I.T.P Rituxamab

[Shneakyoleary]

My Platelets last week was 20.000 and it was decided to start me on Rituxamab, the first one was on Thursday just gone. It was interesting to hear that in the week waiting for treatment to start that my Platelets increased on there own by 7000 bringing them to 27.000.

I wonder what I can expect this Thursday, will Rituxamab have kicked in yet or will it be to soon?

I will be having four in total, I got a slight reaction about an hour and half into it, which was strange because any reaction usually happen before the stage I was at.

My reaction was like a flu coming on, sensation at back of nose/throat Sneeze/Sniffle - it passed after about 15 minutes.

[Kyriak51]

Rituxamab has a 50% success rate, there many on this site good result sadly I was not in that 50% group and was advanced to Nplate weekly injections since 2010 to maintain my counts between 30 to 80 thousand which is acceptable for me to maintain a fairly active lifestyle. I didn’t have any reaction to Rituxamab as I was premeditated9 with IV Benadryl. Generally patients will see positive results by third infusion, good luck and please ask to be premeditated for next infusion.

I don’t know how long you have had ITP but my counts fluctuate with illness and increased stress both of which I’ve had for past three weeks, platelets 10 to 14 thousand. I DO NOT function well at this level as I’m very fatigued and depressed that my counts are not increasing in spite of weekly Nplate injections. It’s possible that I’m developing antibodies to Nplate only time will tell. Be well Georgia

[Shneakyoleary]

Thank you Georgia, I have ITP about 1 and a half years. I was previously on 100MG of Predisone. I have not yet had to experience 10/14 thousand Platelets, I expect lots of bruising at those levels? I did get Paracetamol and Puretin. My next dose is on Thursday. I have a sore shoulder at the moment and was prescribed Xanax which I was told is a Muscle relaxer. No one has mentioned Nplate yet, hopefully I fall into the 50% that it works.

[conquerator2 in reply to Shneakyoleary]

Rituximab is definitely worth a try. It's somewhat unpredictable so it might have a long lasting effect or a short one. I think mine kept platelets steady for about a year the first time and then a couple months the second time. I also had a mild reaction to it, similar to you, despite given anti inflammatory / allergic drugs but it subsidized on its own. Good luck! Hopefully it'll keep you steady for a while

[Shneakyoleary in reply to conquerator2]

Hi Conquerator2

Sorry for my late response, after my third today I feel okay, but had a few coughs since getting home, almost as though I have chest infection coming on but maybe it’s in my head.

My Platelets went up from 27.000 to 57.000 after week 1 and on week 2 fell from 57.000 to 28.000 so a bit of a rollercoaster. I will know how week 3 goes on November 5 when I get final fourth infusion.

[conquerator2 in reply to Shneakyoleary]

Best of luck! It's a common side effect but it's good to make sure it's not an infection still

[technogeek]

I used to get reactions to Rituxan for the first year. I am going on 3 years now and my doctor has changed the usage strategy for me just now. I was getting 4 weekly repetitive infusions each time my platelets dropped low and the rituxan kept me in remission for roughly 6 months at a time. So I needed 8 infusions a year. Now my doctor is giving me only one infusion once every three months as a maintenance dosage. I have only had one of these new doses so far so I cannot comment how that is going except my platelets were normal (248) at the time of the maintenance dose.

Because I had reactions the infusions always came with steroid which brought my count up quickly. This last time because my count was normal I did not get steroid with it. It was important to me to avoid steroids because it always makes my blood sugars skyrocket and I am a diabetic.

I hope all goes well for you.

[Shneakyoleary in reply to technogeek]

Hello Technogeek,

The level seems good if the can keep them like that by giving a dose every 3 months.

My Platelets went up after week 1 from 27.000 to 57.000 but fell today from 57.000 to 28.000 so a little disillusioned this evening, I remember thinking to myself that at this stage they could be 103.000 (but I was a good bit out) I hadn’t imagined them falling.

Do you have Is ITP long?

When you got the infusion would the rise every week/infusion or go up and down during them?

How often would you see your specialist when off the infusion?

[technogeek in reply to Shneakyoleary]

I am sorry it did not work so good for you. Each person is different. Wishing you the best as you move forward. God bless

[rgomm]

I’m one of the positive retixumab results, at least first time round. After the first course I got 4 years at nearly 100k (from undetectable and hospitalization). Then I started dropping again, they tried a second dose of retixumab but I didn’t respond. Instead I’m now on monthly IVIG (kiovig) for the past 10 months. Platelets in the 150 to 200 range every month. So basically it’s hit and miss on retuximab, and you never know how long you will hit remission. Good luck

[SoporRose]

I'm another success (so far) story. I've gotten five and half years of stable counts after Rituxan. It did leave me with permanent fatigue though. I hope it helps you!

[Shneakyoleary in reply to SoporRose]

Hi SoporRose

Can you remember how your Platelets worked/increased with treatments. After week 1 I went up from 27.000 to 57.000 and after week 2 I went down to 28.000 from 57.000. I won’t know how week 3 goes until the start my next infusion on November 5th.

[SoporRose in reply to Shneakyoleary]

My platelets rose pretty quickly after the first or second infusion. As I recall, they actually bounced up pretty high (over 300k?) and then came down to a little over 100k. After a few months, they dropped down to around 90k and my haematologist said that I'd need another round of infusions soon. But then my platelets started climbing again over the next year, and for some time now I've been 190-210k.

I do remember being told that it can take some weeks after the last infusion for the Rituxan to start to work. But as others have said, it's a drug to which people have widely different reactions. Don't give up hope. It's too early to know whether this medication will work for you or not. But do keep letting us know how you are doing.

[Shneakyoleary in reply to SoporRose]

I will keep you updated, it’s positive what you say. I never knew what Platelets were until I found out they were low, but 300 is a dream, the safety and security of having them that high. My Dr recently said as long as they are above 40/45.000 agrees on about 50.000 as long as the signs are okay, but I would rather have them normal like everyone else.

[Mojojojo24]

I’m starting my first dose of Rituximab next week. I’m feeling a little uneasy about it mainly because I haven’t been responding well to any other steroid. Just wondering what I should be looking out for. Any tips of what I can do before or after to make the process easier.

[Shneakyoleary in reply to Mojojojo24]

Hello Mojojo,

The infusions eat into a good chunk of the day, lasting at least 8 hours first day, 7 the second infusion, and pretty much 7 today as well (my third)

After the first week they Platelets went up from 27.000 to 57.000, I was looking forward today to hearing how second infusion worked this past week, but the Platelets fell to 28.000 - I am a little disappointed about that but they said not to worry that they could rise by next infusion on November 5th.

Over all it’s going well, on the first day one of my veins wouldn’t take the line (I think they used the term that my vein blew) so the just switched arms. I felt after about two hours into first infusion that I had the flu a few days, it started at the back of my nose and back of the roof of my mouth, it passed after about 20/30 minutes and the didn’t have to stop it.

Week two was grand but the last two hours since today’s finished I had a cough a few times and I am feeling tired (but I was up at 6am)

Have a book or something to pass the time, or TV show.

[Shneakyoleary]

Hi Rgomm,

When you say course how many infusions were part of that (four?)

My Platelets went up from 27.000 after week 1 to 57.000 and today after week 2 they dropped from 57.000 to 28.000. I won’t know how my third infusion today does until my next infusion November 5th.

[Shneakyoleary]

Hi Kyrisk51,

I have ITP April 24th 2018, and started first treatment of Predisone 100MG on May 31st 2017, after week 1 then my Platelets went up to 88.000, by week 2 the fell to 82.000 (from memory)

For comparison my Platelets were 27.000 starting Rituxamab and did rise after week 1 to 57.000.

I discovered today at my third infusion that my Platelets fell from the 57.000 to 28.000 in the last week. I won’t know until my next infusion (the last how week 3 goes, and I guess it’ll be a further week November 14th (ish) before I know how all four went then.

I hope you are feeling better?

10.000 is very low (to me) I bruise a good bit in low 20’s and doing stuff, so can only imagine what lower would bring.

The hospital I go to is very good the staff and specialist I feel very lucky.