Repatha

Does anyone with ITP have any experiences with the drug Repatha. It is a new drug that works using one's auto-immune system to lower cholesterol. I was wondering if it A. destroys platelets and/or B. triggers the auto-immune system in such a manner as to have platelets destroyed. I was hoping to hear from ITP patients who are taking the drug as to their experiences or who have researched the drug regarding its impact on platelet destruction.

Thank you

Never heard of it I am kinda new to this site and to ITP. I have only been on one drug and that Dex boosted my platelets up to 9100. Now I have to have 3 tooth pulled and my count is 5300 so because this is all so new to me I am doing research on ITP.

So I am really hoping to learn a lot of information about ITP from this site and you all.

I hadn't heard of it, but I see that it's a statin used for high cholesterol. I haven't noticed anyone here talk about using it.

I have modified my original posting to make it clearer. Repatha is an anti cholesterol drug. It is a non-statin. Statin drugs destroy platelets; therefore they should not be take by ITP patients. Repatha works by affecting the auto-immune system and therefore may also be bad for patients with ITP. That is what I am trying to determine.

Ron

I've never heard of it either , have just looked it up on bnf ( have access via work) , Repatha seems to be UK spelling. It's expensive approx £680 a month. No indication of any side effects are given just advise not to to renal failure patients.

Oh, all I saw was cholesterol drug and assumed it was a statin. My thought is that all drugs have the potential to cause or trigger ITP and the only way to know is to try it. Even some ITP treatments list thrombocytopenia as a side effect.

I have been on Nplate for over a year now. I was doing so well we reduced my dose to below the minimum .90 to .72 and I was a steady 154 at the lower dose. I took my first dose of 140mg Repatha 6 days before my next blood draw and dropped to 129. 129 is the lowest reading I have had in 5 months. I do believe I am officially dang concerned about continuing with Repatha or increasing my Nplate dosage to compensate. I think you are correct to be concerned about the link with platelets but my one shot does not make a study. Repatha is very expensive but Amgen has a free program if your household makes less than $85,000 USD and you can not take statins, I qualified.

Thomas:

I wouldn't start to worry based on one count, and 129k is still well above the manufacturer's recommended count limit of 50k.

How often do you have these Repatha injections? I can't believe they are using monoclonal antibodies now for cholesterol. Silly question, but have you tried to control cholesterol with diet changes? It's worked for a few people that I know.

Oh Wow!
On a 0.72 dose of Nplate. Strong steroid and IVIG response does the trick.

Cheers to a full remission !

Hi EllenM, I am curious if your tooth extraction impacted your platelet counts, or ITP status? My numbers started creeping up after I had abscessed tooth removed.

Hi Sandi,
I have had 4 blockages stented since 2003. I tried all the statins and got 100% of all the side effects from hair loss to dental pain to not being able to use stairs. They are like rat poison to me. My LDL with diet changes is 180. With 2000mg / day of niacin, and various other supplements (including wine) I can raise my HDL to 70. My cardiologists has hounded me to take Repatha for 3 years and so far he has been correct in his blockage predictions, I have more on the way! Repatha is self injected every two weeks. The Repatha video on the Amgen site is interesting as is their Nplate modality video.

I was also pleased with my levels with a 154 monthly rolling average after lowering my dose. It just happened that my 8 week consult with my Hemo came at the same time as my first draw after Repatha injection. My Hemo is extremely in tune with my thinking and we both were considering independently to try skipping a week of Nplate to go bottom fishing for my new natural low and testing the process to see if I have a satisfactory partial or full remission. Then the 129 that followed a 157 reading changed both our minds to wait and see the effects of Repatha on my platelets going forward. I was in a groove until now! Side story follows: Got a coffee and was looking for a spot to rest it while waiting on my injection. I noticed a box that had just been dropped off full of the new PDSA ITP brochures. I pulled a few and was showing them to nearby staff when a Dr. ( not mine ) interrupted and proclaimed with heavy accent " have your spleen removed" "I wrote the book". I tried to interject (your (Hal9000)) 4 types of ITP and probable treatment responses, and that spleen removal was not quite as effective as his fat head thinks it is. The encounter did not end well. ITP makes me cranky!

:laugh: :laugh: :laugh: :laugh:
Funny story! Sometimes they think it's just that simple!

Great story! Since my son is being treated at a large, teaching hospital, we've now consulted no less than 8 specialists (7 doctors and 1 nurse practitioner). Splenectomy was brought up as "first line" treatment by the two guys in their 60s (one of whom is the head of the hematology department, the other is a family friend at a different, adults-only practice). The three middle aged docs and one nurse practitioner (40s-50s) said it may be an option down the line. The remaining two young doctors were adamant that splenectomy is not really an option for kids any more, and that we now have much better approaches with new treatments becoming available every few years. The young docs were also much more pro-watchful waiting than the rest. It seems that old habits die hard!

Although the older doctors have more experience, the younger ones probably have a better idea of the newer treatment standards. I'd go with the young guys. You're right, the older ones are set in their ways. Splenectomy should never be recommended for a child under 5 or 6 years old! That was always the general rule.