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kinky
@kinky

Posts: 3
Joined: Dec 21, 2016

ITP

Posted by @kinky, Jan 23, 2017

Hi, anyone being treated for low platelets? I am 69 yrs old. My platelet count is 27,000. I’ve been on Prednisone 3 months (40 mg..now 60 mg) but not helping. What kind of treatment are you taking? Side effects? Thanks.

REPLY

Hello @kinky,

Welcome to Connect; we’re so glad to have you here.

According to Mayo Clinic, having a low blood platelet count can indicate Thrombocytopenia, and prednisone is prescribed as it may help raise your platelet count by decreasing the activity of your immune system. You can read more about it here:
http://mayocl.in/1R7wiGM

I’d also like to introduce you to @sebley12, @debdeb, @strongenough2011, @lisaa, who have discussed this condition and hope they will return with more information for you.

@kinky, what symptoms are you experiencing? Has your doctor explained the cause of the low platelet count?

hi, i am 66 yr old and been struggling with ITP since sept 2015. I failed steroid and splenectomy and in past feb when platelet tanked to 3, I went back to steroid and received 4 weeks of Rituxan. Now just waiting for plt to show response. Currently I suffer from tendinitis of R shoulder and the pain is throbbing and constant…. I have been healthy prior to this. I went thru huge stresses over past 10 yrs and think it contributes to ITP. When my platelt is single digit, I have bleeding – in mouth and nose and petechia. I pray for remission and the pain makes me think about asking for medical marijuna.

@kanaazpereira

Hello @kinky,

Welcome to Connect; we’re so glad to have you here.

According to Mayo Clinic, having a low blood platelet count can indicate Thrombocytopenia, and prednisone is prescribed as it may help raise your platelet count by decreasing the activity of your immune system. You can read more about it here:
http://mayocl.in/1R7wiGM

I’d also like to introduce you to @sebley12, @debdeb, @strongenough2011, @lisaa, who have discussed this condition and hope they will return with more information for you.

@kinky, what symptoms are you experiencing? Has your doctor explained the cause of the low platelet count?

Jump to this post

I was diagnosed with ITP about 8 years ago. I am weaning off Prednisone, didn’t raise platelets – cutting 5 mg a week from 60 mg & now at 15 mg. I have had 3 Rituxan infusions, one week apart, and will have the 4th & final one on Monday. So far, platelets are staying the same at 30,000. Has anyone had Rituxan? Did it work for you? Did you get an immediate response or did it take awhile for platelets to come up?

Oh my gosh. Your platelet count was 3? How scary. When was your last Rituxan infusion? Does your doctor think it takes awhile to get a response from Rituxan? My doctor was hoping I would get a response while taking infusions. None, after 3, the 4th and last infusion will be Monday. I hope it works for you.

Yes I get palpitation with that kind of number – needless to say I felt stupid not reading into the signs and symptoms when it tanked to 3 (I thought of not much when I had petaechia, slight bleed in mouth and nose…). I got IVIG in Jan 17 but not when it was 2 in Sept 2015….bled like a pig at home then.
It was 2 in Sept 2015 when first diagonsed, then went on prednisone and splenectomy (Aug 2016), it shot up to 260’s in Dec 2016. Then it tanked to 3 a month later in early Jan.
My Rituxan (4 weekly infusions) was done in early Feb, 17. 3 days ago my platelet was 160’s. My doc restarted me on prednisone thinking the response from Rituxan may not be that quick…
I got real scared when reading the first paragraph about Rituxan …”Many had lethal or fatal reaction at first infusion…pre medicate is essention”. I then realized prednisone WAS my saving pre medication. I sailed thru the first infusion with NO prob..(Nurses were checking my vital signs every 1/2 hr? therefore the first infusion was 4-5 hours long. From then on, every infusion was a mere 90 minute.
If you survived the first infusion, the rest should be piece(s) of cake! No worries!

My hematologist says it is encouraging to see my numbers nowadays and thinks that might just be the Rituxan kicking in – of course it takes time….I read 2/3 of people achieve remission with Rituxan. But then I also read the same rate of success about splectomy…yet I failed to respond to splenectomy….wish I can have my spleen back.

At this point I am most concerned about my immune suppression (from being on prednisone since Spet 2015, yes!, from having Rituxan, and from having no spleen – even though I had all the necessary vaccination, it’s no guarantee about fatal infection…). What have you been told by your doctor regarding Rituxan and immune suppression??
Chat soon & u will be fine with Rituxan infusion. It’s more what comes after that you should be concerned, in my opinion. (ie how you respond, and the degree of immunosuppression, making us sitting duck for life threatening infections). But we have to carry on living, just a bit smart about thins.

@angelard

Yes I get palpitation with that kind of number – needless to say I felt stupid not reading into the signs and symptoms when it tanked to 3 (I thought of not much when I had petaechia, slight bleed in mouth and nose…). I got IVIG in Jan 17 but not when it was 2 in Sept 2015….bled like a pig at home then.
It was 2 in Sept 2015 when first diagonsed, then went on prednisone and splenectomy (Aug 2016), it shot up to 260’s in Dec 2016. Then it tanked to 3 a month later in early Jan.
My Rituxan (4 weekly infusions) was done in early Feb, 17. 3 days ago my platelet was 160’s. My doc restarted me on prednisone thinking the response from Rituxan may not be that quick…
I got real scared when reading the first paragraph about Rituxan …”Many had lethal or fatal reaction at first infusion…pre medicate is essention”. I then realized prednisone WAS my saving pre medication. I sailed thru the first infusion with NO prob..(Nurses were checking my vital signs every 1/2 hr? therefore the first infusion was 4-5 hours long. From then on, every infusion was a mere 90 minute.
If you survived the first infusion, the rest should be piece(s) of cake! No worries!

My hematologist says it is encouraging to see my numbers nowadays and thinks that might just be the Rituxan kicking in – of course it takes time….I read 2/3 of people achieve remission with Rituxan. But then I also read the same rate of success about splectomy…yet I failed to respond to splenectomy….wish I can have my spleen back.

At this point I am most concerned about my immune suppression (from being on prednisone since Spet 2015, yes!, from having Rituxan, and from having no spleen – even though I had all the necessary vaccination, it’s no guarantee about fatal infection…). What have you been told by your doctor regarding Rituxan and immune suppression??
Chat soon & u will be fine with Rituxan infusion. It’s more what comes after that you should be concerned, in my opinion. (ie how you respond, and the degree of immunosuppression, making us sitting duck for life threatening infections). But we have to carry on living, just a bit smart about thins.

Jump to this post

Thank you! It’s lonely world being ITP as many know. I am in Canada so thankful that we have socialixed medicine here but I still spent tonnes of energy/time navigating thru the system. I am now happy with my hematologist but still vigilant in tems of communicating my goals are at each appointment.

@kanaazpereira

Hello @kinky,

Welcome to Connect; we’re so glad to have you here.

According to Mayo Clinic, having a low blood platelet count can indicate Thrombocytopenia, and prednisone is prescribed as it may help raise your platelet count by decreasing the activity of your immune system. You can read more about it here:
http://mayocl.in/1R7wiGM

I’d also like to introduce you to @sebley12, @debdeb, @strongenough2011, @lisaa, who have discussed this condition and hope they will return with more information for you.

@kinky, what symptoms are you experiencing? Has your doctor explained the cause of the low platelet count?

Jump to this post

My hematologist hinted Rituxan’s effect is not as fast as prednisone (with prednisone, one can expect platelet to bump in by 10 weekly when on 1mg/kg weight). That is why I am still on (tapering) prednisone, as a support for platelet. Also slow tapering is necessary so I dont become more psychotic….been told by my son I have RoidBrain!!
I remember being told one can see result from Rituxan about 2 weeks after the last infusion?
I sympathize with you being on 60mg prednisone – I opted to daily frequent blood sugar checks and using walking (1/2 hr only) to lower the sugar. Of course diet is big part too. Not easy but now a semi- pro in dealing with this monster or wonder drug of the 20th century!
Forge ahead and look for sunshine when cloud dissipate! Not unusual when you feel so down and so much in disbelief!
A

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