Currently taking 1500mg a day of Hydrea but platelets are still high. After years of consideration my Dr ordered low dose Interferon today (hoping my insurance approves it). I’m only 38 and there seems to be less long term side effects.
Anyone else taking this drug and approve? How did your body adjust the first two weeks?Wish me luck 🤞
I started Pegasys a year ago. 90 mcg/week. It was sort of a tough few months... I think it took me about 4 months to get into the groove with it. At first, I was really tired 48 hrs after injection, red splotches from the injection site and some days I just felt crummy. My joints ached a bit too.
After that initial period, I have never looked back. My energy has returned to pre-MPN levels, and I rarely have any real side effects now (maybe a bit tired a day after the shot... but it doesn't stop me from doing anything anymore). I even don't have red spots from injection anymore.
After a year, my blood numbers are finally in order. My blood improvements (platelets) were slow with Peg but it happened slowly but surely.
I think you may enjoy the break from taking daily pills. One weekly shot (it doesn't hurt, the needle is pretty small) and you're done.
Good luck with getting the insurance approval quickly and starting the Peg. Keep us posted.
Sounds like a dream! Thank you for the info 💕
And just a heads up - my insurance initially denied coverage b/c Pegasys is not FDA approved (it's used off-label) for MPNs. But my MPN doctor then submitted a bunch of paperwork to demonstrate the effectiveness of Pegasys and it was covered. My doc warned me of the initial denial by insurance was a certainty and that they go right back at them to appeal, then it works. Prior authorization it's called. Thought I'd give you a heads up if the initial insurance denies it to save you from the freak out I felt at first. The appeal was part of the standard process to get coverage for me. Good luck. I hope Pegasys helps get your blood in order quickly and you can get on with living your life!
Soooo helpful! Thank you!
Hi! Out of curiosity, did your numbers ever go up after improving? My numbers were going down steadily but after 5 weeks on Pegasys, they just jumped higher than before starting peg! I’m currently on 90 mcg.
It took 5 months for me to see ANY blood number improvements. It was a slow start to see change and in that time it jumped around a lot. I had one major jump in CBC after about a year on peg oddly. That happened after I started taking supplements (NAC, curcurmin, and other anti-inflammatory sups). I immediately stopped taking all supplements and numbers came back down to normal.
How big of a jump did you see? I'd say 5 weeks is pretty early to see any significant improvements but some people respond really quickly. We're all so different.
thank you. This is promising. My platelets went from 500s back up to high 700s. My hemocrat went from 44 up to 47.5!!
1500 of HU is a good sized dose. IFN is a great alternate option to try. Do you know what dose Dr plans to start?
I switched from HU to IFN (Besremi). At 9 months I can't say all is lovely. I've had symptom burden with any or no treatments. But I do prefer the discomforts of IFN over HU, esp since IFN can stop progression and reverse disease for some.
I do feel we should use the lowest IFN dose that gets our blood counts in range (CHR). Unfortunately my Dr has gone for more but we have found my max tolerated dose of 140mcg, (numbers for PEG are not the same, being lower for similar effects for example 45-90) The only period I felt ok for a few weeks was on 120, and I had CHR as low as 75.
Lesson is to discuss your dose carefully with Dr. You also will (should) be getting regular CMP test for liver, kidney etc. IFN can affect these counts. I've also been checked regularly by eye Dr, this can be a good idea with IFN as there are rare but serious risks with retinal troubles.
I had no trouble with insurance, but I have a good commercial plan and my Dx of PV matches the indication for Bes. We've seen here with Medicare it's not always as easy.
I was Hydroxy now Peg . However doseage is important to each individual we are different . They wanted to start on 90 & I refused as read starting dose should be low.
I was put on 45 weekly however blinding headaches made me stop after 4 weeks after I spoke to MPN expert. Now about to start on 45 again BUT monthly . The importance of MPN experts is essential when Haemotology are not that experienced in our complaint sometimes.
To me the Interferon is best option but like you took a little battle to get approved but here it’s funded in UK . 👍
Hi, I am in the process of transitioning from HU to Pegasys. It is managed very gradually. I was on 500 mg HU with haematocrit values starting to creep up (so doc would have increased the dose) when I started taking 45mcg Pegasys every two weeks. This was two months ago. After one month we cut the HU to five days per week. Values are in range. I had noticeable side effects after the first two doses, with 'flu-like symptoms about 30-48 hrs after injection (it is a slow releasing drug). From the third dose onwards these have subsided and practically disappeared. I believe that starting on a very low dose of Pegasys is the way to allow the body to adjust gradually. I hope you can soon look forward to making positive changes to your therapy.
very sensible decision that my Haemotology did not recognise despite me suggesting . Fortunately I got hold of Professor Harrison . Not sure where our hospitals are getting their directives on MPN management as some I have seen have no idea on doseage or even the amount of interferon . Because 90 is in syringe it took me a while to convince the Dr I only needed 45 to start on & response was It only comes in 90 🙈. Had to convince them I would waste 45 of the syringe then inject . Took some explaining . 😂
It didn't work for me, but at your age I would certainly give it ago. Long term if you get on with it the benefits far outweigh those of hu. Good luck. Take paracetamol before your injection, evening is best I found leaving the syringe out of fridge 10 mins before using reduced redness afterwards
Been on peg for over a year and a half. All good! It works slowly for some of us and quickly for others so don’t be disappointed if you don’t see immediate reduction in figures. Platelets may even go up slightly in first couple of months but stick it out. For some figures come down straight away. I started on 45mcg to get body used to it and moved upto 65mcg. I get no side effects after taking injection luckily. Drink loads of water. This really helps. If I don’t drink enough water I feel like I have a slight hangover next day after jab. We are all here to help so ask any questions you like and let us know how you get on. Oh yes and wishing you luck😂
Thank you!
brilliant 👍
hi you will start on a low dose and increase according to your needs.
On your first dose take and pack yourself off to bed with some paracetamol. You will feel poorly. Each jab the symptoms get less.
I love Peg!!!!
It’s given me a life.
Ps, I put an ice pack on my tummy before injecting. I feel nothing.
After switching from HU - I have been on Peg for about a year - on and off. I went from your same dose of 1,500mg/day (21 pills a week) to at first 180mcg/every 2 weeks of Peg (with a month off in between). I had no overt symptoms other than fatigue day of/after injection...We monitored all bloods including CMP - and found that while all my bloods came into normal limits immediately (which is definitely not always the case with Peg) - my liver was not happy with the aggressive starting dose and my AST and ALT readings went form normal to off the charts after about 3 months. We had to dial back the Peg (hence the on and off statement) and I went off completely for. 6 weeks to see if liver would calm down (it did) and we started back on half the original dose (so 90mcg/2 weeks).
It has taken us about 6 months of adjusting dose and timing to get to a point where my numbers look good (al WNL except platelets which are slightly raised at 550 but rending down) and my liver is back to normal. I am currently on 90 mcg/every 17-18 days. We are going to try and hold at this level for a year (if bloods stay good and liver behaves) and re-do the gene panel and BMB to see if the Peg has had an effect.
These days the only symptoms I have and not sure if associated with the Peg is once in a while get cramping in feet or hands - not major and not often but it wasn't there before (even with the ET).
HTH and good luck with the move to Peg!
I get leg/foot cramping on Bes. I had it plenty when I was young but not till IFN did it return. It can get severe but not long lasting. My MPN specialist said it's the IFN.
that’s really good information as I worried why my normal liver readings had risen after only 4 doses of 45 Peg 👍
My MPN specialist was not surprised and was willing to “wait things out” to see if the liver would “calm down” or adjust to the Peg - it seems to have gotten better although we had also decided that as long as the liver readings were not drastic we could “live” with a little liver sensitivity to stay on the Peg
I have been taking peg for 18 months now, 45mcg weekly. It worked really quick for me. All blood levels normal after about 7 months, they have stayed that way. The only side effect I have had is being really tired all the time, obviously everyone is different. I think being tired is a small price to pay though.
Good luck on your Peg journey
I ve been taking for around 3 years. Started on 90 weekly & now on 45 every 4 weeks. It works so well with my platelets which is why I now only have to take every 4 weeks.
Make sure you drink LOTS of water /squash 👍
Minor flu like symptoms but usually only last about 24hrs or so.
Sure you’ll be fine.
Let us know how it goes.
To reduce side effects of INF,- take the jab at night
- warm the tube with your palm for a while
- push slight the injection to remove the air inside the tube before shot
- shot at the belly with 45 degree
- have enough rest and take plenty of water
- you may need paracetamol incase of fever (ussually at the 1st to 3rd time)
- cross finger and pray your body well respond to the meds.
Wish you all the best
Hi.
I used to take 1500mg of hydroxy daily.
Last year I started taking 45mcg Pegasys weekly whilst slowly reducing my hydroxy intake. My platelets spike really quickly and Pegasys takes a while to have an effect.
Due to having radiotherapy a couple of months ago, I had to be taking off my remaining hydroxy as it clashes with the RT.
I now take 90mcg Pegasys weekly and my platelet count is the most stable it’s been for years. The side effects do take a while to get used to but it is definitely worth it.
Good luck.
Natasha xx
Hi Zeppelin,
I have been on peg interferon for several years now. Initially I had side effects after the injection, mainly felt tired and got flue like symptoms. Now I don’t notice anything. During the time I have been on peg, we have been able to lower the dosage and decreased the frequency of the injections whilst blood count is still under control. Sometimes this seems to happen, and that’s really nice if it does, as none of us wants to take more meds as really necessary. I always take my injection out of the fridge a few hours before the injection time, so it’s not cold anymore, and do the injection just before bedtime. Good luck, you’ll soon get used to it.
Give it time too it is slow working but effective. I suffered blinding migraines as side effects hence time between 45 dose lengthened in a hope my body adjusts to cope. 👍
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