I was diagnosed with PV 4 years ago, at age 49. For the past 2 years I was taking Pegasys. Inflammation has been present for most of that time, and six months ago, it led to a diagnosis of Rheumatoid Arthritis. Because of this, I am currently being weened from my Pegasys, without another plan in place (yet). My question is...have others been down this same path? I thought that inflammation was just a piece of the MPN puzzle, so am very disappointed that Peg is thought to have contributed to both inflammation and RA. I absolutely LOVE my oncologist. She is a specialist, and is quite knowledgeable about our disease. I trust her completely. I guess I am just looking for reassurance from someone who has also hit this bump in the road. Any thoughts on another drug that will work as well as Peg did?
Inflammation increased by Peg?: I was diagnosed... - MPN Voice
Inflammation increased by Peg?
Sorry to hear this, you must be devastated, as if one debilitating condition isn’t enough to deal with.
I posted a question sometime back about the risk of developing autoimmune conditions whilst on Interferon, and if that happened would ceasing treatment halt the autoimmune condition. Does your Consultant think there’s a possibility of that? I hope so for your sake. Unfortunately, I didn’t get any answers to my post.
I generally advise younger people like yourself who need cytoreductive therapy to try Pegasys. However, as that is not an option for you anymore, you could always try hydrea. I take a low dose for ET and have never had a problem with it. That can be said for many of our forum members too.
Were you particularly symptomatic with your PV. Just wondering why you needed to start treatment so young ?
Mary
Thank you for your response, Mary. My doctor did not mention that the RA may cease once I am off of Pegasys. I will certainly ask that next week at my appointment. Regarding your question of why I began Peg in the first place, my numbers were consistently climbing, and I reached the point that medication was needed. My doctor prefers interferon, especially in people my age. She didn't want me on chemo for hopefully decades, and she also was encouraged by the potential of Pegasys creating remission. Peg did put me in a "hemotologically stable" state, and that makes it so frustrating that I had to quit taking it.
I’m sorry that I don’t have information that will help you because I’m not familiar with what is going on with you. I’m very new to this. Tomorrow I have an ultrasound to see if my high platelets may be secondary thrombocytosis. This is different than primary thrombocytosis as you know. I’m sure I’ll become more knowledgeable. As I learn the words about my own condition. I’m just starting the journey. My prayers and thoughts are with you.
Hi Clevemic,
Sorry that you have developed RA and that Pegasys may have contributed to this. I have ET and am Jak2 negative. I have had a similar experience. For a number of years doctors have thought that I may have an autoimmune disorder (Behcet's), but I didn't quite "tick all the boxes" for a completely certain diagnosis. Recently I was in the process of changing from Hydroxyurea to Interferon, but I suffered a flare up of the autoimmune disorder after being on interferon for about 5 weeks. I had to be taken off the interferon right away as my eyes became inflamed, and I had really bad mouth and throat ulcers and urinary tract inflammation. I was put on a course of steroids to get rid of the inflammation, and these were very effective. My rheumatologist and haematologist both agree that I cannot go back on interferon again because of the risk of another flare up, so my only option in my part of the world is Hydroxyurea. I seem to be able to tolerate a low dose of Hydroxyurea, but I have a lot of problems with mouth ulcers if the dosage is increased. Happily, this is not common, and most people tolerate Hydroxyurea quite well.
It is a frustrating time for you, and an anxious one, I hope that your specialist is able to work something out for you.
All the Best,
Peter
washingtonpost.com/lifestyl...
This is an interesting article. IMO all MPN patients should focus on anti inflammatory diet (I think this is becoming increasingly mainstream thinking) and probiotics/gut health might be the next big card to fall. And of course every agrees on the re importance of exercise.
I’m on Pegasys, been as high as 120mcg weekly but CRP never been above 0.3. And no side effects.
I’m convinced anti inflammatory diet and exercise the way to go......
Does anyone here have low CRP and Pegasys side effects?
I developed severe muscle, joint, bone pain and flu-like symptoms on Pegasys (45-90 ug every 2-3 weeks). Strangely, my CRP always remained normal at <1. I’m now on Jakavi (Ruxolitinib) but had Peg twice in addition to help to reduce platelets and what’s amazing is that Jakavi minimised Peg side effects.
I am interested to know why some people are put straight on to Pegasus and interferon whilst others are put on to Hydroxy, which I believe is usually the first drug prescribed for PV. I was put on PV straight a after diagnosis and have tolerated the side effects really well. I was rather disturbed to read about the possibility of developing RA if I had to change to either of the above. My platelet count has been slowly dropping so there may be a chance I have to change over.
I was referred to a rheumatoid doctor recently and have an MRI scheduled this morning. I am not on any meds, and of course, do not believe it has anything to do with ET. But, just thought I would share.
Unfortunately autoimmune disorders can happen with Pegasys. Sorry to hear you have had this reaction. It sounds like you have a great MPN doc who can advise you on this. I would expect they will be looking at the JAK inhibitors. They are used to treat both RA and MPNs. Hope you get this sorted out soon.
All the best
The connection between MPN and RA is well established, but not the connection between RA and INF. In other words, one could get RA with any other drug or without any treatment. I would ask for a second opinion. Besides, some drugs for RA are also used to relieve the symptoms of PV, eg methotrexate. That’s why personally I wouldn’t stop Pegasys at this stage.
Sorry to hear this. I have ET on Pegasys. Previously on Hydrea. Also have prostate cancer. However you may not be alone with your terribly situation. I have noticed immflamation in my abdomen. Suspecting a possible underlying bowel disorder. I had searching to find out if existing autoimmune disorders can flare up on Pegasys. And upon searching I found your entry .
Have you discussed Hydrea with your haematologist./ oncologist.? I will ask around for other possible treatments for PV.
Hi there clevemic, I hope you are well. I was wondering how you are getting on? I have found myself in a similar situation to yourself and after 8 months of suffering Interferon treatment seem to have developed RA. I'm in a lot of pain and now stopped and waiting for it to leave my system.
I came across this old post. I see you are off all MPN meds. How are you doing lately?
Some thoughts:
As Hunter noted a Jak inhibitor my help. In this thread Lab-Rat found relief adding Jakafi. This article supports the idea.
<<Adding ruxolitinib to PEG-IFNa2 treatment may increase the efficacy and tolerability of PEG-IFNa2 by reducing inflammation>>
haematologica.org/article/v...
Another Member found at least temporary relief on PEG using the supplement N-AC, which is being investigated for MPN.
If you found some resolution by now, if so let us know. If we're lucky Ropeg will be approved this week and may be an option for you with lower side effects than PEG. Maybe worth discussing with your Dr along with the inflammation treatments.
Traveling with Peg ? 
Sarcoidosis Peg side effect?
Peg, interferon
Did the Cork forum really say that peg doesn't work for 20% of people?
