Covid-Induced ITP Recovery Questions

[thestrugglebus]

At the end of August 2022, I was diagnosed with covid-induced ITP. I only caught it because all my extremities were covered in little red dots (petechiae). I made a freaking-out visit to the ER, and they diagnosed me after they did labs and my platelet count came back 0.

All these weeks later (October now), I've discovered I'm steroid resistant (dexamethasone and prednisone seemingly did nothing for me), and promacta (which I've been on for over a month) doesn't seem to be doing anything noticeable for my counts. I just finished my 4th of 4 doses of Rituximab on September 30th.

So far, I haven't seen any major improvements. I've been given IVIG like 4 times (8/9, 8/10, 8/17, 9/16) to stop me from bottoming out too low again while I wait for something to work, but no dice.

Does anyone have any info about how long it may take to see if Rituximab has worked? My doctor said 6-8 weeks after the last dose, but that's just around the corner and no boosts yet. I'm concerned.

Is there a world in which it just doesn't work? If so, what are my next options? Maybe this Nplate injection I've been hearing about? Was hoping there'd be something that would fix this altogether since I got ITP so quickly and it was virus-induced.

Thanks in advance for any responses.

[GrouchoMarx]

There are other medications in the line. Ask the doctor. Maybe your objective should be just to be above 30 since you are have an acute ITP. Worst case scenario is to take out your spleen. Good luck.

[swheels]

Hi, I’m taking Nplate, used to have steroids but they’re no longer very effective now. I’m responding well to Nplate, there’s very little side effects compared to steroids. See if your doctor will try you on that,there’s others about but they need to find out where your ITP is being triggered. If it’s in your bone marrow the Nplate will work that’s where mine is now. I had a splenectomy when I was about 3, I’m 51. I was free from ITP for about twenty years then suddenly relapsed. It’s been another on and off road but covid has triggered this relapse and since Feb 21, I’ve been having Nplate. Now it’s finding the right dose to keep my platelets stable but having the vaccine can interrupt the process a bit but we’re getting somewhere that’s the main thing.

[Clarry1234]

Hi, I was diagnosed in June 2021 after taking itraconazole for a toe nail fungal infection. I’m been on Avatrompobag since May, they’re still trying to find my perfect dose (dosing going up and down) so still having frequent blood tests but it’s kept me the most stable of all that they’ve thrown at me. I’ve had steroids (both Dex and Pred), eltrompobag, IVIG & Romiplostim. I responded well to steroids and IVIG but not sustained when withdrawn. Eltrompobag didn’t really do much & the Romiplostim they had to keep upping the dose pretty much each week. I have no side effects on the avatrombopag either just one little pill a day at the moment and I’m out of the danger zone. Hope you find something that works for you.

[Greyone]

Hi thestrugglebus.

I was diagnosed with ITP a few years ago and because of my Glaucoma went straight onto Rituximab. I had 4 weekly doses of Rituximab. I felt no effect for over 4 months. Then my platelet count shot up to 300. I found this out because i was in hospital for something else.

Presumably you are having regular tests to check you platelet count. The question about how long or the changes of success are good ones for you consultant at your next appointment.

My doctor was taking a two year time frame for my treatment so maybe you may have to wait that long. Another good question to ask is simply how long will the doctor himself wait before giving up ? Possibly two years is that period before he tries something else.

Do please post when you get a final result.

Rgds

G1

[Bowiemolly]

I struggle with steroids become a zombie ! Been on N / Plate about a year now and works for me once they get the levels right. No side effects !

[Jud61]

Not sure if you already had itp and were in remission? If it’s your first time then it can take months to resolve. I went on like you for about six months when I got it after glandular fever and nothing worked on me. My platelet count returned to normal eventually and you can be in remission and ok for months or years but it will always be a risk catching another virus or infection to set you back to square one again.

[bruiser2017]

Rituximab can take up to 6 months before it finally works for you, but be aware that it does not last forever; my Rit treatment kept me just above 100 (100,000) for 19 months, although I have heard of people going for up to 3 years. I wish you well with your ITP journey.

[ghostthemovie]

so sorry to hear this. Unfortunately none of the treatments mentioned worked for me. Ivig & platelet transfusions raised my counts for a short period. I’ve had itp for over 20 years & it’s frustrating to say the least. So many drugs & experimental drugs with absolutely no results but leaving our bodies full of chemicals that are harming us in other areas. I’m grateful for meds for emergencies however where is the healing to stop the auto immune. I’ve always thought it was at the cellular level and I will continue doing my research. Hang in there, do your due diligence & listen to your body. You know more about your body than the doctors do. Listen to what they have to say but do your research. Find a doctor who will work with you & explain these drugs & give you options. I suggest if you’re getting push back and realize a Dr isn’t willing to work together move on to the next. Hope this helps.

[hiltonhead]

I have been on NPlate for almost a year and it is working for me. My numbers jump around a lot and I am trying to get off prednisone. I get weekly blood draws to check my numbers. There are times I can go 3 weeks without having to get a shot of NPlate. Promacta did not work for me. My platelet issue began a year and a half ago after my first Covid shot. I hope you can get your numbers raised

[lianaki]

two months since the covid disease, which I had very mildly, the platelets dropped to 10, nplate doesn't work anymore, I take dexamethasone and they drop, have you had a similar experience?

[thestrugglebus]

Hey lianaki,

Yes I've had a similar experience. For me, however, dexamethasone didn't do a single thing. I'm steroid resistant. I've been on 50mg of Promacta for the last 4 months, and that seems to be keeping me in the 90-110k range. I tried tapering off the Promacta by doing an alternating 50 and 25mg daily regimen, but I dropped to 70k. Back up to 50mg for me.

Going to be interesting to see what happens after the Spring, when my schedule will allow me to start tinkering with tapering off the promacta again and trying new things.

Here's to staying stable in the 90k range, though! Blood test in 2 days to confirm that.

Thanks,

thestrugglebus

[holcotts in reply to thestrugglebus]

Hey the strugglebus,I dont know where you live or what side effects you experiemce with Promacta.

I just wanted to add that in the UK, consultants tend to treat the symptoms not the number. So if you are fine at 30k they aim to keep them at that level with whatever drugs. ....

I like this approach so we dont need to put more drugs in our system that we really need.

Jen

[lianaki]

Hello thestrugglebus How long after the corona virus did the drugs work?

[thestrugglebus]

The Rituximab didn't have a large effect, maybe none at all. The dexamethasone did nothing. The prednisone did nothing. The only 2 things that I *know* have had an effect are IVIG (which is only temporary....but the "wear off" time periods have greatly increased since the rituximab.....possible effect?) and 50mg daily of promacta, which seems to have assisted in keeping me in the 100k range.

IVIG kicks in almost immediately and lasts 7-14 days (2 months for me after rituximab now) and promacta kicks in after 7ish days for most people. I probably had a delayed response given that I'm only stable at 100k 4 months after getting ITP...

-bus

[IVMama]

Nplate gave me a rash. I will now start infusions of Rituximab. I was in the hospital for 4 days for low platelets with Immune globulin infusions. My platelets are still low.

[Bowiemolly]

I am on N Plate injection 💉 and it works for me great. A few blips but generally I am good. I couldn't tolerate Prednisolone very well turned me into a zombie. I would recommend the injections.

[Calliecookins]

I’ve had ITP since early 2020 . Currently, I’m taking 50 mg of Promacta., but I’ve found it to be a very delicate medication. It seems other medicines and supplements can interfere with its effectiveness such as magnesium, calcium, multivitamins, and others. My doctor once added prednisone with the Promacta which made my platelet count go too high.