Can Pv and peg interferon cause issues with your immune system

[Dottiedot]

Morning

Wondered if anyone else has had issues with immune system since being diagnosed with an Mpn and being treated with peg interferon

I started on 45mcg of peg in Jan 2021 thus was increased to 90mcg in May 2021

In June I had a positive Ena profile and was diagnosed with Sjogrens syndrome - not currently on any medication for this

In November 2021 started having gastro problems biopsies were taken and they can't differentiate what is causing the problems despite increasingly severe inflammation was put on 4800mg of octasa per day for 90 days - this only dampened the symptoms down so was changed to pentasa the last 3 months my abdomen feels swollen and uncomfortable especially under my ribs on both the right and left side which is causing difficulty breathing

On recent blood tests I has a wbc of 3.8 and ALT of 103 reds are doing nicely and platelets have come down to 210.

Has anyone else experienced this and is it connected to the pv

Thank you

[rebeccalub]

Hi Dottiedot! Oddly enough, I was on Pegasys for 2 years many years ago. My ET is in remission since that time. But, I have been diagnosed with RA, but have the markers for Sjorgrens. I just had colonoscopy due to intestinal issues like you have described. I had been told years and years ago that once diagnosed in with an MPN would likely come up with some other disease so I wasn't surprised with the RA diagnosis. Good luck with your appointments. Inflammation is definitely a culprit so be sure to do what you can with diet and exercise, you will feel better.

[Dottiedot in reply to rebeccalub]

Hi Rebecca

Thank you for your response

Its really helpful to know that this is more than likely linked

I hope your not suffering with the RA I know that's very very painful

I'm waiting for an appointment with a rheumatologist will let you know what they say as may be helpful to you too in the future

Take care x

[hunter5582]

It sounds like there are a couple of things to sort out. PV is at the core an inflammatory disorder. We are prone to a host of secondary issues due to the systemic inflammation we experience as a result of deregulation of the JAK-STAT pathway. Pegasys is known to have the potential for autoimmune disorders and GI conditions like colitis. Sjogren's Syndrome is an autoimmune condition that can itself cause GI issues. I expect by now you know more about Sjogren's Syndrome than any of the rest of us.

The tricky thing to figure out is what is being caused by the PV, what is being caused by the PEG , and what is happening independent of either. We do sometimes have unrelated medical issues. In this case, I would be pretty suspicious regarding the PEG. That is not to say that PEG is the cause, but it seems a reasonable thing to consider.

I hope you have both a MPN Specialist (not a regular hematologist), an immunologist, and a gastroenterologist all working together on your treatment team. It works best if they all work within one healthcare organization, but the collaboration can occur if not. Know that no matter what you need to work as your own case manager to ensure that you receive holistic collaborative care. Ensuring that the information about what is going on is shared between the doctors is ultimately up to the patient.

I hope you get this all sorted out soon. Please do let us know what you learn as we can all benefit from your experience and knowledge.

[Dottiedot in reply to hunter5582]

Hi Hunter thank you for your response

I am currently being referred to Claire Harrison

I'm under the gastro team at my local hospital and haematology but they don't seem to speak to each other... I have a three monthly app with an IBD nurse who advised they need to do more investigation and I shouldn't still be feeling how I do after 6 months with not much improvement

My gp didn't refer me to a rheumatologist regarding the positive Sjogrens test in June last year.

Last week I called my haematologist chasing my referral to Guys which I requested the middle of March and promptly got a call back asking why I wanted to be referred and was I not happy with the care from my haematologist.

I explained everything which has been happening which is why I was requesting the referral as I feel Professer Harrison may well be the best person to deal with it and if all this is linked

My haematologist has referred me to a rheumatologist for the Sjogrens I was advised my gp should have done this last June when I was diagnosed.

I am crossing everything my referral to guys mpn team goes through quickly

Will keep you updated

[hunter5582]

The failure to collaborate, even within the same system, is all too common. That is why you have to be your own case manager. It is up to us to be sure the providers on our care team collaborate. I often choose to do this by being the conduit through which information is conveyed. I always insist on holistic care from all providers. I require that they stay aware of the rest of what is going on, even if it may not directly relate. I am assisted in this by my GP and my Integrative medicine doc.

It is likewise up to us to ensure that referrals happen in a timely fashion. We can never assume that it will be done for us without our involvement. It helps to set timeframes and the consistently follow up. That does not mean that we create an adversarial relationship, but does mean that providers are accountable for follow through. Providers are accountable to their patients first and the system they work in second.

I am looking forward to hearing what you learn. I suspect what you are experiencing is all linked. I am sure the providers at Guys will be able to help you sort this out.

[Kati365]

Hi Dottiedot, I was diagnosed with ET 5 years ago and when my platelets crept up to over 700 I was given Pegasys. When an effective dose was reached I started to have immense muscle and joint pains, was even taken to hospital by ambulance. Reading up on it I strongly suspected the interferon affected my immune system. I managed to convince prof Harrison’s team - excellent care from them btw - and they found my inflammation markers were through the roof. It was acknowledged that pegasys caused an autoimmune flare. I stopped pegasys, my markers dropped back to normal, fortunately did not develop an actual autoimmune disease. Currently Anagrelide keeps my platelets in check.

Interferon seems to work for many people but the link to autoimmune flare is there for some. Hope you find an agreeable line of treatment.

Best wishes,

Katalin

[Dottiedot in reply to Kati365]

Hi Katalin thank you for your reply its seems pegasys can do as much bad as well as good . X

[Moina-vdh]

Hi DottiedotI have PV and coeliac disease. They may or may not be connected. They were both diagnosed at the same time, so pegylated interferon had nothing to do with it, although I’m now on it. These are interesting questions, as blood and blood disorders can have a major impact on our bodies. Prof Harrison and her team are the best care you can find. Good luck. Xx