Is anybody else taking Repatha?

Is there anyone here who is still taking Repatha? I am supposed to take my second dose today, but I don’t know if I can handle the side effects.

My face is breaking out with small welts. I can handle that thinking that maybe that will stop eventually. What I can’t deal with are the high glucose levels. Two nights waking up with rising blood sugars, giving a unit of insulin and it having no effect. Finally I manage to get my level down once it has reached 170 and I have given more insulin by injection and by inhaling insulin. This is extremely odd for me, since at night I stay pretty steady at 89-100. I went up to 170 again this morning and normally I just don’t do this. I usually am able to run a fairly flat line.

Also one of my lab tests result is low and it never has been before. I will ask my internist about that on Monday.

I love that my ldl is now very low, but really wonder if this is worth it. I already have neuropathy from a statin and I am afraid that Repatha might make it worse.

I really wanted this to work, and am terribly disappointed.

I don’t use it, but found website that has a nurse helpline.

Talk to a Repatha Ready ® Nurse*

Repatha Ready ® nurses are here to help. Do you have a question about Repatha® or need injection support? Call us. RepathaReady ® Nurse support is available in other languages, including Spanish.
Repatha Ready ® nurses are available 7 days a week by phone at 1-844-REPATHA (1-844-737-2842), 8 AM–11 PM ET.
](Contact Us | Repatha® (evolocumab))

Thanks MM1, that is so helpful. I will call them. At this point I am scared to take another injection.

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Are you doing the two weeks or once-a-month injections? If you are on the two-week plan, you may want to ask if the once-a-month plan could work better as your issues may be temporary soon after injection and then go away. I have no idea but it is at least worth the ask.

I am taking an injection every two weeks. I don’t know what it would be like taking a larger dose at one time.

I talked to a nurse who works for the company that makes Repatha, but she just repeated info that I had already read on their site. She assured me that there are people who have been taking Repatha since 2015.

I have been on Repatha for about 4 years now, and no side effects. If you developed welts on your face after the first dose, do not take the second dose until you speak to your physician! You may be allergic to one of the components and could have an anaphylactic reaction.
How soon after taking the Repatha did the welts appear? How soon did they disappear?
This is an issue that should be addressed with your doctor ASAP.
And, I am not a physcian -

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Thanks Mike. I am very happy to hear that you are doing well on Repatha. I too had read about welts on the face. I had been gardening the day I started on Repatha or the next day, so I am not positive that I wasn’t bitten. The welts looked nothing like the examples of welts that I saw on line. They lasted almost the entire time I was on Repatha though and went away when I stopped it. Normally I am not allergic to anything.

On the day I was supposed to take the second dose I decided not to take it. I was very disappointed. After paying closer attention to what people were saying about Repatha I discovered that it can cause nerve problems. After 60 + yrs of being a type 1, I had no diabetic neuropathy, but I did started having nerve problems after I took a statin. I hate it and would have been devastated if Repatha had made the neuropathy worse.

My biggest reason for stopping Repatha was that my glucose levels shot up and I didn’t want to take the amount of insulin I would have had to take to control them.

I sure did like the very low LDL, but I will have to be satisfied with an LDL of 68. My internist was looking at my past LDL numbers. Twelve yrs ago when I suddenly needed two heart stents my LDL was 216. I was on the Bernstein diet at the time. For me, LDL numbers really matter.

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LDL of 68? Wow!

This is my second period of taking Repatha – it did bring my LDL down quite a bit, but insurance didn’t think enough. After my bypass 2 years ago, doctors insisted on trying again, and right now I’m dealing with another insurance challenge. We’ll see how that goes.

I went off statins because of serious muscle problems. Got so I couldn’t walk the first time, and tries with other kinds, over the years, all eventually seemed to be starting that up again. The last time, with the smallest dose of lipitor cut in half, with CoQ10 along with and before hand, I hadn’t gotten the muscle issue, at least yet, but it seemed I was getting very insensitive to insulin. I had to increase dosage, exert myself with each bolus to make even that work. That’s when the doctor decided to try Repatha. I had been wondering if that happens a bit with the Repatha, for me, in the second week, but at least at this point, it doesn’t seem to continue, thank goodness.

To get an LDL of 68, I take a prescription dose of omegas, and Cholestoff, plus follow the Mastering Diabetes guidelines. I hope that you can continue to take Repatha. I really wish I could take it.

Lz, I am trying to answer your messages, but for some reason I can’t make it work today. I will try again in a little while. Now your messages have disappeared.

I saw on their website that the vial stopper/seal in natural rubber. That could be an allergic reaction to the rubber. Latex allergy is so common now that it’s rarely used.

Makes me wonder about the seals on Humalog and Novolog. I know some have reactions to one insulin over another.

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Thanks Luis, but I stopped taking Repatha, after the first injection. Too many side affects!

My story is similar to yours. I had an angioplasty in July last year. I was put on a low dose (5mg) of Rosuvastatin along with blood thinners. Recently, about two months ago, I started developing muscular pain in the left arm. My doctor then suggested I do a CKMB test which indicates whether muscular degeneration has taken place. It turned out to be positive with 6+ as my reading. She stopped my rosuvastatin thereafter and has put me on atvorstatin 5mg every alternate day. She said we will try this for a month and see if symptoms remain and if the lipid profile is fine. It’s just about 10 days into this treatment. My arm pain has not subsided much. She has suggested that I take Repatha if need be after 1 month. I would love to know how you are managing without statins and Repatha to keep your LDL in the low range. I have also bought the book “Mastering Diabetes”. Thanks if you can respond.