Do I continue steroid taper whilst jiggling Promacta dose

As you all know I started promacta 25mg a day in February with a platelet count of 11 on 10mg Pred a day.
Count held in mid 30s as I was tapering Pred down. Got to 6.5mg a day pred when I got a cold.
Count went down to 12, it always drops at the slightest sign of a sniffle.
Specialist haemo nurse told me to up Pred to 7.5 mg/ day and Promacta to 50mg a day.
This took count up to 96 so I dropped pred to 7mg/day . 2 weeks later count up to 181 so I dropped to 6.5mg pred and 25mg Promacta daily as per haemo consultant instructions.
Last week's count was 59. Spot on, exactly where I want to be.
Full of cold again and count down to 19 today.
Consultant has just texted me to up Promacta back to 50mg a day to which I have refused and told her I'm going to take 25mg/50mg on alternate days.

My dilemma is shall I drop the Pred down to 6mg as originally planned?

Yea, that 19 puts one in kind of a pickle.
From what I've seen the 25/50 split may well turn out to be your long term dose to achieve a 50 count. But that is when healthy. Because colds have such an effect its a big question if that dose level will keep you away of symptoms.

If you wait a week at 6.5 mg it is reasonable to assume your counts will go back to 50 or so and the sniffles should go away. But, assuming that happens, will you be forced to go to 50 mg Promacta to further reduce the Pred next week?

On the other hand, going up to 50 mg as the consultant requests is the most expedient way to continue tapering the Pred - which is the goal.

I would. You bumped up the Promacta dose so that should pick up the steroid slack. It's only .5 mg's.

Another option: You could alternate days with the prednisone also- 6.5, 6 etc if you want to slow the taper down. Are you having any steroid withdrawal symptoms? If you are having withdrawal then it might be better to sit at 6.5 until you feel better. It looks like from your story (and as you know) that there was no need to increase prednisone to 7.5. The increased Promacta was enough. I agree with how you are dosing now- no increase in pred, alternating Promata. Slow and easy does it- you know what you are doing! Good job standing up to your consultant!

I'm going to bite the bullet and go down to 6mg. This is the 6th cold I've had in less than a year. Except for the sinusitis 3 years ago that gave me ITP I'd always been an extremely healthy person. Then I started on steroids & have never been right since. I'm fed up of being immuno suppressed. The sooner I'm off the wretched things the better.

Sounds like you've got it under control and aren't making any radical adjustments. 0.5 mg isn't much, so go for it and hopefully you will get over your cold soon and counts will rebound! I hope that you are able to get down off of your steroids at your current tapering trajectory. Steroid-free living is awesome; good luck achieving it Anne!

Oh I hope so mom. 22nd of October is the last planned day of Prednisolone.

OCTOBER 22nd ? ? FIVE AND A HALF MONTHS ? ?
Is there any way to speed that up?

No Hal there isn't.
There is a wealth of evidence base articles regarding the HPA axis and steroid withdrawal.
Rob 16 kindly posted this a year ago
pdsa.org/forum-sp-534/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html#54152
I don't know if you can access this without an Athens account but if you can it's worth a read www.uptodate.com/contents/glucocorticoid-withdrawal?source=search_result&search=steroid%20taper&selectedTitle=1~150

Hi,
Hope you recover from your cold soon. We got there by different routes but it sounds like we are both now doing the alternate (50/25) thing! I've been doing it for 3 weeks now and my weekly counts have been 19, 37 and 14. The 37 count gave me great hope after 2 weeks and I have no idea why I've now dropped again - I've not done anything different. I've yet to discuss this latest result with my doc ...

All the best for your steroids tapering! Looking forward to hearing how you get on with the alternate approach.

Ok, read as much as I had access to. I see that the 'primary' condition may relapse during tapering. The NPlate crash now makes sense. It seems like one might get several crashes as the gland function returns, or rather, is compelled to return. Might think about jumping to 50 mg Promacta off and on as needed, yes? I suppose around 5 mg pred is the expected danger level? Or, does it vary per individual (and what was it on the NPlate crash)?

Hal
When Nplate stopped working I'd been on the same dose of it for 6 months and on 3mg/day pred for 2 months. I don't do steroid tapering very well however as this is my 3rd attempt I'm more aware the withdrawal symptoms and of my limits and make sure I get plenty of little rests. Fortunately work are being very supportive, if I need 10 minutes time out I can take it.
I'm hoping Promacta is the answer but not building my hopes up too high as all previous treatments, and there have been quite a few, work for a while then stop.

CThom
www.swlmcg.nhs.uk/Clinical/Haematology/SWL%20ITP%20treatment%20pathway%2016_17%20FINAL%20v2%20010416.pdf
Discovered this yesterday ..there's a table with expected response times which may be of interest to you

For what it is worth Anne, I have seen examples of those with a strong steroid response going into remission through TPOs. One example would be 'Ann' - which took 3 years.
pdsa.org/discussion-group/7-treatment-general/27961-too-old-at-age-73-for-a-splenectomy.html#40063

Mrsb, thanks for posting Rob's article again. Its such good information. I just noticed a bit that I had missed before. I had never heard of the "one for one recovery time". Makes good sense from my experience.

"Recovery of the pituitary-adrenal response after use of a suppressive dose for more than one month will take about one month. Generally, this one for one recovery time is typical up to about 9 to 12 months, when recovery will often take up to a year..."

The last time I was on prednisone was for about 10 months (2015-16) and time before that I was on it over one year. The hardest part for me has been going from 2.5 to zero. Looking over my notes of tapering in 2016, total taper from 12.5mg took about 6mos. I went from 6mg to 2.5mg in about one month. Then 2.5mg to zero in about 2 months. It sounds pretty fast but I think a full recovery takes much longer than just getting off of the drug.
When I got below 2.5mg, I couldn't taper .5 every week. I had to weave the new dose in or I would really feel it. Even after I got to zero it took months to have a decent energy level and no other symptoms like joint pain, weak muscles, low mood. During the taper I couldn't work for 8 hrs. I was fortunately on a split shift so worked 4hrs, nap, then another 4. I knew I was recovering well when I could go through a full day without a nap.
Sounds like you have a very sensible tapering plan. Good you have supportive people around. Stay well- best of luck to you!

This topic isn't really relevant anymore as I've made the decision. I will post updates on my original Promacta topic at
pdsa.org/discussion-group/7-treatment-general/29570-started-promacta-february-2017.html