I was diagnosed with P/V in December 2022 Jak 2 positive .
Since my diagnosis my bloods have only been stable for a few weeks and at my last review I was told my haemoglobin 169 and haemltocrit had crept back up to 0.527 I was told they didn't want to send me for a venesection because they need to control my blood count with the interferon and that over venesection can cause other illness.
I've been told to increase my interferon from 90 micrograms to 135 micrograms and to take the higher dose every other week until I've used up my 90 microgram dose that I have left.
I'm worrying that the medication doesn't seem to be controlling my blood counts and I worry that the PV could progress to something else.
Has anyone else experienced having to take high dosage of interferon and what is the highest dose that can be taken .
The higher dose gave me joint pain for a few day and feeling really tired
Thanks
Written by
Blonde25
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I have ET and am on interferon. First month 45ug, 2nd month 90ug, 3rd month 135ug, then 3 months on 180ug. Platelets finally responded at end of third month on 180ug.
My ALT liver enzymes were rising however so my dose needed to be reduced. Now my dose is 90ug. So far platelets holding below 400.
Maybe for me raised ALT levels were a blessing in disguise as I had asked if they reduced the interferon dose once you become stable. I was told no as you are monitored less frequently.
My dose has been steadily reduced over a two yr period because I’ve been responding so well. After starting in 90 a week I’m now on 90ug every 25 days. I’m being monitored closely every time we increase the time between each dose.
The first and most important thing is you need to get venisected so you Hct is max 45 although some docs say 43 for female. Your doc worries me, every haematologist knows the top priority is to keep Hct below 45, 52 is far too high with PV, I don’t want to worry you but your thrombotic risk is much higher at that Hct. Interferon may reduce your Hct but it can take weeks or months or years for some, the standard practice is to keep venisecting until the interferon works, I know several patients who were still venisecting on interferon for a year, one two years. The venisection may make you a bit tired etc but will do you no harm at all, you will probably feel better. I would forget about progression etc , you are only just diagnosed so highly unlikely for a very long time if ever. What you need to be concerned about is getting your Hct down to less than 45 immediately and keep it there by regular testing , at Hct 52 you may need a few venisections to get to 45, possibly one per week or sooner until Hct under 45. Also I suspect interferon if Pegasys will be more effective if dosed weekly. Where are you?, your doc is not doing his job properly, I don’t know if you have the choice of finding another doc. Re high dose, some go up to 180 or 240 mcg but that’s unusual. I suspect what you need is more time for Interferon to do it’s job, if you can’t tolerate 135 stay at 90 and keep venisecting until Peg kicks in , it can take a long time for some. I hope that helps, feel free to post more as it sounds like you need some helping along.
Thank you , I asked for a venesection and they said no . I'm going to ring Dr Garg next week or leave a message for her she is an MPN specialist.
I've been on 90 micro grams of interferon weekly for about 3 months and now they want me to increase to 135 grams weekly but to only give 135 every other week and keep injecting 90 on the second week until it's gone . They said they would review me on the 8 December. I'm not happy with how high my heamacrit is and I've been venesected at least every month since may . I agree with you that the doctor isn't treating me properly and whilst I am waiting it could go even higher.
I am pleased to hear you are contacting another doctor, sooner the better. Leaving you with Hct at 52 with PV is in my opinion medical negligence as its unsafe and should not be allowed, if it were me (excuse the expression) I would be raising hell until I got venisected to under 45.
Dr Garg, I assume you are at LRI, I am also there. OK, My HCT at its max was 0.62 I was on Hydroxy, aspirin and venesection. They decided to move me on to Pega. So at some point I was on Pega 90, Hydroxy, Aspirin and venesections. I am now off hydroxy and have been for a number of years, I had one venesection in the last three years, caused by a reduction in Pega from 135 to 90. 90 is too low for me.. My HCT has been ok My pega took about three years to really take control of my HCT. I have not been seen at LRI since before Covid.
My allele burden for JAK2 is now below 2% and yes, I still feel tired...
My experience and research go fully along w/ Ainslie's- if you're in the 50's for Hct, you should get phlebotomized.
My tx team wants me to go even when it's just 46 or 47, although I have to admit that I'm recalcitrant about it when the numbers are that close to goal.
There is only 1 clinician [who just happens to have been an Onco Pa for apprx. 20-years], who agrees with my not going to get drained at those low Hct elevations.
The rest of the time, they seem to be in a panic if my Hct blips up even a little bit.
My general laissez-faire attitude was born of the knowledge that my Hct had been regularly in the 60's for apprx. a decade before my Dx, and well prior to any treatment except donating blood when I had an opportunity. I did take a baby aspirin daily for the last 5 years if that time, as [poorly supported, as it turns out] primary prevention for coronary artery disease, but I had no untoward clotting issues despite it all.
That said, if my Hct blipped to 50 or >'er now, I'd be pushing vigorously for a phlebotomy session, or maybe even 2.
...and that's with me on 81 mg of ECASA twice-daily and 500 mcg of Besremi every other week [the maximum allowed dosage], which I have been on for about 6 months, give or take.
I would agree with the assessment noted by ainslie that you may need to reconsider your treatment approach. I would suggest that you consult with a MPN Specialist who is more familiar with treating MPNs than a regular hematologist. Here is a list. mpnforum.com/list-hem./
While is possible to cause problems by over-vensection, it is critical to maintain your HCT/HGB at target to reduce risk of thrombosis. It is a balancing act between the possible adverse effects from venesection and the risk of thrombosis. Venesections reduce the level of iron in your body. Iron is needed to make RBCs. Less iron = fewer RBCs. Over-venesection can cause anemia, but you are nowhere near that level. Chronic iron deficiency can also cause other symptoms even in the absence of anemia. There is a balance that needs to maintained between the iron deficiency symptoms and the inherent risks uncontrolled erythrocytosis. Note that checking your iron levels with a full iron panel should part of the routine monitoring when treating PV.
Regarding your dosing with Pegasys, the standard dosing is weekly. Pegasys has a half-life of 80 hours. Weekly dosing helps to ensure a steady amount of Pegasys in in your system. A lower weekly dose would likely be more effective than a biweekly higher dose. It would also likely be more tolerable.
Pegasys can take time to work. We are all different in how long it takes and what dose we need. We are different in what dose we can tolerate. It is common to combine a tolerable level of venesection with a tolerable dose of a medication to provide the optimal treatment endpoint. Until the Pegasys has had time to do its work, you may need to keep your iron levels in check to ensure that the erythrocytosis is properly controlled. You may also want to consider a lower weekly dose of Pegasys to achieve your testament targets.
Suggest that you review your treatment plan with a MPN Specialist as soon as possible. This is the best way to ensure an optimal outcome.
Thank you hunter, I'm not happy about my heamacrit being this high and will be contacting DrGarg next week . Waiting until the 8th December could be dangerous if it goes higher in the meantime . I only knew how high it was because now I ask for my lab reports from the hospital because I still can't get access through the NHS App
That is unacceptable at several levels. Leaving you at 52% with PV while waiting for the higher dose to work is not an approach anyone I know would be comfortable with. The resistance to doing a venesection does not make any apparent medical sense. Moreover, it would be your preference to use a venesection at this point, which is sound judgement on your part. You are an equal partner in the shared decision making process.
I see now that you are doing weekly. I would note that the dose does not have to increase by the standard 45 mcg. Many of us increase by approx 22.5mcg when we are stepping up the dose. I would think that a weekly dose of 112mcg would be more effective and less likely to cause adverse effects than alternating with a higher dose. That is something, though, that you would need to conform with a MPN Specialist.
It is hard to understand why some organizations do not post labs in patient portals. This is a very basic function of patient portals that enhances patient care. It also reduces staff workload in responding to patient requests for their records. It is the patient who owns the information in the record, not the provider/healthcare system. Readily accessing your medical information is a basic patient right. It is concerning that you would not be automatically notified that your HCT was above your treatment target. That is a basic requirement of adequate PV care.
I am going to agree again with ainslie. It is a good thing that you are contacting another doctor who is a MPn Specialist. Perhaps it is time to transfer your care altogether.
Hunter, the consultant see is seeing is on that list, she stopped me having venesections, unless it was the last resort, remember I had 65 before she cut them down. The Consultant is really good, the others tend to order a repeat action, the one mentioned does read the case notes, she was the one who started the allele burden tests and the spleen ultra sound. I have more confidence in her than the others..
That makes a bit more sense. 65 venesections is a lot of venesections. Do you know your current iron levels? That is certainly relevant.
It sounds like you direct input from Dr. Garg ASAP. There is a balancing act to maintain. It is too bad that rusfertide is not available yet. I expect you would be a good candidate for a combined medication approach. Meanwhile, it will likely require a careful use of venesection to keep erythrocytosis in check until the PEG has time to do its work.
given that you had some AEs with the 135mcg dose, I would ask about doing 112 weekly as an alternative. I have used that approach with Besremi when increasing. it worked well for me.
My numbers are all OK, I asked about my iron and that was within range. I think the OP needs to ask for the reason why no venesection, the data / info she has is not enough , there could be other issues
I know I took over 3 years to see significant benefit from pega. And my 'sweet spot' is 135.
I've seen all the consultants at LRI, theone mentioned may not be the best for bed side manner, but she certainly does know her stuff, from my experience.
It wasn't doctor Garg who reviewed me at my last appointment ,I agree with you she is very good and knows her stuff, I paid initially to see her privately because I was being fob off by my GP surgery. It was the specialist nurse after consultation with Dr wharin . Perhaps they were short staffed that day .My previous blood results for September 2023 were HC 45.7 hemoglobin 146 after 3 months of 90 peg and i was pleased the peg appeared to be working. It has since jumped up in October to HC 52.7 and hemoglobin 169 in 6 weeks .I was advised to up the peg dose to 135 by Dr Wharin and told I didn't need a venesection. I only learned how high it was when the lab report arrived a week later . I had been for one venesection a month since may 2023 but didn't need one in September because they said my bloods were stable .
The 135 dose was advised to be taken every 2 weeks and a 90 dose taken on the other weeks until my next review.
I must say the 135 dose made me feel poorly for about 4 days so I'm hoping my body will adjust to it eventually
Anyway I am happy that Dr Garg as referred me for an urgent venesection after contacting the hospital today
I had the same problem. My hematocrit didn’t respond to 45 and 90mcg weekly doses. HCT reached 52 after a couple of months. My haematologist didn’t want me to have a phlebotomy and just increased the dose to 135mcg. It started to slowly respond after a month at this dosage. I managed to get a HCT below 45 after a couple of months on 135mcg without any phlebotomy. This clinical management makes sense if your doctor made a thorough clinical assessment of your condition and your risk factors. Everybody is different !
Yes I find Dr Garg very good . The problem only arises when I am Called by other people who work under her .
I will be asking if I can be seen by her or Dr Quereshi in the future until I know my bloods are stable . My last review was with Dr Wharin and it was the specialist nurse who called me for my last review
I was once seen by Dr Wharrin who seems to work with Dr Garg and Dr Quereshi. Never been called by a nurse. I am seen/called monthly. Was on Peg but now on Jakavi due to Myelofibrosis. My dose kept changing on Pegasys and my Jakavi halved after 6 weeks due to anaemia. Had to queue for an hour to get to LRI car park last week to get the Jakavi script filled. They can deliver but sometimes this has taken 2 weeks and I only get scripts for 4 weeks. Very very thankful it’s free though.
Parking is horrific, I went there to pick up my pega, they prescribe 3 months as my numbers are stable, got there only issued a month worth, I live 30 miles away, I was livid. I have had calls from the specialist nurse and the pharmacist.. I'm lucky my 135 is keeping my numbers down. In the old days they would send me for a venesection if my hct was 0.453, that was annoying..
I have been called by the nurse twice in the last year . I'm not sure why Dr Wharrin didn't speak to me directly.
The hospital is better to collect scripts on a Sunday but they normally text me to say it is ready . I have been given quite a few injections at least 2 months worth so I don't know why they only give you 4 weeks supply
I was so symptomatic on Pegasys. Nausea (lost 28 Lbs) itching, sweats. I was on 90mg bi weekly in the end. I also has worsening psoriasis which can be a side effect of Pegasys. Dr wanted me to go on combined trial but sadly my kidney function wasn’t good enough.
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