Hi all,
So I have had my routine hospital appointment this morning. I am on Peg interferon. I started on it at 65ml in August last year, my platelets have not come down at all, therefore in January we agreed for me to increase to 90ml to see how I go. Again nothing changed at all so Doc has said to increase to 135ml from today and will see me in a month to see how I’m doing.
My question being: has anyone found by increasing to 135ml they have suffered more or increased side effects? TIA
Side effects are dose-dependant. You may find that you have new side effects at 135 mcg. that you did not at a lower dose. Or you may not. If you had no adverse effects at 90 mcg then you may tolerate the increase without any problems.
Please do let us know how you get on.
haven’t tried 135 but my body didn’t like 90. Very happy on 65. My platelets took a long time to start coming down. It can be slow for some of us. They currently sit about 600 and are decreasing slowly. Hope to be in the 500’s next blood test. Haematologist wanted me to increase dose but we discussed it as I am happy to go slowly, quality of life and all that. Have you checked the shelf on your fridge is at the correct temperature? Mine was too cold at the bottom and made a big difference once I moved it to a 5 degree shelf.
I’ve been on Pegasys 135 for over 2 years. I didn’t notice any side effects.
I felt side effects increase at 135 as opposed to 90 but tolerated for a month or so. The good news for that was that it seemed to get it going for me and I haven’t had a phlebotomy since even with lower doses.
my first thoughts are that you’ve not been on Peg very long , and wonder if another dose increase is needed just yet. Fine if you can tolerate it but if not maybe just more time needed. I have heard DrMesa say that when starting 45 won’t do much to the MPN and 90 is needed to make much difference, and you haven’t been on 90 very long.
I don’t have inside on how long it can take for platelets to come down on Peg but for sure it can take up to 2 years for some to get complete control of reds and some at 180mcg.
Are your platelets high and is there some urgency to reduce them.
thanks for everyone’s input, fully appreciated.
Well I have only just put 2&2 together (even though my Heam doc didn’t yesterday when I asked) when I increased to 90mg two months ago I started getting red flushing in my face (at the time I was trying to see if it was due to high potassium I keep having) then when I was looking on effects of increase of interferon yesterday, the ‘flushing’ came up! (WHY DIDNT SHE KNOW THIS!)
I am still getting it now, therefore I reckon it isn’t actually suiting me on the increase….. therefore I will call them and explain
Thank you everyone
I’m close to the same situation, starting in July of last year with 45mcg moving to the current dose of 150mcg with 0 effect on my platelet count so far. I haven’t had any side effects with dose increases but everyone is different . The only thing I have changed is more water intake.
same here. My son is Taking 180 - no movement and now a mid week 135 shot added. It seems ALOT I hope it works soon
Hi
I started at 90 and after a few months I switched to 135 and a month later 180. The climb up brought my platelets down very quickly and eliminated the need for further phlebotomy. I was extremely pleased. I now still do 90 weekly as my bloodwork is in check for the most part.
I got a crazy itch from the meds that no antihistamine has helped with but I have been taking quercetin morning and night with some kind of oil for better absorption and it is helping greatly. Your body adjusts quickly to the higher dose and I felt so much better once my blood counts all returned to normal. 🍻
Hi, can you say what oil you take with quercetin please? I take 1 a day. Is there a reason you take 2? Many thanks
I take my tea or smoothie with either extra virgin oil or mct oil and in the evening with food or drink with some kind of fat. I am taking 250mg of quercetin twice a day.
The itchiness would start with just a rub on my skin and it spread across my body. Describing it as an itch is not accurate as it was a crazy histamine reaction that scratching doesn’t even touch. Bed sheets at night, pants on my legs etc would start the crazy reaction. It started after 2 months on pegasys and has subsided greatly. I tried everything over the counter with no success and eventually visited my local health store for some advice. I was also drinking nettle tea for a few moths a few times per day but no longer do that. It has lighten greatly and I am extremely greatful.
Quercetin should not be taken with HU.
My MPN specialist laughed and said many people have similar reactions and many are different. She was pleased the Quercetin was helping and had no problem with me taking it.
Daily recommended dose is 500mg. Each pill is 250mg so I take 1 in the morning and 1 in the evening and it works great in my case. 🙂. If you have crazy reaction I also found that a heating blanket works very well to calm the reaction also, especially at night time with the restless leg feeling. I stand all day at work.
P.S.I live in Canada so it is drier in winter.
Thank you so much for this information. I checked my Quercetin tablets and found I was only taking half a dose. I had never heard of MCT oil but I have looked it up and it sounds useful.
I started taking Quercetin during early days of Covid as friends recommended it. I didn't know it could provide relief from itching. After 18 years I still react to water. I get around it by having hot baths and I wrap up warm to reduce its intensity and duration. Having a shower sets off the itch and I avoid them. I think your idea of a heating blanket is a great idea so I might try a shower and use it afterwards. I have been on Interferon for about 16 years but low doses. I have stabilised on 45mg every 10 days for last 6 years. I keep HCT around 38. If it goes higher it goes up rapidly and I end of with a venesection. Thankfully and luckily I haven't had one for many years.
I think Hunter's recommendation of getting the advice of an expert who understands supplements is a great idea but the charges they make in the UK are exorbitant.
Thank you for your helpful information. It is much appreciated.
Hi again,
I understand the itch after the shower. I had that for many years before being diagnosed.
I haven’t showered in years. I enjoy hot hot baths with some epsom salts and love them, The itch has definitely decreased in power and length in the last month. I am also putting lotion and /or oil on my arms and legs often the keeper skin mosist this winter.
Not sure if it is one or the other or both but I am thrilled. I have only been on pegasys for just under 1 year.
I went from 45 to 90mcg and have been maintaining this dose for 5 weeks now. Platelets are in the 700,000's and we hope they go down a bit more. However I know this will take time. So far, no side effects. But if you are worried I would take the necessary steps to stay in control (somewhat). Taking Tylenol one hour before your injection, drinking A LOT of water and making your fitness and wellness a priority (i.e. get your body moving and consider meditation). Stress can play a factor and lets admit it, our stations can get stressful, but we can do our best to regulate it. Best of luck! You got this!
I found the side effects increased along with dosage. 15 months on peg platelets didn't budge. Been back on Hu since July and platelets have dropped, sadly my weight has shot up. I had lost the weight I gained first time on hu whilst taking peg...
I would definitely speak to MPN specialist for another opinion . Worked after first injection on myself with ET .
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