Pegasys issues

[Wewo01]

Hi everyone

previously I had told you that I was having Sjogrens symptoms while on Pegasys. I stopped it and saw a rheumatologist. She was very dismissive. She told me to just look up my own results on the portal and because she was convinced, without seeing any results that i do not have Sjogrens. She told me I have fibromyalgia and she doesn’t treat that so essentially she said good bye and have a nice life. 🙄

She said she did not know anything about interferon. My Sjogrens labs were negative. But I know that 30-40 % of people can have and not test positive. My ANA is elevated with speckled and homogenous patterns. My Sed Rate is 56.

I have been off of Peg for almost 4 weeks. My hem/onc Dr told me yesterday to restart the Pegasys to “re-challenge” it. I was just starting to feel a little better! Feeling more rested, less pain. I have autoimmune on both sides of my family. Paternal aunt with Sjogrens, paternal uncle with Lupus, paterna great grandfather with Rheumatoid. Maternal grandfather with MS.

Since February I have had 3 bouts of parotid swelling with discomfort. And 1 bout of peri orbital swelling with fever and redness. Those are symptoms of Sjogrens! I am quite disappointed with the rheumatologist. And a little disappointed in ky hem/onc Dr.

Thanks for listening to my concerns! Any advice is welcome!

Kim

[Wewo01]

I guess I am confused by my Dr wanting to “re-challenge” the Pegasys. I am going to follow Drs orders and start back on it, tonight. We shall see how it goes.

[hunter5582 in reply to Wewo01]

Re-challenge is the term used to describe restarting a medication to which the patient did not respond well the first time. Sometimes, re-challenge will work. Sometimes it does not. I would suggest immediate action if you see a spike in adverse effects when you start back on. Presumably you are starting at a low dose and titrating up from there.

it is not entirely clear why your doc did not consider a switch to Jakavi in this situation. Given your prior response and family history, it would seem to be a reasonable consideration.

I would suggest getting a second opinion from another rheumatologist; definitely, one with no association with the first doc you consulted with. Your concerns are reasonable and you should feel confident in whatever answers you are given.

Wishing you all the best as you move forward.

[Wewo01 in reply to hunter5582]

Hi Hunter,

I started back at 67micrograms and I feel the same adverse effects. Some of them, anyway. I am sure if I continue, I will be as debilitated as I was a month ago. I am not taking it, again.

I am looking into a new rheumatologist. I have messaged my local hem/onc that I cannot continue on Peg and we need to discuss Jakafi.

I also will be letting my MPN specialist know.

Thank you so much! The support and input from all of you here is a lifesaver! You all help to buoy my confidence and strength!

[hunter5582 in reply to Wewo01]

You are quite welcome You know your own body best. As the Captain of your Care Team, this is your call to make. Hope you get it all sorted quickly

[mhos61]

I think you have valid concerns.

I would recommend a second opinion from another rheumatologist. I would also seriously question the recommencement of interferon. You don’t want to unnecessarily poke a hornets nest when other medications are available. Maybe a discussion about Ruxolitinib is warranted.

Sjögrens is often a challenging condition to diagnose, as are other autoimmune conditions. They take time! However, elevated ESR/ANA combined with your family history and recent parotid swelling surely are ‘red flags’ to any any rheumatologist worth their weight. They should be ‘suspicious’ not dismissive!

Interestingly, research from Kings College London now suggests ‘Fibromyalgia is a disease of the immune system rather than the currently held view that it originates in the brain’. So, if your rheumatologist happened to be correct, it would contraindicate interferon therapy.

kcl.ac.uk/news/new-study-sh...

You know your body best, advocate strongly in your beliefs!

Best Wishes x

[Wewo01 in reply to mhos61]

Thank you so much for your reply! And for the link to the article!

I am looking for another Rheumatologist!

I did take it the Peg last night and can feel the negative effects this morning.

I had already asked my hem/onc Dr about Jakafi. I don’t know why he wanted to re-challenge the Peg. I am not taking it, again!

[Orangeboykitty]

My hematologist told me that Peg exacerbates autoimmune issues if you're susceptible to them (and with your family history it seems that you are). I came close to Celiac disease when on Peg, but I knew what was happening and stopped eating gluten.

[Wewo01 in reply to Orangeboykitty]

Thank you for your reply! I am glad you avoided Celiac issues. I am getting off the Peg.

[ainslie]

maybe also a good idea to get second opinion from expert Haem and most likely a better rheumatologist, I don’t know much about your non MPN issues but I would be a bit cautious about just retrying the Peg until you know a lot more about what’s going on and what direction to go in. It would be ideal if expert Haem and good rheumatologist could communicate with each other, I know that isn’t easy to achieve sometimes though.

[Wewo01 in reply to ainslie]

I am looking for another rheumatologist. It can be difficult to get your doctors to connect and collaborate!

[EPguy]

I'm not here much these days, messed up as ever (sort of) living day to day.

I have Autonomic Reflex Screen test for tomorrow, an obscure procedure that looks for certain neuro issues. Mine is trashed regardless of the result.

As I've posted with Sjo, IFN is "radioactive" for us. We take type 1. From my post before: "DO NOT TAKE THAT LAST DOSE"

I initially hoped I could resume IFN, maybe just 25 of Bes. But for us it's a lifetime ban. A remote idea is the Rux/IFN combo, but still likely no-go.

--

-"Type I IFN signature predominates in the peripheral blood of primary SS patients

-Type I and II IFN signatures were related to distinct SS clinical/serological phenotypes."

ncbi.nlm.nih.gov/pmc/articl...

--

Your Rheum should see this report. But I think IFN levels are rarely covered by insurance since they are not considered diagnostic. Seems they should be.

There are AutoImm therapies proposed specifically to reduce IFN in the body, so lighting that fire with more IFN gasoline seems a really bad idea.

Regarding Drs collaborating, always a good idea, but these AtoIumme/IFN/MPN/(& Vax for me) mess are too rare and varied for anyone to claim deep knowledge.

Sjogren's Dx I've read often takes years to get. I am "fortunate" that SS-a was high (all others in range) and sudden dry mouth sealed the deal. (Hi dose Glutathione triggered that). I think the Sjo Dx qualified me for the Neuro Stress test I'm getting. You could likely get a Dx with the lip biopsy. My Dr said it's redundant for me.

[Wewo01 in reply to EPguy]

Hi… I am sorry to hear you are experiencing difficulties. I am so grateful for your post. I took the IFN and it didn’t take long to start feeling the same reactions I had experienced. I messaged my hem/onc and told him I would not be taking anymore and to switch to Rux. I see him in a week. Still looking for a different Rheumatologist. So I am depending on my anti platelet medication, aspirin and phlebotomy, at this time.

Good luck with everything!