Interferon dose.

[conno61]

I started peg interferon on Jan 2nd this year. I seen a haemotologist, not the one that had prescribed it, on the 31st Jan. I was injecting 45mcg a week for them four weeks. My platelets showed no change so he immediately upped the dose to 90mcg a week. I was feeling fine on 45 but I'm experiencing a lot of side effects on 90. My question is was he right to immediately double the dose as everything I've read about Pegasys says go low and slow as it's a slow reacting drug which shows it's effectiveness over time. I was always told it's a marathon not a sprint, but these seem to think it should immediately show a rapid reduction in platelets.

[AndyT]

We’re all different and some of us seem to respond to Pegasys more quickly than others.

In my case I did 45mcg once, to see if I got any side effects (didn’t) and then straight up to 90mcg, which is often used as the standard dose to get counts under control. Some people go up to 135 or 180 if needed, so 90 isn’t a massive dose.

It seems logical that your haem tried the lowest dose first but has now increased it as you showed no response after a month on 45.

I stayed on 90mcg weekly till my counts were under control, then stretched intervals to 10, 14, 21, 28 days then reduced to 60mcg then 45mcg. I’ve been on Pegasys just over eight years, of which the last five and a half have been at 45mcg every 4 weeks.

Hopefully you’ll see a response soon and can then look to reduce the dosage/frequency once you’re in normal range.

[conno61 in reply to AndyT]

Thank you 👍🏻

[Mishie14 in reply to conno61]

you are right conno61. Slow, low and steady to adjust is wise advice. I am happy peginterferon is working for me after patience waiting. I was on weekly 45 from last year March to November then upped to weekly 68 since. Platelets down from 1.3M to current 800K and still going down. I have had nominal side effects and feel good most days. Day 2 after injection is usually when headache or nausea happened but that’s been infrequent since after the first month. We react differently. peginterferon is known to take a while for some of us. Jumping to increase the dose is likely trouble. Please take care. Good to listen to what your gut tells you.

[hunter5582]

It took me about 8 weeks to drop PLT from the 700s to the 400s at 45 mcg Pegasys. We are all different however. While I have responded well to the IFNs, I would never contend that these medications are without risks.

Regarding when you should increase your dose, the answer would require evaluating your level of risk and need for a rapid reduction. This would involve multiple factors including your history of thrombosis, hemorrhage, microvascular symptoms, and co-occurring conditions. There would also need to be a decision about what your goal for PLT level should be. This goal needs to be individualized based on your needs rather than simply trying to make the number "normal."

Different providers and patients have different levels of comfort with how long it takes to reach a treatment goal. Your risk tolerance is the determining factor in this decision. Note that your risk tolerance is not just about the thrombocytosis but also about the adverse effects the medications can create when treating the condition.

You are correct that many of us prefer the low and slow approach, treating treatment as a marathon. It is worth noting that dose titration does not have to be in 45mcg increments. One can increase or decrease the dose by halves (22.5mcg for PEG). I have used this approach for both Pegasys and Besremi. It works for me. You will have to decide what works for you.

Suggest that you engage in active shared decision making with your MPN care team. Set a clear goal that you both can support. Define what risks and adverse effects are acceptable to meet this goal. Decide what time frame is acceptable to meet your goal based on your treatment needs. Decide what dose titration increments make sense to you based on your preferred treatment approach. The best decisions will be made by working collaboratively with your MPN care team.

Wishing you all the best.

[conno61 in reply to hunter5582]

Thank you hunter I agree with everything you have said. I have had no thrombosis or any other factors prior to treatment. I felt fine on the 45 but the 90 has given me some bad side effects, so much so I've basically lost 3 days with having to stay in bed. I don't believe that they have a plan and they certainly haven't discussed one with me. They just seem to want and expect rapid results. I see them again in 3 weeks and I think I need to be more pro active with my needs as opposed to their expectations.Thank you for taking the time to reply, your input is valued by many in here as I've seen 👍🏻

[hunter5582 in reply to conno61]

The way I approach this is to go with a written agenda. the format looks like this.

Treatment goals

Define for your doctor what your priorities are. Can be very specific at times.

Treatment Approach

Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers about all the interventions you use.

Updates/Issues/Questions

Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment.

Treatment

Review all treatment options – let the doc know what you are doing now and seek input about what to do next. Ask about ALL options, not just the one the doc recommends. Ask the doctor why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your risk tolerance and what risks you prefer to take to achieve your treatment goals.

Wishing you all the best moving forward.

[monarch5000]

Hematologist's worry about potential legal liability if the patient suffers a blood clot. So they are in a rush to lower elevated counts which in turn causes them to rapidly escalate the doses of Pegasys.

I understood this at the time I started Pegasys so when my hematologist wanted me to double the dose from 45 to 90 I disobeyed him and did 65-70 mcg instead for 4 weeks and then only after my body was used to 65-70 did I try 90.

Over time my body became used to 90 well enough that I barely notice any side effects. Also, over time, (years) Pegasys got rid of my PV symptoms (night sweats, burning feet, red face, itching, fatigue, etc.).

[Franko21 in reply to monarch5000]

I did exactly the same tried 65 mcg for few weeks untill my body was ready for 90mcg which I’m still taking with no side effects plus platelets are good . I think you are right listen to your body and take it steady .

[Wyebird]

hi I’m really sorry you are feeling side effects but it is normal. I found they got less every injection. I’d be nauseas for at least two days after the jab I just used to take mine early evening knowing I needed to be kind to myself for a few days. It most probably took 6 months at least before the side effects went completely. I’m not medically trained. It’s early days and I’m sure they are monitoring you closely. I just think it’s important to tell them about your symptoms. I do hope they lessen over time.

[Hopetohelp]

they always seem in a rush to up the dose. I would suggest you express your views to your haematologist and see if there is any reason why you cannot take it slower. If the drug ruins your quality of life because dose is too high for you then I think it needs a rethink

[ainslie]

you have good answers already, if you have no urgent need to lower you counts, then go slow, one month is nothing in the bigger picture, I know of some patients who had to drop back to 22.5 mcg a month and very slowly build up from there. Most good docs know that. You could go back to 45 or less until you feel good again and increase by the smallest possible dose per week or every 2 to 3 weeks, whatever it takes. When I started Rux the normal start dose is 10 BID , I couldn’t tolerate that , tried 5, no good , tried 2.5 BID felt rough but doible, after 2 months on 2.5 I felt okay so started increasing the dose by 0.64mg every few weeks, it took a long time but eventually I got to 20mg+17.5mg , feel normal , no sides at all and doing very well. So if there is no urgency, take as long as it takes, it’s getting there eventually that counts. For the record I should mention my Rux expert said he has never heard of any patients having the issues I had increasing the dose of Rux, most just start at 10mg BID for PV and often 20mg BID for MF and have no issues. Peg and Rux are different of course but I mention it to illustrate the point.

[Edgewalk]

I'm on Interferon for red cells & my consultant wanted to do the same. After 4wks no improvement, he wanted to double, I refused & stated I wanted to give it more time. He reluctantly agreed. My next consultant phone call was with one of his team who was prepared to move from the 'party line'. He suggested trying 65mg, I agreed & have remained on that dose. The side effects are less than hydroxy although the same hair thinning as with Hydroxy. NHS medics appear to have a set programme that all patients are slotted into whether to their benefit or not. I had to suffer for a while on Hydroxy before he agreed to switch to Interferon. Finance plays a large part.

[conno61 in reply to Edgewalk]

I know peg interferon was a postcode lottery and I wasn't able to get it in Merseyside but you could in Cheshire. However since covid my consultant said that the price of interferon had dropped significantly and so they were now able to offer it. I think the NHS has a set programme when it comes to delivery. Unfortunately it doesn't take into account the patients tolerance.

[Exeter21]

Far too high at 90 weekly. Time you consult MPN as they are the experts . I did & was on 45 a week & felt awful . MPN took me off it for 6 weeks then 45 monthly . Takes a while for platelets to drop gradually but also your body has to adjust.

I feel great on the 45 monthly platelets hover around 400 & happy at that. It’s not a quick response which Haemotology get with Hydroxy but I feel it’s better than the HU I was on. 18 months on it now & happy on this dose. Julia . UK

[russkatt]

I started at 45, then 60, then, 75 and now 90 and it has been 7 months. Side effects are mainly fatigue and hair thinning. I am still having to get a phlebotomy every 2 months. My doctor told me that it can take 6 months to a year to fully start working.

[ainslie in reply to russkatt]

Some people 2 years, good luck

[DougyW]

I'm not going to advise you on your case but having done a lot of reading on this [started Peggy 2 weeks ago for PV] the general advice is low and slow. Typically you would go from 45 to 65 not 90.

[Mortysdad]

I am currently on 112mcg weekly and have my Hemoctrit and Hemoglobin in the mud (Along with my Leukocytes, Neutrophils and Lymphocutes also all being low) which causes severe anemia and fatigue, but I am there as my BMB a year ago detected not only the known Jak 2 mutation causing my ET, but another companion ASLX1 which has a poor prognosis across the MPN spectrum including its presence in most AML cases. The decision to stay at 112 was due in part to the fact that the Interferons have shown promise in some cases to disrupt the Jak 2 from progressing to other places like mFibrosis and others. So I am just trying to adjust to my new normal by trying to eat well, exercise when I have some energy, nap or at least rest when needed, stay engaged with my peeps in the recovery community, smell the roses (A truly rare sight in Arizona!), and above all, pray and be grateful for another beautiful day. As I good friend of mine used to tell me, the secret for living a long life: "In the morning when you wake up....get up!"

Appreciate you all and what we provide each other as we continue on this journey of hope!

[Mortysdad]

And forgot to add, my platelets were at 950 when I started, and are now hovering at 450, but my Hemo Dr says she is satisfied with where they are now. Cheers!

[Luthorville]

Why go on Pegasys when it's a weekly injection when you can do Besremi and do it every 2 weeks (and later hopefully monthly). Similar drug, just lasts longer. It seems it's the first couple of days that are the hardest so if the injection times can be spaced out, perhaps that might help improve quality of life?

[AndyT in reply to Luthorville]

We can’t get Besremi in the UK as it’s too expensive to get approved by the various health bodies. Pegasys does the same job for most patients and is much cheaper.

[ciye]

I took interferon for over a year and only increased the dose over time, 45, 60, 75 etc.. My platelets barely budged. I couldn't cope with the side effects of peg and reluctantly switched back to hu.

[Lilliegarden]

I had this issue too, consultant not happy that blood levels weren’t dropping fast enough & kept increasing the dose, despite my suffering awful side effects which effectively put my life on hold.

I too reduced the dosage I was administering back down to 60mcg & then 45mcg but the side effects persisted.

Consultant persisted in ignoring my concerns & treating me like a passenger in this journey so with the help of my specialist nurse put that consultant in the bin & got one that actually listened!

I did change from Peg to Hydroxy with some trepidation but the side effects stopped immediately for me once I changed meds & my levels are now within acceptable limits.

This was about 6 months ago, still makes me fume how I allowed myself to be treated!!

[conno61 in reply to Lilliegarden]

I too feel like I'm being treated as a passenger. I aim to change that. 👍🏻

[Lilliegarden in reply to conno61]

👏👏👏

[Crossefield]

I started on 45 last September. At four weeks my platelets were down slightly and my consultant would have gone to 90 had it not been for a bout of covid two weeks prior. At eight weeks my platelets were down by 200. I'm now at approx 6 months with all bloods normal and still on 45. Next check in a fortnight. In my case covid saved me from 90.... for now.

[conno61 in reply to Crossefield]

You might be able to go to 45 every 2 weeks if your platelets stay at normal level. That may be enough to control your levels. All the best 👍🏻

[DougyW]

Was wondering how it's going for you Conno. I've now had 4 injections and just had my FBC taken. After a gap of 8 weeks since my last venison my HCT was .43, it would previously been up at .47 - .48. My haematologist was happy and left me on 45per week.

I asked about ellel burden check again and had to really push to get agreement to measure this in a couple of months. Taking Hunters advice and advocating for myself has worked.

[conno61 in reply to DougyW]

I'm back at the hospital next Wednesday so I'll let you know 👍🏻

[RedCardRob]

Hi conno. Just came across this thread of conversation/information, for which i feel a lot more happier having read all the messages, so thanks all for the information.

I went for a regular chest check up last July 2023 and my BP was unsatisfactory and was recalled for another check. same result. My Doc then got involved put me on high blood pressure meds. However, he was curious (luckily) and sent me for further tests. He had noticed that a previous check 4 years ago i had high platelets and now were up 150 up to 750 and increasing.

Next thing is what i thought was a regular blood check at the hospital (Feb24) turned into a consultant explaining ET via the JAK2 mutation and what the next few months entailed. Needless to say i drove home in a kind of daze!

Almost 5 weeks later (now) I have had 4No. weekly injections of pegasys alfa-2a 45 and still giving blood samples weekly. Just been feeling more lethargic

I have phone call appointments coming up so am prepared (thanks to all) for what they may say, either continueing as or increasing dosage. So long as they dont want another bone marrow sample!

[conno61 in reply to RedCardRob]

Hi Rob thanks for replying. I got told I had ET in may 2016 then later that year was told I had kidney cancer obviously unrelated. It was a tough year but you go on. I too am feeling very lethargic on peg and everything seems to be an effort. Had the flu like symptoms too, but didn't have that on 45mcg. I'm back at the hospital on the 24th, hopefully the platelets will have reduced a little. Good luck on your journey.