First post here. I have had CLL for approximately six years and have been very fortunate to not need any treatment. Had my yearly check-in with my doctor yesterday and everything was still stable. I had my fifth covid shot and an antibody test I had about 8 months ago after three shots showed I did have some antibodies.
She is definite about me getting what she calls "the added protection" of EVUSHELD shots--two in each leg, as it was described to me by a nurse.
I am very hesitant to get it, particularly after reading today on this site about someone with a bad reaction. I am seeing that Evusheld is investigational as it is still being studied and that there have been a number of bad reactions.
Would love to hear responses here. I have another concern. My doctor was pretty adamant about me getting it and I am hesitant to go against her. I had recently been told by a gyn that I should get a hysterectomy and have so far refused that as there seems to be no clear reason to get one. When I told my CLL doctor that she said I should do whatever the GYN recommends. Do the people on here agree with that and always do what your doctor says you should do?
Written by
Greenon60
To view profiles and participate in discussions please or .
I had 4 shots of the vaccine, the most recent one in May. I also have Evusheld in June in preparation to a vacation I took to Florida in July. I had no reaction to Evusheld and minimal reaction to the Moderna shot in May. In terms of what our doctors recommend I found it interesting the Dr. Byrd at Ohio State (at that time) said he did not think the Shingrex shot was of any value and did not recommend it. He said he will not create sufficient antibodies in CLL patients. Since then, my new doc at Ohio State highly recomended the Shingrex shot. Guess we have to decide what is best for ourselves. Almost 5 years W and W.
I did receive Evusheld per my doctors request and didn’t have any side effects. I also had multiple Covid shots.
I would get a second opinion on hysterectomy especially since you feel there is no good reason. You have to feel comfortable with what your doctors are telling you to do. And you can question them. It’s your body.
IMO single instance of a "bad reaction" here, in a patient whose disease progression is radically different than yours, should not be a major contributor to your decision to get Evusheld or not. There is always, always, a risk with any medication. That's a given. What is recommended in the decision process, is that the "need for the med" be weighed against the "effect of refusing the med", with the medication side effect profile overall, plus other disease states/medications, in mind.
The information you have given here is not enough to weigh Pro or Con. Why is your doctor adamant about you needing the injections? Knowing *that* could be very important. While it's great you haven't needed treatment yet, I am wondering if there is "something" else going on in your overall health that is making the doc react this way. Or perhaps it's local Covid concerns; how seriously people in your city are taking Covid precautions, what your job exposure is, if you have children being exposed in school, and other factors. Any comorbidities or other factors that might make a case of Covid more severe in you, specifically, are likely contributing to your docs prescribing it.
Deciding whether or not to blindly accept what a doc wants to do is a highly personal decision. There is no right or wrong answer IMO, except the caveat that doctors are human and mistakes can be made, so one should have at least a small idea of what is being done and what to expect, so one can report if things don't seem to be going as planned. But ultimately it's doing what *you* are most comfortable with. You haven't said "why" the gyn thinks a hysterectomy is a good idea, so it's hard to comment. Just as you haven't said "why" your CLL doc is adamant about you getting Evusheld. IMO, the best outcomes are achieved by patients understanding at least the basics of their disease and treatments, and discussing things with their doc. If one is satisfied with their doc's overall knowledge/early explanations, one may be very comfortable just simply doing what the doc recommends, and just wanting to know "what to expect" so one can report if things aren't proceeding as planned. Others want more involvement, to weigh the pros & cons *with* their doc instead of the doc doing all the weighing. And if one doesn't agree overall with the docs treatment style, in the US at least, we can often choose another doc.
If you aren't yet seeing a CLL specialist yearly, IMO *that* doctor would probably have the best idea of what your risk/benefit might be, assuming no other major disease states.
I had the Evusheld, and I had no reaction. I am taking Venclexta, with very few side effects. I took ibrutinib, and had a number of severe side effects such that I had to stop the drug. Using your rationale, after having bad effects from the ibrutinib I would never had tried the others. So please consider investigating "why" the doc wants the Evusheld, and weigh those concerns about you specifically, against the known side effect/adverse reaction profile.
Did anybody check the antibodies level? Mine after 4 vaccines shots is less than 0.4 with a norm 200. I am still reluctant to Evusheld. I am on acalabrutinib for 2 years now.
Alas, those of us in the UK aren't going to find out any time soon. Apparently government has vetoed it for another 12 months. I don't know what justification it is using, but a lot of very unhappy people on twitter.
I too had Evusheld twice with no significant reaction.
One thing you should be aware of is the possibility that Evusheld and vaccine could interfere rather than reinforce each other's protective effect - this has not been properly investigated, but there is a theoretical risk, so at the very least you should leave an interval of several weeks between one and the other. Get the best opinions you can find on this issue, and IMO if in doubt leave it out. You can check your post vaccination antibody levels again, you probably have primed T-cells to mitigate a Covid infection, and should you be diagnosed with Covid (I'm assuming you are in the USA) you will be able to get early treatment with bebtelovimab/ paxlovid/ remdesivir - all of which should be more effective than Evusheld against omicron BA.5.
Hello Greenon60. I had the reaction to Evushield that you mentioned. I had the pain twice in about a 5 hour period. The first instance only lasted for about 15 or 20 minutes and the second instance lasted for about an hour and a half. I have been fine since that happened on Monday. I am a little concerned about getting Evushield again in six months, but feel that the benefit really outweighs the concern of experiencing the side affect again. If Evushield might help me avoid severe COVID then I am all for it.
I was rescheduled for Wednesday afternoon CST. My infusion center gives the injections needed to clarify that the federal gov was still subsidizing the shots and not billing insurance. They are still covered. Time is limited before Evusheld is being billed to our insurance providers.
Thanks to everyone who provided their previous experiences! It's so hard to find information on patient experiences with Evusheld. 💛
I'm day 2 after my Evusheld and have had no significant reactions. I have had a headache on/off and some joint pain but that could be my conditions and not Evusheld.
Having my injections at my infusion center and not a pharmacy made me more confortable.
Wishing you all the health in whichever decision you make!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Evusheld in the UK
Evusheld and sports 
