Update

[Graham7694]

Just a quick update as I have not posted on here in a while.

I have tried various treatments - Ruxolitinib, HU and a combination of both but nothing really touched my platelets but since going to the QE in Birmingham I have been taking Pegasys 45 Mcg weekly and have now achieved complete haematological response 😊

I haven't been feeling well with stomach issues but it turns out that this is unrelated and I have Diverticulitis so something else to deal with now but I am on the right road....

[mhos61]

Hi Graham

That’s really great news, I’m delighted for you, as I know you’ve had a rough time.

Pegasys certainly seems to get some great results for those who can tolerate it. You mentioned in your last post that it hadn’t been easy starting Pegasys. I’d be interested to know what side effects you experienced.

Mary

[Graham7694 in reply to mhos61]

Hi Mary

The Pegasys was a little hard to start but once your body becomes accustomed to it then I think it is far better than the other alternatives.

I inject once a week and always do it at night. I take a couple of paracetamol at 8.30 and inject at 9 and then go to bed at 10.

For the first few months I would have a bad night and then feel a bit flulike for a couple of days but now I am fine by the morning. I do have a restless night on injection night and suffer with concrete legs but I can live with that 😊

[Aneliv9]

Is complete hematological response like remission? Also do you have PV or MF?

[Graham7694 in reply to Aneliv9]

It means all my bloods are in the normal range. I was originally diagnosed with MF but following a second opinion and second BMB this was rediagnosed to ET

[Aneliv9 in reply to Graham7694]

I see. I also have ET but aspirin only

[Osteomyelio in reply to Aneliv9]

How are you doing on aspirin only?

[Aneliv9 in reply to Osteomyelio]

I am very well. I never had symptoms except mildly enlarged spleen. Platelets 380-530

[hunter5582]

Glad to hear that you are responding well. Many people seem to find peg-interferons preferable to other options. I am quite happy with my phlebotomy-only option for PV, but we are all different and all respond differently to treatment options.

If you are JAK2 positive, you might want to look into the role that the JAK2 mutation plays in inflammation. Systemic inflammation is not our friend! Having an excess of inflammatory cytokines does the body no good. I have also found that when I am experiencing significant GI inflammation, I also get reactive thrombocytosis - platelet levels really spike.

I think it is really important to work with docs who will look at your body as a whole system. Even "unrelated" conditions can impact each other. Everything is happening in one body so we do need to think about our health in an integrated systemic fashion.

All the best to you.