3rd crash in 2 months

Badami,

I agree this is messy, with three meds to consider. If you modify more than one medication at a time, you won't know which change is the cause of a drop or increase in platelet counts. If possible, it is best to make one change at a time, unless your son's counts are really dangerously high or low. Also, at 115,000 you are actually pretty close to his target range, so be careful not to make changes that are too large. If you wean him off of prednisone too quickly his counts are likely to drop more than you want.

Very tough call to make. I am not a doctor and cannot advise. I'm sorry that he is in this situation and hope that he gets stabilized soon. It's very tricky when too many meds are involved and you don't know which one(s) are actually working.

Hi Friends

Sons platelets were 355000 today.

I mentioned to doc that this is way too high .

Doc has now planned tapering prednisone by 10mg every week.
(CURRENTLY HE IS ON 30MG)
Cbc after 7 days

After which revolade to be reduced to 50.mg for 4 days and 25mg for the remaining 3 days of the week.
Cbc after a week

Let's hope all goes well until.then.

Thanks for the messages and posts.

Will keep updating

He probably shouldn't reduce the meds like that. Isn't that how he ended up crashing the last time? Aye aye aye.

Hi Sandi

1st ....prednisone is to be tapered
Cbc in 7 days

If platelets are OK then plan to taper revolade as mentioned earlier

What do you suggest since his platelets are over 300000

I have a suggestion in my head but I can't say it....not a doctor. A Revolade dose should be lowered slowly though, based on how counts respond over several weeks. It's not something that can be determined ahead of time like that. Counts will bounce around like a yo-yo, up and down, if the meds are given at high doses and then cut quickly to low doses.

See how he does and if it does not go well, get another opinion.

Sandi, I think in previous instances the doctor was having his son skip days (even alternating days?) of Revolade as a method of tapper. Is something like this what you wanted to say:

Badami. Did the doctor mention anything like eating fish to help thin his blood a bit while having these possibly (extraordinary) high platelet count times ?

Hi Hal/Sandi
Doc mentioned that the last time the tapering of both Prednisone and revolde resulted in a platelet crash.
So This time the tapering is to be done very slowly.

Now only prednisone to be reduced by 10mg and a cbc in 7 days.
If counts are maintained then by another 10mg and so on.

Next (maybe after 4-5weeks )reduce revolade to 50mg 4times a week and to 25mg the remaining 3days a week.

We were advised continue with mycophenolate.

Badami
Steroid tapering too quickly is dangerous. Please make sure it is done slowly and in smallish increments. There is a wealth of information on this site about tapering regimes

Hi friends
Just got the cbc done
His platelets are down from 300000+
To
88000

Doc has now asked us to increase. The prednisone dosage to 25mg again.

He is now suggesting that we should give revolade 50mg every alternate day (instead of everyday)

And continue with mycophenolate

Very confused

ALSO GOT THE H PYLORI TEST DONE WHICH IS+VE
(WONDER IF THIS HAS CAUSED ITP)
Have a app. With a gastro on sat for this.



Have also taken a appointment to meet a haematologist for Tuesday.
This for a 2nd opinion

Pl suggest what next

Badami, I think you have 2 reasonable options:

1. Take your doctor's suggestion
2. Don't change ANYTHING until getting a second opinion.

It depends on your confidence in the current doctor. I would be tempted to hold everything steady until a second opinion, just so if there is a change between now and then it cannot be attributed to a change in any of the doses.

In my opinion, the worst thing you can do is to only partially follow your current doctor's recommendation. Either do or don't.

This is just my opinion and I am NOT a doctor.

Badami, I thought doctor's plan was to reduce steroids and leave Revolade dose constant? I'm confused too. Surely he knows that the target platelet count is 50,000 for Revolade, yes?

I'm confused on this account that prednisone was to be tapered and revolade was to continue.
Now he mentions that since prednisone was tapered the platelets have dropped .

So it was the prednisone that was keeping the platelets up.

Now he is suggesting tapering revolade.

From the mesages read here in the group I was with the opinion that revolade is a maintenance drug and cannot be tapered quickly.

Guys this is truly a roller coaster ride.

Very very worried

Have posted on your other topic regarding alternative therapies

Sandi /Winnie /Hal

What next?

I dunno Badami. Sounds like the doctor is in control.

My only contribution to this thread is that I had heard from others that it was unwise to skip days of Revolade. If the doctor knows different, don't think there is more for me to say.

Wow. You really need that second opinion. Too much inconsistency with doses going on. He is chasing the counts around, changing doses with every count. That is going to keep causing the crazy swings.

You see the new Dr. on Tuesday? It's only a few days away. I like Tamar's choice #2. Your son's counts are fine, especially since he is on Revolade. I hope you have a record of the meds, counts and dose changes for the new doctor.

My sons platelets were 44000.
So obviously crashing.

This is after taking
Prednisone
Revolade
Mycophenolate

Went and met the current hematologist who admit's that he's never seen such fluctuations in counts.

He was suggesting ritux or splenectomy

After all the 3 medicatons
Why are the platelets coming down?

Every 2-3 weeks the platelets seem to be crashing.

Guys .....this is confusing

Any suggestions? ???????

His doses are being changed too often and he's on too many meds. You don't know which drug is helping. The only way to straighten it out is to get him down to one drug, most likely Revolade, and then attempt to find the right dose. It might take time, his counts might drop a few times, but that is the only way to try and get some stability. I'm not sure how many times I can say it.

I'm not sure why the doctor seems so confused about the fluctuations. That will happen when doses are raised and lowered constantly. Even I can't wait until Tuesday. Hang in there.

Thanks Sandi

Anxiously waiting for Tues.

The worry is also cause he has his exams for engineering going on.

Thanks again.

I'm sure that's tough for him. Everything always seems to happen at once. I hope he does well on his exams!

hi Guys

just visited the hematologist today for a second opinion.

he agreed that too many dosage changes have happened and termed it as a knee jerk reaction to platelet counts.

has told us to taper with prednisolone as my son has been taking it for too long and the side effects are significant according to him.

as of now he has suggested

2000mg of mycophenolate(1000 morning and 1000 evening)
50mg of revolade a day
20 mg of predinisolone
to taper this by 5 mg every 10 days till it reaches 10mg
thereafter taper by 2.5 mg every 10 days

he has also suggested to watch the counts every 10 days and if it doesn't work we could try
Rituxin


he termed my sons ITP as severe refractory where the counts rise rapidly but are unable to sustain -- don't know what that meant though!!!!!


he also spoke of splenectomy after 4-6 months if nothing else helps.

i mentioned that i dont need the splenectomy on my child

thats the story so far---

Badami wrote:

he termed my sons ITP as severe refractory where the counts rise rapidly but are unable to sustain -- don't know what that meant though!!!!!

Badami, some folks take a drug and nothing much happens. This is not the case with your son. His counts do rise. At the very least he has responded to IVIG. Also, one or more of the three drug 'cocktail' he appears to be responding to as well.

Because of his earlier trial of responding to Revolade and Prednisone together, and, the response was strong (245,000 as opposed to 100,000) - he appears to respond to both drugs. Likely, either together or separately.

But, none of those drugs, alone or in combination, cause his system to keep his count up on taper. The counts are not 'sustained' and I think he meant even though they rose in effect your son is 'refractory' to that treatment. Something else needs to be tried (redone/refracture again). I suppose he meant 'severally' refractory as meaning the counts drop quickly.

Hope this helps...

Great great great! I love the term, "knee jerk reaction". That is exactly what was done! Sounds like this doctor gets it (so far). Hopefully, he can get your son straightened out soon! I do disagree with 'severe refractory' at this point. Usually that term applies when treatments do not bring counts up at all. Your son does respond and is, therefore, not refractory. He has not sustained counts at this point, but that doesn't make him refractory. He hasn't had the chance to sustain with the constant dose changes. That will take time.

What Sandi said! ^^^

Have you guys come cross cases where the patient responds well initially and subsequently the platelets coming crashing down.

I have yet not found a med that can keep my sons platelets steady for a longer period of time.

HE'S HAD ITP FOR 3 MONTHS AND HAS A TOTAL OF 4 CRASHES.

I'm going ahead with the new docs suggestions.

But do let me know if so many crashes in 3 months are NORMAL?

Badami wrote: But do let me know if so many crashes in 3 months are NORMAL?

Yes, Badami. Crashes are normal, especially when the doses are constantly changed.

Usually when a person is diagnosed with ITP, they start with Prednisone. Sometimes counts go way up and drop as the Prednisone is tapered. A Prednisone dose is not changed with every count. A person might start with 60 mg's, stay on that for a few weeks, then taper by 5 or 10 mg's per week until done. Counts usually go down slowly. When that happens, a decision can be made to try another treatment. I've never seen a patient stay on it and have the dose adjusted up and down in response to a count. It might be adjusted up once during the steroid taper, but it is not a drug that can be played around with like that.

Some people might choose to try Promacta next. In that case, they might start at 25 mg's for a week or two and see what happens. The count might remain low during that time. That's okay if symptoms are not too bad. There's no need to panic. If the count does not respond at 25 mg's, Promacta could be raised to 50 mg's. See what happens over the next few weeks. If the patient hits 45k and stays around there, 50 mg's might be a good dose to stick with. If the patients count only goes to 23k, the dose could be raised again to 75 mg's. Again, see what happens over the next few weeks. If the count goes to 125k, the dose could be placed between 50 mg's and 75 mg's and again, see what happens. This is a process that takes time. Trying to rush it can be counter-productive. Trying to achieve it with too many meds and too much adjusting only delays the stability.

A drop in counts is not always a crash. A crash is when a person has a count of (example) 145k and they drop to (example) 3k within a week. Ups and downs will happen.

I can tell you that it can sometimes take a good year for a patient to feel comfortable with their meds and counts. Now that Promacta is available, that time has been cut in half. It's a good ITP treatment to achieve stable counts but it won't happen over night. You just have to stay calm and know that low counts are probably inevitable along the way. It happens and is not a reason to panic. I know it's hard to be a parent and see your son go through this, but you are doing your best for him by advocating and learning. Patience is necessary with ITP.

Wow Sandi

What a lovely message.
Thanks so much for your prompt help.

And guys I'm truly lucky to have found this forum

That is why we are here.

i only have to get a hint of a cold and my count plummets