
These are FACTS.
But, I suggest we agree to disagree, because I come here to support others, and occasionally to be supported, not to argue.
Also:
"Carcinogenesis and Mutagenesis
Hydroxyurea is genotoxic* in a wide range of test systems and is thus presumed to be a human carcinogen. In patients receiving long-term hydroxyurea for myeloproliferative disorders, such as polycythemia vera and thrombocythemia, secondary leukemia has been reported. It is unknown whether this leukemogenic effect is secondary to hydroxyurea or is associated with the patient’s underlying disease. Skin cancer has also been reported in patients receiving long-term hydroxyurea.
Conventional long-term studies to evaluate the carcinogenic potential of hydroxyurea have not been performed. However, intraperitoneal administration of 125 to 250 mg/kg hydroxyurea (about 0.6-1.2 times the maximum recommended human oral daily dose on a mg/m2 basis) thrice weekly for 6 months to female rats increased the incidence of mammary tumors in rats surviving to 18 months compared to control. Hydroxyurea is mutagenic in vitro to bacteria, fungi, protozoa, and mammalian cells. Hydroxyurea is clastogenic** in vitro (hamster cells, human lymphoblasts) and in vivo (SCE assay in rodents, mouse micronucleus assay). Hydroxyurea causes the transformation of rodent embryo cells to a tumorigenic phenotype.
Toxic (damaging) to DNA. Genotoxicity is the property of chemical agents that damage the genetic information within a cell causing mutations, which may lead to cancer.
**"A clastogen is a mutagenic agent that disturbs normal DNA related processes or directly causes DNA strand breakages, thus causing the deletion, insertion, or rearrangement of entire chromosome sections.[1] These processes are a form of mutagenesis which if left unrepaired, or improperly repaired, can lead to cancer.[1] Known clastogens include acridine yellow, benzene, ethylene oxide, arsenic, phosphine, mimosine, actinomycin D, camptothecin, methotrexate, methyl acrylate, resorcinol and 5-fluorodeoxyuridine.[2] Additionally, 1,2-dimethylhydrazine is a known colon carcinogen and shows signs of possessing clastogenic activity.[3]
The facts are this medicine helps many people reducing the chances of trombotics events which can be very damaging. These facts have been proven in many controlled studies over decades.
Thank you for the advice. Its so crazy having to take iron which i know will increase my cell count and cause issues. TBH it hasnt really helped with the fatigue anyway. Im relying on my GP as my consultant just does not respond and constantly cancels. Im going to look at an official complaint and insist that i have a face to face meeting as so far every appointment with the specialist is via the phone. Thank you again
Please keep us updated. We’re all rooting for you.
Where is your Consultant, is there any other hospital nearby that you could transfer too x Feel for you its so hard now and rare, to get the right care
The problem is where i live the consultant i have is prob the best in area. Its just hard as im relying on a gp who really does not understand the condition
Hunter is the iron expert and you'll likely hear from him
In simple form, if a PV patient gets extra iron, it gets used up making more red blood cells rather than increasing iron levels, not useful for a PV patient.
"One would not want to provide either oral or IV iron, because that would defeat the purpose and increase the hematocrit perhaps putting the patient at risk for thrombotic complications"
If the anemia is the cause of your malaise the potential good news is there are ways to address that cause, in particular via cytoreduction rather than venesections. This includes HU, Interferon, and Jakafi. Your Dr should have discussed these options with you.
I get asked the same questions every time my consultants assistants call me , they never offer any alternatives or advice. Ive been relying on my GP for basic support
If you can't access a specialist you may need to get specific with your GP on these alternatives. It can even help to bring in reports that explain these options, a good Dr would be open to learning. I have done this for my complex troubles.
As Hunter notes, anemia and iron deficiency are not the same thing in MPN patients, so your Dr needs to understand that.
The link I showed is one example of this sort of idea. Here is another that suggests cytoreduction as the proper alternative to venesection:
"The difficulty with patients with polycythemia vera is that in the absence of proper cytoreductive therapy, we have really no way of correcting the iron deficiency. If we take the phlebotomized patient and give them iron, we’re going to end up phlebotomizing them further."
I went thorough the same thing when I was using therapeutic phlebotomy to control the erythrocytosis. Even in the absence of anemia, the chronic iron deficiency symptoms were worse than the PV symptoms. I experienced fatigue, loss of concentration, alopecia, and reactive thrombocytosis (PLT + 200K). That is why I decided to opt for treatment with the interferons (Pegasys/Besremi). The interferons have been more effective for me than hydroxyurea and phlebotomy and much easier to tolerate. The IFNs have significantly improved my quality of life. My JAK2 allele burden has been reduced from 38% to 9%. in 18 months. I am hopeful for a molecular remission.
I feel better than ever. I can engage in ost any physical activity I wish to, despite being 67. I could certainly work an ambulance if I wished. We all react differently to the treatment options. Many leading MPN experts now favor the use of the IFNs over other options. There is research underway to provide the evidence to support starting the IFNs earlier for low risk patients. The IFNs are already a preferred treatment for younger people who have not responded well to other options.
In terms of where to go, that would be to a different consultant. What you are describing is unacceptable. Suggest filing a formal complaint with the hospital and changing doctors. Be sure to select a MPN Specialist as your consultant. It is the only way to ensure optimal care. Here is a list mpnforum.com/list-hem./
Suggest considering a change to your treatment plan when you consult with a MPN Specialist. Your quality of life is just as important as preventing thrombosis. It is time to get back on the ambulance and live the life you want to live. I believe you can make that happen. It is up to you to make it so.
Thank you so much, I have today already emailed and left a voice message again for my consultant to call or at least one of her assistants. Life is so draining and i need answers and an alternative treatment plan asap. Thank you though, everyones replies has given me a kick
Hi👋 Have you had your levels of vitamin D and B12 checked? There could be some other underlying reason for your lethargy. In my case D and B12 supplements are helping. I would question the iron tablet prescription as I understand only the hospital consultant can approve this and iron infusions might be more appropriate.
Ive had so many scans , blood tests , repeat tests that tbh im exhausted . Im chasing my consultant and will keep doing that until we have discussed alternative treatments . Thank you for your message
That's horrid. I was exactly the same until I asked for pegasys interferon. After a few months when interferon was controlling haem counts I then asked for a short course of oral iron. Changed my life! You don't realise the slow decline in energy that repeated venesections can cause until you suddenly can barely walk up a flights of stairs and your hair thins to a stage you feel ugly. Insist the consultant sees you ASAP. Go to PALS at your hospital (patient liason). They can really help. It's no way to live otherwise. I love interferon. Hair coming back and energy levels great. I swim 4 times a week 64 lenghts now. Could never do that before. Am 54 years old. Good luck. X
hi, it must be awful for you. I’ve got Et and am retired.
I think you should apply for pips. You can get it whilst working. It’s really really difficult to get.
The little extra money will allow you to get a helper around the house.
I’d say the best way, is to make an appointment with age Uk. You need to take someone over the age of 50 or 55. Do check. They know how to answer the questions. Good luck
Hi I completely understand how you are feeling, i have been the same way for some time, not feeling like your life is you own anymore. As someone else has suggested contact PALS or the Complaints Team. I had to do that last year when i was waiting 6 weeks for a blood form from the hospital prior to the diagnosis of ET. I don't think the medical profession realise that when you don't have a lot of energy you don't want to waste what you do have trying to get some answers or help. I wish you luck.
I certainly will be complaining. Your right i feel like nobody cares as its not their problem. The fatigue is crippling and the lack of help astounds me. Not giving up though and i hope things get better for you too
Hi, I'm 47 and was diagnosed with pre mf last year. I'm on interferon and aspirin. I agree with the others, these are really specialist conditions and need specialist treatment. It sounds like you should consider getting advice from a different mon specialist. My own experience with my consultant (based in London) has been excellent, and I'd happily recommend him. If locality is an issue you might consider doing a teams or zoom consultation which have also worked well for me.
Thank you for the message , ive chased the consultant again today and if i still get no assistance im going to go to the hospital and see who i can speak to there
I am 41 and have had it for almost 4 years. I am lucky because I haven’t had many symptoms, but I am also a high strung individual!!! I do get tired but it hasn’t affected my life, just go to bed at 9 like an old person. But I think the reason why I don’t is because a phlebotomy lasts me 5-6mos or longer. And the last one I had I was so exhausted and short of breath. I pushed through that day, but it was hard. I agree with everyone the iron tablets are scary, would ask about them. You may want to consider Besremi or PEG, I am on Besremi. But if you continue this path you need to drink a lot of water!!! Day before, day off and day after phlebotomy. You may even ask if they can give you a liter of fluid after your treatment. This may really help with your fatigue. I drink 64oz daily. And I really started after my last phlebotomy in October. Hope this helps
Thank you for the message. Im having venesection every 3-4 weeks and as i explained to my gp taking Iron tablets will not help as its a vicious circle. Just feels like nobody actually listens to what i say at times , at the point where im sick of moaning . Ive called the consultant again and asked for a meeting to discuss options . How long ill wait for a reply is anyones guess though. Im thinking of going back to macmillan at the hospital, last time i did that they admitted me as my renal function was well off . Thank you though for the advice certainly feel like i have a little more to throw at people now
Sorry to hear of your lack of medical leadership and support. This disease will crush you mentally and physically without a plan of action and support.
I am 54, PV Jak2+. Started with ET and about a year later my hematocrit increased dramatically and required scheduled phlebotomy 3 weeks apart for months.
On pegasys for 12 months and thriving. Once my platelets and hematocrit started to be controlled with the drugs the brain fog lifted too. This took months and months but worth the ride. There are a few side effects, like insomnia and itching that honestly took months to get use to too. 12 months in and the insomnia has disappeared, ( I became much more active again because I feel so much better) and itching is pretty much controlled.
There are several drug choices but Pegasys seemed right for me and MPN Specialist agreed. Look for more support medically even if you have to travel or do zoom calls because they will benefit you so very much.Heck I would look for a new GP also because they do not care to understand your needs. My GP was amazing and knowing I have that support is part of my success.
( I was the first ET and PV patient in the Doctors clinic, they all learned from me.)
So good to hear that some people are getting the support and help, ive literally just got off the phone to my GP who has finally agreed that the use of Iron tablets is not the way forward. They now want to introduce a new diabetic drug to bring my sugars down which have gone through the roof lately . The aim is to eliminate this issue and then move forward. Im still waiting for my consultant or a minion to call me back to discuss other possible treatments. Honestly this illness has completely destroyed my life.
You can safely take a course of iron but only once your counts are under control using interferon. Iron tablets not recommended with venesections only treatment as would push your counts up. But really, do make a fuss. Whist the NHS is brilliant it is underfunded and understaffed. There is absolutely no reason why this condition should destroy your life.
Awe you sound to be doing okay. Now. ! It is very interesting that we all have some individual issues. Mnpn 's are surely testing us. I opted out from Hydroxyurea to interferon Pegasys. However the headaches and fatigue are still with me. I work two days a week and love it still. They the hospital support me in the work I do. Ironically I work in a cancer hospital, but I support children with brain and bone Cancers they are warriors. I love my job.... I just wish there were support groups in the hospital. I love these forums, however each of us have very individual issues. Hunter is my "go to". Very knowledgeable and understanding. So what I am actually saying is, we are all doing as well as we can. Seek help. Ask for advice. Don't be afraid to gain a better quality of life. Go back to your mpn specialists. Change your Dr. Talk to us the group who are affected. Someone will help and support you. Love T.
I think you will find once you feel better and you’re stronger mentally and physically that you can handle it. You are an especially strong and caring individual based on your chosen profession. You just need some support in your corner now. If you are able to visit a mental health specialist for support that would be good also. The more people holding you up when you need it most, the better. 🍻
Thank you , im just not use to asking for help. Im usually the one giving it !! Honestly just never even thought this condition would impact like it has, think i havent taken it serious as ive been fobbed off for so long now. Thank you though for the support and advice
You should be taking a high quality multivitamin on a daily basis, if you aren't doing that already. You may also try taking a Folic acid supplement along with your multivitamin, which may help with the anemia.
I found that supplementing with whey protein isolate powder in the morning and evening also helped with fatigue when I was having chemotherapy treatments. I still do that today, because I am getting older and it contains all the essential amino acids that I don't get in my diet.
Thanks for the message, i was an athlete in my previous life lol and supplement my diet accordingly, also being diabetic im extremely accurate with my carb/fat/protein macros. Still suffering with the fatigue though
Hi. So sorry to hear what you’re going through. If there’s any way possible for you to see an MPN specialist even once or twice a year you absolutely should. The MPN specialist can then work in conjunction with your local doc overseeing your care. There’s no comparison in the knowledge and treatment of a specialist. If there’s absolutely no way you can see one even once a year, ask your doctor if s/he will consult with one. All the best to you. Katie
Well you certainly got a lot of solid input here. Many of us have been through similar problems so I'm confident you will find a solution.
I changed doctors last year due to his lack of response to my iron issues and the relationship of those issues to phlebotomies. I've been on HU for almost 2 years, no phlebotomies for 10 months and my numbers are good with minimal side effects.
Trust me - there is a solution for you. As suggested here, be your best advocate and find a MPN specialist. You just need the right doctor. Wishing you all the best
Hi, I was diagnosed around the same age as you with PV. I'm now 62 and have been on aspirin and venesections since then. I too have had very low iron as well and am in the mist of figuring out how many iron pills to take without making too many red blood cells. It is definitely a balancing act but well worth it for me to continue doing what I'm doing without taking INF's or HU. I've been done the road with INF's and my body instantly revolted on a dose of 45mcg with sky high liver enzymes and then went on a 22.5 dose which helped liver but I hated the mind altering effects. HU was out of the question because of family history of skin cancer and living half the year in the sun. Please note that I'm classified low risk and am under the care of one of the best MPN specialists there is. (Dr. Tefferi-Mayo) We are all completely different from one another so it's critical to have care that fits you individually.
I had a BMB last August and have no increased fibrosis or progression of any kind. There were not any identified additional bad mutations evident as well. AB was over 90%. My doctor believes that the jury is still out on AB significance for disease progression and LT benefits of INF's. I'm on 2 low dose aspirin a day since turning 60. For myself daily exercise is the secret drug for feeling better despite low iron. I mentally feel more alert and focused but do have my moments of fatigue. Best for you to find a MPN specialist who can individualize a health plan that works for you! Best wishes. Kerry
Hi James, I take one in the morning and one at night. It's just a routine that has worked for me. So far have not had any reverse reactions from the aspirin. Best Wishes! Kerry
So many excellent comments. You can tell you hit a nerve here. So many of us have dealt with fatigue, but I agree that this condition should not have to rule your life. I'm 74 and still working part time and exercising daily. I do suffer from fatigue, but I'm able to keep going.
You definitely need consultation with an MPN specialist and local oversight by at least a knowledgeable and attentive hematologist. NOT a gp.
I would look for a second opinion or consultant immediately, even if that specialist is at a distance. That person could then consult with a more local hematologist. As someone pointed out, you could even send bloodwork and talk by phone or by zoom.
I've also been told that iron pills should be avoided because it would mean increasing Hydroxyurea, which is a bad tradeoff.
My hematologist avoided treating with venesections because of the side effects. I'm on hydroxyurea. My bloodwork has been good, but there are side effects.
Please start by getting a consultation with an excellent MPN specialist! With the right care, you should definitely feel better.
One more question for everyone: has anyone tried vitamin B12 shots for fatigue? I did it once but wasn't sure it helped at all. I was told there is no downside to B12 shots.
B12 supplementation will only improve your symptoms if you are significantly B12 deficient, which can be easily determined by a blood test. ...and for most B12 deficient people, an oral supplement containing at least 1000 mcg [1 mg in other words] will overcome the decreased absorption, which is the most common cause of the deficiency [other than diets which don't include red meat], so injections are rarely necessary.
B12 deficiency is also common in patients who are taking acid-suppressing medications like Pepcid [famotidine], Tagamet [cimetidine], and/or Proton Pump Inhibitors- Prilosec [omeprazole], Prevacid [Lansoprazole], and/or Protonix [Pantoprazole], because acid is necessary to facilitate its absorption from the gastrointestinal tract.
Thank you, that's a great explanation. It happens that I do take famotodine and I do not eat meat. I'm already taking B vitamins, as per hematologist. I'll ask about my blood levels of B12.
I'm hopeful it helped, and always glad to try to lend some of whatever you might need -[although $'s are kind of in short supply, so I can't really offer those... ]
Also "B-vitamins" generally do not include adequate B12- it usually requires a dedicated B12 tablet... Unfortunately, SWMBO bought cherry-flavored chewable B12 tablets for our current supply, and even though I swallow them w/o chewing, the flavor is just e...
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But hey ho I cant complain , still doing good Seems like we are all so different with the reactions to the different treatments really essential to have the best care from our Consultants thats the key I think, and positive thinking with good self care x
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fatigue 
Fatigue
The fatigue!
Inflammation and Fatigue
