I would like to thank everyone who shared their personal experience/ helped me to make my decision on treatment. I have chosen to try peginterferon and now have my pre assessment on Monday. I am starting to make a list of question based on everyone's comments and the articles shared but would appreciate any questions/ thought from you too. I do feel more informed, from your support and I would like to go in prepared.
Peginterferon pre assessment : I would like to... - MPN Voice
Peginterferon pre assessment
Many of the questions would just be the standard questions we ask about any medication. I expect you already know some of this.
Cautions and contraindications - do you have any?
Risks/adverse effects - what to call about right away if it occurs?
Intended benefit - what is the treatment target and how long is it likely to take to achieve it? Discuss your preference for low and slow to avoid adverse effects or rapid titration to achieve the goal faster. Will you track the molecular response as an endpoint? Note - I have seen a reduction in JAK2 allele burden from 38% to 9%. I do believe it matters. Not all agree.
Handling instructions - how to store and transport the medication? Request training if you do no already know how to self inject. The injections are very easy to do. I can barely feel them.
First dose - It is suggested that the first dose be in an observed setting in the unlikely event of a severe reaction.
My experience with the interferons, Pegasys/Besremi) has been very positive. The IFNs have been easier to tolerate and more effective than any other treatment option I have tried. I have achieved a complete hematologic response on a low dose and am moving in the direction, hopefully, of a molecular remission. My quality of life has improved on the IF Ns. I feel better now than I did before starting on the IFNs.
Wishing you success as you move forward.