TOPIC:

It’s been around 18 month since the diagnosis. First they started me on Dexametasone for pulse treatment. By Tc base level is 1k. The cortisone got levels up to around 40k but not lasting. Next was nPlate. It worked to get Tc up to 60 with huge swings. Had to gradually increase the dosage to max allowed. After 6 months or so it started to not work anymore with levels in the teens even with the weekly injections.
We switched to Revolade. 75mg, so Max dosage pretty much from the start. This went on for 4-5 month before this also did. It do much anymore.
We then added some Spiricort to the mix, like 20mg and the combination gave a pretty good result. Tc in the 40k range, still variable. The issue was that I started to suffer from weak leg mussels after a while. Both Spiricort and Revolade have that as side effects. So unclear which one of them was responsible for my weak state.
I should add that I have also received IVIG infusions intermittently for some Neuropathy in my leg nerves (seems to also be some autoimmune issue). The IVIG last about 3 weeks for me and get my platelets up to 60k in combination with nPlate or Revolade.
So I discontinued both and predictably my Tc levels dropped to 1k. When I have these low counts I am super tired. Petechiae on my foot and legs. Sometimes also on my face. No bleeding but at extremely low levels blood blisters in my mouth.
I was getting my COVID Moderna shots and we waited 2 weeks after the second shot to start the 4 course Rituximab treatment.
So last Thursday was round one. No side effects during infusions. My platelets are 1k and today I started taking 50mg Revolade to see if this does not increase the count away from the critically low levels. Thursday is round 2 of Rituximab.
I read it take like 5 weeks before potentially seeing effects if one is so lucky to respond. Would be interesting to see what other people experienced during their Rituximab treatments. When did your count elevate? Did you feel any side effects. I am just super tired but I think that is the low count rather than the Rituximab.
So long. Will keep you updated. Would be interesting to see what HAL group I seem to fit in. I was not able to figure it out on my own. Maybe that would give me some indication to see if Rituximab might work for me.

I was lucky, my counts went up with the first dose. I didn't have any side effects and was actually surprised when I got the 4th dose.

That is great. Mine went from 1k to 5k and back to 1k yesterday. So basically unchanged from the 1. Treatment last Thursday. One to the next round tomorrow.

Don't worry too much. It can take time to see results.

Hope this helps-
Copied from: haematologica.org/article/view/8926:
"Three different patterns of response can be distinguished: a first group of patients respond rapidly, within the first month; in the second group, the platelet count starts increasing after 3-4 weeks, and a CR is achieved within 8 weeks after treatment; in the third group of patients, the platelet count increases very slowly, only reaching normal values 3 months after therapy."

I have had two rounds of Rituxan, one put me in remission for 7 years and one for 2.5 years. I will probably start my third round next week. Both times, I took Dex pulses while in the four week treatment to keep my platelets up while waiting for the Rituxan to work. It usually started working within 1-2 weeks of the end of the four weeks for me. I hope it does the same for you!

I wish any of those scenarios was mine. Jumped after first treatment to 115. Dropped after that. I was told it could take up to 8 weeks to work. That was the end of January. Still waiting. Now on Tavalisse which is wrecking havoc w my digestive system.

Quick update. I was never able to get of some tpo medication. By platelets have been as high as 266 but when I went off the playlet production increasing meds they crashed to single digits. They have been wildly swinging even with no change in meds. I think my body fluctuates between two states. Attacking platelets and then not doing so. If it stays like this I will try to do another course after 6 months. I am reacting to it. Just not enough. Will keep you posted.

Ok time for an update. Retuximap worked and it did not. What it did is that I am reacting to nPlate again. I was getting by with the minimal does of 250 mcg but lately had to increase to 500 mcg again. 
The bigger problem is that I am suffering from one of the mentioned side effects of nPlate. Muscle weakness. Probably only in my legs. I can almost not get up the stairs anymore. I am having an MRI in 2 weeks to see if there is an inflammation in my leg muscles but I thinks it just nPlate. So the plan is to stop that and do weekly Privigen IVIG. Just want my normal strength back. 
i am also buying a Sysmex blood analysis machine. How can I see any results from experimenting with things if I get only weekly platelet readings. I will sample myself twice a day. I can therefore keep track of what is going on when things change. Did I have stress at work? Did I have a cold? Whatever, I will have a chance to find influencing factors. 

One thing I found is that when I had to take antibiotics my platelets increased substantially. So it might somehow tied to the gut biom. As the antibiotics were decimating the bacteria in my gut so the adverse reaction to my platelets decreased. That I thought was interesting. So I will experiment in that direction. 
The machine arrives in 2 weeks. So let the experimenting beginn. 

It'll be interesting to do counts twice a day. I read that counts are often higher in the afternoon so see if your experience confirms that. 

Ok, that is interesting.  How big of a sample do the machines require?  That has to be a consideration for how often it can be used.

100 Micro Liter. So a few drops after a pin prick in the finger. After a week I have to say it’s fun to look forward to the next reading. My fingers are holding up. Next week the experimenting begins after establishing a base line through two cycles of weekly IVIG 

How much did the Sysmex blood analysis machine cost?  Covered by insurance?  How much blood, and how get, does the machine need?

It was about $12k. I paid out of my own pocket. Not covered by insurance. It takes a finger prick and 100 myl of blood, which is about 5 drops. 
Results are ready in about 30 seconds. 
it was a little tricky to get the machine as they don’t sell to the public. I have a great doctor that was willing to order the machine for me. Sysmex was great as that was all they needed. They had no problem delivering straight to me and giving me all the intro I needed.

That is great!!!! But wow, a little expensive. But mentally, that would e great!

So what is your ITP history?

Toby do you really mean 100ml of blood ? 

What model is the sysmex?  Do you have a support contract if it is broken?

100 micro liter not ml. You are confusing units with a factor of 3. (millionth and thousandth) 
Literally 5 drops of blood

Its a Sysmex XP-300. Yes full support and warranty. 
Wish there was an easy way to attach a picture.

Toby
I am not getting confused with units the symbol for a micro litre is μl. 
'myl' looks like a typo for ml. I am fully aware that 100μl=0.1ml.
Link below to picture 
www.sysmex.com/US/en/products/hematology/3partdiff/pages/xp-300-hematology-analyzer.aspx