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Anyone diagnosed after strong dose of Antibiotics

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11 years 10 months ago #41690 by ptschuma
I believe I have lived with ITP most of my life. I have always had nose bleeds since I was young, but never was sick enough to have blood work done. Last year I had a strange virus or infection with was corrected with a week of antibiotics by IV. Shortly after I completed that, my white count started to drop and was then followed by my platelets. I went thru all the tests for different cancers and came back as ITP.
I have tried prednisone, rituxan and then found the Nplate works to maintain my number. However, I am starting to think my count is maybe naturally low, but when I try to go off Nplate my numbers fall severely.
Has anyone else bottomed out by a very strong dose of antibiotics and if so, how long did it take to correct. I'm not sure if I would have self corrected but the Nplate is causing my counts temporarily high. I've been on a 3 dose for most of the last 7 or so months. But Ive dropped down to a 1 dose since about March. I've been anywhere between 70,000 up to 500,000 but usually are around 70,000. When we try to skip a week I think I see the temporary severe drop in count until my body starts to readjust by my Dr adjusts back up to correct, like a cycle that I can't break.
So I guess 2 questions:
-strong doses of Antibiotics cause a severe drop in platelets
-how to come off Nplate to see you your body will react with out bottoming out.

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11 years 10 months ago #41691 by Ann
It may have been the bacterial infection that caused the platelet drop and not the antibiotics. Timing is not always obvious.

With Nplate you need patience. Just wait until your count is so high that you need to drop the dose down and down to the lowest and then go from weekly to two weekly and so on until you just stop. Patients at my haematologist's clinic are using Nplate every 5 weeks before stopping. He told me to do that but I wasn't getting counts often enough to know what was happening so I stopped it myself. I've now been off it for 9 months or so and my last count was 83 so not perfect but not bad.

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  • 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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11 years 10 months ago #41692 by Sandi
Unless someone has a platelet count done, it is hard to know if a person has low platelets or not. Nose bleeds can be a symptom, but can also be caused by dry weather or a vessel that needs cauterized. It's fairly common. If you did have lower than normal platelets for a long time but were not bruising badly, covered in petechiae or experiencing other bleeding, then it obviously wasn't a problem.

Both an illness or an antibiotic, or the combination of both, could possibly trigger ITP. Many drugs have the potential to trigger platelet drops and everyone is different as to what drugs cause a problem for them. I've had platelet drops twice due to Amoxicillin but have also taken it years later and platelets were fine.

As for coming off of N-Plate, how low do your counts drop when you skip a dose? It is common for counts to bottom out when a dose is missed. That is stated on the manufacturer's website. Have you ever been able to maintain a count between 30 and 70 on N-Plate for a period of time? If so, then that is the goal with N-Plate and you hit on a good dose for you. The dose should be adjusted to maintain counts for a while before trying to stop or miss doses. Some people do achieve remission but some do not. ITP does not always self-correct and sometimes it can take years to get to that point.

What side effects are associated with Nplate®?

Nplate® can cause serious side effects:

Worsening of a precancerous blood condition to a blood cancer (leukemia)
Higher risk for blood clots
Bone marrow changes (increased reticulin and possible bone marrow fibrosis)
Worsening low blood platelet count (thrombocytopenia) and risk of bleeding shortly after stopping Nplate®
Lack or loss of response


Will Nplate® raise my platelet count to normal levels?

No, Nplate® is not intended to make your platelet count normal. Treatment with Nplate® is intended to keep your platelet count at about 50,000 per microliter, a level that lowers the risk for bleeding.

www.nplate.com/patient/nplate-patient-support/faq.html#why

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11 years 10 months ago #41693 by ptschuma
My doctor allowed me to try to stop treatment back in early March because I thought I could maintain by diet etc (foolish on my part and his for allowing it). I dropped down to 5,000 and and blood blisters in my mouth, petechiea and a continuous nose bleed. I had a brain bleed and a seizure in mid march. So I learned my lesson. I have been up in "normal levels" since leaving the hospital. Anywhere from 100 - 500,000 count with low or no N plate shot. I was at 230,000 a few weeks ago and they have been following the MFG's formula for dosage. I had 2 consecutive weeks over 200 so I went from 1 micro dose to 0. Last week I was at 30,000 so we went back to a 1 dose again and dropped lower to 18,000 as of this afternoon.
I have never had bruising or never bad petechia only a few spots. My bloody nose is usually my guage.

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  • 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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11 years 10 months ago #41694 by Sandi
The problem as I see it is that your counts seem either too high or too low. Most of the time, problems with bleeding or clotting seem to occur when counts drop too fast or skyrocket too fast. I have known of a few people here who had strokes from blood clots due to the use of N-Plate itself or due to counts that went too high. Clotting is as much of a concern as bleeding can be because ITP can also be a thrombotic disorder.

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

I sure hope that your Hemo does follow protocol and is dosing N-Plate properly. I also hope that you can somehow stabilize soon in a safe range. Jumping all over the place like that is not good. What got your counts up so high in the hospital?

If you had blood blisters, I'd say that is also your clue to low counts.
The following user(s) said Thank You: ptschuma

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11 years 10 months ago #41747 by Vdeutsch85
My counts on Nplate were all over the place like yours. I would go from 350,000 to 45,000 in a week with the guidelines. ( this was after seeing a specialist who figured out the previous hema was not using the guidelines). I was on it from April until September and I never really stabled out but was kept above 50,000 except for when I got a cold. The specialist suggested I try Promacta. His theory was that if I had a stable level of medication in my body that my counts would be more stable. I just decreased my dose about three weeks ago, but when I was on 25 mg I was in the 130 range for 4 months. Then my count was 230 and then 380, so the doc lowered my dose and I was at 128 last week.

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11 years 10 months ago #41794 by ptschuma
Have you been able to stop the Promacta? I think I can maintain a safe level (over 50) if I can get off N Plate. The problem is when I stop I have the temporary dramatic drop that causes me to go down below the safe level so I get another injection at a higher dose and it starts the cycle over.
I've asked about pill form of Promacta but the doctor had advised against it but didn;t really give me a good reason why.

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