HELP WITH PREDNISONE DOSE.

Dear all,
As I posted before, I was diagnosed with PTI in September through a routine health check up. I never had bleedings, petechial or any sign of low platelets. But on a routine check up I had 9000 on 15 September.

15 Sept 2019 .............9.000........................... put on 100mg
25 Sept 2019............202.000......................Treatment stopped
1 Oct 2019.................56.000........................put on 75 mg
11 Oct 2019............. 176.000...................... Treatment stopped
15 Oct 2019............91.000......................... put on 40 mg
17 Oct 2019............ 117.000.......................carry on with 40 mg
22 Oct 2019 .......... 72.000 (I forgot to take a dose one day)........................ treatment stopped
25 Oct 2019........... 26.000 ........................put on 40 mg
29 Oct 2019..........56.000..........................put on 20 mg
5 Nov 2019.......... 34.000..........................carry on with 20 mg
12 Nov 2019.......46.000.......................... carry on with 20 mg
19 Nov 2019....... 44.000...........................carry on with 20 mg
26 Nov 2019.......50.000...........................carry on with 20 mg
29 Nov 2019....... 45.000.........................carry on with 20mg
Next test will be 7th December.

Do you have any comment or suggestion? I am tired of prednisone even if it is a small dose and the doctor seems happy I am only on 20mg. Well 20mg is still affecting me. It seems he wants to keep me like this until May and see how I evolve before taking a decision. Please any advice will be very much appreciated. Txs in advance.

When you say "Treatment stopped" - what do you mean, did you just stop prednisone cold turkey or was the prednisone tapered until you were off it?

Actually my hematologist would say your counts from 29 Oct-29 Nov were the same.

Hi,

Thanks for answering.
Yes. It was stopped cold Turkey. First time by myself thinking I was ok. The second one by the second doctor who also thought I was ok. third time by the third doctor wanting to know how low can I go.

What do you suggest? to carry on with 20 mg until I got better or move to something else in May or June? txs

20mg isn't a small dose in my opinion. Personally I would recommend you try Eltrombopag which may take a while find a dose that suits you, whilst tapering off the Pred. There are lots of posts on here about Pred tapering.

Don't just stop prednisone - not a good idea as your body stops making its own after a while [been so long I don't recall how long - but your body does naturally make its own & when you start taking prednisone over the amount it naturally makes it stops making it - you need to taper so that your body will start making its own again]. When I was diagnosed in 1989, it was 60mg prednisone for me, MD & hematologist wanted me off it before moving overseas so after a short time they cut it to 30mg and my count tanked, back to 60mg and off we went. My opinion [and I'm not in the medical field] is the dose can't be dropped too low too quickly.

You have had 3 hematologists since September [you have 2019, I assume you mean 2018 ] ! I would think you need to find one you trust and stick with him/her. Amazing you were at 9k with no symptoms - I was diagnosed at 11k & dropping and looked like I had been beaten with a 2x4 in a back alley

I really can't tell you what to do but I would say I wouldn't stay on 20mg until May - even 20mg a day will have some side effects. I tapered until I was at 2.5mg [had 1mg tablets] and stayed on that until our return to the States, but that's because my hematologist in Hong Kong would panic any time my count dropped & wanted my spleen out [still have it]. Wondering now if my osteoarthritis causing bone on bone pain in both knees is the result of pred.

Yes. sorry. 2018....all the way not 2019.
My head....maybe is the prednisone

Txs for the advice. I understand that if I get a chance for remission (I mean the antibodies stops acting crazy) there is equal chance to get there with prednisone and with Eltrombopag. Right?

Sorry, can't answer that - only have had prednisone and the one WinRho IV and those put me in a "remission".
What if you talked to your doctor about doing a slow taper? Again my opinion: I don't want to stimulate anything. Women who took DES to stimulate egg production had daughters who had a higher risk of a rare cancer & sons who were at risk for a type of non-cancerous cyst. So I just don't care to stimulate platelet production by taking Eltrombopag [have learned to never say never].

Nah, not a pred head mistake - you are just practicing for the new year

PS - years ago I was told my body will never stop making the antibodies against platelets - guess that's right since my count won't go/stay in the normal range

Prednisone can sometimes cause remission but not the way your doctors have been doing it. You can't start and stop like that; it's literally jerking your body around. You get a good response and then STOP...body responds with a platelet drop. It's usually done with a high starting dose and a slow taper done over a few months.

I can understand your frustration with the drug at this point. All of these months and you didn't really get anywhere. You have the choice to start over with a higher dose and taper slowly or suggest a different treatment option.

Dear Sandi,

Exactly! That's why I ended up having a 4th hematologist. My current one was shocked. As expatriate I was diagnosed in a small south Eastern country and therefore tried to find a cure there. Once in Spain I found immediately a good one with expertise. I am cautious thou Now I changed the treatment for the 4 days Dexametasona 40mg pulse boost. Today the last pill. It seems it doesn't need tapper. It has better statistical results than Prednisone and certainly it doesn't affect my mood and makes me depress like the Prednisone.

Crossing fingers....

Hey.
I was on prednisolone for 7 month with average dose of 25 mg/day .
my average count has been 15k during that time . Prednisone was T-E-R-R-I-B-L-E !
if it was stablized above 20k , I'd reduce 5mg and see what happens ...
You can read this to see how much Prednisone you should take and how many platelets are "safe" to live with ?
www.semanticscholar.org/paper/Late-spontaneous-remissions-in-severe-adult-Simanek-Panzer/77c0a378feb0054369569086517dd149607a4587
If you wanted the article , I can send you it's full article , but there are websites which unlock them for you ....
They used pred at mean daily dose of 7.5mg for more than 30 patient year .
3 of 4 , were mostly under 10k.
Their serious bleeding was to ICH in someone (which was managed and stopped by increase in prednisone ?!! ) and several GI bleeding . No one had any serious complication (And as someone who has had GI bleeding once , that is just SCARY )

As you mentioned before ,
"Dear all,
As I posted before, I was diagnosed with PTI in September through a routine health check up. I never had bleedings, petechial or any sign of low platelets. But on a routine check up I had 9000 on 15 September"
You have had never understood you are running on too low platelets ! maybe you can still avoid treatment ? maybe you have been 9k for couple of months and didn't understand ?
Running on low platelets , has it's own burdens ... You must care about hits , foods and other drugs you take , but for ITP , as I (and probably other people) have experienced , "no treatment is the best treatment !" but , of course you should also consider your lifestyle and also platelet count (running on below 5k is not a very good idea) and other conditions (diseases) you might have ?
130 itp patient was managed with platelets above 10k for more than 10 years (1300 patient year ? ) and nobody died from bleeding !
www.researchgate.net/profile/Paul_Kyrle/publication/9087231_Mortality_in_severe_non_aggressively_treated_adult_autoimmune_thrombocytopenia/links/00b7d53c01a4dacb6e000000.pdf

given these facts , I suggest you discuss your doctor to taper off prednisone until you are above 10k . If your doctor refused , show him these articles.
Wish you Pred-free days !