Saw new haematologist in Toulouse ( France)last week. After long discussion doctor’s advice was that I stop taking Pegasys. A decision I think I’d already realised I needed to take. I tolerated the drug well for 6-7 months, but for the last 4-5 months the side effects have been getting progressively worse. I’ve been so dizzy and disoriented that I couldn’t walk in a straight line, my mood getting low and anxiety levels rising rapidly. For a normally laid back guy this has been a new and very unpleasant experience!
I have just started on Hydrea and have to admit I’m still feeling anxious. I’ve not had any medication for last 3-4 weeks and have been feeling much better so am hoping for limited side effects. Am only taking 500mg once daily because despite the down sides to Pegasys it did keep my blood levels stable. For people starting to take Pegasys please be aware that it’s side effects can develop several months down the line, so be vigilant. Stay safe and well.
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sorry to hear of your experiences. I notice a dizziness and blurry vision sometimes with pegasys (i think thats the cause). Curious as to what dose you were on. thanks
Started on 45 every 2 weeks. Then increased to 90. Put back to 45 when side effects started. Felt a little better for a month or so but over next couple of months dizziness and anxiety came back with a vengeance. Doctor I saw is part of a MPN team at a very prestigious cancer hospital and research centre in Toulouse, she suggested that my case wasn’t one on its own, but that most of her patients who stopped Pegasys did so between 1-2 years after starting it. It is apparently the continuous use that causes the problems. She was very also very clear that many people suffer few or at least manageable side effects. Guess I’m one of the unlucky ones.
those symptoms seem tough. I have only been on for 4 months started 45/week then to 90/week. Mostly tolerating it but last week maybe feeling a bit more. Caught some glimpses of the mental effects - slight depression maybe. Obviously hard to tell cause and effect with all the stuff going on including an unclear baseline (my retirement and my new disease could be depressing me). Trying to adapt to it because of my need to limit red blood cell production - still seem to need phlebomies and my MPN doc saying it could take a year for pegasys to fully work. The "continuous use problem" is definitely a concern.
I'm sure your docs considered this, but any chance that besremi might help you tolerate it. From what I read, the interferon side effects improved with better time release and it seems that besremi has improved from pegasys.
I discussed Besremi with doctor because it is licensed in France. In her opinion it’s still fundamentally the same drug as Pegasys so similar side effects are still experienced. Also it can be difficult get reliable supplies. It is also extremely expensive and therefore at the minute any possible benefits are outweighed by the negatives. I think only time will tell on this point. I hope your treatment goes well.
Interesting you are being treated in Toulouse,there is another person on the site who also is treated in a Toulouse Cancer Hospital.Iam currently also going to another hospital in Toulouse ,had surgery for a carcinoma...For my P V I am at a hospital in Agen,satisfied with consultant & my local G P ....but the cancer hospital Toulouse I have been told is excellent.
I was changed from Hydrea to Jakavi immediately I was very poorly with the former. Was given the option of Peg but decided on J as had been to an M P N Forum & heard Dr Mesa talking about J as the new drug then,a few years ago now.Hope H works for you ,I was on it for nearly 10 yrs,nearly 3 on J ?
Sorry to hear you had problems tolerating the Pegasys. I hope you find Hydrea (HU) easier to tolerate. We are each different in how we respond to the meds. Individualized treatment really is critical to MPN care.
HU does have some special handling requirements. Here are the links to that info (which patients are not always given).
It is certainly understandable to have some anxiety starting a new med. It sounds like you are already aware of the potential for medication side effects and will be watchful. Hopefully you will be one of those who can benefit from HU with few or no adverse effects, If the HU does not work, there are still other options such as Jakafi and anagrelide. Please do have confidence that you will find the right approach.
Wishing you all the best in this next stage of your MPN journey.
Sorry thé meds give you so much side effects.That is thé reason I have to stick tonHydrea. Mostly when I have meds they do not work. But I have thé side effects.
Good luck. I’m on Hydroxy and have been for about 6years. I tolerate it well. It’s the best option as the others cause more risk of problems with heart. Hydroxy seems the first option here in Devon. I lived in France 8 years ago in the lot et Garonne, glad I’m back home now though. We were there 8years.
Hi Haze Blue ,Iremember you saying you could not tolerate the heat in Lot et Garonne....this year is more like an English summer ,not good for the loads of tourists & maison secondaires we have just now!! I just must say that Hydrea did work for me 9+ years but it then became toxic & I was very ill.Luckily for me my consultant was on the ball & I was put on Jakafi straight away. We all differ of course ,I hope HU continues to work for you.At the mo my blood counts are better than they ever have been,just hope it carries on a bit longer. Say Hello for me to Lovely Devon where I still have many friends.
. HU is always the first option as it's the cheapest in every country.Iknow
UK prescribes Jakafi now ,but I would have been a goner had I lived there at the time H U kicked me.Best of L et G Sunshine to you!! Sally😀
What dose Pegasys were you taking? Did you try to dial it down? I stopped taking Pegasys in April, after getting Covid, end of March. Just got new labs yesterday and my oncologist and I were surprised how well my numbers are. I am still having trouble with my Long Covid recovery. I’m going continue my Peg break for 3 months, then reassess my labs.
Aaagg why stop peg because of Covid? I’m nervous now🥴. I’m isolating now with it. I’m also a new comer to Peg. What are your long Covid symptoms?I really really hope you do recover.
Oh my goodness wyebird, really sorry to hear this; presumably you’ve been vaccinated? Are you symptomatic?Hope you make a quick recovery. Sending the best of wishes your way. X
I was diagnosed Covid March 29 (my birthday). I remained home, thinking it wouldn’t be too bad the first10 days, but it was hell on earth! On day 11 I went to hospital by ambulance, I was in ICU for 7 days (I would not authorize being intubated). My lungs were shot, and dr recommended to not use the Peg, while I was being treated for respiratory distress. I was still using oxygen at home till end of May. Here it’s August and I’m still suffering tremors, debilitating fatigue, cognitive impairments, panic, increased anxiety and depression. I’ve lost 2/3 of my hair! All of these being s/s of long Covid.
I was taking so many meds at the time, I consulted my oncologist and we agreed I’d take a break, then check labs. Labs were so good I decided to continue the Peg break till my next labs.
I love Pegasys! When I need it again, I will resume it. I have been taking it weekly for 3 yrs.
I’m praying you have an easier time with Covid. The after effects can be daunting.
Doctors just don’t know what to do with long Covid patients.
Keep taking your Peg!!!
Lowest dose for long term is $$$recommended. Trust your gut and be your own best advocate!!!
I will not take any vaxx. Anyone who tells you it’s safe and works well, is wrong.
The medical community is paid to tell you what the current administration is telling them. Hospitals made more money, for Covid related admission, so they lied about deaths. What happened to the flu?
Hospitals/doctors only report covid, get it? $$$
School districts and universities don’t want to lose their Covid money, so they are demanding vaxx for admission. Just like the government taught them.
I know it’s scary to consider, we are going to go through some very rough times, but in the end, we will be so happy how all turned out!
Thank you for the info. I felt better in the afternoon of day 3 symptoms started day 1 me thinking it was a cold at their worst morning of day3 but nothing has changed since then. It’s day 7 now a tiny cough now and then ( approx 10 times in a day cough) still just want to lay down and doze. As fir info I’m in the UK - flu and gastro illnesses are way down in hospital admissions. I do wish you a speedy recovery .
I was on HU initially with no side affects but switched to Peg. No regrets doing this but it has been tough. I had strong shin pain for a few months, this eventually stopped. I also experienced flu symptoms usually 5/6 days after taking Peg. I am on 90 every fortnight. Before I started my haematologist wanted me to see a Psychiatrist as Peg can cause depression, anxiety and even suicidal thoughts in some people. You can be particularly vulnerable if you have a history of depression or anxiety. I have experienced mood changes these were particularly strong in the middle period between my injections. I have an anxiety disorder which I have managed for years without meds but with CB therapy. However these mood feelings are chemically induced by Peg so I now take a low dose of anti- depressant and it seems to really help. I am hoping I can stick with Peg
I’m on 90 every fortnight. Your suggestion for 45 weekly sounds like a really good idea. Maybe it’s cost that drives it. Every week means double the drug as to my knowledge 45 isn’t measured.
The vials that come in 180mcg are intended for single use. (I checked with my pharmacist). There is no preservative in the vials. Once the seal is punctured, the supply is potentially contaminated. It is intended that the excess should be thrown away.
I am on the 45mcg weekly dose. Since I use the vials and prep my own syringes I just prep the syringe with the correct amount. The excess is discarded as the vials are single-use only. The prefilled syringes are the same way. You just discard the excess. 180mcg is the standard dose for hepatitis, which is the FDA approved use for Pegasys. That is why the vials and syringes come that way. It is a bit wasteful, but it is not cost effective for the manufacturer to prep doses in lower amounts. From a patient perspective, I would pay $100/month regardless of the dose for Pegasys. That is how the system works, I would say to go with the dose that is right for you. That is what matters the most.
Many of us on Pegasys cannot afford to throw away 3 doses per week. If you use proper sterile technique, return vial to original box and refrigerate, you are likely to be just fine.I guess having been a nurse, I try to be more practical.
The FDA wants you to throw meds away, in $pite of it not being nece$$ary.
Good thing we are allowed to make our own choices 🤙🏼
Individual choice is the key issue. Fortunately we have that freedom. I hope that when Besremi gets approved, it will come in doses set for people with MPNs since that will be its intended purpose. We can only hope.
I built up Peg doses gradually, from 45, 60, to 90 over 6 months.My understanding is to maintain the lowest dose tolerated, long term. My sweet spot is 60.
Sorry to hear about the issues with Pegasys..and best of luck with the HU!
I was about to pen a similar post but entitled "Leaving Hydroxyurea". I have ET Jak2+ and have been on HU now for about 5 months. We have been ratcheting up the dosage to better control my platelet count. Starting at 500mg/day had no issues and it did initially drop the platelets from 1.400 to mid 900's, but as we have continued to increase the dose, now at 1,500 mg/day, I have started to experience some unpleasant side effects. The major ones include a rash and itching on my arms that is so bad that even with antihistamines; anti-inflammatories and prescribed lotion/cream, I cannot get comfortable enough at night to get a good night's sleep. Fatigue, but honestly don't know if it is the drug or a side effect of the itching side effect and lack of solid sleep; nail discoloration (on all my nails on both hands); breathlessness when exercising (never happened before) and weight gain (but could be side effect of the breathlessness side effect which has begun to limit my ability to work out as intensively during my cardio)...
Even with all of this, if the medicine at the current dose had achieved it's goal I would have probably soldiered through for a little while longer to see if the SE moderated over time...unfortunately while the HU is very successfully dropping all my blood counts (Hematocrit and Hemoglobin, which have always been in the normal range, are now both lower than normal), my platelets, after initially dropping, have remained stubbornly at the mid 700s even after two months at 1,500mg daily.
My MPN specialist advanced my scheduled meeting by about three weeks to discuss things. He went through the blood results over time and basically agreed that unfortunately the HU wasn't yet performing as he had hoped. He laid out the three options: 1) continue on HU - up the dosage and try to better manage the SE to see if we can get platelets in range; 2) switch to Pegasys; 3) switch to Anagrelide. He also had an interesting take on the different specialist centers around the world and their proclivity for any of the three...
At the end of the day he said that as one of his most knowledgeable and up to date patients he would leave the decision to me (he actually wrote out the recommendation with the last line blank). He did tell me that he had a slight preference, for ease of administering and approval for Anagrelide, but that he would support my choice...
It was a very empowering moment and really only possible thanks to so many of you on this site who have time and time again provided such excellent knowledge and resources!!
I chose to move to Pegasys. He has to get approval from the Health authorities and insurance but he has done it before and thinks it will not be a problem. Should start at my next appointment at end of month.
At the end of the day, as many on here have said, we are all individuals and our disease as well as how we respond to the various treatments will be just as individual. The really good news is that we actually have options these days to try and find the right combination for each of us.
Many thanks fir your experience on Peg. I’ve been on it about 2 months and feel good. Your post is valuable for armed is for warned. I do hope I can stay on it. So glad you are on a low hu dose. I do hope it continues.
Thanks for letting us know. Many of us use the information from others on this site to help manage our treatment. I get information that I don't get anywhere else. I have done the opposite to you - I started on HU and moved to Pegasys. I felt great on HU (so don't be anxious about trying it) and it got my bloods mostly in the normal range. However then the platelets started to oscillate from very low it very high and it was considered I was intolerant (this is very unusual, but a known side effect). So I went on to Pegasys. I have a lot of fatigue and chest tightness, and I get dizzy and noticeably clumsy for a couple of days, but am persevering. So I found your post interesting and useful. All the best and I hope HU works well for you.
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