2 weeks with itp

Update:
Today’s count 146; for last 10 days on 12mg .
Although it is quiet decrease from last time, think the number is still great. (it could be that huge 240 counts were due to the antibiotics for h.polly)
He changed/speed up his tapering schedule (after 24 mg he went on 16 mg for 10days; after that count was 240 and then he tapper down to 12mg) – we have discussed this schedule with one steroids highly experienced doctor which thinks that he should slow down after 12-10mg..
From tmrw he will go on 10 mg and stay on it for at least two weeks .
Taking only preds and vitamin c, all other stuff (natural supplements) we put aside ( for now).
Overall condition great, except slight moonfaced no other side effects from preds, and no problems during tapering
Today doctor proposed to introduce Imuran in therapy - he explained it would help to keep counts while tapering preds.
Taking in account my husband’s overall situation don’t see any reason to introduce new one, especially one whit such side effects and potential malignancy …
So again, confused with hemos advice and suggestions..
Any thoughts/experience on this preds+Imuran combination while count ok?

I would not consider imuran with normal counts. To me even suggesting it is a red flag about your doctor.
Erica

The problem with that little suggestion is that Imuran can take weeks or months to work. That would not be helpful at all to 'maintain counts while tapering Prednisone". He might be off of it by then, or at least low enough that it wouldn't keep counts up anyway (usually below 7.5 mg's).

I have taken Imuran for Lupus. I have been on and off of that and CellCept a few times. I can't stick with them because I keep getting sick and stay sick for months....can't kick viruses or bacterial infections. I end up with several rounds of antibiotics and have to stop taking the drug in the meantime. My Rheumatologist is all ready to give me CellCept again at my next appointment. You're right, the potential for malignancy isn't anything to be taken lightly. I have a nodule in my lung due to another immunosuppressant that I've used. Long term, they are not good unless really needed.

This is already 3dh un-necessary/to early treatment that this hemo is proposing, and we definitely don't have trust in his expertise.
Actually, we are using him just for cbc and drugs prescriptions, everything else coming from him we are challenging elsewhere.(unfortunately, other two we have visited also don't look too promising)

We are waiting one new hemo to came back from some education and will try to transfer to her.
On a positive side, at least we have learned so much about different kind of treatments and drugs interactions – sometimes I feel I could easily become specialist in this area

You'll become a specialist - most do. :S

Hi all..
Here we come again..
It is now 5 months dealing with this stupid condition..
Until now , everything went more or less well : kind of slow tapering from steroids, with counts constantly above 140 (with decreasing trend following dosage decrease) , and overall good condition.

And today : counts are on 48 
For the last 3 weeks he was taking 1mg of Medrol , and the plan was to go to 0 if today’s count will be good.
Any advice what now?
To go back to 2 mg for few weeks? Or to continue with 1 mg?
Except vitamin c, he is not taking any other medicine.

At a count of 48, most would do nothing but monitor at this point. If counts drop lower, you'd have to see what the doctor suggests. Going from 1 to 2 might not make much difference. Both are pretty low doses.

You have a few options, but I'd wait and see what the doctor would like to do.

Tnx for replying Sandy.
We received call from cb –they double check his counts (manualy) and correct result is 110 . (3 weeks ago it was 140 and after that he went from 2 to 1mg).
As from tmrw he will stop with steroids so we will see what will happen.

And hemo advice/recommendation was following: if result is below 100, go back on higher dose and after few weeks start again with tapering; otherwise continue with tapering

Wow, that's a big difference in counts. He may have had clumping which can cause the result to be lower. There's a lot of that going on lately.

Hmm..should we be worried about cloths?

This is not clotting, but is clumping in the test-tube.
It is referred to as pseudo-thrombocytopenia.
An agent called EDTA is often used to prevent platelet clumping in the specimen, but sometimes it actually triggers an antigen to cause more clumping. The clumped platelets are then not counted by the machines, or are counted as something larger, like red blood cells. Sodium Citrate is used as an alternative to EDTA to prevent clumping.
I have not found any connection between pseudothrombocytopenia and a tendency to suffer blood clots, but someone here might know more.

Otherwise, clumping is not a cause for worrying about clots.

www.medialabinc.net/spg280957/pseudo_thrombocytopenia_platelet_satellitism_and_p.aspx

I've not heard that clumping and clots are directly related, although large platelets and microparticles may be a factor in both. Interesting thought.

I was just thinking( by pure logic) is there any connection between clumping in the tube and tendency to do the same inside the body (clots are the platelets clumps formed in plug, right?).

There is a lot that isn't known about the tendency to clot with ITP. They do know that clotting can be a risk for several reasons, but there is still a lot to learn.

I think clumping is more common in vitro though because the blood is stagnant and just sits there. When it's in the body, it is circulating and moving around.

Update:
Two weeks without medrol and counts dropped to 68 (last time were on 110).
They are obviously on downside path, although we hope they will stop somewhere in safe range..
Any experience what we can expect (counts were floating around 150 before coming to 2 mg of medrol, and then started to drop..)?
I know everyone is different, but is this classical way of dropping when out from steroids?
Hemo thinks they will crash soon and wants to talk about new therapy, but we decided to stay in watch and wait mode until no severe symptoms.

There is no way to predict what will happen. Some people go up, some stabilize and some go down. It can be slow or fast. I wish I could tell you more.

New cbc today and counts are 7 …
Will try to get hemo appointment tmrw,or next week Monday, although we know his reaction: hospitalisation and new round of treatment.
My husband really wants to continue with watch wait approach, but i'm scared with this single digit level.
He has some bruises and few petechial, but overall condition is great and there so no signs of wet purpura or any active bleeding at all – on contrary, this morning wound after cb heeled really fast. (+he works in office)
WE see on other threads that some people (and hemos) also deciding to focus on symptoms and not the counts and to stay in w&w as long as there is no active bleeding..
Any advice? Does he really putting himself in huge dangerous by not treating such a low counts (last time he was on single digit doctor said he is dead man walking…)?

Current thinking is that low counts do not necessarily equal a medical emergency. Symptoms count more. Some Hemo's still hospitalize and over-treat, probably due to inexperience or old school learning.

Both patients and doctors should do what they are comfortable with. The problem is when the ideas clash, so it's important to find a doctor that is willing to compromise or one that has similar beliefs as the patient. I think the term "dead man walking" is a bit extreme.

I do not believe that staying out of the hospital places a patient in great danger unless symptoms dictate otherwise. I've never been in the hospital with counts under 5, nor have many others. Some people cannot get counts up with any treatments and just live with very low counts. You couldn't keep those people in the hospital forever.

After two five-day hospital stays right after being diagnosed with ITP, it became clear that being hospitalized just isn't feasible. I then went nearly two months of single digit counts without being in the hospital, all the while looking for a treatment that's worked. I quickly got to a mindset of not worrying about smaller symptoms and just focused in being mindful of larger symptoms...signs of internal bleeding, for jnstance. You can't go out and lead a reckless life, but it's entirely possible to live a life outside a hospital with single digit counts. Just as long as you keep looking for a treatment that works. I have recently found that NPlate works for me and you will find something that works for you, as well!

So, yesterday result was 7 in a machine and 0 in smear. It was done in one new lab and later we got tip that they use to have some strange results.
So, we repeated it today in our old lab and result is 10 in machine and 44 in smear.
This seems much better but again this difference machine vs. smear=which one is actually relevant indicator?

Neither is an exact science, but I tend to believe the actual smear more. The analyzers can count other cells that are similar in size to platelets. The margin of error for the analyzers is said to be about 5k.

Those are some very odd differences. The first three numbers are similar, but that 44 in there seems strange based on the first day of counts. Knowing the exact number isn't all that important...look at the range. Under 10k....pretty much the same. 20k to 30k, again, same. 30k to 50k....you get what I mean.

Update: todays counts (in smear)=16 ..
New hemo proposed to start with new therapy approach = pulsed hig hdose dexamethasone for 4 days and then single dose of IvIg..
Does anyone have experience with this combination?
What to expect from Ivig – we really don’t like reactions and side effects which are listed..

The worst side effect that usually occurs with IVIG is aseptic meningitis. That lasts a day or two then subsides on it's own. The problem with IVIG is that the results are so temporary; a response usually only lasts a week or so for most. You might have a better shot at getting counts up with Dex, but many times counts rise quickly and then bottom out after the drug is stopped.


I'm sure that combination has been given to people, but as far as I know, there is not much data about those two causing a sustained response.

Our new hemo (which is very knowledge about ITP + has great, calming approach) thinks this combination could have good impact.
She’s being using this for a while on her patients with refractory itp and in her experience it has 50% success rate .
My husband overall condition is (still) great.
Hemo says that based on results from all tests they have done, she can exclude all potential underlying conditions (including solid tumors and lupus).
So we are going to try this (and hope that side effects from both drugs will skip him).
One interesting thing she has mentioned while we were talking about 2nd line approach (w&w vs drugs): she ‘s not keen to go with Rituximab at all, because some recent analysis showed increased level of some brain infections after its usage on ITP patiantes –does anyone heard about it (I’ll ask her more details when we see her next time)?

Well, I'm not sure how that combination would result in a sustained response, but I hope you share the story as it happens. I'm interested in seeing the end result.

Rituxan can cause PML (brain infection) and can be quite serious. Luckily it is very rare and mainly affects people who have a compromised immune system. There is a test that can be given prior to Rituxan to see if a person is at risk.

He finished this treatment round..

After 4 days dex, his counts were 130, we hope that Ivig will not raise them to high.
We asked doc more details why this combination could work, and she told us that in some patients it simple does -it seems that synergy from those two effects somehow reboot the system.
Nevertheless, we are investigating 2nd line possibilities and we are almost sure to proceed in watch and wait mode, as long his counts are >10 and there is no serious bleeding signs.
As I said, we finally have confidence in his new hemo, and she is also against overmedication (this last one was her proposal based on results she had with it, but she was also fine if want to wait as long as it is >10)

Sounds good so far! Keep me updated. Since both of those treatments can be temporary and work in different ways, I'm not sure how they'd sustain counts, but it will be interesting to see. Is she only going to have him do the combination once?

I like the fact that she doesn't over-medicate. Too much of that going on these days!

Hi,

Finally found some time to give an update:
Although response on dex+ivig was great(above 160) it didn’t last long – 10 days after counts were at 16.
Since we were going for skiing for new year break, we agreed with doc to repeat 4 days dex treatment(just to be on safe side while abroad)
Now is one month after last dose and counts are still in safe zone (67)
What is interesting, he did bc 10 days ago for some other tests and counts were 44. So, for the 1st time he is recording slight increase without taking any thp.
He is currently on and-candida diet (although tests on it came negative, he has so many symptoms of infection that we decided to try it). This is at the same time gluten elimination diet (still waiting result on gluten intolerance).
One interesting thing – few days ago he took piece of cake (suger+gluten), and day after he got petahies on his hand (before that he didn’t have them neither and bruises for some time).Don’t know is it connected or not, but he will definitely proceed with this diet for some time.
Otherwise, feels really good, no fatigues or any other symptoms/side effects. 

Feeling good is the most important thing, in my opinion. It sounds like ITP isn't holding him back from anything....great!

Good luck with the diet. Even if it doesn't help ITP, it can still be good in the long run. Thanks for the update!

Short update from us (+to keep our thread on 1st page)
A week ago my husband notice few blisters in his mouth and that was sign for us that his drug free period finished (it was 2,5 months after his last course of 4x40 dex, all that time counts in safe zone and no bleeding signs).
Count was 10 and his hemo propose to start with lower dose of dex with following schedule:
4 days with 8 mg, then 4 days pause, then again 4x8 mg (oraly).
Today is the 4th day of pause and count is 48 – not sure should he continue with 2nd round of 4x8, or to wait to see what will happen and opt for 4x40 dex course if/when will drop <10 (he will see his hemo later today).
Any thoughts, advice?