Nplate following Rituxin

Well, its 3 years and 8 months since my last treatment - and it seem the platelets are spiraling down again

As a quick recap (see thread Rituximab Drug as second line intervention for full details) I dropped to <5k platelets in Dec 2013 as a first timer to the world of ITP. I was hospitalized and started on a course of prednisone (135mg), given a vast quantity of IVIG (Kiovig I think it was) but failed to respond. Finally they started me on a 4 week course of Rituxan (called Rituximab here) which I responded to very well (platelets hit 250k and stayed there!) That said they have no idea of the cause of the ITP.

Following that bout I've been fine until now. Last month at my regular check-in I scored a 97k, and today its a 66k.

The Consultant has suggested that I consider Nplate as the next course of medication (although hes recommended freezing some semen as he said Nplate can cause fertility issues - something I haven't read here?!)

I'd be interested in hearing peoples experiences with Nplate following Rituxan, or have people had a second course of Rituxan years after the first?

ofc the final option of removing the spleen has been thrown at me again, but I'm holding that back as the last resort scenario.

Guess i better pack a bag ready for inevitable two week stay in hospital lol

Richard

I refused Rituxin and went straight Nplate with excellent results. My Dr. started Nplate when I hit 74 after 5 weeks of slow steady drops following a good response to IVIG and steroid blasts. The first dose got me to 120 and after 6 weekly minimum doses of 1 Mcl/KG I hit 188. The side effects are manageable. I am happy with the course I took even tho I had to "advise" my Dr. on what the next step should be. They would have to do some pretty extensive testing to prove to me that my spleen is at fault! Side note: Are you having any dental issues, taken antibiotics recently, or have an inflammation flare up?

Well, you can do either one. The question is: Would you rather spend four days getting infusions and be done, or go in every week indefinitely for a CBC and injection? There is no end point with N-Plate. It's a maintenance drug and counts only stay up as long as you get the injection. There can be remissions, but it can take months or years. Also, N-Plate needs to be dosed to keep counts around 50k, and counts can swing a lot for a bit while you're getting stable. Counts above 50k can cause a risk of blood clots.

I'm not a big fan of Rituxan, but since it worked so well for you the last time, you could see an even better result after trying it again.

strange you should mention dental, but yes I have a cracked tooth and am currently awaiting for it to be filed and crowned. No antibiotics.

The only real change to my lifestyle in the last few months is that I got very physically active (dug up the lawn, laid a patio, renovated the garden) which left me serve cramps and joint pain, for which are I am on tramadol (not an NSAID).

I also started taking a multi vitamin tablet and a 'joint ace' tablet.

Don't suppose there's any research out there that shows vitamins/minerals can lower the count??

Only anecdotal stories. I guy in Vermont stopped Co-Q10 and returned to normal, and others took another supplement and got ITP. It just takes something (anything) to drive a reaction that fires up your antibodies into overdrive. I was told that quinine will lower platelets so stay away from the gin & tonics! I reversed everything I was doing and taking but kept dropping anyway. I had a abscessed tooth removed but that did not affect my counts as I hoped. I had cramping in hands and feet before diagnosis and was using tonic water. I had taken antibiotics for that tooth. I had a badly inflamed frozen shoulder. I was exposed to insecticides. Who knows...

Quinine-induced thrombocytopenia is different than ITP. It usually happens rapidly and can be severe. A person has to have certain antibodies in order to experience a platelet drop, and once the person stops using it, counts generally recover quickly.

"The antibodies responsible for quinine-induced thrombocytopenia (QITP) are immunoglobulins that usually recognize the VWF or the fibrinogen receptors glycoprotein (GP) Ib/IX or GPIIb/IIIa. Quinine-dependent antibodies are notable by the fact that they have no significant affinity for the platelet antigen unless the drug is present at therapeutic concentrations. Typically, patients with QITP present with severe thrombocytopenia (platelet count < 10 × 109/L) of abrupt onset after a variable period of taking quinine; they often have petechiae and mucosal bleeding. After cessation of the offending drug, the platelet counts usually increase to above baseline levels generally after a week but occasionally may require longer recovery periods."

www.bloodjournal.org/content/117/22/5975?sso-checked=true

Vitamins and minerals should not cause counts to drop, but some supplements can. As for antibiotics and insecticides, my opinion is yes, they can trigger ITP.

wow, umm I didnt even think of those. I take CoQ10 and L-carintine as part of my gym routine. Guess they better stop immediately then. So do you think Nplate or second round of rituxin? I mean I got 3 years 8 months out of the first round...

Before you stop the supplements, research the ingredients to see if they can affect platelets.

The treatment decision is up to you. As I said, it's a matter of one weekly treatment for four weeks or weekly CBC's and shots indefinitely. If you work out hard at the gym, N-Plate might not be the best choice. Counts should only be around 50k and they can swing wildly up and down while trying to get the dose right. That can take weeks or months. Some doctors do not understand how dosing works and that can cause counts to be erratic.

You might want to read about N-Plate before making a decision.
www.nplate.com/?WT.srch=1&utm_source=bing&utm_medium=cpc&utm_campaign=2016%20Branded%20Desktop&utm_term=nplate&utm_content=Brand

You asked "Nplate or second round of rituxin?" Sorry, I can't advise you on that. Stock tips, how to fix you weed trimmer, ok. But treatment choices I can only share my experience.

thanks Sandi, I didnt realise the nplate was a forever type treatment Think that pushes me back towards the Rituxin, I mean I got over 3 years on the first treatment it must be worth a second shot.
As for the gym I had to stop as I was getting too exhusted, guess I know why now
thanks for everyones stories on treatment, I'll see how it goes with the next count.

Is Nplate really that expensive?!?! 55k a year (source: www.medscape.com/viewarticle/706262_10 )

Thats insane!

I wouldn't say that it's forever, but you have to keep using it until remission occurs or you decide to try another treatment. Yes, it's pretty expensive and some insurances won't cover it.

N-Plate can be a great treatment for those who don't respond to other treatments because it has a good success rate, but again, you have to keep using it. You could also consider Promacta. It's along the same lines as N-Plate; it causes production of platelets instead of addressing destruction like other drugs. Promacta is a daily pill and is less of a hassle than N-Plate. It also has its downside though in that you have to find the right dose to keep you around 50k.

rcarter, about your consultant and the Nplate consideration. Was he just noting that NPlate is another alternative besides Rituxan, or, that NPlate would be preferable to Rituxan? Seems like the former would be true and the later, not so much - as Sandi describes. Your previous long and full Rituxan response is encouraging and, from what I've seen, a typical path forward if counts collapse again.

I was looking through your previous posts. Three year partial steroid remission, loss of steroid response, weak/good IVIG response, and then the full Rituxan remission. Oh my what a gambit. I'm sure you realize that your present count could hold this level for some time just as it did back in 2010 through 2013, if I have the timeline right.

On another count crash, just as before, a response to steroids (eg dex pulse) could give you another partial remission. Or, with another no steroid response you could be in a pickle again. In that case I wonder about some other possible options besides Rituxan. Possibilities based on the ITP response table I have created. It looks like a row 1 and a row 2a combination fits this situation. Be aware that Nplate/Promacta has some really amazing remission qualities for some (row 2a and 2b). A full or partial remission seems possible if you tried one of those drugs then.

Here is a really odd ball idea. Next time you see your consultant, ask him if he'd give you a one time shot of a really low dose of Nplate. One dose just to see what happens. See if it might kick you out of the current partial remission count and put you back into full remission count.

You said "Is Nplate really that expensive?!?! " Mine is actually higher than that. $3800 a week for the CBC + injection. However Medicare and supplement are paying 100%. A steroid blast cost about $10.

thanks, it works slightly differently over here (Ireland) we have to pay (as a family) the first 140 euros a month of any prescription drugs - no medical insurance will cover that or even copay it. Then its 40 euro a week for the blood count, of which medical insurance pays half.

So minimum I'd be looking at 140 a month plus 160 a month for counts (albeit I'd get 80 back on claim) so yea N-plate seems very expensive.

Whereas Rituxan is in-patient day treatment here (they class it as an oncology treatment) so it would be 100% covered on medical insurance. Big difference

thanks for the options, your right on the summary first time (Sept - Jan 2010) they caught me < 30k count and started me on the 135mg/daily of steroids which kicked my platelets up to around the 80k - 100k range within a few weeks (also made me put on a few stone in weight!)

I then had no drugs at all for the 3 years till 2013.

Nov 2013 I dropped to <5k and they tried the steroids again, to no effect. I was hospitalized and they started the IVIG (Kiovig) which got me some response, limited but enough to get me out of hospital. The Rituxan (once a week for 4 weeks) then kicked me up >100k count where I've stayed for the last 3 years 8 months I was even seeing >150k at some of the check-ins.

Now that I'm back on the way down the consultant suggested I consider N-Plate. He didnt make any reference to trying Rituxan again.

From what I see here most people seem happy to stay at ~50k, so maybe I'll stablise around there, if not then I think I'll *suggest* another round of Rituxan to the consultant.

The strangest thing for me in all of this, is that on each occasion my count has dropped <20k it has been Sept - Nov (2010, 2013, now 2017) - perhaps its telling me to find somewhere warmer in the winter season lol

Rcarter- I have heard of several people on the forum over the past 8 years who have had good luck with Rituxin on the second round, after a successful remission the first time. I wanted to try Rituxin again after a not so great remission the first time- my counts went to around 20-25K for 6 months. My hemo said it wasn't good enough to risk the side effects of Rituxin, so I went on to Promacta.

Thomaskm- If you are reading this, can you tell me anything about your Medicare policy that pays 100% for Nplate? That sounds great! I am with my employers insurance right now and getting help with the high deductible from Amgen's First Step program. The Amgen program in not valid with Medicare or any government funded insurance. I'm in California and am eligible for Medicare but I tell you I've tried for an entire year to find out if Medicare would pay for Nplate. I've talked to Medicare reps, brokers, and people at the cancer clinic business office- I just couldn't pin down the answer. I get complicated conflicting answers. It is covered under Part B but whether there is a copay or not is the issue. thanks

Medicare + Nplate, My experience: When I went on Medicare I got some good advice. Buy a part G. ( F is old school). I shopped and bought a Mutual of Omaha supplement . It works everywhere Medicare works, no paper work, no networks, it is seamless and affordable. I pay ZERO for my Nplate, Medicare pays $3400 a week with my supplement picking up $375. I am not real proud of this, I have always paid my own way but Medicare and Mutual of Omaha made a contract with me and I am holding them to it. Medicare deductible this year was $169, I met that Jan 5th with non ITP issues. so, Medicare + supplement = Zero $ for Nplate.

Posey, to avoid hijacking this thread with an off topic reply, I tried to quick message you a couple of weeks ago. Apparently, I didn't do it correctly. [Is the feature even enabled?]

Anyway, I have an "advantage" plan for Medicare/supplementary insurance. It pays 100% of NPlate costs. The rules say the shot must be administered in an office with a doctor on site. I'm unsure whether that's a Medicare rule or the insurance company's rule. Doesn't matter; it's doable and gets the costs paid in full.
The reason they pay is because of that rule... It's a medical treatment, not a drug treatment in pill form that the patient takes at home. If I switch to Promacta - which I may be doing soon - it will be subject to a "specialty" drug copay determined by my insurance company. I think it'll be $80 a month. Hard to swallow that pill... Literally. But it's time to try something else.

update: dropped to 32k on this weeks checkin Consultant hopefully going to see me next week and discuss what treatments.

Its so annoying not knowing the reason for the relapse grrr !!!

A Dex pulse would be quick way to see if you've got a steroid response. There is no tapering - it is slowly metabolized over several days.

Dex pulse? never had that, only steroid I've had is prednisone which failed to work last time. The dosage was mad thou as I'm rather tall and well built (read fat lol) so they gave me 140mg / day dosage.

My Dex pulse was 40mg x 4 days, I had 4 of them over 6 weeks three of which were concurrent with IVIG rescues when I was first diagnosed In late April. They worked and I peaked at 217. Talk about living life on a razors edge!

Got to see consultant today - bloods at 43k lol up 11k from last week with medication. talk about yo-yo!

going to start 2nd round of rituxin next week so fingers crossed

Update: platelets recovered to 57k (after dropping to 23K) before I started Week 1 of Rituxan, consultant decided to go ahead anyways so I am now in week 2 (today) and platelets are 109k before week 2 infusion!!

I have no idea why the platelets dropped and then started to pick up again - whilst I can't medically prove it I'm confident the decline was down to my new fitness program that included a multi vit and CoQ10 supplements. That's the only thing I stopped / changed after the platelets dropped and it appears others have some issues with CoQ10. Either that or my body just wasnt ready to go from no activity to full physical workout every day lol

See how week 2 goes

Richard

After only one Rituxan infusion? Sounds like you're got another remission in the works, heh?
Did it go this well 3 plus years ago? If there was only a way to make a Rituxan remission last longer.

just before week 3 infusion platelets were 99k so yea its looking good. Last one is this Monday, but I have managed to pick a bad chest infection - on some antibiotics but hopefully that wont affect the last go (fingers crossed

It would be nice to get 4 years this time as my works sickness runs on a 4 year rolling period and only allows 156 days sick leave in those rolling 4 years before reducing my salary in half

I also had a response after one infusion the second time I attempted Rituxan. Counts went from 20's to 150k in one week. I didn't have any more after that.

Despite the response they continued and gave me the full 4 doses. Count ended up at 129k last week. Now its just a wait and see, monitor the count over the next two weeks and hope. At least I can go back to work soon I just wish they would work out why we suffer with ITP. Even if it was bad news I think that would be better than not knowing.

Richard,
My counts started going up from the first dose. By the time I was finished my 3rd treatment, I was in the normal range and didn't think I would get the last one, but I did. Go figure, eh?
As to knowing what caused my ITP, I never really gave it a thought. When I was diagnosed in 2004, I had a suspicion as to what brought it on and asked both my GP and hema and they both said no. After that, I just dealt with it. I didn't think I needed any added stress.