New to ITP

I was diagnosed 3/25/2020, 57 year old guy - went to ER for unexplained bruising all over arms and spots on face and feet. Levels were under 2,000. Admitted to hospital...tried Steroids, IVIG while there...after 5 days, got levels to 19,000 so they released me (thank God - surrounded by Covid...didn't get it). Anyway, 4 weeks of nPlate got to 329,000. 4 weeks after last shot, levels back to 17,000 yesterday. Hematologist is suggesting Rituxin. After doing a lot of reading, having doubts on Rituxin. Any stories to share to help my decision - good or bad - I want to hear them all. What are my other options if I don't do Rituxin? Thank you.

ashpublications.org/bloodadvances/article/3/23/3829/429213/American-Society-of-Hematology-2019-guidelines-for

I did Rituxan in 2011 and have been in remission since. Counts started going up with the first dose.
There are more options now than there was back when I was diagnosed. Good luck with your decision.

Thanks mrsb04 and CindyL. Good results on the Rituxan. I'm just concerned about the b cells getting knocked out and being more susceptible to infections...especially Covid.

NSFOG

One thing I will tell you is that in general doctors are more concerned about numbers than symptoms. Over here in the UK treatment is rarely started with counts above 30. I wish I could maintain a count above 20 without medication but that doesn't seem to be the case unfortunately as I become far too symptomatic.

Below is a cross posting I wrote on a previous thread a couple of months ago when someone newly diagnosed asked a question about being offered Rituximab AKA Rituxan early on.

I wasn't offered Rituximab initially and as a nurse if I had been I would have declined it at such an early stage. It is not without risk or side effects. I've cared for patients who have used it to suppress auto immune inflammatory conditions but they were full of cold permanently after taking it which put me off. However that is not to say I would never try it. I may have to one day. It would be preferable to a splenectomy which I am never having.

Poseymint is right to warn about treatments being worse than the condition.
I started on Prednisolone as 1mg/kg 5.5 years ago which worked almost instantly from count of 12 to 87 in under 72 hours. I am still weaning off the wretched stuff now. It is no good as a long term treatment as I need 20mg daily to keep count above 20. High doses make me absolutely manic/exhausted and incapable of functioning as an intelligent human being. Withdrawal symptoms ++ at dose drops so have had to taper at snail's pace. Am now down to 1mg/day.*
I do take an occasional boost if my count hits the deck which it does if I contract a virus or undergo a major stress.

I tried various treatments before starting Eltrombopag AKA Promacta/Revolade 3 years ago.
- Azathioprine AKA Imran (partially successful but screaming diarrhoea once dose increased so stopped it).
- MMF AKA Mycophenolate (poor response until on maximum dose but depression and very low moods like never before).
- Fostamatinib AKA Tavalisse (no side effects but didn't work).
- Romiplostim aka N Plate (counts swung all over the place anything from single figures to >200, gave it up as a bad job when a count of 6 resulted in the cancellation of planned surgery).

* I took my last Pred. tab 8 days ago having done 5mg/week for another month followed by 3mg/week for a further month.

Knock on wood so far I haven't picked up any infections since doing the Rituxan. I am also spleenless and haven't gotten sick any more than I did before.
As for the Covid, when I do have to go out in public, I wear a mask. My Province has a very low number of cases, only 121, with one still active. And that isn't in my city. My mother lives with us, so we take lots of precautions.

Have a friend who used Rituxan when they were giving 8 infusions, can't recall how long it has been though - she has not been sick any more than normal [in fact she's darn healthy], it put her in remission and also helped her RA. Her platelet count is good.

Can't speak for myself - I've only has prednisone and WinRho

NSFOG,

I was diagnosed in May 2019 with counts in the 20's. I wasn't showing major symptoms except for some bruising and a few petechiae spots. My first Dr really pushed Rituxan, but I refused for the same concerns that you have. I did a round of Dexamethasone that did nothing for me. I then went with a few months of Prednisone that got my counts up to 118. The only problem with the Pred was the side effects were awful. I weaned off the prednisone and waited and watched for about 6 months as my counts slowly dropped into the 30's. I really didn't have any symptoms, but I could see the writing on the wall as my platelets just kept slowly dropping. I then decided to try Doptelet ( avatrombopag) a few months ago with my new Dr. My counts have gone up to the 70's. Although I'm still not back to the normal range, I am much less stressed knowing that I am not close to the danger zone. It is my understanding that you don't really want to get back to the normal range while taking Doptelet because of the risk of stroke while having too many large (new platelets).

You are in the right place for support and helpful information. The people here are great and have a lot of information and experience. It seems everyone reacts differently with these drugs and it may take some time to figure out what works best for you.

You don't really want to get back to the normal range on Eltrombopag or Romiplostim either.

Thanks everyone...good info and very supportive.

Question mrsb04....why don't you want to get to normal range on romiplostim or Eltrombobag?

Same as Avatrombopag, new platelets are big and sticky ergo increase clotting risk.

Ahhh...got it. Something else to look forward to!! Thanks.

Does anyone else get a brownish tongue and a 'bloody' taste?

Not sure about brown tongue, but used get the bloody taste sometimes. You could have bleeding gums?

Thanks. Its weird...never see blood but sometimes a brownish tinge in my saliva - mostly in the morning.

I'm late to this discussion, sorry. My Rituxan experience isn't something I usually relate to newbies, because it's still scary even to me. But since you asked for both the good and bad, you can read my Rituxan experience here ~
pdsa.org/discussion-group/7-treatment-general/30010-prednisone-self-help-rituxan-nightmare.html?start=0

The ONLY thing I want you to take from my story is to not be cavalier about this drug. It has helped many people in this forum with their disease. Others have not been helped at all, but neither have they been harmed like I was. Just be aware that side effects don't always happen to the "other guy", and you have to be prepared for the consequences if they happen to you.

Also, just so you know... NPlate isn't a drug that's used for a set period of time, discontinued, and then expected to have lasting effects. It's meant to be used weekly for life unless a remission occurs. It's no wonder your platelets dropped when you stopped it. That's what would happen to most of us. If it worked to bring your platelets up, the dose should then have been tweaked to a point where it holds your count to around 50. I've been taking NPlate for years without any side effects. I just wish I'd never tried to stop it by turning to Rituxan. Bad lesson learned.

Thank you Midwest. That's a horrible experience...I really appreciate being able to read it. Definitely gives me more insight to Rituxan. I hope you're doing ok now.

Lot of pondering to do...

We'll be interested in what you decide. And of course, wishing you the very best outcome!

Decided to try Rituximab (Truxima). Went in today to start treatment. However, platelet levels were 850 (had nPlate injections last week and week before). Hematologist canceled treatment today and will retest next week. Cant imagine high platelets are good either?!?

It's absolutely true, especially when taking NPlate. As platelets age, they shrink and become less efficient. In normal function, the old ones are slowly replaced by new, and the mix keeps things in check. The onslaught of new ones produced by the drug's effect are extra fat and sticky, making them far more efficient at clotting in a bad way. A brain clot is every bit as disastrous as a brain bleed.

Not to second guess your decision... but since you seem to respond so well to NPlate, what made you decide on Rituxan instead of continuing NPlate? Maybe you're one of those who doesn't like the idea of weekly treatment instead of four times and done... ?

Thanks for the info. Hopefully they'll drop. Agreed...I do respond well to nplate, however, I really can't see myself making weekly or biweekly trips to hospital. Not taking Rituximab lightly...still somewhat scares the hell out of me!

I can't believe people still have to travel for NPlate injections. Over here in the UK patients self inject. The only down side (if it works) is that the packaging takes up a lot of fridge space.
NSFOG My goodness I'd be having kittens if my count was that high. I get twitchy if it goes above 100 which fortunately is very rare. Have you had any thoughts about Eltrombopag or Avatrombopag instead of NPlate.?

I know 850 is high but dont know what is considered 'dangerously high' so I'm not too concerned yet. Maybe a couple of scotches tonight will knock'em down a little!

Maybe Eltrombopag if rituximab doesn't work.

850k is not a count I would want to have, nor make light of. Who knows though NotSo by now your count could have decreased some. The normal range is usually 150,000-450,000 [but depending on the lab that can vary].

I'm too lazy to look through all the posts - what was your count before your last couple of N-Plate injections?
It is dangerous for a count to jump high quickly - what did your hematologist say about that count other than no Rituxan today?

Anne I know nothing about N-Plate - could it be that an in-office injection is required so that a count can be done before hand to see if injection is needed?

It was 17,000 prior to my last 2 nplate shots....192,000 last week after the 1st shot. Certainly didn't anticipate such a high level today, after last weeks shot. After my initial 4 dose round, was at 329,000 then over a 4 week span dropped to the 17,000. Not sure what's going on.

Hematologist wants to recheck next week and reassess course.

Had a tooth pulled yesterday, I dont know what/if any effect that had.....ITP sucks!

NSFOG..unstable swinging counts is why I gave up on Nplate. Much more stable on Eltrombopag. I've had teeth removed but never affected my count.

Melanie..more likely due to insurance companies restrictions in my opinion. UK NHS patients get blood tests before injecting themselves.

mrsb04 wrote: Melanie..more likely due to insurance companies restrictions in my opinion. UK NHS patients get blood tests before injecting themselves.

The organizations paying for the treatment no doubt have some say about the rules, but I don't know their reasoning. I know my insurer wants a doctor on premise when the injection is given. This is a good thing as I see it. It makes it a "medical treatment" - which is fully covered - vs. a self-administered "pharmaceutical drug" for which I'd be billed an unaffordable portion. Also, I'm not convinced the average patient would have the ability to measure, mix, and prepare the syringe. Injecting is the least of the process. I think this might be the bigger concern of the insurance companies.

I get my blood tested immediately before the injection, right in the same office. If you still have to go somewhere to get the blood test, I don't get what makes it more convenient to inject at home.

NotSoFatOldGuy wrote: It was 17,000 prior to my last 2 nplate shots....192,000 last week after the 1st shot. Certainly didn't anticipate such a high level today, after last weeks shot. After my initial 4 dose round, was at 329,000 then over a 4 week span dropped to the 17,000. Not sure what's going on.

I'm 70 years old and no stranger to the medical world. One thing I've learned is to never allow the MD to take the reins while I sit in the back. I learn as much as my old brain can absorb about the condition and its treatment before I agree to anything. I have to say... I'm not convinced by what you say that your MD is as knowledgeable as he could be about NPlate. As I said before, NPlate is not meant to be given as a rescue treatment... Given a few times and then stopped after the count rises. Is that what you mean when you mention your "initial 4 dose round" of NPlate? Again, this is a weekly treatment for most people. (Someone here gets a small dose every few weeks. It's working for him, but it isn't according to the mnfr. protocol and wouldn't for the average patient.)
Since your count rose so high on just two injections, it suggests that the dose might be too high for someone starting treatment. And then because that's "overworking", it has to be stopped in a short time - which is exactly what causes the crash.

You might want to read Amgen's patient information on the drug so you know whether your MD is on track.

Hi Midwest, I certainly understand where you are coming from.
For me, I go to the lab and then go home and self-inject. I prefer it. Having blood drawn takes at most 30 mins. It's quick and easy. Before I had to get labs, go to the infusion area, wait an hour for lab results, then wait for the pharmacy and nurse to get the Nplate ready... It took a long time and had to deal with more people.
Really depends on personal preference and insurance/costs.

Midwest6708 wrote: I'm not convinced the average patient would have the ability to measure, mix, and prepare the syringe.
If the instructions in the US are as well written as the UK ones I suspect the average 5 year old would be able to prepare the the syringe. Plus there is a step by step video available to watch.