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TOPIC: Fostamatinib, low dose prednisone, and high dose nplate triple therapy?

Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 3 weeks ago #63796

  • jasondema
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Hello All,

I have posted before about starting Fostamatinib after low dose prednisone and nplate generated minimal results. Doctor ordered the drug. Well...something interesting happened last week and now this week.

On June 15th...platelets were at 31k after 10mg on prednisone and level 10 on Nplate (highest dose possible). Doctor gives me one last high
dose N-Plate shot along with orders to take 10mg of prednisone the whole week leading up to my next visit on June 22nd.

On June 16th, I start Fostamatinib 100mg and on this same day I caught a very bad sunburn on the whole front of my body that lasted for beyond a
week.

On June 22nd ..I get a platelet reading of 158k. (While on 10mg prednisone, 100mg of Fostamatinib, and highest dose of NPlate.)
Doctor says, "Lets remove the Nplate and prednisone and see if it is only the Fostamatinib because Nplate and Prednisone was giving you small platelets counts over the past 6 weekly visits. I told the doctor that it might be the sunburn and not the Fostamatinib because maybe the sunburn created an immune response to stop destroying my platelets and to start healing my burn.

Today, June 29th...on Fostamatinib alone for 1 week along with a healed sun burn...my count was only 8k. Doctor continues with Fostamatinib but puts me on 30mg of prednisone daily until next appointment on Friday.

So...do you think that my high count was a result of:

A.) Triple combination therapy (10mg of prednisone, level 10 Nplate, and Fostamatinib)
B.) The sun burn immune response
C.) Fostamatinib alone
D.) Other idea that i am not aware of

Do you think my new low count of 8k is because I removed the Nplate and I crashed..or was it the removal of both Nplate and a failure to taper the
prednisone from 10 mg to possibly 5mg. I have been on Prednisone since October 1, 2017 and I am dying to get off that drug.

Please post your thoughts...by the way..if you do not know my story....

I still have my spleen, I failed with Rituxan by itself, and NPlate by itself
I respond well to IVIG and prednisone gives me a subtle response by itself that puts me around 20 to 30k readings at best when used by itself.
Diagnosed in May 2017. I have had ITP for 13 months so far.
I had a bone marrow biopsy in January and it indicated Primary ITP only.

Triple Therapy:
Prednisone suppressed the immune system (I was on 10mg daily)
NPlate promotes platelet production (I advanced all the way to the highest dose possible...level 10 weekly shot)
Fostamatinib 100mg once in morning and once at night pill that prevents the destruction of new platelets by stopping the early processes of platelet destruction. (SYK Inhibitor)


All thoughts are welcome. What do you suggest I tell my hemo? What is your thoughts on this?

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 3 weeks ago #63798

  • Sandi
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Hi Jason. The problem with multiple treatments is that you cannot possibly know what is causing what. My thought: Stopping Prednisone abruptly like that could have contributed to the drop since you said that you do have some steroid response. Stopping N-Plate quickly can also cause a major drop. I'm not sure if the sunburn had anything to do with it or not. It's possible but regardless, you can't treat with frequent sunburns so strike that. :)

At this point, you won't know if Fostamatinib is going to work alone for you or not if he keeps adding a drug. One week is probably not enough time on Fostamatinib to know for sure. If you don't have a lot of symptoms with lower counts and you really want to try Fostamatinib, you might have to ride out the lower counts for a few weeks to see what happens.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 3 weeks ago #63801

  • mrsb04
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As Sandi says being on cocktail of drugs makes it very difficult to know which, if any, are effective.
As for abruptly stopping Prednisolone when you have been on it for that length of time is completely against protocol and extremely dangerous. You are lucky you didn't go into an adrenal crisis.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 3 weeks ago #63807

  • Hal9000
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Oh good, a 158 ! Shouldn't be too long now. Bad part is, this is all new territory. Uncharted waters. Got Fostamatinib in the picture.

Do you suppose this your doctors first rodeo with Fostamatinib? That was kinda barbaric to cold turkey both Pred and Nplate after only one week on Fostamatinib. I dunno. I'm sure this is going to be a learning experience for all. It does seem kinda obvious to me to put them both back and then taper each as desired and as counts dictate. Tapering steroids first sounds reasonable. If tapering slowly is required then jockeying with Nplate may have to go first to keep counts down and the chance of a clot low. Blood clots are bad news, well worth avoiding.

I looked up Fostamatinib treatments during trials. They talked about going from 100mg to 150mg after 100mg proves to be inadequate for four weeks. Perhaps the higher dose will be needed. With any luck, over the next 3 weeks Nplate will need to be tapered away.

To this point I've thought that you were a single row 4 antibody because of the high Nplate dose needed. That Fostamatinib alone would be enough. Time will soon tell if Nplate proves to be required too.

Just off hand, wouldn't think the sun burn played more than a small part.

Hope this helps.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 3 weeks ago #63818

  • jasondema
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Let me be the first to tell you that I am probably the only one on earth with ITP that was exposed to a triple therapy for 1 week involving Nplate, prednisone, and Fostamatinib. You are correct. This coming Friday will be my 3rd complete week on Fostamatinib. He said that if he does not see above 30k on Fostamatinib with prednisone assistance then he will place order for 150mg of Fostamatinib. I think the crash happened because of the removal of Nplate and prednisone. I think I need both Nplate and prednisone to keep me above 20k on a consistent basis.

I needed to take 30mg of prednisone to get me above an 8k platelet count which is the result I received on Friday. I will be on 30mg of prednisone daily until this coming Friday morning. I could not go by Sandi's recommendation of riding out low numbers being prednisone and Nplate free while hoping that Fostmatinib all of a sudden kicks in. If my body was generating 20k or above platelet counts without any Nplate or prednisone..then I will have utilized Sandi's recommendation.

By the way...I will be concerned about blood clots if I had a platelet count above 200k (only once did I have this via IVIG) if he decides that the triple therapy of Nplate, Prednisone, and Fostamatinib is yielding higher and higher counts above 150k. For now though...I have no concern about clotting issues.

I agree that my hemo should not have had me go cold turkey on the prednisone and the Nplate. I was on Nplate since January increasing from level 1 to level 10. I was on Prenisone since the beginning of October and I was able to taper all the way down to 10mg while on level 10 Nplate. Anything beyond 10mg prednisone and I crashed.

While on Fostamatinib 100mg...Should the doctor have kept me on a triple therapy for another couple of weeks if I stayed over 150k weekly platelet level .........

then taper down to 5mg or 7.5 mg of prednisone..... while also tapering me down to level 9 Nplate and so on with the tapering process?

OR

Is the Hemo right when he decided to remove all variables (Prednisone and Nplate) in order to truly determine if Fostamatinib alone generated the 158k platelet count?

Finally...if you were my hemo..knowing that as being my hemo..you told me to take 30 mg of prednisone for 1 week along with the Fostamatinib of 100mg twice per day to get my count which was 8k to a safe range (30k and above) for my Friday visit......

What will you do if my count on Friday ....knowing my situation...is .....

Above 30k? (Please provide what your recommendation might be)
Below 30k? (Please provide what your recommendation might be)

By the way...when I say recommendation.. I mean..contingent upon my platelet count this coming Friday...would you increase or maintain my prednisone levels, keep me off or put me back on Nplate, increase or maintain Fostamatinib levels. Should the doctor see the Fostamatinib process all the way through without reverting back to the triple therapy or....should the doctor revert back to the triple therapy...or should I stay on my current dual therapy of Fostamatinib and Prednisone.

Please provide your hypothetical approach to a result this coming Friday for an above 30k platelet count and your approach for a platelet count below 30k. Everyone's feedback if very important and I might provide your suggestion to my hemo this coming Friday.

Thank you.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 3 weeks ago #63819

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Treatments should never be stopped abruptly, especially Prednisone and the TPO's. I can see missing a week of N-Plate based on the 158k, but he should have kept you on the 10 mg's of Prednisone or tapered to 5k.

The kitchen sink approach is rarely successful and adding and taking treatments away will only cause wild swings in counts in both directions. I've seen it happen far too many times. I guess if counts are good on Friday, taper Prednisone by 5k and don't use N-Plate. If it were me, I wouldn't go with the triple cocktail at this point. Less is always better and it's the only way to find out if Fostamatinib is working for you.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 3 weeks ago #63821

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I agree with what others have said, the doc should have tapered both Nplate and prednisone- especially prednisone. As MrsB said, thats very dangerous. I have been on Nplate for several years and my counts will crash if my dose is lowered too quickly. Twice my dose was reduced from 495 to 450 and my counts crashed to 3K and 5K. My hemo said thats impossible, such a small dose change would not have made a difference. But I know thats what happened. The crash was just the initial reaction to the change- then the next week on the lower dose my counts bounced back to 66K. Anyway, as Sandi said, counts will swing wildly if you make big dose changes on Nplate. And they will crash if you withdraw prednisone abruptly.

I think your counts will likely be above 30 on Friday. If they were below 30 then wouldn't that mean that the prednisone wasn't working? I think the 30mg pred will bring them up (just guessing). I also agree w Sandi that you should not go back on Nplate. It is against the manufacturers recommendations. Amgen says if you are on the highest dose 10 for so many weeks and your counts do not get up to 50K then you should discontinue Nplate. I would just keep on with the pred and fostamatib. If counts are over 50K then I would carefully taper pred down to 25mg.

Have you tried Promacta? It often works for people when they fail Nplate. From what I know it has a better chance of bringing counts up than Fostamatinib. I believe Promacta has an 80% success rate, plus its been on the market longer so side effects are better known. Plus I think its cheaper- cost of Promacta is around $5000 a month whereas Fostamatinib is about $10,000. per month. I may be wrong, thats what I read. Good luck! hope fostamatib works for you!

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 3 weeks ago #63822

  • mrsb04
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The aim of any ITP treatment is to get a platelet count of around 50. Counts should not be normalised in ITP patients. Too many big juicy immature platelets floating around one's system equals high risk of clots.

Personally I would not do Romiplostim (N Plate ) again. Counts swung all over the place. I never stabilised on it. One week I could be over 100 then the next below 20. Gave it up as a bad job when my count dropped to 6.

I did the RCT for Fostamatinib and failed that miserably but of course I may have been on the placebo. However once going onto the open label trial it made no difference at 150 mg twice a day. Never reached the magic 50.

I'm now on Eltrombopag (Promacta) which has taken time to get the dose sorted out, now on 50 mg a day with counts of 40ish, which suits me fine.

As for pred tapering there is loads on this site about it. Guidelines are reducing down to 7.5 mg a day can be done fairly quickly but after that is has to be much more gentle to give your adrenals time to wake up, because if they don't the worst possible outcome is death.
The daily dose should be reduced my 1mg/day once a month. Ergo if you are lucky and can cope with tapering it will take at least 6 months to be get off the wretched things.

I have been tapering for over a year this time, my 3rd attempt to rid my self of them. I was stuck at 3mg a day for 9 months whist trying to sort my Eltrombopag dose out. 2 weeks ago I went to 2.66mg a day (3mg/3mg/2mg), the lowest dose I've been on in the last 4 years.
Today I have dropped to 2.5 mg a day (3mg/2mg). It's a long tunnel with a chink of light at the end of it.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 3 weeks ago #63825

  • Hal9000
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Jason, after trying to put some numbers to it all (complicated math), it seems that 158 was actually quite good - assuming a good Fostamatinib response occurs in three weeks. Based on the trial dosing protocol I mentioned earlier, three weeks to respond is probably the norm. Uncharted waters here.

I wonder if your doc thought he had the cat in the bag with the 158 and that prompted the cut of both Nplate and Pred. But now, I wonder if his plan is to keep you on 30mg Pred until there is a response from Fostamatinib. Then if that doesn't occur, add back in Nplate starting with a 1 dose. Normal Nplate protocol.

So, the question for me is how many weeks does it take for a Fostamatinib response for a 'good' responder?

If a good Fostamatinib response occurs in two weeks then you've missed the boat already - ignoring immune system dose rebounding as others have described here. Count should continue to be low here in a few days and 150mg Fostamatinib is the next step.

If a good Fostamatinib response occurs in four weeks then one would expect good counts in another week. Hard to say what might happen this week because the Pred contribution is uncertain. When Pred is eventually tapered away then counts should fall to some lower number.

If a good Fostamatinib response occurs in three weeks then, extrapolating the 158 single data point, you're likely on target for a nice count here in a few days.

To try to answer your question, here is my guesstimate for Friday:
- Based on the 158 two weeks ago, expecting a count between 50 and 100
- If count is above 50, large step (10mg?) dose reduction of Pred, continue Fostamatinib
- If count is below 50, continue Pred, order 150mg Fostamatinib for possible start next week
- No reintroduction of Nplate until 150mg Fostamatinib proves insufficient

If I was your doctor, I'd be discussing your case with someone familiar with Fostamatinib dosing a lot.
Hope this helps.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 2 weeks ago #63848

  • jasondema
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Hello All,
My count went down from 8k to 5k as of this morning. Remember, my hemo had me on 30mg of prednisone since last Friday along with being on 100mg of Fostamatinib.
My hemo decided to keep me on 30mg of prednisone and 100mg of Fostamatinib ...AND...he added level 10 Nplate. I just took my shot. So I am now back on triple therapy. He was not concerned by putting me straight back to level 10 Nplate after being off of it for about 2 weeks. Furthermore, he said that NEXT FRIDAY...I will be on 150mg of Fostamatinib, which is the only other dose available for this drug. For now...I am on the last week of 100mg of Fostamatinib. The hemo could not upgrade me to 150mg of Fostamatinib without going through the 4 weeks at 100mg first. This will be my last week on 100mg.

I am getting a complete blood count on Tuesday followed by my normal Friday hemo appointment which includes receiving an NPlate shot. Please keep in mind that my hemo has an IVIG order on standby for Tuesday..just in case we do not see an increase in my platelet count.

My thoughts are that I am very frustrated that 30mg of prednisone with Fostamatinib did not move my count at all. I highly doubt I am a responder to Fostamatinib at this point. Lets see if the triple therapy of Nplate, prednisone, and Fostamatinib work. I still have my spleen though. My hemo sent over my information to London because I will be setting up an Indium scan as a precursor to a potential splenectomy. The only sure thing to boost my platelets has been IVIG. I tried Rituxin...nothing. Prednisone by itself...nothing. Promacta...at 50 and 75mg..nothing...Prednisone w/ NPlate kept me consistently above 20k but I need to get off of the prednisone. I guess we will see if the triple therapy will work. Hal....I think I am the one case that is beyond your table of treatments. I am at a loss for words right now.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 2 weeks ago #63853

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Jason:

Having the Indium prior to splenectomy is a good idea. Keep in mind that it will not really tell you if a splenectomy will be successful, but it can tell you if it will be unsuccessful. If there is a high percentage of destruction in the liver, you'll know that you might as well save your spleen. However, even a high percentage of splenic destruction will not guarantee success. The liver can (and sometimes does) take over destruction. We've seen people here have a splenectomy fail even when the odds looked good. It is a great idea though because it can prevent loss of a spleen.

As for the treatments....I hope you can get it figured out. Until treatments are consistent, it's hard to tell which drug is doing what and wild swings in counts can occur.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 2 weeks ago #63874

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jasondema wrote: Hello All,
My count went down from 8k to 5k as of this morning. Remember, my hemo had me on 30mg of prednisone since last Friday along with being on 100mg of Fostamatinib.
My hemo decided to keep me on 30mg of prednisone and 100mg of Fostamatinib ...AND...he added level 10 Nplate...
Furthermore, he said that NEXT FRIDAY...I will be on 150mg of Fostamatinib, which is the only other dose available for this drug...
I am getting a complete blood count on Tuesday followed by my normal Friday hemo appointment which includes receiving an NPlate shot...
My thoughts are that I am very frustrated that 30mg of prednisone with Fostamatinib did not move my count at all...

5k, that's disappointing.
I found some data on the Fostamatinib trial. Two weeks is a typical response.
Phase 3 Data of Fostamatinib Published in American Journal of Hematology
"Median time to response was 15 days (on 100mg bid), and 83% responded within 8 weeks."

Sounds like doc has gone back to Fostamatinib & Nplate combination treatment success - with a little Pred for good measure. I guess, act like a couple of Nplate doses were missed and just continue with a dose of 10. If I'm following this properly, shouldn't that put you back around 158 (after a week) again? Pred is a little higher but Nplate is restarting from missed doses.

Ok. One hiccup due to a drug dosing learning experience. No doubt, I'd be frustrated and upset. All I can say is, looks like a potentially good recovery. I'm hoping for the best on Tuesday.

Keep in mind. Fostamatinib and Nplate drug treatment combination doesn't seem to be an uncommon occurrence. See time marker 2:09 through 2:47 of this video on Fostamatinib. Note that Nplate is a 'thrombopoietic agent'. So is Promacta.
www.youtube.com/watch?v=DBJ5SswU8tI&app=desktop

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 2 weeks ago #63886

  • jasondema
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Hello Hal,
I am doing a complete blood count tomorrow morning followed by my regularly scheduled hemo appointment that I do every Friday. Every Friday morning, I get an NPlate level 10 shot along with a complete blood count. As far as numbers go...I do believe that my numbers will be higher than 5k tomorrow. It has only been 3 days that I have been back on triple therapy (Nplate, Fostamatinib, and Prednisone 30mg daily). I am not anticipating anything significant this week (tomorrow or Friday) in regards to a much better platelet count because I believe that it might take another week for the NPlate to truly kick in. NPlate responses will usually take more than 1 week for true responses if I can recall but I might be wrong about that. Since I received my first NPlate shot this past Friday after missing 2 weekly doses.......I don't believe I would see a 158k count like 3 weeks ago. I want to taper down from 30mg of prednisone back down to 10mg of prednisone as well..while on triple therapy...but we need to see what my platelet count is tomorrow and Friday in order for the hemo to select the proper path. One more thing Hal...If my counts do not go back up significantly on the triple therapy...would you consider my "sun burn" theory a possiblity.

The theory states that I got a bad full frontal body only sunburn the same week I started triple therapy. I theorized that my platelets shot way up to normal briefly for 1 week only because the immune response was to heal the sunburn as opposed to destroying platelets. Once the sunburned healed...my platelets shot way back down again because my immune response was to refocus on destroying my platelets.

I will give everyone an update tomorrow. Thanks.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 2 weeks ago #63892

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Sun burn contribution? I dunno. One never knows with unknown influences. With combination treatments, it's hard to know which way is up. There are so many variables going on. Past experience is the only guide.

Nice points you put forward. It sounds like you're thinking quite a bit about your treatments. As others have said, you are your best advocate. Challenge me, challenge others, and especially challenge your doctor.

83% respond in less than 8 weeks. Hmmm. That's a potentially long time. A lot of the immuno-suppressants, except steroids, take that much time.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 2 weeks ago #63900

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Hello All,

So my platelet count was 6k today. Hemotologist gave me 2 bottles of IVIG. I will be receiving the 150mg of Fostamatinib via priority mail to my house tomorrow and I will begin to take it tomorrow once in the morning and once at night. Hemo is keeping me on 30mg of prednisone, level 10 Nplate, and 150mg of fostamatinib (triple therapy). All of this will be in my body along with the IVIG that I just got today. You may want to call this quadruple therapy. I have a feeling that the IVIG will bring up my platelets for one or two weeks. My hope is that the NPlate kicks in so that I can taper down on the prednisone...hopefully back to 10mg. I am beyond frustrated. My doctor resent my medical paperwork to the doctor in London so that I can go for an indium scan. By the way....I did mention to my doctor that Etanercept 25mg brought about 3 successful remissions in prior individuals and I asked the hemo to research this for me. I may consider this drug. Getting desperate and trying to avoid a splenectomy. My next appointment is Friday for my CBC and NPlate shot. Platelets should rise at least above 10 with the IVIG by Friday. I hope. Thanks.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 2 weeks ago #63902

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Oh wow. The cold turkey with Nplate isn't turning out so well.

Etanercept/Enbrel, that is a new one for me. This seems to be the abstract on the subject.
" Complete recovery from refractory immune thrombocytopenic purpura in three patients treated with etanercept "

With that earlier 158 response, my money is on Fostamatinib saving your spleen. All in.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 1 week ago #63930

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Hello All,

As expected I got a 150k platelet count ONLY because of the IVIG I received on Tuesday.
Now the twist....

My hemo said that he will not giving me any more NPlate after receiving my first shot last week after going without for the prior 2 weeks. He said that ....after he did his research since our last visit..it is not advisable to be on both Nplate and Fostamatinib at the same time. He said that this can potentially cause a blood clot ..potential stroke and he did not to risk it. He said that being on Nplate at the highest level, 30mg of prednisone daily, 100mg of fostamatinib twice per day, and a recent IVIG infusion on Tuesday is just too much on my body all at once.

Furthermore, he said that the pharmaceutical company, Rigel..did a 4 week washout where in which it was determined that TPO's like Nplate/Promacta and Fostamatinib do not have any use being taken together as a "combination therapy".

So...his plan is as follows.....30mg of prednisone daily until next Friday and 150mg of Fostamatinib twice per day effective tomorrow morning. IVIG should keep my levels good for a few more days..maybe a week. Hemo wants to see how I do at 150mg of Fostamatinib for at least 2 or 3 weeks and if I do not get a response at the highest dose of Fostamatinib over those 2 to 3 coming weeks..then he will discontinue this drug and place me back on the Nplate with prednisone combo like I had in the past.

Hemo also said that he will be trying to get me into a clinical trial at Weill Cornell hospital in NYC..where I live.

Finally.. I pressed my hemo hard on the fact that I want to try Etanercept for a month. I told him that this is the second time that I am mentioning this to him and I want him to do the research so that I can try this. I feel that there is something good with this drug for ITP but it has only been tried on a very small sample of people.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 1 week ago #63932

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Hallelujah! I didn't want to say anything, but I did not like that combination at all. Odds are, none have those have ever been tested together and no one has any idea what the synergistic affects might be. Too many drugs at once can certainly lead to trouble.

Please research these meds before using them. I know the goal is to get counts up but you don't want to risk long-term side effects. The biologics are pretty potent drugs.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 1 week ago #63939

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Ah, would not have expected Rigel to say that about Nplate and Fostamatinib together after the doctor recommending the combination in the previous YouTube video I linked to.

As far as clots, it seems that taking drugs that one responds to is what can get one into trouble. And, that risk is much higher when one of the drugs is Promacta or Nplate - since those can cause an abnormally large number of platelets to circulate. Since you respond to IVIG and you respond to Nplate, that is the big combination risk. So in those terms, being on Fostamatinib and IVIG is better in terms of lower clot risks than being on Fostamatinib and Nplate.

While it sounds good that your doc has revealed a plan to you going forward, I'm a little surprised he wants to give higher dose Fostamatinib just 2 or 3 weeks. On the other hand, perhaps going to the higher dose is most effective when one gets a partial response to the lower dose. I dunno. Uncharted water.

Another clinical trial going on nearby. Maybe you can get a name on it?

Be careful with the Etanercept. From the study abstract it sounded like they stumbled on it by coincidence. But realize, that is an old study. If the drug had good or predictable promise, someone would have ran with it already. Didn't the patient have diabetes or something? Something that you have too?

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 1 week ago #63942

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I'm glad that you are paring down on the number of drugs in your cocktail. You can never really know what is going on with too many things in the mix. I hope that Fostamatinib does something good for you at the higher dose.

Regarding Etanercept, that sounds crazy scary. Yikes. The issues with sepsis and death (eek!), reactivating Hep B and TB, and strongyloides hyperinfection (nematode parasites?? hell no thank you!) make that drug sound like a really bad deal. Why are you pushing hard for this drug? The risks on that one sound extreme.

I hope Fostamatinib works well for you and then you won't need to try other things!
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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 1 day ago #64030

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How are things Jason? Last IVIG making it hard to know what is working?

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 19 hours ago #64033

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Hello Hal,

As you know, I received IVIG 2 weeks ago and at my platelet count went up to 150. The following week (This past Friday) when I have my normal hemo visit, my count was 163k. As expected, the IVIG typically stays around for a few weeks and I do anticipate a crash in my counts within the next week or two at best. SInce my count was 163k...the hemo reduced my prednisone from 30mg per day to 20mg per day. If my count stays good by this Friday...he will probably reduce me to 10mg of prednisone. We will see. Furthermore, I am on 150mg of Fostamatinib, twice per day. We will know if this drug is doing anything once the IVIG wears off. This will be my 3rd week on Fostamatinib at 150mg. I already did 4 weeks of 100mg of Fostamatinib and no response. Like you said, Hal...83% responded within 8 weeks. I am close to that marker now.

Furthermore, the London people are reviewing my medical records and they will get back to me this coming week to schedule a few time slot options so that I can fly from NYC to London and get this Indium Scan done. By the way, I did see some people say that there were harmful side effects that could occur from Etanercept but I like to explore all options before removing my spleen if the Indium scan confirms splenic sequestration. I was trying to see if there were any non-responders who were provided Etanercept..and I can't find any medical research papers that can confirm this. I think ITP is a T-Cell issue that eventually effects all internal processes and Etanercept targets T-Cells, I believe.

I will give everyone an update after Friday's appointment. (By the way, I am dealing with acute bronchitis right now, so I wonder how that will impact my numbers but I NEVER get sick. This is like the first thing outside of ITP that has happened to me since last April.) Just a recap..I am currently on 20mg of prednisone daily, 150mg of Fostamatinib twice per day, and IVIG was provided to me on Tuesday, July 10th which has yielded a 150k (July 13th) followed by a 163k (July 20th) platelet count on back to back Friday visits.)

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 18 hours ago #64035

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Some would probably say, 'whatever it takes to get off Pred !'
Seriously, those numbers sound good. Not too low, not too high, but just right. Marginally increasing too, another good sign.

Yea, I couldn't find much on Etanercept and ITP either. That alone raises a yellow flag.

On the Indium scan. Do they allow you to be on IVIG and Fostamatinib for the test? I can see how there is no drug which blocks liver destruction of platelets (except Tamiflu) and that is how the test achieves its accuracy. But it seems to me that a lot of drugs block splenic destruction and that is what leads to inconclusive results. Taking drugs during the test.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 6 hours ago #64043

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Hello Hal,

I can only be on a low dose of prednisone for the Indium Scan. The London people got back to me today. We are trying to solidify a scan date for September 10th through the 12th. I will keep you updated on the London front over the next month and a half. The more pressing concern is the wait for IVIG to start to lose its effectiveness which will reveal if Fostamatinib is having any impact on my ITP condition.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 10 months 1 hour ago #64050

  • mrsb04
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Interesting...I didn't have to reduce medications for my indium scan which by the way was fascinating to watch.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 9 months 4 weeks ago #64061

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Hello All,

As expected...the IVIG wore off and my platelets tanked from 163k down to 3k. So, my hemo is keeping me at 20mg of prednisone and he gave me another round of IVIG. He told me that he is removing me off of the Fostamatinib since it did nothing to affect my numbers whatsoever. He will be putting me back on NPlate again next Wednesday. I can't get my platelets to stabilize at all. My numbers are always below 10k. It is very frustrating. I would not mind if I had 30k stabilized but under 10k with prednisone is just horrible. I wonder if the NPlate would kick in right away after not being on it for about a month.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 9 months 4 weeks ago #64062

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Jason I am truly stunned that Fostamatinib has not improved counts. Extraordinarily disappointing.

My two cents. Once you are taken off Fostamatinib there will be little motivation to ever go back to it again. With that in mind, and ignorant of how best to use Fostamatinib, I would lobby to combine Fostamatinib with up to a 5 dose of Nplate. If that fails, that would definitely put a nail in the coffin of Fostamatinib.

When you've taken IVIG with nothing else did it last two weeks? When you've taken IVIG with Nplate did it last two weeks?

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 9 months 4 weeks ago #64064

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Hello Hal,

My hemo is definitely not going to pair up Fostamatinib with NPlate. He said that it is too risky the last time with blood clots. The fostamatinib just does not work for me. It has been 6 weeks and no response. Outside of IVIG infusions....my numbers have been 6k or below for weeks at a time. I can't sustain like that. Its too low. At least NPlate with prednisone combo kept me barely above 10k on its worst days. IVIG by itself for me lasted about 1.5 to 2 weeks at best. I took IVIG with NPlate around January 22nd when I was going up the NPlate dosage ladder waiting for an NPlate Response. On January 22, 2018 my platelet count was 1k. I got an IVIG that day and it lasted just under a month while I was on Nplate level 7 I believe. I crashed at end of February but recovered a bit in March.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 9 months 4 weeks ago #64065

  • mrsb04
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I am not at all surprised Fostamatinib didn't work.

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Fostamatinib, low dose prednisone, and high dose nplate triple therapy? 9 months 4 weeks ago #64070

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Yeah.... that one doesn't seem to be very successful.

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