Coincidence?

[lizzziep]

I was doing very well on peg interferon, which I started in July. I felt loads better than I had for a long time, with negligible side effect. However, the last few weeks I have been really tired and getting breathless after the slightest movement. I had my blood results on Tuesday, my haemoglobin had dropped like a stone to 69, my white count dropped from 5.10 to 3.6, RBC down to 2.29 from 3.27, RDW up to 22.6 from 20.6. Spleen enlarged too. Platelets ok at 280.

What has happened between my last blood count 6 weeks ago and now - I’ve had my covid and flu vaccines! So is that a coincidence?

Doctor has taken me off peg completely, and is recommending Rux (Jakafi) next month, going in for a blood transfusion tomorrow, so hopefully will feel better after that. Had EPO injections doubled to twice a week.

I’ve also got an appointment with Professor Harrison on 7th, so looking forward to that.

[hunter5582]

Given what you describe, the move to Ruxolitinib could make sense for treating MF with anemia. While ruxolitinib can have the same issue, perhaps your body will respond better to it. Hopefully, momelotinib will get approved in the near future and become available.

Dr. Harrison may have some other ideas to help better manage the current situation. Hope you are feeling better soon.

[EPguy]

What was your timing on the two shots (same day, x-weeks apart ...)?

You may have seen my posts on my adverse vaccine reaction. Yours does not overtly look like an autoimmune reaction, but it may be worth asking Dr about that and checking for those markers.

[JustKeepSw1mming]

Hi Lizziep,

Very sorry to hear you have been feeling poorly. I had a very similar reaction to interferon, but mine was from the very begginning. It got so bad that I had to stop it.

I have been off interferon for a few weeks now and have been better. However, I took my flu vaccin last week and ever since I get breathless again with the slightest movement. This seems a strange coincidence to me too.

Hope you will feel better soon and good luck with your appointment!

[Hopetohelp]

I had flu jab and felt a bit breathless in the following week. One week later had covid jab and a few days later a blood test. All figures dropped to the lowest ever been since diagnosed although they have steadily been decreasing whilst taking peg. Will see if they go up on next blood test once body has settled down after jabs. I noticed bloods dropped after I had covid but went up on next blood test. Hope you feel better soon and that it settles down

[EPguy in reply to Hopetohelp]

You bring up a very important detail, the timing of shots. Used to be just one flu shot and don't have to think about it. But with two or even three now being done in the Fall there is a shameful lack of guidance on the timing. I am suffering devastating consequences at least partly from this missing guidance, as you can see in my posts.

The open secret best I can tell is: vaccines should be done same day or at least two weeks apart. At one week the immune system is over taxed. Esp when on IFN, as I was, this effect can be enhanced. I also had a low point in my counts after these events, albeit delayed.

Be sure to monitor your condition over the coming weeks and months, If you get any sudden changes that might suggest an autoimmune reaction consider discussing with Dr a possible pause in the IFN. My reaction were right after and then two months after 2nd (flu) vax.

These are all very rare events, and very unlikely to happen, but my experience points to a need to be alert.

[Mrs_Average]

Wishing you lots of luck Lizzie and that your blood counts settle/ re-bound quickly