We have tried several times to reduce the cyclosporine A to 25-75 mg daily, but the platelet collapsed after a week.

That's why we stopped at the current level and didn't move forward.

Goodness dr bean  what a cocktail of drugs you are still on. Surely it would be good to try slight taper. Protocols state the lowest dose of meds to maintain a count ≥ 50 

My haematologist has no plans to slowly taper me off a drug, even though my count is stable.

In fact, we have experienced too many platelet disorder events to go one step further at this stage.

Therefore, my current treatment has not changed since January 2022, which is more than two years ago.

It's a pleasure to share my experience with other ITP patients, also medical students.

Hey drbean it is good to see you - and that great platelet count!!
Think your hematologist may start tapering you off a med slowly since your count is stable?
Thank you for keeping in touch and letting us know how you are doing!

My platelet count from Feb 23 to Mar 24 are as follows;
4 Mar 23 - 178
22 Apr 23 - 166
5 Jun 23 - 190
22 Jul 23 - 152
28 Oct 23 - 172
18 Dec 23 - 193
5 Feb 24 - 166
23 Mar 24 - 174

The combination of current treatment:
a. Cyclosporine A - 100 mg daily (am: 50 mg, pm: 50 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

Curry
I have been on Romiplostim (NPlate) in the past. No problems with hair loss just awful bone pain particularly in my hips

No worries!  Thanks again for taking care of the site!

That sucks!  You really do have a lot on your plate!!
I really hope your doctors can figure something out for you.
Keep us posted.

No way to get rid of the cysts. Draining some is an option but they just come back or others rupture. Way to many to deal with anyway. Bleeding is a common occurence but usual is short lived and self healing but apparently not with ITP' Just back from Dialysis and still bleeding significantly

Thanks, Jeff!  I agree with Mel, you do do a good job!  And thanks for listening.
Just a thought, is there some way you could give us a heads up about making changes?  That way we won't totally be surprised by them.

Welcome, Tow.  Sorry you're going through all this.
Since we're not doctors, I think you should discuss the dosage of the Promacta with your hema.  I don't have experience with this medication.
The way I'm reading your post, and I may be misreading it, it sounds to me that the blood you're peeing out is coming from the burst cysts.   Is there anything that can be done to break them up or get rid of them?  Like I said, I'm not a doctor, so if these are stupid questions or I'm not reading your post right, please excuse me.
I really do hope you get the bleeding stopped, or at least under control.
Please keep us posted on how you're doing.

I am new to this site and am hoping some of you can help.  I was diagnosed with ITP about a year ago after a bone marrow biopsy and tons of blood work. I had to have surgery to put in a graft for dialysis and was given platelets and DDAVP through an IV to get me through the surgery.  A few days later I crash and had to have a Catherter put in my chest and was sent to dialysis.  An hour into dialysis I started to bleed at the catheter.  I struggled with bleeding issues, getting platelets, and extra stitches and then finally N-Plate shots.  N-Plate worked for a while and then stopped. 
Since then I have been on Decadron, IV-IG. Promacta, Ruxience, and most recently Doptelet.  Decadron and IV-IG has been the constant with all of the treatments and son far none of these has consistently worked.  I was given 75mg of Promacta and took one pill at night and the next day I had profuse diarrhea from early morning every half hour all day.  The next day I had bad vomiting in the AM.  Needless to say I stopped the pill. SHould I be willing to retry Promacta at 25mg ??????
Besides being on Dialysis I have Polysystic Kidney Disease (hundreds of cysts on bothe kidneys that has taken over the healthy tissue). Lately I have been peeing bright red blood. After hospitalization is has been decided that the cysts have burst and with plates in the low 20's the bleeding of them doesn't stopped. Initial a dose of platelets stopped the bleeding temporarily but most recently that is not working.  I had platelets yesterday morning and still peeing blood profusely this morning.  Yesterday I was proscribed 1mg pills of DDAVP pills and I took one this AM.  The verdict is still out on that and the Doptelet.  I just strted on the max dose of Doptelet (20mg twice a day) about a week ago.  Still doing the Decadron and IV-IG once per week.  If the Doptelet doesn't work my Hematologist said we should try Win-Rho.
Any help would be appreciated.  I can't keep peeing bright red blood.  Urologist and Nephrolgist have no solutions. Says it's up to the Hematologist to get the platelets up.
Thanks for ANY Input

Hi curry - I have no experience with Nplate but did some searching and all I saw was that hair loss wasn't a side effect of Nplate.
I hope someone who is/has used it will see your post and respond.

As usual Jeff you are very helpful !! (it's hard to teach an old dog new tricks )
The changes you made are good ones. Thanks for listening to us and we do appreciate all the work you do on this forum!!

I changed the "Quick Reply" from a pop-up box to always being displayed at the bottom of the thread. Let me know if you like that better.

Thanks, Jeff

I have been taking Nplate, and started losing my hair? is this normal?

I get that things have to be upgraded, but I would hope that it would be easier to navigate.
I don't like the fact that I have to log out and then log back in to get on.I had to that yesterday and today, yet I have the "remember me" box checked.  Oh well, maybe in a couple of days I won't have to go that route. 
I do like some changes.  Like at the top of this post are all the options like, like color, font size, emojis.

Behind you 100% Cindy - this new look is not friendly!
I am doing a "Quick Reply" and in doing so the box covers a lot of your post that I am replying to, that is no help. Also having the last post 1st means you have if you are doing a Reply instead of Quick Reply the original post is at the bottom, at least that is my experience. Don't like this at all!!!

Yes it appears some, maybe all recent posts were lost with this new look - mine was. 
I don't think the new look is user friendly - as all!

This is not easy to navigate as you said mrsb - and it wiped out my response too.
I don't like the last post first - need to be able to see what the original post is in order to reply, and also all other replies so not repeating.
Jeff - why??
 

I'm not sure about this new look!  I found it hard to log in and it's a bit harder navigating the site.  Maybe over time we'll get used to it.  As I'm typing this, I find the font quite small, but if I change to to the 150, it's too big.  There must be a happy medium.
I changed the font to see what it would look like at the 150 size.  This is it.

The message I wrote yesterday seems to have been deleted. The website also seems to have a new facelift. Were recent messages lost?

I'm not sure about this new look. Finding it much harder to navigate, everything is so tiny and it's wiped out my last post. 
Fay if I remember it said I am sorry but as a nurse of 46 years standing I never came across it. 

This is interesting - a new look and mrsb's and my reply is not here.  
Fay I had not heard about MTC until your post [mrsb either if I remember right].   Sorry I cannot be of help to you. Hope you can find some answers.  

Looking for anyone with experience with MTC, or giant platelets.  I haven't been able to find anything on this site.
Thank you in advance for your information.

Good afternoon.  Thank you for reaching out.  I'm sorry to hear about your son.  Unfortunately, no.  We were at Georgetown for the majority of his care, but there were some changes and it no longer became the ideal place for us to go.  Long story short, we now receive our care from Dr. Lambert at CHOP.  She is amazing!  She has a dedicated team to support platelet disorders, is an expert in the field of ITP, is on the board of medical advisors for PDSA, and has a unique understanding of the primary and secondary effects of ITP on children.  The arrangement works for us given our son's relative stability with his medication (Promacta for ~7 years).  We do have some bumps in road every now and then, but generally we maintain a fairly consistent, safe, platelet count.

It's a lot to wrap your arms around in the beginning.  If you have any other questions, please do not hesitate to reach out.      
  

Hello. My son was diagnosed last year and we are also in northern VA area. Have you found a hematologist that specializes yet? We currently go to INOVA, but looking for others to get a second opinion. 

I'm not kid, but I do tend to itch when my platelets are low. Of course I have allergies, too. But as I have been very itch for a couple of days and my count in January was 37K, I am going to get checked today.