Has anyone else experienced their WBC going up... - CLL Support

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Has anyone else experienced their WBC going up after starting the new capsules?

156MA019 profile image
14 Replies

I was doing great on the old capsules then was switched to the new capsules of Imbruvica, and my count went north after 2 months. Something is wrong they don't look the same and they aren't working like the originals did for me! Anyone experiencing this?

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156MA019 profile image
156MA019
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14 Replies
MartiP2009 profile image
MartiP2009

Now that you mention it, I was doing very well with the old capsules and after the switch things got bad until I relapsed and discontinued.

Lola69 profile image
Lola69 in reply to MartiP2009

My doctor wants nothing to do with the new capsules

Last year I enquired about them as I was kind of keen on the one tablet a day instead of 3 capsules but he just shook his head

What’s going on??

156MA019 profile image
156MA019 in reply to Lola69

I started with tablets in May of this year. Took them for 3 months and my count went up every month. Then he switched me to the capsules because the original capsules worked great. The new capsules which certainly are different, my count went up. I was on one capsule a day(the original), and my count was almost normal. Now, I am up and am on these new capsules. I am going in to see him soon and hopefully, we'll figure this mess out!!

Lola69 profile image
Lola69 in reply to 156MA019

Great!!

I will ask my doctor if I can reduce the dosage. Going on 3 years soon.

It truly is a miracle pill.

81ue profile image
81ue

What new capsules? I was on capsules and then on tablets and now I'm going back to capsules - how do you know they are NEW capsules ?

156MA019 profile image
156MA019 in reply to 81ue

when I say new capsules I'm talking about the capsules made in China and are smaller and different compared to the original capsules that were made in the USA! The China made capsules came out this year after a lot of people protested the tablets because of cost. They were a lot more money.

Eric_68 profile image
Eric_68 in reply to 156MA019

I hope there is a level (high level) of quality control for medication made in China.

The Chinese empty the shelves here buying up all the Australian made medications to send back to their families in China because they will not buy their locally made products.

This goes for Baby formulas also (Major Issue here in Australia being only a small population)

Don't mean to scare anyone using Chinese products, just make sure they are quality tested to Local standards.

81ue profile image
81ue in reply to 156MA019

Thank you - I checked my new bottle and it does say active ingredient made in China. I will watch this carefully.

AussieNeil profile image
AussieNeilAdministrator in reply to 156MA019

Ibrutinib production has always been China based to my knowledge...

Lola69 profile image
Lola69 in reply to AussieNeil

Thought was

Johnson & Johnson & Pharmacyclics

Ibrutinib was created by scientists at Celera Genomics as a tool compound for studying BTK function, then developed by Pharmacyclics up to Phase II, then partnered with Johnson & Johnson. Pharmacyclics was acquired by AbbVie in May 2015, and Abbvie projected global sales of US$1 billion in 2016 and $5 billion in 2020.

kathymac52 profile image
kathymac52 in reply to AussieNeil

This is true.....that is why when we had trade issues with China, I began to worry a bit.

RJR1 profile image
RJR1 in reply to 156MA019

All I remember about a new capsule was the single pill ( blister packed )proposed to replace taking 3 pills per day. And those were not going to reduce cost...are you saying a less expensive 140 mg pill is now on the market? Not that I'm going to jump to a Chinese pill. My most recent supply says nothing about origin being Chinese

Jm954 profile image
Jm954Administrator

You don't say where you're based but if you are in the UK and your Dr shares your concerns then you or they should report it via the yellow card scheme.

Here's the link

yellowcard.mhra.gov.uk/yell...

shoshanaz profile image
shoshanaz

What @jm954 said. Definitely report this to the FDA for follow-up. I would always be concerned not just for quality control, but for the possibility of counterfeit meds. You may also want to contact the insurance company, if one is involved, and advise them of the issue, as well as the pharmacy source for the medicine. If you want to take it a step further, report it to Abbvie. They will also have an interest. (I went through this at one point with a migraine med, took a couple of hours, but in the end I was permitted to get my drug sourced from the brand name, eventually going back to generic after the production source was changed.) I hope it is just temporary for you though, and there's not actually any issue with the capsules.

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