Six months since initial ITP diagnosis

Hi,
On May 8th of this year I had a routine CBC that indicated a platelet count of 5. I figured this was not good since they called me at 11pm on a Friday evening to tell me so I put my wife, a Nurse practitioner , on the line. Repeat test on Monday was the same so by Tuesday morning I was on my way to the hospital. Had a platelet transfusion plus numerous diagnostic tests. I did have more bruising than usual but I wrote it off to getting older (57). The pinpoint rash (purpura) was also present on my lower legs but I didn't really notice it. On day 2 in the hospital I was started on a 4-day course of dexamethasone. Back in January I was put on metformin because my A1C was high, but now on steroids I had to start insulin injections. I was discharged on day 3 and my platelet count had reached almost 200. By early June they were back in the 50-60 range despite another 4-day course of dex, and I was given my first IVIg infusion on 6/8. Counts rose to the 150-160 range but were back down in the 50s in early July. Two infusions of IVIg were scheduled and then cancelled as my count rose into the 80 - 90- range. In mid-August they were in the mid-30s and I had another IVIg infusion on 8/27. Once again, after about 30-days, counts were in the upper 20s - lower 30s. I should say that from early on my hematologist has been great, and with my wife working at the same hospital they have had multiple discussions on my situation. I am very fortunate in this respect. A bone marrow biopsy failed to find a smoking gun. Following a long discussion on treatment options two weeks ago we opted to try rituximab along with short term treatment with prednisone and possibly IVIg depending on how long approvals took for the rituximab. On 10/6 I started prednisone and so far it hasn't negatively impacted by blood sugar too badly, although I have been careful with my diet and regular monitoring. With yesterday's approval for rituximab, today's IVIg infusion was cancelled and I am scheduled for ritux on Tuesday. Platelet count was at 64 this past Tuesday.

In August I accepted that this wasn't going away any time soon so I started educating myself on ITP and quickly found this site. It has been great and I very much appreciate the access to medical journal articles as well as your individual stories. I was reluctant to rely on steroids due to their negative impact on blood sugar, as well as about every other system, and I pretty quickly ruled out a spleenectomy after reading some articles here. Seems that the remission rate drops significantly for my age group so it didn't outweigh the downsides to it. The only side-effects I've seen with IVIg has been a strong headache the next day, along with some back pain. Both subside after a day or so. It appears that Rituximab has some potential for more adverse side-effects but clearly it is time to try something else.

Sorry for the length! I was wondering what others here have experienced with rituximab treatments and I've read through the posts looking for that. I'd be glad to hear from others in this same boat!
Thanks,
Roger

Belated hello.
I was 58 when I was diagnosed. Been living with this mess for 12 years now. In the very beginning, I decided I wasn't going to treat at all, since the remedies seem so much worse than the disease. Eventually, though, my counts stayed below 20 for longer than even I thought wise, so I began a smaller-than-average dose of prednisone and took it off and on as needed. After a couple of years, I needed it continually and took it for more than 2 years straight. It started damaging my bones too badly, so I had to do something else. By that time, NPlate had developed a good safety track record with few side effects, so I requested that. It worked irregularly... That is, it never has gotten me to a steady count; I still have dips and spikes, neither of which is a good thing with NPlate treatment.

So a few years into my not-so-ideal NPlate treatment, I very reluctantly decided to try Rituxan. Reluctantly, because I was sure in my gut that it was going to hurt me somehow. I did my homework. It's not an innocuous drug by any means, and it isn't even yet FDA approved for use in ITP. It's considered by some to be within the top 50 most dangerous pharma drugs made. I should've listened to my gut. I ended up in the hospital for 6 days and with a permanent disability because of that drug.

Now, I would never tell anyone not to try Rituxan based on my experience alone. As you've probably found, dozens of people in this forum have done it without much trouble at all. It worked for some, done nothing for others. Only one other I know about had my kind of trouble. That's the thing about side effects. They don't always happen to "the other guy". It's a risk one takes.

I'm back on NPlate since then. It's still working inconsistently, but I'd rather take chances with it over anything else that's available.

I hope you will arrive at the best solution for you and that it'll work gangbusters!

I did the 4 treatments of Ritux because my Hemo recommended after Prednisone did not work. What if I may ask was the difficulty you had with Ritux that caused your disability. I am sorry that you are going through that.

You can read my whole story here ~ pdsa.org/discussion-group/7-treatment-general/30010-prednisone-self-help-rituxan-nightmare.html#63430

But if that's TMI to read, the nutshell version is that Rituxan is known for re-activating latent viruses. It likely did that to the virus that causes vestibular neuritis, which has all but permanently destroyed my equilibrium. I'm not the same person I was before that.j

I am so sorry to hear that

I did Rituxan in March of 2019 and it went okay. Only had an initial allergic reaction, which I was told was common...then was given more antihistamines and took a break from the treatment. I was able to finish it and the other infusions without any issues. I was told it would take up to 3 months to work. That time came and went and my counts continued swinging wildly up and down so my hematologists and I were trying differing doses of Promacta thinking the Rituxan was a bust. Lo and behold eventually my platelets were shooting up much too high (another terrible problem in itself) and I stopped taking the Promacta bc my platelets were at normal levels without it. Hematologist thinks Rituxan just kicked in very late for me (5 months after treatments). I know everyone is different, but I hope my experience helps!

Hello -
Amazing story! Thanks for the feedback. As several others have replied and from others I have read, everyone is very unique.
Can you comment on:
* how far back was your original diagnosis?
* was your onset very sudden, or gradual?
* what were your platelet counts?
* did you just start with Rituximab? I'm assuming you went through the normal progression starting with infusion, IVIG, prednisone..
Sincerely.

Sure,

I was diagnosed December of 2018. I had been showing symptoms of it for the better part of the year, however. It wasn’t very sudden if I think about the progression of symptoms. Started with petechiae, didn’t think much of it. Easy bruising too. As the months went on, I noticed my menstruation was getting very heavy & I was extremely fatigued most of the time. That is when I knew something had to be very wrong. When I was diagnosed they found a platelet count of 8K. After hospitalization, I believe they went up to 120K. But as they tapered me off of prednisone, there was another crash. Started 25mg of Promacta daily in January of 2019 and initially it seemed to work...my hemo reduced the dosage per protocol and again I crashed. I don’t remember the amount my platelets got down to every time, but my lowest crash was under 1K. It was a lot of crashes, so I’m sorry I don’t recall the specific levels. Progression of treatments was IVIG & Platelets at hospital when diagnosed, then prednisone, Promacta, emergency IVIG & platelets when needed for crashes, then Rituxan in March 2019, high dosages of Promacta until August of 2019. Then platelets shot up to upwards of 800K and we started holding meds and monitoring levels. Eventually hemo just left me off of meds and my levels stabilized in the mid 200K’s. Admittedly, I haven’t gotten them checked since February of this year, but I haven’t had any cause for concern so I’d rather not expose myself in a pandemic if I’ve been stable.

I truly hope this helps! Let me know if you have any other questions

I am sorry I’ve been so tardy in catching up to the responses. Thank you! Yesterday should have been my 4th and final rituxan infusion but platelet count was at 10. Since IVIG was available she opted for that, otherwise I would have been admitted. No real issues with bruising and no rash like when first diagnosed so I was caught off guard. The prednisone dose was dropped to 50mg/d from the initial 60mg/d. Side effects have been mild thankfully with insomnia being the main one. Like now. Some headaches and initially some dizziness. Going back in a few hours to recheck platelets. Rituxan now set for Friday.

The hematologist said that a drop in platelets is a rare side effect of rituxan. I don’t recall seeing that listed. No other issues during the infusions or afterwards.

Platelets are back up to 43 on today’s check. Check again on Monday. Dr has opted to skip the last (4th) rituxan infusion and continue the prednisone. About six weeks ago I started taking ozempic to regulate blood sugar and hematologist has learned it can cause drug induced thrombocytopenia so I will now discontinue it. Type II diabetes really does complicate everything else and I wish I had worked harder at heading it off.

biker dude

bikerdude
Why would you have to be admitted with a count of 10? Unless you were actively bleeding I cannot see why admission would be required.
I have worked many 12 hour shifts on the NHS front line with counts in single figures as low as 2. Doctors often appear to be more concerned about counts than symptoms.
I am very lucky in having a haemo consultant who isn’t. Three years ago I flew from the UK to Australia for a 3 week holiday. When asked her what she considered to be a safe count for me to go her response was anything above zero go and enjoy yourself.
It is protocol at the ITP centre I attend that one gets a count done at the GP’s surgery on the Friday before a Monday clinic attendance. On more than 1 occasion I have been rung by a haemo registrar on the Friday night to inform me my count is low and to go in. I refuse take some Pred and turn up for clinic on the Monday as planned. My consultant has supported my decision every time.

That is my hematologists threshold for admission. As I mentioned there were no outward signs of an issue. From reading here and elsewhere I am now comfortable myself with anything above 50. Between 20 and 49 I'm more concerned given the rapid decreases in my testing. Please don't forget as well the different attitudes here regarding defensive medicine due to the US being a very litigious gathering of hairless monkeys. Said only partly in jest.

mrsb said: Doctors often appear to be more concerned about counts than symptoms.

I just had a phone "new patient visit" this week with my new hematologist, we opted for the phone since my count is decent & the virus cases are on an increase here. He said he doesn't treat a number on paper.

I know nothing about rituxan but was wondering why it wasn't given just because of a low count - that's why it is given in the 1st place. And my understanding is it takes a while to kick in.

bikerdude - hope your count will continue to increase. Hope going off the med for your diabetes doesn't mess you up! Take care!

MelA wrote:
I know nothing about rituxan but was wondering why it wasn't given just because of a low count - that's why it is given in the 1st place. And my understanding is it takes a while to kick in.

My hematologist said a drop in platelets is a rare side effect of the rituxan itself. I haven't looked this up yet myself but in previous reading on it I do not recall seeing that listed. I did ask if the treatment could be effective with just 3 infusions and the answer was yes. As an engineer I generally dislike changing multiple inputs at once as it clouds the cause of the outcome. I'd have preferred to stay on the ozempic, endure a trip in for a weekly CBC to monitor changes, and wait out the 8-12 weeks to see if the rituxan to works. Since I take the ozempic weekly on Sundays, it is not too late to press on.

bikerdude, I did Rituxan in 2011 and counts started going up with the first dose. I was actually surprised when I got the 4th one because I was already in the normal range.
And I'm pretty sure I have seen posts, either on here or the Facebook page, where counts have dropped when getting Rituxan.

One thing I have discovered over the 30-odd years of ITP is that I can politely disagree with & question my doctor, any of my doctors, since it is my body that is being messed with.

Hang in there - good luck!!

bikerdude
I just came across this recent and extremely well referenced paper. It may well be of interest to you.
Rituximab in the treatment of immune thrombocytopenia: what is the role of this agent in 2019? @ www.haematologica.org/article/view/8926

Thank you! This is what I like to dig into.

Update from today's visit with hematologist.
On Nov 11 I received IVIG following a platelet count of 13 (previously noted). On Nov 12 the count was at 43, and at 189 on Nov 16th. Today it had dropped to 87, which is higher than I expected. We'e ben running the furnace for about a month now and the annual nosebleeds began on Saturday. They took longer to get stopped than in the past so I brought that up today as well. Need to see an ENT to get them zapped. No increase in bruising. Tapering off the prednisone by dropping dosage by 10mg every third day. Down to 20mg as of today. Blood sugars are already settling back down, which is a relief.

Otherwise it is watchful waiting with weekly CBC to see if the Rituxan has an effect.

Hi,
Today marks 49 days since the third and last Rituxan infusion, and the 4th straight higher platelet count since the drop after the IVIG treatment on what would have been my 4th Rituxan infusion. I am cautiously optimistic at this point but recognize I could see a drop next week or next month or, well that would be next year so...
Since I am an engineer I've been tracking my counts in Excel.


Not sure if I am embedding the image but it is a screenshot of my counts from when they bottomed out just prior to getting IVIG until today's result.

i had 4 retux treatments july/august this year after having been in hospital for 10 days over a 2 week period with platelet levels as low as 2. The 4 weekly infusions were followed up with weekly Nplate injections until first week in November. My levels had been well above 140 for s months before we decided to end Nplate. My last visit, injection, and blood count was in the first week of November. My next check up in Jan 4. Fortunately I was able to break from worrying about or even thinking about what my level may be. I really no longer care to even think about it and wont unless I begin experiencing the physical symptoms that sub 10 platelet levels bring. Kind of nice not thinking about or dwelling on platelet levels or what they might be. I honestly no longer care and am doing fine without knowing

biker dude
Sounds like you are doing ok.
Copying and pasting brings up the chart but no y axis so cannot see count totals.
If you select and copy the website address you can hyperlink it.

I'll take a larger screenshot, I did cut off the y-axis, sorry!

My hematologist was looking to add nplate to the treatment plan but so far has not brought it up again. I did get the necessary approval through insurance.