I have only had 2 injections so far and experiencing frequent bowel cramps. I was kinda, expecting this as I do have some bouts of IBS following associated problems from stage 4 endometriosis. This was found and treated 10 years ago, after many years of suffering. As a result, I experience IBS and, it was recently noted on a CT scan that I have nodules/ a diverticular disease.
Any tips to manage this would be appreciated. I am seeing my Consultant on Monday. However, I feel the forum will offer the best support, having a living experience of PV.
I am only on 45 dose, which I'm hoping to remain on, following advise from the forum - low and slow.
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Lyndjs
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Hi Lyndjs, sorry to hear this. I'm 11 injections in and will be sharing experiences soon. I only had one bout of what I'd describe as the worst stomach cramps ever experienced. I can't imagine having that multiple times. The attack came three days after injection one and lasted a full morning and was certainly concerning. My main take so far is that any pegasys symptoms have got easier and I'm happy I took the plunge. Hopefully, things will ease up for you. I was really sceptical about even taking dose two as the first week was awful but perseverance has worked to the good.
Thank you Crossefield , I was hoping it would improved over time. I think I'm finding it hard as it took me back to years of suffering, whilst searching for a diagnosis.
Please do keep in touch with updates and any tips you have 🙂 I am so happy things for you are improving, so good to hear and reassuring.
Hi there, I am new to peginterferon aswell,and am experiencing stomach cramps and acid and diarrhoea. That was on 45 and the dose was put up to 65 and things got worse. The doctor has allowed me to take 40mg every day of pantropazole for the acid, topped up with gaviscon, ginger tea etc. Things have improved. I still keep getting pain and discomfort but definitely not as bad.
Thank you Bridie123 . I am seeing my Consultant tomorrow so this will help me, if he tries to increase the dose. I used to have acid, I think from the aspirin but I now eat Parma Violets, in the evening and I don't have any problems now, a lucky by chance thing. My consultant said, it was because they are chalky sweets, so anything like Parmas, Lovehearts or Refreshers would help. I like the sound of Ginger Tea, I'm definitely going to try that,
Thank you for sharing your experience and tips. I really appreciate you taking the time to reply and help.
If you're in UK, most Asda stores sell them. I buy them by the box and so much cheaper in Asda. Large Parma violet tube - 25p each and £6.00 per box. Bargain. I hope they help you too x
Have you tried experimenting when you take it. I inject mornings now instead of night & works much better as at least your body is moving & functioning daytime rather than laid still in bed . No symptoms with injections now. I have been on it 15 months now . 45 monthly 👍 Julia
Thanks Exeter21 for your message. My consultant said it has to be mornings, so I have been taking it early. I'm on 45 weekly but have a review today. I think he wants to increase my dose, so it's reassuring to know it can go lower and less frequent.
Great to hear you've no side effects now,it gives us newbies hope.
Yes I started on 45 weekly but felt horrendous hence now monthly & platelets on 360 for now . It’s been very good but only once doseage correct for your body to cope as I now have no side effects from it . Good luck if problems speak to MPN expert they reduced my dose 👍
There is a medication called Bentyl generic-ally, it's Dicyclomine [or alternatively Dicycloverine , which is approved [in the US anyway] for GI cramping from IBS.
If it's available where you reside, you might find it helpful.
There is also a combination medication called Donnatal [it contains hyoscyamine, atropine, scopolamine and phenobarbital). which works well, but is considered a controlled medication in some areas [likely due to the last ingredient].
It can be quite a bit more effective, but still has minimal side-effects when used apropos.
Saw consultant today, he had wanted to increase my dose to 90/ doubled. My platelets have increased to 860 but due to side effects the team will discuss.
I only had my 3rd injection, this morning so feel it's very early to increase it.
Had to have blood pressure checks, sitting and standing, both high and ECG too. Should hear tomorrow, outcome.
Really appreciate your help with side effects, I'm off to Google now to see if they're available in UK
You may want to ask your primary care doctor if it could be SIBO, small intestine bacteria overgrowth. I believe I had a mild case of it 10 years ago when I first found my platelets were high. Abdominal pain became almost unbearable during treatment (with anagrelide) for 2 years. Then Pegasys made it hurt just as bad but only for the day of and day after injection. On HU now and pain is slowly beginning to improve but only if I follow fodmap diet. May not be your issue but worth considering.
I do have a diverticular disease/ nodules on my bowel. Haematologist said, it was side effects and should improve but I'll definitely ask about this, when I speak to them in january. Thank you.
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