@1995victoria you can read papers on the topic and get the nuances of the work yourself there is some evidence that some patients with JAK mutation may see a reduction in the mutant JAK allele with interferon treatment. Some people have reported significant reductions in their JAK mutant allele levels, others less so or none. There is less evidence, but some, that it could work on one of the other mutant alleles. It is an interesting treatment option. You should talk to your hematologist.
@eloise999
Hi, just one little thing. It is very good perhaps that pegasys reduces the mutant JAK allele, but I would not like to contract a hepatitis B or C.
How involved is your PCP in your condition/medication? I don’t mean diagnosing but do they acknowledge your condition? Notice changes in your blood labs? Recommend things like vaccines based on the fact that you have ET?
I was diagnosed in February.
@eloise999
Hi, just one little thing. It is very good perhaps that pegasys reduces the mutant JAK allele, but I would not like to contract a hepatitis B or C.
Hi, in fact I did a mistake in lecture, excuse me. Hepatitis is not a side effect but the desease that pegasys heals. But there are a lot of other side effects. It is true that Hydrea can have also many, but the truth is that I fear the injections. Best regards.
@janemc Honestly since now no one has mentioned vaccines specifically in our situation. Do you have some basic recommendations which kind of vaccines are necessary?
@janemc Honestly since now no one has mentioned vaccines specifically in our situation. Do you have some basic recommendations which kind of vaccines are necessary?
I'll tell you what works for me . . . it's always best to consult with your own oncologist to learn what is best for you.
For me, annual vaccinations against flu and Covid are a priority, as most of my neighbors in this remote, mountainous part of Virginia are vaccine-skeptics. Also factoring in is my age (71 years).
Those of us who are treating our ET with HU (hydroxyurea) should only have non-live vaccines, as HU does lower our immune response. As far as I know, all Covid vaccines are non-live. Some forms of flu inoculations -- such as the nasal spray -- are live and must be avoided.
Have you been in the habit of getting any annual vaccines, birgitr?
Connect
Connect
Like
Helpful
Hug
@eloise999
Hi, just one little thing. It is very good perhaps that pegasys reduces the mutant JAK allele, but I would not like to contract a hepatitis B or C.
@dewz13
I'd say 98% of us are the first patient with ET our PCPs has ever encountered. ET is so rare it's beyond their imagination.
birgitr is right. YOU must be your own advocate.
Your oncologist/hematologist should be able to counsel you on vaccines, maybe medications too.
@ebertolis boy. That is not a little thing. Why do you think your hepatitis risk is greater with interferon?
I think it because I have read the notice of the Pegasys on Internet. On this site: https://www.vidal.fr/medicaments/gammes/pegasys-22281.html (in French).
Hi, in fact I did a mistake in lecture, excuse me. Hepatitis is not a side effect but the desease that pegasys heals. But there are a lot of other side effects. It is true that Hydrea can have also many, but the truth is that I fear the injections. Best regards.
-
Like -
Helpful -
Hug
1 Reaction@kat260 until now no sideeffects. The shot was set 26 hours ago 🙏
-
Like -
Helpful -
Hug
1 Reaction@janemc Honestly since now no one has mentioned vaccines specifically in our situation. Do you have some basic recommendations which kind of vaccines are necessary?
@birgitr
I'll tell you what works for me . . . it's always best to consult with your own oncologist to learn what is best for you.
For me, annual vaccinations against flu and Covid are a priority, as most of my neighbors in this remote, mountainous part of Virginia are vaccine-skeptics. Also factoring in is my age (71 years).
Those of us who are treating our ET with HU (hydroxyurea) should only have non-live vaccines, as HU does lower our immune response. As far as I know, all Covid vaccines are non-live. Some forms of flu inoculations -- such as the nasal spray -- are live and must be avoided.
Have you been in the habit of getting any annual vaccines, birgitr?