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Platelet Hope

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8 years 3 weeks ago #60701 by apantoj1
Platelet Hope was created by apantoj1
I've had ITP for 25 years now with following treatment:
1. Prednisone
2. Rhogam
3. Rituxan (remission X 10 years)
4. August 2015, ITP came back treated with Rituxan lasted X 1 year.
5. Nov 2016 platelet crashed to 7....treated with Rituxan but this time barely responded.
6. March 2017 switched to promacta responded great with severe headache as side effect after 3 weeks
7. Aug 2017- colitis and treated with medrol pack and antibiotics
8. Sept 2017- platelet crashed to 4 and treated with IVIG with solumedrol then Prednisone @ 60mg tapered down in 1 week
- Monday Sept 18, 2017 platelet 490's. Promacta on hold til Friday & will recheck platelet

* feels so tired every time platelet goes down I guess this is norm for ITP?
I am so grateful for this support group!
Allie2

Allie2
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 3 weeks ago - 8 years 3 weeks ago #60705 by Hal9000
Replied by Hal9000 on topic Platelet Hope
Oh my, 491. Have you thought about low dose Aspirin? Do you suppose the Colitis is fully gone now and that is why counts shot up?

Promacta and IVIG are a powerful super charged combination ;)

Have to wonder if your steroid response has somehow magically returned - which might imply a return of Rituxan response.
The following user(s) said Thank You: apantoj1
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8 years 3 weeks ago #60718 by apantoj1
Replied by apantoj1 on topic Platelet Hope
I had CT scan of abdomen and yes colitis been resolved. My hema has not suggested Aspirin either. I'm just thoroughly observing myself and little scared of clot formation

Allie2
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8 years 2 weeks ago #60846 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Promacta was on hold X 3days. Plate down to 19 last Friday. Sunday morning woke up with signs of bleeding (blood blister in mouth). A little scared so I went ER & platelet was 10.
My hema suggested I'd be admitted for IVIG treatment. Today, Monday platelet still low. Dr had mention splenectomy will be our next option.
Any input is much appreciated.

Allie2
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 2 weeks ago #60853 by mrsb04
Replied by mrsb04 on topic Platelet Hope
What Promacta dose were you on when it was put on hold?
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8 years 2 weeks ago #60856 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Im on 75 mg

Allie2
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 2 weeks ago - 8 years 2 weeks ago #60862 by mrsb04
Replied by mrsb04 on topic Platelet Hope
Protocol is once count is below 150 Promacta should be reinitiated at 25mg lower dose i.e. 50mg in your case
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8 years 2 weeks ago #60893 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Thank you! How I wish that was done in my case. Prolly we could have prevented my platelet to go down. Today my platelet is 44 after 2nd dose of IVIG. I'm being Discharge and follow up lab Monday.
My hema suggested splenectomy due to my platelet is not responding to promacta. I'm on observation for the next few weeks. I'm crossing my fingers I really chicken when it comes to surgery.

Allie2
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8 years 2 weeks ago #60896 by momto3boys
Replied by momto3boys on topic Platelet Hope

apantoj1 wrote: Thank you! How I wish that was done in my case. Prolly we could have prevented my platelet to go down. Today my platelet is 44 after 2nd dose of IVIG. I'm being Discharge and follow up lab Monday.
My hema suggested splenectomy due to my platelet is not responding to promacta. I'm on observation for the next few weeks. I'm crossing my fingers I really chicken when it comes to surgery.


Hi Allie,
I looked back a few posts and saw that you had been doing promacta, but it seemed like there were steroids and IVIg and other things thrown in the mix, so I couldn't tell how your counts had done when it was just the promacta. Were you getting any results (meaning numbers near 50, not normal of course)?

Just curious how it had gone, since stopping it abruptly seems to have contributed to your latest crash.

Just because your hematologist says splenectomy doesn't mean that you have to do it. I was given a splenectomy (which obviously didn't cure me because I'm still here and treating my ITP) and wish there had been other options for me at the time. There are other options available. I didn't see that you had even tried NPlate (similar mechanism of action to Promacta, but a shot), which I totally would do before even thinking about surgery. Some people combine treatments, some people have success with immunosuppressant drugs. There are things that you could do if you want to keep your spleen. Some hematologists are eager to do surgery, however, so you may need to switch doctors if your current one doesn't want to explore other treatment options. If you have done treatments like steroids and ended up with counts above 400k (that's a pretty big response!), then you are definitely not a lost cause! Obviously there are things that work for you. Good luck!
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8 years 2 weeks ago #60898 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Thank you so much for your input. This is something I could talk to my hema. I know he is willing to listen. He admitted that he wished he could have just reduce the promacta dose instead of totally hold it which prolly caused this platelet crash.
My Hema also said he will try this route and prolly another Retuxan? If it's still not happy with response will go for Surgery route.
Can Retuxan be combined with promacta? Anyone with this experience?


After Retuxan treatment with no positive result platelet was 24. My Hema decided time to switch to Promacta
1. promacta Monday Apri 3, 2017 was my 1st dose @25mg
2. Day 5 of promacta- platelet 34
3. Day 15 of promacta- platelet 27
4. Day 27 of promacta- platelet 127
5. Day 41 of promacta- platelet 104
6. Week 9 of promacta- platelet 64
7. Week 11 of promacta- platelet 54 ( dose increased to50 mg)
8. Week 3 of promacta 50 mg- platelet 83
9. Week 5 of promacta 50 mg - platelet 94

Then had colitis flare up. Was given Rx flagyl/cipro and medrol pack. Week after platelet was 293 obviously from the steroid. CT of abdomen was and confirmed that colitis had resolved.
10. Week 9 of promacta 50 mg - platelet 193
11. Sept 5,2017 woke up with blood blister in mouth and petechia on lower extremities. platelet was 7. Given solumedrol IV. Platelet the next day 4. This is when I was admitted to get IVIG & solumedrol. Promacta continued @75 mg.
12. Sept 18,2017 Platelet 493. This is when promacta was put on hold x 3 days then platelet to 19. Promacta restarted back @75 mg.
13. This past Sunday woke up with blood blister in mouth again. Decided to go to ER. Platelet was 10 & admitted for ivig
14. Platelet today is 44 and no more signs of bleeding. Discharge from hospital, continue with promacta @75 mg and platelet lab on Monday.

Allie2
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 2 weeks ago - 8 years 2 weeks ago #60901 by mrsb04
Replied by mrsb04 on topic Platelet Hope
Allie
I'd be inclined to continue on the Promacta for a few weeks and see what happens. Your system needs to get over the colitis flare up.
As for splenectomy if you don't want one don't have one, there is no guarantee it is going to work.
There are risks associated with splenectomy, look at D Mann's recent experience. That alone would be enough to put me off if I had been contemplating it. However I refuse point blank to part company with a perfectly healthy organ that is doing its job properly. If you had one and it failed then you might need immunosuppressants/steroids to help platelet count laying you open to all sorts of infections.

Over here in the UK we get a regular magazine from the ITP Support Association . This month Prof Newland, a well known UK ITP, expert states "Splenectomy should no longer be considered a routine second-line treatment and reserved for carefully defined patients" which I take that to mean if nothing else at all works.
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8 years 2 weeks ago #60902 by apantoj1
Replied by apantoj1 on topic Platelet Hope
That's true. Thank you for your input! I'm hoping that promacta will work.

Allie2
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 2 weeks ago #60907 by Sandi
Replied by Sandi on topic Platelet Hope
Allie:

I know you're getting a lot of differing advice, but this seems pretty clear cut. You've had so many treatments going on and because of that, it's hard to become stable. I see absolutely no point to trying Rituxan again since it seems to be failing. That is a lot of toxicity for a treatment that may do nothing. You've had it what, three times now? Twelve infusions total? It usually doesn't just start working again after it's failed once or twice.

You seemed to have great success with Promacta and the problem was the dosages that you were given, not the drug itself. It appears that you could get great stability from that drug if it's dosed properly.
The following user(s) said Thank You: poseymint
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 2 weeks ago #60909 by Sandi
Replied by Sandi on topic Platelet Hope
MrsB - Is there a copy of that article that you can post?
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8 years 2 weeks ago #60912 by momto3boys
Replied by momto3boys on topic Platelet Hope

apantoj1 wrote: Thank you so much for your input. This is something I could talk to my hema. I know he is willing to listen. He admitted that he wished he could have just reduce the promacta dose instead of totally hold it which prolly caused this platelet crash.
My Hema also said he will try this route and prolly another Retuxan? If it's still not happy with response will go for Surgery route.
Can Retuxan be combined with promacta? Anyone with this experience?


After Retuxan treatment with no positive result platelet was 24. My Hema decided time to switch to Promacta
1. promacta Monday Apri 3, 2017 was my 1st dose @25mg
2. Day 5 of promacta- platelet 34
3. Day 15 of promacta- platelet 27
4. Day 27 of promacta- platelet 127
5. Day 41 of promacta- platelet 104
6. Week 9 of promacta- platelet 64
7. Week 11 of promacta- platelet 54 ( dose increased to50 mg)
8. Week 3 of promacta 50 mg- platelet 83
9. Week 5 of promacta 50 mg - platelet 94

Then had colitis flare up. Was given Rx flagyl/cipro and medrol pack. Week after platelet was 293 obviously from the steroid. CT of abdomen was and confirmed that colitis had resolved.
10. Week 9 of promacta 50 mg - platelet 193
11. Sept 5,2017 woke up with blood blister in mouth and petechia on lower extremities. platelet was 7. Given solumedrol IV. Platelet the next day 4. This is when I was admitted to get IVIG & solumedrol. Promacta continued @75 mg.
12. Sept 18,2017 Platelet 493. This is when promacta was put on hold x 3 days then platelet to 19. Promacta restarted back @75 mg.
13. This past Sunday woke up with blood blister in mouth again. Decided to go to ER. Platelet was 10 & admitted for ivig
14. Platelet today is 44 and no more signs of bleeding. Discharge from hospital, continue with promacta @75 mg and platelet lab on Monday.


Wow Allie, just looking at those initial weeks (I would throw out all of the colitis numbers because you were fighting that and also getting multiple treatments at one time) you had a great promacta response! Promacta is only supposed to be used to achieve a target count of 50 and even on 25mg you were getting counts way up above 100. woah, that's high and seems like a definite response! I am so confused about your doctor wanting you to stop trying promacta because of your bout with colitis.

apantoj1 wrote: 4. Day 27 of promacta- platelet 127
5. Day 41 of promacta- platelet 104
6. Week 9 of promacta- platelet 64
7. Week 11 of promacta- platelet 54 ( dose increased to50 mg)
8. Week 3 of promacta 50 mg- platelet 83
9. Week 5 of promacta 50 mg - platelet 94


All of these quoted counts show an amazing promacta response. The fact that your doctor increased your dosage to 50mg when you had a count of 54 is not following the dosing guidelines for the medication. You want counts around 50 because the medication carries a higher risk for clots/thrombosis. A count of 150 or higher means that you need to decrease the dosage to get back down closer to 50. A count of 54 is just about perfect, so it makes no sense that your doctor then increased your dosage at that count. Some doctors do not read the medication dosing insert and try to get your counts into the normal range with promacta, which is NOT what this medication should be used for.

Despite that mismanagement of the dosage, you obviously showed continued count increases while on 50mg, so I just don't see what the problem is. It is working just fine for you. Hopefully all of your colitis/antibiotic treatment/IVIg/steroids can work their way out of your system (or have already worked their way out) and you can just use promacta by itself to get yourself into safe counts --- 50! not 150 :)

That's what I'd tell your doctor if I were you. No need to swap treatments, promacta has been working just fine, so keep at it!
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8 years 2 weeks ago #60915 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Thank so much for the enlightenment. I do appreciate this so much. You had just given light! I will definitely mention this to my hema

Allie2
  • Sandi
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8 years 2 weeks ago #60916 by Sandi
Replied by Sandi on topic Platelet Hope
And, there is absolutely no reason to combine Promacta with Rituxan. Promacta was working just fine for you. It should be used alone to achieve counts around 50k. Adding Rituxan when it did nothing for you is senseless, especially when Promacta was doing the job.
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8 years 2 weeks ago #60918 by apantoj1
Replied by apantoj1 on topic Platelet Hope
That is so true. Thank you!

Allie2
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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8 years 2 weeks ago #60919 by D.Mann
Replied by D.Mann on topic Platelet Hope
Allie2,
You need to be careful doing multiple treatments and surgery. If you were to spike (like #12 above) you could get a clot. Read my tread Post Spleen Journey. I spiked at 350 and am now dealing with a painful clot.
I'm glad I did the surgery but I wish I had insisted on waiting to treat with IVIG afterwards. I was given 2 infusions, I think 1 would have done it??
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8 years 2 weeks ago #60920 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Yes I've had the following total of 3 Retuxan treatments
1. 2008 after uncontrollable nose bleed- Platelet was 2K
2. 2015 Petechia and nose bleed- platelet 7K
3. 2016 Petechia and nose bleed - platelet 7k

Allie2
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8 years 2 weeks ago #60921 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Thanks for your input. Yes I've read your posting experience after splenectomy. From now on I'll be careful and more proactive and hope that my hema won't get tired listening to me.

Allie2
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8 years 1 week ago #60982 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Went for Lab and Dr today. Platelet is 77K. I hope this is a good sign my promacta is working.

Allie2
  • Sandi
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8 years 1 week ago #60983 by Sandi
Replied by Sandi on topic Platelet Hope
It sure looks like a good sign! Platelets are in a good range.
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8 years 1 week ago #60984 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Platelet is in good range but WBC is 2.2 Not that I had not this number before. Just don’t know the reason & my hema don’t have an explanation either.
I feel good today and happy about platelet result.

Allie2
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8 years 2 days ago #61054 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Had lab and hema today:
1. platelet today is 87
2. Wbc 2.7 neutrophil 27
Dr is concern and considering bone marrow biopsy. Mind you this is not the first time that my wbc & neutro are low but my previous hema didn’t recommend bone marrow biopsy & my count went back to norm.
Any input from anyone is appreciated. Thank you.

Allie2
  • Sandi
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8 years 2 days ago #61055 by Sandi
Replied by Sandi on topic Platelet Hope
Allie:
I think a concern would be that you are using a TPO. A low white count could indicate that the TPO may be causing a problem or, there may be a problem and in that case, you shouldn't be using a TPO. Chances are everything is fine, but it's best to be sure when N-Plate or Promacta are involved.
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8 years 2 days ago #61056 by apantoj1
Replied by apantoj1 on topic Platelet Hope
It does make sense. Thank you.

Allie2
  • Sandi
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8 years 2 days ago #61057 by Sandi
Replied by Sandi on topic Platelet Hope
That is exactly how they catch bone marrow fibrosis....CBC shows a low count other than platelets and a bmb is done to make sure all is well. You haven't been on the TPO's for very long so try not to worry about that. He's probably just following protocol.
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8 years 1 day ago #61060 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Yes my bmp were good. My WBC & Neutrophil were in the same values February of this year before I took promacta then went up to norm in May.
I do agree I think my Dr wanted to r/o bone marrow fibrosis. I’m crossing my fingers, I hope my next CBC it’s going so I don’t have to go through this sounds painful invasive biopsy.
Thank you for your reply.

Allie2
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 1 day ago #61061 by mrsb04
Replied by mrsb04 on topic Platelet Hope
Allie
It isn't as painful as having a filling