I've had my third clinic visit in six months and seen a the third different consultant and got a third opinion on starting medication for my PV!
The first visit at the end of last year to seen my newly allocated consultant for the first time since the pandemic and we discussed the symptoms which I've been having, mainly itching and she suggested that it might be time to start trying some medication. Sent me away with some information on Pegasus and Hydroxy Carbide with a view to deciding what to do at our next meeting.
Next visit, different consultant, who nobody on reception on the Haematology Unit seemed to know. She told me that I was too young to start medication and my condition was stable, but I could start if I wanted, but she didn't think I should. Also said didn't need another venesection as I was at my target level (0.45), but could have one if I wanted it.
Third visit this week and I had another junior consultant who is working under the one who I saw at the end of last year. I discussed my low ferritin levels with him and my concerns that my symptoms of itching and now restless legs may be due to low iron levels. He recommended that we look at starting medication sooner rather than later now as continuing with venesections would only end up lowering my iron levels further.
So in short, three clinic visits, three consultants, three different opinions on starting medication.
I have another clinic visit in three weeks to look at starting medication. I'm not keen on hydroxy carbide, so Pegasus would probably be my preference or maybe Jakafi, although that hasn't been offered at the moment.
Looks as though I will be starting on some kind of medication soon, but this doesn't instil much confidence.
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What you describe in terms of consistent care indicates that consistent care is not evident. The right to choose your provider is one of the most fundamental of patient rights. I would suggest starting by insisting on seeing the same provider every time. Moreover, it sounds like you need to consult with a MPN Specialist. Most hematologists simply do not have the KSAs to provide optimal MPN care. Suggest that you get a second opinion before making a decision about your treatment. if possible, you may want to switch your ongoing care to a MPN Specialist. Here is a list. mpnforum.com/list-hem./
You correctly point out that Jakavi is also an option for treating PV or other MPNs. Despite the fact that it is known for greater efficacy for pruritis, it is not always offered as a first choice. This is simply because of the cost. Hydroxycarbamide (HU) = $25.00/month. Pegasys = $4,200/month. Jakafi = $14,000/month. No surprise about which options healthcare systems tend to prefer. Note that some healthcare systems require that you fail on a cheaper option (HU) first.
Given what you are experiencing, initiating cytoreduction may make good sense. My experience with venesection-only vs Pegasys/Besremi is that the IFNs are more effective and easier to tolerate than vensection-only. I am very pleased with my positive response to treating PV with the IFNs. It is one of the best decision I ever made.
We are all different in how we respond to the treatment options. We need individualized MPN care provided by MPN expert providers.
The current thinking among many Drs, as you can find in some older posts, is to start IFN such as Pegasys (PEG) early, before the condition progresses. IFN may help prevent progression as also discussed in posts here. HC is less likely to offer this benefit although it can work quite well on blood counts. So your 1st Dr offering both options is good.
I was on IFN (Besremi) and it worked great. But you can see my recent post I had to stop. I will be starting Jakafi (Rux) tomorrow. I'm less clear about Rux and progression, I hope to resume IFN some day.
the probs with your docs are not uncommon unfortunately, this is why we need to educate ourselves on our condition and treatments.
I think your 54 so hardly too young to start meds, some docs like to start Peg at diagnosis, most docs are cautious about HU for younger patients.
Re the various drugs and itching. For some HU can help itch, Peg/Bes can sort it for some but for a minority like me it can make it worse, Rux is the best for itch.
All 3 drugs should help you to be less iron deficient. Which drug is best is a big subject and should be researched carefully. Ideally see a MPN expert every so often to advise on direction, they can also write to your local Haem to keep them in line, sounds like they need some help.
Make sure you search the MPN consultants & Drs on this website & email one of them . The waiting game is not good enough with this complaint . You will find a quick response by phone or email from an expert on these blood diseases 👍
Just a quick update on this post. I was due to see my consultant on Monday and her secretary called yesterday to say that she is ill and will be out of action for some weeks, so my appointment has now been moved to Wednesday, but not sure who it will be with. Time to refer to the list of specialists and send some emails I think (I know I should have done this sooner!)
Thanks Hunter. I've emailed a specialist from the list and had a reply back already. They are happy to take a look at my case and just require a referral from either my GP or current consultant. Current lead time is around 8 weeks for a new patient, but I'm happy to wait so long as I know that I can see someone that knows what they are doing.
I have always been happy to see different consultants who work in the same team. At the moment I go to Southampton Hospital every two weeks (post transplant) and I see one of four consultants. They discuss all patients in team meetings, the system works well and I get slightly different perspectives which can be helpful.
You are fortunate that your consultants work as a team, it would appear that the "team" looking after my care don't talk to each other. Not only that but most of them also don't seem to have much knowledge of MPNs which is why I am finally looking to see a specialist in this field even though they will be a two hour drive away.
Yes I am lucky, but I think that transplant doctors absolutely have to be the best because it really is a matter of life and death. Luck can go either way. Before my MF diagnosis, I was seeing just one haematologist who was sure that my blood results did not point to MF. Once I had ended up in hospital as an emergency, a different haematologist from the department saw it straightaway and confirmed with a BMB. I definitely prefer multiple viewpoints. I also have a two hour drive. Once a fortnight isn't too bad - it used to be twice a week when I first came out of hospital!
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Absolutely different experience entirely!
ET jak2 negative, first post
Hydroxy or Interferon for ET Jak2?
