Apologies in advance for what may seem like a rather negative - and unsavoury - post but I would be grateful to learn of the experiences of other MPNers.
As some of you may have seen from my posts on threads started by other members of the forum, I have a long-standing leg ulcer and there was a worry that my chemotherapy treatment (Hydroxycarbamide/Hydroxyurea) may have contributed to the origin of this ulcer and inhibited its healing. Thus the decision was made to switch me to PEG-Interferon, at least for a while, to see if that would help the ulcer to heal.
So far I have had only 3 injections of the new treatment: those on 9 and 21 June were done by the nurses at the big hospital (patiently trying to encourage me towards injecting myself), the one on 28 June was done partly by my own hand (the syringe had been prepared for me) under supervision there. On 9 and 21 June a blood sample was taken and then the injection went ahead soon after. It seems that the immune system results of the latter blood test (white blood cells, neutrophils) must have given slight cause for concern, because on 28 June I had to provide a blood sample and wait until the relevant test results were known (about an hour later); only then was the decision made to give the next injection.
My dose is 90 micrograms and comes from a pre-filled syringe with a bright green plunger.
The most problematic side-effect for me to date has been violent/loose bowel movements (LBMs ... or LooBoMs ... ha ha ha! ... actually NOT funny at all as I have mild OCD and am hyper-fastidious ... please be understanding!). These seem to have got worse rather than better as time has gone on. Since 28 June I have twice met one of the "red traffic light" criteria: 4 or more LBMs in a 24-hour period. (The staff of the hospital gave me a cancer treatment record book with lists of red and amber criteria; if one meets a red criterion, or 2 ambers, one is told to telephone the haematology day unit/ward for advice.) As a result of one of these episodes I felt too ill - and was in any case too late - to attend my next scheduled appointment for a blood test and possible injection on 5 July. The latest position is that my specialist haematology nurse will 'phone early next week to see how I am getting on and plan the next steps.
I still don't know if these problems are a direct effect of the PEG-Interferon on the gut or arise because the medication has reduced my immune system to a sufficient extent that I am struggling to overcome an everyday gut infection. Either case would be worrying.
Has anyone else had a similar experience? What was done to alleviate the situation and how long did you take to recover normal bowel function? Was a dose reduction or re-spacing helpful? (I have been told that as the PEG-Interferon comes in pre-filled syringes, the only way to reduce the effective dose would be to have longer intervals between the injections. Perhaps my hospital does not use the variable-dose methods that other forum members have mentioned in other threads I have looked at.)
Thanks for reading all this way!
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JaK2ET
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Hi Jak2etI have ET and Jak2+ diagnosed 7 years ago and have been on treatment for the last 5 years - the first two on Hydroxycarbamide (Hydrea) and the last 3 years on Pegolated Interferon (Pegasys). I’m injecting 90 Mcg’s every three weeks and overall it’s been great with very good blood test results. I have found that randomly Pegasys does affect my bowel movements - but for me it’s that it binds me up. Its mainly in the week after injection and I just take an over the counter product to keep my BM’s happening. However there are some injection weeks where it doesn’t happen. So I’ve learnt to adapt to this side effect as looking holistically Pegasys is really good for me. Keeping up water intake each day is important as is the usual stuff like exercise and good nutrition. I do get other side effects such as increased fatigue in injection week and my tinnitus has got worse, but again for me Pegasys is a great drug worth staying with for as long as I can. I hope this helps.
I sympathise, having recently suffered a very nasty campylobacter infection. I wonder though if your problem might be caused by anxiety about doing the injection as you haven't yet been confident to do it alone. My bowels often react badly to anxiety.
As far as I know, Pegasys doesn't have a particularly detrimental effect on immunity and you have only had three doses. Good luck getting this sorted out.
I have not had that reaction on Pegasys; however; diarrhea is listed as a common reaction to Pegasys. online.epocrates.com/drugs/...
I did have a GI adverse effect (constipation) to hydroxyurea, which is known to compromise the intestinal endothelium. Unfortunately it is a truism that anything that is biologically active enough to help you can also hurt you. We each react differently to each of these meds. Sometimes dose titration can reduce or eliminate the adverse effects. I started on 45mcg of PEG and I am not experiencing any issues. This dose is clearly have a benefit and may (hopefully) be the dose I stay at.
Regarding the self-injections, they really are easy to do. The nurse who trained me did a great job first using a bit a "fake skin" she created using exam gloves stuffed into an exam glove. I then prepped a real syringe drawing saline from a vial and injected the saline into the fake belly roll. I could have done it more times, but it was so easy that I just immediately self-injected my first dose of PEG under supervision. There is more than one way to do a sub-cutaneous injection. I like the "pinch an inch" method. It work great for me.
Hi ,I am on aspirin and monthly venesections for Jak2 PRV. Oddly I have experienced LBM ++ over the last 6months,which even though intermittent ,is frequent enough now to be very inconvenient. My haematology consultant has suggested this may be due to other causes,and has advised me to book a colonoscopy etc.
I have very low sodium on the last few blood tests,which I suspect could be a result of the stomach upset.
I may be starting Peg next month,and was not fully aware about the stomach issues.
Yes I have Pegysus in prefixed syringes which means I have to expel what’s not needed. It is a waste but they don’t seem to make them under 90mcg in uk.
Hi I definitely have a bit of an upset tummy the day after my injection but it doesn’t effect my day to day life if that makes sense - I just need to go to the toilet more! I drink lots of water the day of my injection and day after to help. I definitely feel more anxiety and a bit low the day after my injection with a bit lethargy but by the next day I feel back to normal. I definitely prefer this treatment to hydroxicarbimide as that really upset my indigestion and got back acid reflux and a lot of muscle and joint pain but I know everyone is different. My white cells sometimes go a little bit lower after injection but bounce back and this seems happen once or twice a year only. The main thing is to keep talking to your consultant and letting them know how your feeling - side effects definitely have subsided the longer I have been on it and just expect the next day to feel a little bit different and off it but it doesn’t stop me doing what I need to in the day or look after my 2 kids. I hope you are ok and if you have any questions please let me know . take care
Hi Jak2et, I sympathise, I get same problem with LBMs, it's been advantageous being at home these days, as it doesn't bear thinking about if I'd been out and about for several of the occasions. I'm 9 months in on 90mg Pegasys every 2weeks, still happening, but less than at the beginning
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