About two weeks ago I put a post on here about my anxiety around changing my treatment plan from Hydroxy to Peg Interferon. I had been sent the vaccine but not given any specific instruction about how to self inject.
I appreciated the advice I was given from others who had trodden this path before me.
I followed your advice Hunter and asked for a hospital appointment and to be shown how to administer the shot myself in a medical environment.
I went to the hospital on Wednesday last week and had a tutorial and then subsequently gave myself the shot. I am still taking the Hydroxy for the time being until my next blood test in a couple of weeks, when my haematologist will review my current platelet levels. I’m hoping that I’ll soon be able to drop the hydroxy and just continue with the the interferon as it feels like overkill taking both simultaneously.
After the interferon shot had a few flu like symptoms which quickly passed but I have been feeling extremely fatigued. More so than usual. I’m not sure if this is a very common side effect but I’m working through it and trying to factor into my day more rest opportunities. I’m by nature a very active person so it doesn’t come naturally to take time out during the day to just sit and read or even have a quick power- nap! However, I’ve done it to try and pace myself more.
I’m feeling more comfortable now about taking the interferon. I’ve also had a brief discussion with my GP about the pain in my fingers. He thought it was most probably caused by the statins so I will pick up a different prescription tomorrow and see if that has an impact on the joint stiffness and the ‘pinging’ sensation in my fingers.
One final question for others with ET who have taken Hydroxy long term…. does it cause B12 deficiency? I’m wondering if I am B12 deficient as I seem to have a few ( not all) symptoms that I’d like to get to the bottom of. Any advice on that would be gratefully received.
It’s been enlightening to post on here and receive feedback from others on this same journey.
Many thanks to all who helped me through the decision making process. Much appreciated.
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Reggieroo
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Hi Reggieroo. I’ve had three interferon injections so far - extremely tired the first week (lots of impromptu naps), a bit less the second and much less so this week. Hopefully you will quickly start to adapt to it. Staying well hydrated (particularly this week!) and some exercise seem to help. Good luck.
Thanks for sending me your experience with the same treatment. I’m trying to take as much exercise as I can. I sustained knee injury in a fall last week so that hadn’t helped as I normally play tennis four times a week and I haven’t been able or inclined to be honest! I am still walking my dogs- they make sure of that.
I have realised that maybe I need to concentrate on my hydration levels while I’m on both drugs simultaneously.
I have been taking 135mg of interferon since November 2023 (started at 45mg). I can tell you my fatigue was through the roof. I found the side effects a lot for a while.
From my experience it does get better but 2 weeks ago I started taking CBD oil, and it’s helped so much. My fatigue is greaty improved.
I’ll look into CBD oil. Thanks for the tip. I really am struggling with the fatigue. As I said I’m normally very active. However, the last week I’ve really become quite inert. I also had a severe fall last week and injured my knee so I think the double whammy of the knee injury and the new drug regimen - I’m feeling pretty wiped out!
Thanks for sharing your own experiences with these drugs. Much appreciated.
I got 1500mg to start on a medium dose and if it didn’t work I could go up in strength. I take it at bedtime. I think it helps me sleep. Which I didn’t think was a problem contributing to my fatigue. But seems that the extra help sleeping has reduced my fatigue.
For context I asked my Haematologist if I could use it and she was fine with it, with the usual caveat of there isn’t enough data to say if it helps or not.
I’ll check it out. I still have some that I bought a while ago and I’ll dig it out first and use it and see how I get on. If it helps I’ll buy the one you’ve recommended.
Glad to hear you arranged to do the first injection after training and under observation. It will be very easy to do moving forward,
While HU does not cause Vit B deficiency as far as I know, it can cause hemolytic anemia. Suggest you review this concern with your MPN care team. It is very simple to have your Vit B levels checked. Your GP could order that panel if you are concerned.
While some will continue to take both HU and PEG for a short time during the transition, note that there is an interaction.
Monitor/Modify Tx hydroxyurea + peginterferon alfa 2a - monitor CBC: combo may incr. risk of myelosuppression; may incr. risk of cutaneous vasculitic toxicities in myeloproliferative disorder pts (additive effects; mechanism unknown)
Additional Considerations peginterferon alfa 2a in Pegasys - when used to treat HCV, caution advised w/ narrow therapeutic index drugs extensively metabolized in the liver; viral eradication may improve hepatic metabolic function, decr. levels, efficacy of concomitant drugs.
Note that HU is a narrow therapeutic index drug metabolized 60% in the liver. Note that HU and PEG can both cause fatigue. Taking them together may increase the risk of this side effect.
Thank you for replying again. I am totally bewildered by your response. So I will now look up your references and attempt to assimilate the meaning in terms I can understand….. I do understand that fatigue is a high risk side effect of taking both Hydroxy and Interferon so I won’t beat myself up too much now about my current state of lethargy.
On average, how long do you think it’ll be necessary to take both? I’m really keen to drop the hydroxy now.
I’m also taking Milk Thistle to help my liver function as I’m aware that it’s dealing with a lot right now.
Many thanks for your input and for finding the time to respond.
I would not be surprised that you might experience an increased risk of fatigue with combining HU and PEG. Likewise with increased risk of myelosuppression, which is after all the desired effect from both medications.
It is worth noting that the dose of PEG used for Hepatitis type C Virus (HCV) is the full 180mcg. The lower dose you are using would lower the risk noted in the Additional Considerations.
The discussion of titrating off the HU as you titrate up the PEG to the therapeutic dose is a discussion to have with your hematologist. It will bear on your history, risk factors, treatment goals, and risk tolerance. This is not a black and white decision. It involves judgement and preferences.
The answer I would give for myself would not necessarily be the same and the answer you would give for yourself. I have never had an incident of thrombosis in over 30 years with a MPN. When my PLT were above 800, I tended to be more prone to bruising/bleeding. I have had some microvascular symptoms (erythromelalgia) as well as side effects from medications. The side effects from HU and phlebotomy lead to my decision to use interferons, which have had far fewer side effects. Given my history and how I structure my treatment goals/risk tolerance, I am OK with letting my PLT be above 450 and do not hit the panic button the moment HCT is above 45%, though HCT<45% is the treatment goal that I use. I have been willing to give the Besremi time to do its work knowing that it is not as fast acting as HU. I have reached my maximum tolerable dose of Besremi at 175mcg based on the level of leukopenia that we set as a parameter. Note that my primary treatment goal is based on quality of life, which includes the acceptability of adverse effects from treatment.
The answer to your question about how long it will take to get off the HU will depend on how quickly you want to get off if it. You will need to discuss your treatment goals and risk tolerance with your MPN care team. If your priority is to move to monotherapy with PEG as quickly as possible, then that should be the strategy. Your hematologist can consult with you about how to best achieve a rapid transition to PEG-only.
That’s all incredibly helpful. You seem to know exactly what you want from your care team and so you’re able to make informed decisions about your treatment I’m so badly informed about it all and find the more I read about it the less I understand. I am trying to look up the medical terminology and get to grips with it but it’s not easy. I’m guessing you have a medical or science background?
I also think you have more access to your consultant and care team- as I only really have the opportunity to see mine once a year. All my blood test results are fed back to me via the nursing team, who always seem to be very short staffed! So getting a meaningful dialogue going about my ongoing medications isn’t always straightforward or easy.
I have been more assertive about my treatment since I first posted here but I have a very long way to go before I can fully understand the pros and cons of the different treatment options.
Are you on Besremi and Interferon?
I asked about Besremi and the Haematologist sent me a message to say it isn’t used widely unless I have an enlarged spleen AND more serious bone marrow scarring. Seems grade 2 isn’t considered acute enough. I’m more intrigued by the fact you said if it’s my treatment goal to move to monotherapy with PEG then that should be my strategy. The problem I have with that is that I’m not in possession of all the facts and information surrounding the different treatment options to know if it should be my strategy. The reason I have for wanting to drop the Hydroxy is more to do with the fact I feel I’m being ‘double medicated’ . I’m shocked that you have now said you’re receiving Besremi and Interferon!
I’ve been told that at the moment I’m ’low risk’ for a thrombotic incident- for the following reasons; I’m very active as I walk more than 15,000 steps every day, I eat a healthy pescatarian diet, BMI under 25 and platelet levels on average between 450 and 650….. although I realise it’s very much a simple formula for assessing risk it’s the only reasons I’ve been given for being classed as ‘low risk’.
The more I discover the more I realise how much more there is to understand!
As a clarification, Besremi is an interferon. Specifically, it is ropeginterferon alpha 2b, which is a monopegylated interferon which binds to one specific type of interferon receptor. Pegasys (peginterferon alpha 2a) is another type of PEGylated interferon. It binds to multiple interferon receptors. Besremi has a FDA and EMA indication for polycythemia vera. Hydroxycarbamide and Pegasys are both in common use for MPNs but are used off-label to treating MPNs.
I started on Pegasys to treat my case of PV, which includes both erythrocytosis and thrombocytosis. It used to be ET but progressed into PV about 11 years ago. I switched to Besremi when it received a formal approval for PV. Theoretically, it is supposed to be easier to tolerate due to its monopegylated formulation. I would note that I have not observed any difference, though others may experience otherwise.
Besremi is in clinical trials for ET but is not in common use. It is much more expensive than Pegasys and Pegasys is has been in common use to treat ET for many years. Though technically off-label, Pegasys is recognized in the common protocols used to guide ET treatment. The NCCN guidelines are US-based but recognized in many parts of the world. nccn.org/patients/guideline...
It is true everywhere that educated and assertive patients receive higher quality care. Passive patients do not. We must be our own best advocates. We must also educate ourselves about MPNs and actively engage our care team in shared decision making. Note that the NHS has an initiative related to how decisions should be made in collaboration with the patient. england.nhs.uk/personalised....
I do have a science background but in another discipline - clinical psychology. What I was trained to do is research, which has been essential in my own journey learning to manage a MPN and other conditions. My own healthcare journey has provided me with several unique and fascinating health-learning opportunities.
You are correct that I do have good access to my healthcare team, which is by design. I have a wonderful local hematologist who handles ongoing care. I can access him as needed. I also have a MPN Specialist who guides my care plan. I was seeing the MPN Specialist 2x/year but backed off to 1x/year at my request. She is available to to be my phone or patient portal as needed. Since my treatment plan and PV status are stable, I rarely need to reach out to her. I also have an Integrative Medicine doctor and a GP who are great. I can see them whenever I need to.
Given what you describe regarding your case of ET, it does sound like you are low risk. The formula for determining risk is sound. Note that the absolute platelet numbers you described would not be considered a risk factor. Thrombosis risk does not correlate with platelet numbers at that level. If the platelet numbers were significantly higher, the risk would actually be for hemorrhage. Platelet behavior is more important than how many of them there are.
It sounds like you would benefit from consultation with a MPN Specialist. Even if was only a few times, these more specialized hematologists are a critical part of a MPN care team. Here is a list. mpnforum.com/tsr-the-list/
Meanwhile, it will help to better educate yourself about MPNs. MPN Voice is an excellent resource and has recently advertised upcoming patient forums, It would be worth attending. mpnvoice.org.uk/ There are also excellent resource available from some other organizations. These recorded sessions are excellent. Suggest starting with MPN Molecular Biology. mpninfo.org/conferences/202...
Thank you Hunter- there is a lot to grapple with there and you have kindly given me plenty of pointers towards information sources which I will pursue. I am very grateful to you for helping me. I’ve learned far more from you in the last couple of weeks than I have from my haematologist- although it’s fair to say that they have only recently taken on my case as the previous Haem retired.
I can see there is a huge amount to assimilate. I don’t have a science background- so I do find it all quite uphill work.
Our NHS is in crisis mode. It’s grossly underfunded and understaffed. Morale is at an all time low and there are several unresolved pay disputes going on. On my visit to the hospital to be shown how to inject the interferon it was evident that the staff were struggling to cope. Several members of their team were off sick, which seems to happen often, and the waiting room was so packed it standing room only! The staff are clearly trying to do a good job in very difficult circumstances! So I do find it difficult to keep asking for information as they always seem stressed and overstretched.
As you say though - assertive and educated get the most attention so I will start to attend the online forums and any that are within travelling distance. I will definitely try to be more proactive in my treatment and care from now on.
Many thanks for all your help. I’ll be asking more questions on here too as I grapple with the mass of information available.
You are not the only one to report difficulties accessing healthcare. It is not a problem that is unique to the NHS. Many healthcare systems were struggling before COVID. Many have not recovered post-pandemic.
You will be able to assimilate the information you need. It helps to build a base of knowledge. This allows you to understand what you are reading and work more effectively with your care team. It also helps to take a very organized approach to the contacts you have with your care team. I go to every appointment with a written agenda, list of questions, and updates for my care team. I do not ever assume that they have what they need from other providers. I actively manage all of my information and serve as my own case manager. My care team appreciates this approach as it helps them to work with me more efficiently and effectively.
Here are a couple more resources of interest. The first training is about how to read your CBC. This is very helpful and relatively easy to understand.
The next training includes how leukocytes and platelets are made. The part on platelets starts about minute 15:00. It is helpful to learn about all three blood cell lineages, but you may want to just start with platelets. Note that the links to RBCs are there if you are interested. This is fairly heavy science.
The next training is about hemostasis - the coagulation cascade. It helps to understand the process of how clots are supposed to be formed in healthy function. This is also fairly heavy science.
Please know that you will have plenty of time to learn what you need to know. Start with the basics then move forward to a more comprehensive understanding.
I switched from HU to Interferon as the HU tore up my GI tract big time! After 8 weeks on HU, I was unable to keep solid food down. It was full time for 4 - 6 weeks (I lived on broth and crackers during that time - hence the switch to Interferon). The side effects of the INT were initially similar to the flu: aches and pains, chills, and fever. I only had that on my first injection. The 2nd injection was pretty much the same, but reduced severity of symptoms. I did notice, and have consistently since (4 months now), experienced a fair degree of fatigue and weakness. Dehydration has been an issue as well. Electrolites have helped with the dehydration. I am not sure about the possible B12 deficiency aspect. On your fingers however, what I am now dealing with is raised levels of Uric acid (over 7). I have noticed tingling in my toes and fingers, so I am in the territory of gout. Not saying it is the issue in your case, but it might be something to have the Dr. check out. Good luck with the Interferon.
I’m sorry to hear if your experience with HU. That sounds terrible! I’m having a similar experience on Interferon so it’s reassuring that the side effects may subside in due course. I already take electrolytes as I play a lot of tennis and I find it helps tremendously.
I also take Milk Thistle to help my liver functioning!
Good luck with your ongoing treatment and thanks for sending me your own experience with HU and Interferon.
Yes I have bought some but I’ve read that if you have a serious deficiency you need to have it via intravenous injection. I’m going to book an appointment to get it checked out.
I’m not sure whether I should continue with the B12 tablets though as I want a true reading.
Well done! It takes a bit of getting used to, I am on about month 2 and with increasing dose and endless appointments checking platelets - but I look at it like this: at least there is a treatment! Please know you are not alone and there are others all over the world dealing with the same issues and adjusting to Interferon. I've just been up to sunny Far North Queensland in our Winter and went snorkelling on the Great Barrier Reef - a bit of an effort as I also have the fatigue moments - which pass with rest.
That sounds like to perfect antidote to all life’s problems- including treatment for MPN’s.
Travelling is a personal passion. My husband and I have spent the last 15 years travelling to some of the remotest parts of the world- all done in a shoestring budget and where possible, using local transport.
The Barrier Reef is on my bucket list! Maybe next year?
I thought I’d try medicinal cbd oil - I didn’t want to buy it off the shelf.
Ye gods it’s disgusting.
0.5 ml under the tongue and it tastes as though you’ve licked the floor of the local cow shed! Midnight saw me chomping on a spring onion to get rid of the taste. How do people smoke this stuff? Never again.
That’s hilarious! I have tried CBD oil before and have used a peppermint as my antidote of choice. I’m very amused you ate a spring onion at midnight to rid your mouth of the taste! I’d never have slept if I’d done that as spring onion repeats on me! 😂
I found injection in mornings worked better for me lots of water & walk etc stopped any fatigue . I would think once Hydroxy out of system you will feel better. My hydroxy was stopped before starting Interferon.
Also it’s not a quick fix to reduce platelets it takes gradual time . Mine took 18 months to reach 350. So not sure what your Dr is expecting. Hopefully you can reduce & drop Hydroxy soon . Julia . U k . 👌
Yes I realise it’s not a ‘quick fix’ but I do feel very sluggish and inert since starting interferon. Although it’s very easy to ‘blame’ the meds. I also had a really bad fall last week where I slipped in some mud and really hurt my knee and whacked my head! No alcohol involved either before you ask! I’ve been struggling to walk far as I’ve been in so much pain. So it’s probably a combo of the new meds and the fall!
Interesting that you said you take it in the morning. I’d always thought I’d take it at night and sleep it off! I suppose I’ll just have to experiment?
8 weeks I came off everything before starting Interferon . MPN experts are best on this advice as know more than a lot of the Drs from experience of use of the drugs we need . Julia 👌
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