Is Promacta not effective if I crash after I am on it?

Cindy - Dex and IVIG rarely ever sustain counts more than a few weeks for anyone. You're not alone there. They are both temporary. IVIG will never cause remission. Nearly everyone will experience a rock bottom fall once the treatment wears off. Dex might cause remission if used every month for 4 to 6 months in a row as per protocol, but only for the few who are really responsive. Prednisone can result in remission for those who are responsive if taken properly. It doesn't happen often. Rituxan can cause remission for about 40% to 50% of patients with ITP. N-Plate and Promacta can also cause remission but it can take years. A few might get lucky after a few months. Most people will crash with N-Plate if they do not get the injection every week. The treatments all work in different ways and have different results. IVIG can be a good rescue treatment when counts are low to bring them up fast, but it will never get you anywhere long term.

You're trying to make sense out of what is causing what and that is a normal thing to do, but ITP doesn't always work that way. Your treatments have been erratic (not your fault) so your counts are responding that way. It can sometimes take up to a year to get stable after diagnosis. Since the TPO's came along, that time has been cut in half, but your doctor hasn't done things the right way since the beginning. I know it's confusing and everyone has an opinion which confuses things even more. I honesty don't know what you're talking about when you say 'immune system ramped' and things like that. I guess that's what I mean by not reading into things too much. Bone marrow biopsies aren't known to cause counts to drop; I think you're trying to over-analyze everything that happens to make it fit into a reason for a drop. Treatments wear off and that is why counts go back down.

As for sticking with Promacta....now that you are on Prednisone, see what happens from here. Maybe that combination will get you to a safe level. The problem is though that you won't know which one is working since you have no clear idea whether or not you even respond to Prednisone. If you do respond, don't change anything for a few weeks unless counts get too high, then you'll have to figure out which one is doing the trick. If your counts do not get better within the next few weeks, make the switch to N-Plate.

Sandi,
Much appreciation for spelling that all out for me again. That was incredibly helpful. It is really a complicated situation with moving parts and just when I think I understand things, I realize there is something else to think about. Sigh.
So thank you for bringing it all into focus.
Good luck getting your Mom discharged tomorrow.
Cindy

Cindy, I was just summarizing the negotiation aspect with doctor because it is important (may have to fire him) and I didn't expect anyone would comment on that, LOL. Obviously changing doctors right now is going to delay progress.

I am confused about one thing in your timeline. You've gone from a fairly consistent 2 weeks response to an IVIG and Dex rescue to a ~24 days on last rescue. I also notice that you bumped up from 50mg to 75mg Promacta at roughly the beginning of those 24 days.

Why haven't you attributed the 24 day extended response to the simultaneous increase in Promacta dose? I don't understand why not. That is a good increase. Since the 24 day response, I've been thinking you are responsive to Promacta - and that's why I cooked up the Prednisone and taper thing. Quiet down the immune system that is 'ramp'ing up and down with every rescue with low dose Prednisone.

Once quieted down and rescues are not needed, then Prednisone can be tapered. Once tapered, one can see what the baseline count is from the Promacta.

Hi Hal,
You wrote:I am confused about one thing in your timeline. You've gone from a fairly consistent 2 weeks response to an IVIG and Dex rescue to a ~24 days on last rescue. I also notice that you bumped up from 50mg to 75mg Promacta at roughly the beginning of those 24 days.
You know you are right that is when Promacta was increased to 75mg, the first day of that cycle infact. (you are an exceptional investigator)

You wrote: Why haven't you attributed the 24 day extended response to the simultaneous increase in Promacta dose? I don't understand why not. That is a good increase. Since the 24 day response, I've been thinking you are responsive to Promacta

I guess I thought if the platelets crashed that the Promacta wasn't working. Are saying that if we can keep getting more and more days tagged onto each cycle that the Promacta is actually possibly working?
But that makes sense that if the days are increasing then we can attribute that to the Promacta. (I also started homeopathics and no gluten this last cycle)

You wrote: that's why I cooked up the Prednisone and taper thing. Quiet down the immune system that is 'ramp'ing up and down with every rescue with low dose Prednisone.
I'm am so hoping your cooked up idea does do what we hope it will and calm down the immune system response to the IVIG/Dex bursts and the platelets can level out.

You wrote: Once quieted down and rescues are not needed, then Prednisone can be tapered. Once tapered, one can see what the baseline count is from the Promacta.

OK makes sense to me. Fingers crossed!

Thanks so much!
This is really complicated stuff!

Cindy - I don't think you can attribute the longer response to Promacta at this point. You're right, your counts dropped a lot and that would lead me to believe that Promacta is not working. However, since you have been on so many different treatments, it's impossible to sort it all out. You also might be a slow Promacta responder and it hasn't kicked in yet. IVIG does not always last the exact same amount of days in between treatments. The dose and brand of IVIG can make a difference too. There are a lot of variables. Counts do irrational things sometimes and you can't figure out what will happen next based on what happened the last time. I'm curious to see what your next count is since you started Prednisone.

Dex and Prednisone are both steroids so if Dex ramps up the immune system, so does Prednisone.

Thanks for your insights!
I am planning on doing a blood test on Thursday which will be day 17. I am hopeful my platelets cooperate and I will be safe to go up to the mountains with friends this weekend Sat and Sun night. These trips are hard to plan!

Cindy1 wrote: Hi Hal,
You wrote:I am confused about one thing in your timeline. You've gone from a fairly consistent 2 weeks response to an IVIG and Dex rescue to a ~24 days on last rescue. I also notice that you bumped up from 50mg to 75mg Promacta at roughly the beginning of those 24 days.
You know you are right that is when Promacta was increased to 75mg, the first day of that cycle infact. (you are an exceptional investigator)

You wrote: Why haven't you attributed the 24 day extended response to the simultaneous increase in Promacta dose? I don't understand why not. That is a good increase. Since the 24 day response, I've been thinking you are responsive to Promacta

I guess I thought if the platelets crashed that the Promacta wasn't working. Are saying that if we can keep getting more and more days tagged onto each cycle that the Promacta is actually possibly working?
But that makes sense that if the days are increasing then we can attribute that to the Promacta. (I also started homeopathics and no gluten this last cycle)

Yes, more days. More IVIG - longer response, more Dex - longer response. Look at it this way. Going from 50mg to 75mg Promacta is a 50% increase in dose. Your response went from 2 weeks to just over 3 weeks. No surprise, that is a 50% increase in response time. AFAIK the homeopathics and gluten might give you 'on the margin' increases (over the short term) in response. ITP drugs can send your counts through the roof, right? Promacta and Nplate are powerful drugs.

Cindy1 wrote: You wrote: that's why I cooked up the Prednisone and taper thing. Quiet down the immune system that is 'ramp'ing up and down with every rescue with low dose Prednisone.
I'm am so hoping your cooked up idea does do what we hope it will and calm down the immune system response to the IVIG/Dex bursts and the platelets can level out.

If you get another 24 day response obviously your counts on Thursday could be quite high. That would suggest taking Pred for some time past the expected crash at 24 days.
Good luck on Thursday.

Cindy1 wrote: You wrote: Once quieted down and rescues are not needed, then Prednisone can be tapered. Once tapered, one can see what the baseline count is from the Promacta.

OK makes sense to me. Fingers crossed!

Thanks so much!
This is really complicated stuff!

Hal:

Slight humor here, but I would think that a 50% increase in dose should lead to a 50% increase in counts, not length of time. At any rate, if only it all worked that way!

Yes, the increased counts leads to increased time.

Hio Hal,
I will definitely keep taking the prednisone. It is so weird when I was on the 100mg of Prednisone and even weaning down I was deep in side effects moon face, leg rash, crazy brain. With the 15mg, I have no side effects that I can notice. With some luck, platelet levels will stay 50 or above.

Hi Sandi,
I think if the levels are really high we have clotting worries. Hopefully that won't be the case!
How is your Mom?

And humor is good!!!!

My mom was released from the hospital and admitted to a skilled nursing facility for rehab. She's doing a little better, thanks!

Good to hear!

When I did low dose Prednisone years ago, I didn't have any real side effects either. I started at 20 mg's and took that dose for a few weeks. The only thing I noticed was that about an hour or two before my dose was due, my heart would start to pound. I guess it was withdrawal.

I've also been on 15 mg's for years and at this point, I couldn't even tell you if I have side effects because by now, I think that everything I feel is normal. It does so much for inflammation though that any side effects I have are well worth it. I'd take an even higher daily dose if it was safe. I am having long term side effects now that are not worth it which is why I'm starting to taper off of it. That took many years to happen though.

Ok guys...
582 platelet count today. First lab test since 16 day ivig, dex cycle
And 7 days since started prednisone 15 mg.
Here’s my plan:
GP said decrease the pred to 12.5 for a week.
Stopping Promacta since protocol says stop taking it if over 400. (Until it goes way back down. I think 150 but I have to double check that.)
I’ll get a platelet check Friday.
Do you recommend I do any aspirin? I did when it was 1.3 million
Thx guys!
Cindy

So too soon to know if the cycle is broken I can only hope!

Cindy:

I'd check with your doctor before taking aspirin (although his opinion isn't always the best advice). Still, it should be taken with the approval of a doctor.

That response seems too high for such a low Prednisone dose....there seems to be no rhyme or reason to your responses to these meds. I just cannot figure you out. I do suspect that you are having trouble with stability because of all of the treatment mixing and starting and stopping treatments so much. I can't wait to see what happens on Friday.

Sandi,
It is crazy! I agree. Maybe the homeopathic stuff is kicking in? And it is just day16. You know things can crash quickly as the cycle since IVIG gets longer...hopefully not this time! I am concerned because the prescribing info said do no take Promacta if you are 400,000 or greater until you get back down to 150,000, so I did not take it last night. Emailing dr for guidance but any thoughts are appreciated.

Since you are going for another count on Friday, I'd do what the guidelines say until then.

Oh my Cindy, I'm sorry to hear this. I guess with ITP, 'live and learn' is the standard.
Posey's earlier comments seem pretty sage right now. Perhaps you shouldn't have taken any Pred until symptoms occurred - then dose as she did?
Looks like:
- dose was too high
- dose started too early
- you are very sensitive to Pred
- your doc guessed wrong, you are responding to Promacta

Your GP recommendation of lowering the steroid dose sounds odd to me in this context. Does the GP not know you are taking Promacta?
There are probably lots of ways to crack this nut going forward. Others here probably have a better idea than I. Here is one that comes to mind. Discontinue steroids for a few days, then restart them at a much lower dose. Didn't mrsb04 talk about 3mg initially? From momto3boys experiment (on another thread), perhaps 2 to 3 mg is a 'low' dose for Cindy too.

Since you seem to be working with your GP, hopefully you can get a plan working closely with him/her.

Hi All,
My update is the hemo wants me to stop the Promacta for about 3 more days then restart on same 75mg dose. The Promacta literature says don't take it again till platelets are at 150,000 and to restart 25 mg lower than current dose. My hemo thinks if I wait too long I will have a platelet crash. Such a fine balancing act! He wants me to stop all steroids but my GP wants me to continue on weaning off the Prednisone slowly. I'll get a blood test tomorrow and frequently now to monitor the situation. Also today is day 17 post IVIG so I am at that crucial spot where platelets can crash. (hopefully they won't!)
Appointment with homeopathic dr in morning.

Cindy
Is this the same haemo who suggested N Plate at the max. dose. Sounds like he doesn't do protocols at all.
As for steroids I wholeheartedly agree with your GP regarding weaning off steroids. Yet another protocol being ignored by your haemo!!!!
Do not come off them too quickly you will feel absolutely dreadful trust me I've been there. See link below from Rob 16.
pdsa.org/forum-sp-534/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html#54152

mrsb04 Look at the time of your post! You must still be having steroids in the blood! Yes it is the same hemo that suggested NPLATE at max dose, go figure??? The hemo has had me on Dex on 6 different bursts since 6/1. Yikes... 2x were at 20mgx4 days and 4Xwere at 40mgX4 days...
Your note is really helpful as was your link!
I hope you don't mind Poseymint, I copied and pasted your great tapering info that was on the other thread:
If we go by what Poseymint posted...and what my gut tells me if my body feels good... I want to go down to
10 today for 2 days then
7.5 for 3 days then
5 for 3 days
3 for 3 days
then 2.5,etc

Then see how the platelets are doing.

I started at 15mg/day of Prednisone last week. Yesterday down to 12.5...the GP dr wants me to do 12.5 for up to a week then 10x a week and 7.5 a week...... I think the GP is going too slow after reading Poseymint's post and my gut. Thoughts?

I'm off to the homeopathic dr.
Thanks again fro your note mrsb04.
Cindy

Poseymint wrote:
I follow a tapering schedule that my hemo and I came up with a couple years ago. Its pretty good. I've posted it before but will again for anyone in the same boat. I taper fairly quickly down to 7.5 without problems. But then I begin to slow it down. I then reduce the dose by .5mg every 5 days to a week. I alternate doses for a few day at the end of a week to weave the new dose in- this is especially important when the dose gets below 2.5mg. I've noticed thats when the symptoms of adrenal insufficiency start to hit, below 2.5mg.

If I'm having trouble on the new dose, I will spend more time alternating days with the prior dose, maybe for an entire week. For example 2.5 then 2mg until I'm comfortable on the new dose of 2mg. Going slow like this makes it so much easier! I don't believe in suffering the withdrawl symptoms too much. Yes like your article says there will be some symptoms but it seems easier on my body if I take time with the taper.

I've been reading posts on other forums of people tapering prednisone- hey misery loves company! And so many people are having terrible experiences all because they are tapering way too fast. Its often that they want so badly to get off the drug that they make big jumps in their taper thinking they will feel better if they can just get off "this poison"! I understand the thinking. But in my experience it doesn't work well that way.

Your article reminded me that I really need to take special care of myself while I'm tapering and after I'm off pred perhaps for many months to a year. Sleep is especially important- lots of it, and just relaxing.

Cindy
I'm in the UK it was about 9am. Now it is almost 5pm and nearly dark.
I have to say, from personal experience, don't come down too quickly. Below 10mg I'd say at least a week on each dose coming down to 7.5 mg a day.
The fun starts as you get below you own physiological dose, (approx 7.5mg a day) because your adrenals need to kick in to compensate for the shortfall. pdsa.org/forum-sp-534/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html]Link from Rob16

This is the very tiring bit. Protocol is 1mg/month drop in dose. I would suggest 0.5 mg/ fortnight { copy of a post below explains}

I've attempted 3 tapers so far. The first time I followed my Haemo's advice, ended up in my GP's surgery a wreck, 6 months off work to get over it.
2nd time, I took it much more slowly. N Plate stopping working put paid to that taper.
I have been on my 3rd attempt since last Christmas when I was on 20mg and made it down to 3mg/day by the beginning of September. I am staying on this dose for 3 months. Giving my adrenals a bit of a break. Constantly having to adjust to more work, they deserve a little respite.

I remain eternally grateful to Poseymint, who offered this invaluable advice, on my Topic

When I was tapering I had fatigue and achy joints- I had to sleep a lot to get through it. I couldn't over-work or stay up late. Stress and work pressure really made me tired. I tried to exercise at the gym but my muscles felt so weak and shakey after riding the bicycle- I had to be gentle on myself and take it easy. I knew I was getting my adrenals back when I could go all day without taking a nap. good luck!

I tapered even slower than 0.5mg per week because I alternated days to weave the new dose in. Example: 3mg for a week, then alternating days with 2.5mg for a week. Then 2.5mg for a week. Sometimes I even stayed on a dose for longer than a week if I felt too tired to lower it.
After I got completely off pred I was sensitive to stress for quite a while, 3-6mos. Just as in the article that Rob posted about adrenal insufficiency. If I stayed up too late or worked long hours I would really feel it! It would be hard to recover. Also emotional stress made me tired. BUT overall I felt so much better! Just so much calmer, relaxed and easy-going. that was nice. Plus so great to lose the weight that I had gained and lose the moon face, double chin. I had so much fat around my neck I think it was giving me sleep apnea- ugh. I am sleeping and breathing much better since off pred.

If you get a nasty infection take up to 20mg a day for 3 days then go back to where you were on your taper. I failed to do this s in June and regretted it for about 3 months.
I hope this has been of use.

Oh so many opinions and two different doctors giving different advice! Goodness.

I'd wait and see what your counts are before doing anything with Prednisone and I'm not so sure about the 75 mg's of Promacta. Again, too much stopping and starting of treatments. You need slower adjustments.

My comment for this thread:

Steroids? What are those, never heard of them. No, really, never.

Sigh
So now back to 161,000, thinking I should really start getting comfortable with if my platelets go down to 5,000 or even maybe lower. I need to be worried about symptoms and not the numbers. People are OK with mouth blisters, right? I used to think mouth blisters was a big problem for bleed. But I need to decrease that fear.

Also, now that I am going down 50,000 a day maybe I'll up the Promacta to the old therapeutic dose of 75mg. My hemo would agree.

Thanks for your thoughts.

Cindy, haven't you decided to follow the Mayo Clinic advise? It's not obvious to me why you'd want to not continue to follow it.

Hi Hal,
Good question.
It occurred to me that I did not give my Mayo dr the info about the recent IVIG and dex burst so he did not have all the info.
Meanwhile...161 platelets and the guidelines, my hematologist and my IVIG history make 75mg make sense.
Meanwhile I am still hoping that your low dose prednisone idea will get me through with no big crash.
Thanks,
Cindy

Wasn't the 75 mg dose plus Prednisone the reason your counts shot up too high?