Now that I've been on the Pegasys (45 mcg/ml) for 5 weeks I'm fighting two major side effects - itching and anxiety/restlessness and I'm wondering what others have learned.
1. Itching. Because itching (pruritis) is a common effect of PCV many patients think it's from the PCV. But the research literature is FILLED with reports of immunomodulating cytokines, e.g., interferons and interleukins, causing itching as a side effect of the drugs themselves. I only had minor itching before I started the Pegasys, but now it's a big problem. There are also lots of studies showing the the gabapentinoids - Pregabalin and Gabapentin - are effective to treat this. I've asked my hem/onc to prescribe some for a test. Has anyone else here tried any gabapentinoid for itching?
2. I feel restless, anxious, irritable, sometimes almost manic. Neuropsychiatric side effects are common with alpha-interferons, but usually at higher doses and longer durations than what I'm taking (ncbi.nlm.nih.gov/pmc/articl..., so I'm not sure it's actually caused by the Pegasys, instead of some pyschological factor like trying to come to terms with actually being on chemo for a disease that up til now I could manage with CBCs, low dose ASA and an occasional phlebotomy.
Has anyone else had any mood disturbances on Pegasys and did they get better or worse over time? What helped to manage them?
Thanks in advance.
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Pegasys seemed to dry out my skin at first. i got some relief from moisturizers. I did have severe itching the first month on Pegasys. I interpreted this as my blood counts going out of control after 10 weeks without HU. This has gradually subsided to the point where it is a nuisance which I don't fear.
I also experienced some impatience and irritability and this has gone away. My sleep is still different on the first two nights after my weekly injection. I wake up sooner in the morning.
I definitely suffer more from itching and dry skin since being on Pegasys (nearly 4 years now) for ET. I’ve managed to keep it under control by using hypo-allergenic toiletries, washing liquid etc and also plenty of moisturiser. When it gets more irritating (literally!) I use Cetirazine as an over the counter antihistamine, which helps too.
I had some issues with low mood, irritability etc after about a 2 years on Pegasys but it was difficult to assess if it was directly related. I stopped injections for a few months to see if it improved but that made no difference so my doctors concluded it probably wasn’t the Pegasys. I now take a low dose SSRI (Citalopram) which seems to help and have reduced some other sources of stress in my life, so hope to get off that medication before too long.
Only site itching and skin reaction at spot I injected during first 4 weeks. That was at 45 and 90 dosage. I am now on 180 for 8 weeks and for the past two weeks wake up a few times at night from sweating... Nothing I can't handle and too serious.
I’ve been on 90mcg Pegasys for more than three years now. The usual pruritis hasn’t changed much but I now have an eczema that is bothersome. It’s worst itching comes and goes. Oral meds did nothing. Elacon is helpful when areas are at their worst.
Yes I developed anxiety and depression. The latter the more troublesome. But after many months it has mostly cleared.
Being aware of anxiety and speaking to a counsellor has helped. But it does sneak up on me at times.
I’m on the same dosage as you are. About 10 months now for me. The itching for me comes only after showering. (I didn’t have any itching before the Peg so I am assuming it’s the cause.) For some reason it is a temperature thing for me. I believe people on this forum have discussed this before so maybe do a search. I find if I keep my temperature regulated after showering, it almost never happens. For example after a hot shower , I immediately get into a warm robe, (even though I’m here in Miami 🙄). Then I stay in the steamy post-shower environment while I do some grooming. After a few minutes, I can do whatever and am fine. For whatever reason, this works. ??
I remember reading on this site that some people chose to go under a warm duvet. Does your itching occur after showering? If so, perhaps this might work for you.
My hemo/oncologist told me to expect mood changes even on my low dosage. I am on an SSRI to combat but still get moody and irritable frankly. My poor family 😬.
My pruritus also only after water contact. I agree re avoiding temp changes which stimulates histamines. I try to keep as close to body temp as possible and limit duration to bare minimum.
In my experience the electric pin pricks correlate to WBC. Thanks to Peg my WBC currently 1.6 and itching minimal. It was 12 pre Peg and I used to get significant aqua pruritus plus random, non water related attacks.
I don’t get any itching thank goodness but have definitely noticed an increase in anxiety. I find it especially hard to sleep the first couple of nights after the injection (I take 135 mcg every 3 weeks). I feel very jittery - as if I’ve had far too much coffee. I sometimes also have this intense feeling of anxiety just as I’m dropping off to sleep which is really unpleasant. It does seem to have gotten worse over time even though I have decreased the dosage. I will mention it to my haematologist when I next see him in October as he did say to tell him if I experienced any change in mood.
I take less showers now that I know the itching is at its worst after the shower. I mostly blow dry and it results in less itching. After I get waxed by my estetician, I feel way less itching. I did thighs recently and they don't itch nearly as much, try it!
My onc agreed to the Gabapentin and I can report that it works for the itch!!!
The doses required make me sleepy but that's OK because my worst itch is after my evening shower just before going to bed. Lower doses seem to work for daytime itching caused by temperature changes.
To "sell" my onc on the suggestion I wrote up a paper referencing the published research on the itching caused by immunomodulating cytokines such as interferon and interleukins because itching is a common side effect of many of them, and referencing the research on gabapentinoids for controlling the itch. (BTW, there is a move afoot in the scientific community to classify some interferons as interleukins, e.g., interferon III is also called interleukin 28)
This topic is very technical, and I have a technical background but I know many people here don't. But for those who do, I'd like to write up the details for anyone who might want to convince their Dr's to try this. But I've tried posting links to published research in this forum before and it doesn't format them well. Is there any way on HealthUnlocked to post other document formats?
Currently I'm experimenting with different dosing and administration schedules. Gabapentin has some weird pharmacokinetics that make this tricky. I'm trying to find the minimum dose that does the trick.
Hi, how do you inject 45 μg/mL while it is in the form of pre-filled syringes of 180 μg/0.5 mL for one use? It cannot be used multiple times (lie, 4 time of 45 for 180).
The syringes I use are not pre-filled. I fill them to the appropriate dose myself from the vial, make sure I get the air bubbles out, and do a subcutaneous injection. I then discard the vial with its remaining content because you can't reuse it.
Pegasys made by Roche-Genethech is only Pre filled syringes of 180 mcg/0.5 mL. At lease here in Canada.
It's waste of so much expensive drug as well as likely harmful to environment. I couldn't find any documented instruction about what to do with leftover of that.
I’m in the UK - mine is also made by Roche and I’m on Peginterferon Alfa 2a ... comes as 135mcg/0.5ml. Agree it’s an expensive waste - mine goes down the sink (also wasn’t given any alternate way of losing what I’m not injecting)
Pharmacist at drug store in Canada said that. I've sent message to company, no response yet. The active ingredient of Pegasys must not be disposed in garbage, toilet, etc. Q is, what should be dome with that extra of 180 - 45 = 135 mcg Pegasys in 0.125 mL solution?
I'm in America so maybe we have different options. I agree it's a waste and also at least for me this is an expensive drug so I hate throwing out 3/4 of it every time I use it but there's no alternative.
I just throw out the vial with the leftover amount. I don't know what would be hazardous about it. Alpha interferon is a naturally occurring human protein used as a cytokine and polyethylene glycol (the 'peg' part) is used in everything from cosmetics to industrial applications, and you can also buy it over the counter as a laxative. In any case we're talking micrograms. The most hazardous part is the syringe which is a standard half inch 1 ml 27 gauge syringe and I dispose of that in a sharps container and take it to a drop-off when it becomes full.
BTW, here's a happy note. I stumbled across a set of in vivo animal studies from 2013, 2014 and 2015 in some of the research journals, which showed that pegylated alpha interferon (Pegasys) appears to be protective against the SARS and MERS coronaviruses! No results have been published on Covid-19 yet but I know they're trying it in combination with ribavirin for Covid-19 therapy.
Wow, everyone I know that uses Pegasys uses all their medicine, ie: 4 doses of 45mg or 2 doses of 90mg from one vial. Waste not want not. May be because atm we have to pay for it ourselves. They couldn't afford it otherwise.
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