All These Rx’s For Our Issues In Here And My ET Seem To Have Bad Side Effects. Makes Sense As They’re Rx But Still, Some Gotta Be Better. | myMPNteam

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All These Rx’s For Our Issues In Here And My ET Seem To Have Bad Side Effects. Makes Sense As They’re Rx But Still, Some Gotta Be Better.
A myMPNteam Member asked a question 💭

What has least side effects?
I heard Pegasus Interferon but Googled that and it has some bad side effects also.

What about Jakifi? The others?

I’m stressed out as I already have big anxiety about taking meds and Rx.

But I (like all of us) will have to take something at some point.
I’m reading those who wait to treat with Rx generally end up with worsened progressed condition(s).

Seems it’s a game of Russian Rouette whether you take it or not.😰

posted February 25
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A myMPNteam Member

Each of the choices we have to treat MPNs comes with a risk/benefit profile. This includes the options to not treat or to stick with aspirin & monitor. While it is normal to feel fear regarding MPN management, It is important to make decisions objectively, not based on fear.

It helps to be clear in setting your treatment goals as well as your risk tolerance. We are each different in how we establish our treatment priorities. Each treatment option comes with intrinsic benefits as well as risks. Each choice has cautions and contraindications. Careful review of each option allows each person to make a decision based on which risks are worth taking to achieve the desired goals.

There are intrinsic risks to all options for managing MPNs. We each need to find our own way to manage our reaction to managing a MPN. I start every day with the Serenity Prayer and embrace the underlying philosophy. The underlying philosophy works for anyone, regardless of belief in a Higher Power.

GOD, grant me the
Serenity to accept the things I cannot change,
Courage to change the things I can, and the
Wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardship as the pathway to peace.

Taking, as He did, this sinful world as it is,
not as I would have it.

Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life, and supremely happy with Him forever in the next.

To answer your specific question about which medication has the least side effects, the answer is "it depends." It depends on your individual reaction to each medication. We are not the same. We have different medical profiles and different lists of cautions/contraindications. We also each react differently to each of the medications. Just because I responded much better to the interferons than to hydroxyurea does not mean that anyone else will react the same. There is no choice that is without risks. The question is ultimately about which risks make the most sense to take. It is important to remember that you can try a medication and see how you react. The vast majority adverse effects will stop if you stop taking the medication.

Wishing you all the best as you move forward.

posted February 25 (edited)
A myMPNteam Member

Yes. 100 years ago many of us would have died early on.

posted February 25
A myMPNteam Member

Side effects from medications vary from one person to the next, and your doctor is your best resource for which one is most suited to you and your specific illness.

It is important to remember that our MPN’s are a malignancy, and one that can kill us if untreated.

posted February 25
A myMPNteam Member

Hello,
I have been taking HU for about three weeks now. I have always been relatively healthy, not taking a lot of prescription medicines, and diagnosed with PV at 75. I don't think diet and supplements (alone) can defeat a cancer that seems to be caused by a genetic mutation, even though I wish it could be that way. So I take this drug and hope that I can tolerate it since it is cheap and effective for prolonging my life. Otherwise, I will just have to try some other drug. I do take Vitamin D, Turmeric, and the other supplements recommended by the article on this site. I am going to see a nutritionist and hope to be tested for any vitamin deficiencies though Kaiser doesn't run any tests it doesn't have to. Good luck with everything!
🙂

posted February 25 (edited)
A myMPNteam Member

Do I love taking HU? No.

Am I grateful that for decades an inexpensive drug has prolonged the lives of thousands of people with my diagnosis? Yes, profoundly grateful.

If you take the time to read all the stories here, I believe you will see that while serious side effects are a problem for a few, most of us tolerate HU well.

posted February 25

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