What does remission look like?

[Mountainbiker12]

Had to stop Pegasys 4 months ago because of liver issues. This is after being on it 8 years. Since then my platelets have remained at around 550. Liver enzymes continue to drop. Could this possibly constitute remission?

[Manouche]

Hi Moutainbiker,

I suppose it can be called a remission. The good news is that interferon can be stopped for months or years. It can then be re -prescribed with the same results.

[EPguy]

Remission has been considered holding blood counts in range. At 550 it's above most ranges, although some Drs use 600 as a limit. More important is you're holding steady without the IFN. So even if not full "remission" it's stable and I assume your Dr is comfortable with that level.

More recently remission can also include holding low VAF; this is the allele burden or the % of cells that have the CALR (or Jak2 for example) mutation. IFNs like PEG can reduce this for some. Have you a prior test result for that? Either way you could start tracking this for added info as you hold off the IFN.

As Manouche says, some experts are ok with suspending IFN for extended periods, and the reports I recall say it's ok to restart if there is a reason to, maybe at a lower dose.

[monarch5000]

"Had to stop Pegasys" because "Liver enzymes continue to drop"? You mean dropped too low? First time I've heard that happening after years of using Pegasys.

I have heard of several cases where patients that suspended interferon for extended periods (1-4 years) ended up finding out their disease progressed (fibrosis increased & mutant allele burden increased) during that period and so they had to restart interferon at a higher dose than they used to take.

[Mountainbiker12 in reply to monarch5000]

Apologies for not being clear. I had to stop Pegasys because of very elevated liver enzymes. Those have continued to drop toward normal levels after discontinuing Pegasys. Platelets increased but not be much; not if it is just too early to tell or if it could be good news…

[Threelions in reply to Mountainbiker12]

Hi Mountainbiker,

Could I ask what your Liver Enzymes rose to ?

My team have expressed slight concern regarding mine (been on peg for a few years now) & just wondered what yours reached before you suspended useage.

Cheers,

[Mountainbiker12 in reply to Threelions]

Alk Phos 122; ALT 394; AST 275 - it was a month off Pegasys before they started dropping down noticeably.

[Threelions in reply to Mountainbiker12]

cheers, appreciated.

[Anag]

I know that HU and my Anagrelide are heavy for the liver. I’ve just switched to Besremi (the ropeginterferon alfa2b, which comes after Pegasus. 6 weeks ago. I’ll have bloods on Wednesday.

I have been doing everything possible to support my liver and all organic systems in my body. All meds cause nutrient deficiencies!! I try to find out how my meds affect my body (with the help of natural doctors) supplement what’s missing and try to work against the damage the med is causing.

The liver, kidneys and spleen need our support. I try to keep my liver working well drinking fresh squeezed lemon water daily, doing liver packs with castor oil, drinking a tbsp of organic artichoke concentrate at every meal for awhile, coffee enemas, eating bitters, taking milk thistle. I try to rotate treatments. I also do powerful homeopathic detox once in a while. This way I keep this hugely important organ in pretty good working shape. Please find doable ways of helping your liver!! 🙂