Cyclosporine

I went to the Cleveland clinic today for a 2nd option because I do not want to have take my spleen out. He suggested trying a combo of cyclosporine and nplate. Has anyone had experience with these two drugs together

Hi, I have been using N-Plate for the last 2.5 years. N-plate alone works well for me. And it keeps my platelets counts at a safe level.
I saw your question, and looked up the use of Cyclosporine. My question is whether you have ITP, or low platelets counts and some other problem. I have not heard of the combination. But maybe someone else has. I hope the combo works well for you.

I too would wonder why the combination and why not Nplate on its own. Mixing drugs is always difficult because you never know which is working and it is also difficult to keep the count fairly low as you are supposed to with Nplate.

Cyclosporine is a potent immunosuppressant and the whole advantage of Nplate is that it is not an immunosuppressant. Nplate can take time to find the right dose and many doctors don't seem to have the patience and give up far too soon.

I think I would try Nplate by itself first. Cyclosporine would not add anything to enhance Nplate. They are entirely different approaches to ITP treatment.

I used Cyclosporine alone about three years for ITP treatment. It worked 'okay' to keep me around 30k. As was mentioned, it's a strong immune suppressant. I caught pretty much any bug that was around me while I was on it. Then one day it simply ceased to work at all....dropped to 4k count.
.

WJack -

Here is a reference that describes the combination of cyclosporine with 2 other immunosuppressants (I know of no study where it is combined w Nplate. IMHO I agree w Ann and would try Nplate alone first, esp if you got sick on cyclosporine in the past)

www.ncbi.nlm.nih.gov/pubmed/19897578

Abstract

Blood. 2010 Jan 7;115(1):29-31.

Combination immunosuppressant therapy for patients with chronic refractory immune thrombocytopenic purpura.

Arnold DM, Nazi I, Santos A, Chan H, Heddle NM, Warkentin TE, Kelton JG.
Source

Department of Medicine, Michael G. DeGroote School of Medicine, McMaster University, Hamilton, ON, Canada. arnold@mcmaster.ca

Treatment options for patients with chronic refractory immune thrombocytopenic purpura (ITP) are limited. Because combination immunosuppressant therapy appeared to be effective in ITP and other disorders, we used this approach in patients with particularly severe and refractory ITP. In this retrospective, observational study, we determined the response (platelet count above 30 x 10(9)/L and doubling of baseline) among 19 refractory ITP patients. Treatment consisted of azathioprine, mycophenolate mofetil, and cyclosporine. The patients had failed a median of 6 prior treatments, including splenectomy (in all except 1). Of 19 patients, 14 (73.7%) achieved a response lasting a median of 24 months, after which time 8 (57.1%) relapsed. Of the 8 relapsing patients, 6 responded to additional treatments. Of the 14 patients who achieved an initial response, 2 (14.3%) remained in remission after eventually stopping all medications. Severe adverse events did not occur. Combination immunosuppressant therapy can produce a rise in the platelet count that is sometimes sustained in refractory ITP patients.

I have only seen Cyclosporine used here a handful of times over the past 15 years. Not a very popular treatment, it's rarely mentioned.

How do you feel about the combo?

Thank you very much for the insight. I have been on an off of Nplate during the past 4 months. It was somewhat successful. The doctor feels that if I can suppress my immune system with the cyclosporine and then produce platelets with the Nplate it may be a good combination. He said if it doesn't work we will try something else.

Thank you for sharing

What is 'somewhat successful"? Why were you on and off for 4 months?

When I was first diagnosed my 1st doctor put me on it and my counts got up into the 20's ( i was at 2 at time of diagnosis.) however after 3rd week on it my levels were at 6 and then 9 the week after, so my first doctor took me off of it. However, my new doctor said I may not have been on it long enough or not had a high enough dosage. We will see what happens with the two drugs together.

On a brighter note, I am grateful to have found a doctor who is willing to work with me on alternative to splenectomy treatments! Thanks to all of you who have posted all of the articles in regard to this topic. I have learned a lot and know I want to wait at least a year before considering it!

I think that may have been my first doctors issue with it

It can take a while to get the dose right. Your first doctor didn't give it long enough. I'm wondering why the second doctor feels two drugs would be better. It's possible that N-Plate will work on its own if given enough time. Cyclosporine probably won't be fast acting, so you're dealing with two treatments that can take some time to work. It will be interesting to see what happens.

I'm interested as well. I will def keep everyone updated. I am hopeful that they will work.

I went for CBC and Nplate today....22! Best it has been in over a month!

Great start! Good luck!

I was at 198 today! Trying not to get too excited because one week in feb I was up to 251 and dropped to 5 the next week, but maybe the treatment is working. We will see what next week has in store.

Vdeutsch85

Congrats on a great count - fingers and toes crossed that it stays up there for a while

Cindy Ann

Great counts! A good start to your new treatment

If N-Plate is the one working, you may experience ups and downs from week to week. That's pretty much the norm with that treatment. Great counts though!

That's good to know. Sandi. When I was just on Nplate in January I never got above 26. However, I was never on this high of a dose so who knows. However, my gut instinct tells me it's cyclosporine working. Either way I am in a much better state mentally battling this disease and ready to figure out the mystery of what treatment is working! On a much more vain note, I am glad that most of my bruises are gone!

Yeah, a lot of people on N-Plate would have good counts until the injection wore off by the end of the week, and counts would go back into the single digits. Sometimes that would stabilize in time. It's given once a week because that's about how long it lasts, although there have been reports of remissions from N-Plate. N-Plate is a drug that requires patience.

I hope it's the Cyclosporin too, but since it's so rarely used, I am not at all familiar with how it works or how quickly that can happen.

I did not get an an Nplate Shot last week but am at 51 today after being at 198 last week. it seems that both drugs are working together. We will see what next week' s counts look like.

Sounds good!

I was at 170 today! So grateful to dr McRae for allowing me other options besides splenectomy! This has been the best month for me since dec, thinking of getting my tattoo touched up since my counts are safe!

Good for you! No side effects?

Knock on wood no side effects!

Well the past few days I have been achy and tired. I went to the zoo yesterday and felt like I could barely move. I woke up with petichae from head to toe. I am pretty sure my platelet count crashed within the past 48 hours. So frustrating! Am going for CBC tomorrow

Well I'm back down to 4 today. I was not surprised since I felt so icky the past few days....tired achy sore throat, petichae from head to toe.

However, I am very impressed with dr. Mccrae at Cleveland clinic...he called me back within 10 minutes. He thinks I crashed due to not receiving Nplate last week. My regular hematologist said that since I was at 171 last week, no need for Nplate. My gut instinct told me he was wrong but I ignored it, even my brain kind of told me otherwise after seeing the Nplate chart. Well I lived and learned and will be fighting him for Nplate weekly unless counts are above 250. He does think the Nplate has worked though the past month, so here is to hoping we get the counts back up.

He didn't tell me either way of if I should have IVGs. He kind of said hey it might get you up until that 7-10 day mark when Nplate kicks in fully. Then he said do you have any bleeding symptoms in which I responded no. After not responding at all to it,and feeling nauseous and having a headache for 3 days, I'm thinking against it but will sleep on it tonight. I like how he talked to me about it without telling me what to do.

Well, at least you have a good plan going and a nice, cooperative doctor!

Well Dr. mccrae was dead on when he said Nplate would take 7-10 days to take effect. It is day 8 and my count went from 4 to 241. I felt pretty tired and achy up until yesterday.....laid on couch most of the 3 day weekend!

On a funnier note, my exam room was right next to my local hematologist's office, so I overheard the whole conversation between him and dr. Mccrae today. He was trying to tell him that his patients usually only need Nplate every two weeks and didn't understand why I would possibly have crashed last week. Them he said he was upset with me for not listening to him and getting IVGs last week when I was at 4. Mccrae must have informed him that he already knew of all of this from last week when I personally called him freaking out and he looked through all my charts and knew why I crashed 8 days ago. ( Not recieving nplate the week before)I am hoping he learned something from my experience so that other Nplate patients will be given correct doseages.

Then he comes in the exam room saying that he and mccrae both agree that I need Nplate weekly( that's not what he said two minutes prior). I think he realized he lost all of his "doctor powers" and that I am an active participant in the treatment process and will personally consult with the pros. It was kind of funny to see his face. I think we now see each other differently. He is no longer " the great and powerful and I am no longer timid submissive Valerie. Hopefully we do not get into another Nplate battle next week...l do not want to crash again!

Most of his patients are cancer patients and I think most just listen and do whatever treatments they are told to do. I am now well aware that itp and cancer should be treated differently and I am capable of doing research and asking questions.