2 weeks with itp

Galaxy, 8-1/2 months ago you wrote:

New info from us: todays count 243

Not sure is this influence of antibiotics (as such or them influencing on h.poly) or his body is kicking off in general, but it is a great number

Are you sure now? A lot depends on this question!

Multiple courses of 4x40 dexamethasone (HD-DXM) can be very effective. An interesting article on that top[ic was discussed here:
pdsa.org/forum-sp-534/7-treatment-general/27806-prednisone-versus-high-dose-dexamethasone.html#46771
A lot depends on how well the dexamethasone is tolerated. Some people have a very rough time with the side effects of HD-DXM, and for others it is only unpleasant. If he tolerates it well, then multiple courses are better.

Rob, tnx for answering.
Regarding h.polly, he did get re- tested few months ago and result came negative. He is currently running few more tests, including detailed analysis of thyroid (antibodies were slightly increased)
He didn’t see his hemo yesterday at end (she is on sick leave), so we decide to finish this round of mini dex pulses (he will go on next 4 days on 8 mg and then stop). Does anyone ever try similar protocol? He is tolerating very well, but I’m not sure how it will influence on his adrenal glands - last time hemo says it shouldn’t be problem and that he can just stop with dex.
Regarding high dose dex pulses, we also read few articles on that topic and since he is tolerating quite well till now, we are really keen to use it as (regular) treatment when needed. What I didn’t get is how money rounds of 4x40 mg one actually need to have - all 4 to 6 as defined in protocols or it could be less if response achieved earlier.

The protocols that I have read usually state 6 x 40 mg's and they claim good remission rates. Very few people go that route and if they do, they cannot tolerate it and stop, so I haven't seen much success on here. That doesn't mean it can't happen and if a person can tolerate it, it's worth a shot.

Sandi, I think you meant 4 days x 40 mg repeated six times, 28 days apart (24 total doses).

Galaxy, Half of the patients in the study were able to complete all six cycles, but even those who completed 3 or 4 cycles got excellent results.

Another trial in the same study had 4-day pulses spaced 14 days apart for 4 cycles (16 total doses) and got comparably excellent results.

For those who tolerate it well, high dose dexamethasone is an excellent first or second line treatment.
It has a high success rate, and unlike many other options it does not carry a black box warning.

Many do not tolerate it well. Those who do not tolerate it well move on to other options. Even if they are only able to complete 2 cycles, there is excellent benefit.

Here is the study: www.bloodjournal.org/content/109/4/1401.full?sso-checked=true
Therapy with high-dose dexamethasone (HD-DXM) in previously untreated patients affected by idiopathic thrombocytopenic purpura: a GIMEMA experience

Also this: www.ncbi.nlm.nih.gov/pubmed/15309522
High-dose dexamethasone as a first- and second-line treatment of idiopathic thrombocytopenic purpura in adults.

And this: www.ncbi.nlm.nih.gov/pubmed/20079208
[Short term high-dose dexamethasone therapy in previously untreated idiopathic thrombocytopenic purpura].

And this: www.ncbi.nlm.nih.gov/pubmed/25247485
Long-term effect of high-dose dexamethasone with or without low-dose dexamethasone maintenance in untreated immune thrombocytopenia.

I meant 6 months, 4 days at 40 mg's. I knew what I meant! :woohoo:

Update from us:
-after finishing 2nd round of mini dex pulses, platelets increased to 50; two weeks after they went down to 22.
He had new CBC two weeks ago and that result really surprised us: 52.
And yesterday, another surprise: 86!!
Not sure what is actually causing this great (i will dare to say ) trend: mini dex pulses or almost 3 months gluten free diet (out of it 1,5 month anti-candida diet) – but for sure it make us very happy
His general condition is great.

Update: today platelets at 66. It is 2,5mnths after last round of dex mini-pulses. So we continue with watch&wait.
He is feeling great, and everything is more or less normal in our lifes. 
He got few petechiae on foot and hands, but we believe it is linked with whether conditions and sun exposure (these days is really warm and hot).
One question: for how long corticosteroids suppress immune system?
2 days ago he cut his self on one old ceramic piece (we were cleaning garage) – bleeding stopped very fast but I start thinking about tetanus: he got last vaccine shoot 12 years ago and I’m slightly worried is he more susceptible for infection (he will visit his doc today afternoon)..

As far as Tetanus, if a person is exposed, it doesn't matter if they are immunosuppressed or not. Better to get a current shot.

As far as other infections, he might be more prone to catching bacterial or viral illnesses, so he should take precautions....wash hands often, stay away from sick people, etc.

Update: after tetanus shoot counts dropped to 15…no serious bleeding except petechias and quite large bruises all over the body...Since we are leaving for our summer vacation, agree with hemo to take dex pulses.(4x40mg).
After finishing it, counts at 150 . Good thing is he is tolerating dex very well–absolutely no side effects (for now) ..We also discussed with hemo to maybe go with 3cycles round, but will decide it on the next appointment (mid of August)

This morning he woke up with mouth full of wet purpura-it really scared us a lott because it is a first time he has them so much ..
Tmrw he will go to see his hemo so we will know his counts.
Does anyone ever had experienced such dramatic change-7 days ago he finished dex round and on Monday his counts were 150..

Yes, unfortunately it's quite common with dex. I went from 202 to 1 in a few days.

Thank you Ann.
we are awere that they can go up and down in short period,esp. after dex.
But this (amount) of wet purpura really scared us a lott: he was previously low as 3,but with only one or two small blisters..and now his mouth is almost black..just not sure should we go to er ,or is not to critical to wait till morning..
Also thinking what will be next step: to do new round of dex(he had good response till now)?

The sudden decrease in counts does result in more symptoms than a slow decrease in counts. Not sure why but it often does. The hospital can't do anything for the symptoms except prescribe something like tranexamic acid which is said to help. When I had mouth blisters I did a 'swish and swallow' with the liquid form of the drug. I don't know if it helped or if the symptoms were going to get better anyway. I only did dex once, refused after that and tried something else.

Update: Counts at 5.
Yesterday he started with new round of dex pulses (4x40mg) and hemo proposed to continue with following protocol: 4 days pause, then 4 x20mg, again 4 days pause, then 4x8mg.

Any thoughts/experience about this protocol? We know that dex could be very though, but he is tolerating very well and for now we don’t want to move toward 2nd line drugs (tpo’s) .
He was in some kind of partially remission before that tetanus shoot, potentially induced with dex or/and diet change (gluten free), so would like to see can he go back to that.
Btw, we got labs test new results : ana neg, c3 normal, c4sligthly below (but hemo said it is ok). All other parameters are normal.
Is there anything else that could be tested?

When you wrote c3 and c4, did you mean T3 and T4 - thyroid tests?

Also not clear: did he go off his gluten free diet? Gluten-free has seemed to make a big difference for others on this board, as well as for him.

Your hematologists strategy - tapered dexamethasone pulses - seems to be of his own creation. There is some logic to it, if counts are dropping quickly after a first four day pulse.

After this, and assuming the gluten-free diet is in place, I would be ready to get off this rollercoaster, give up on steroids except as a salvage treatment, and look for another long term solution.

C3 and C4 are complements. Low levels are those that go with autoimmune diseases like RA and lupus. You can also get complement deficiencies on their own which count as immune deficiencies.

Exactly. Elevated ANA and low C3 and C4 were my first abnormal tests that indicated a red flag for Lupus. It got worse from there.

Thank you all for replying.
Rob:As girls said, C3&C4 are complements which low level together with positive ana test could indicate lupus.
Regarding gluten – he is now 5 months gluten free and will continue with this regime
We have some indications that this diet could be a reason (or at least one of the them) of his partial remission in last 3 months and therefore would like to get him in the safe zone and hope that will kick again.
I see you are considering dapson as next treatment possibility for your wife – we were also reading about it and found it interesting alternative to those other “heavy “ drugs. (for those who can take it).
I would appreciate if you can share some materials related to it (I’m sure you have them more than we do )
btw. after 1st round of dex, counts at 44.

As Ann pointed out, "One of the possible side effects of Dapsone is death so do make sure you do your research first." and, "Methemoglobinemia is a known side effect of Dapsone..."
Ann has an uncanny ability to say a lot without wasting words!

I implore you to do your own research, but from what I have read: * WITH PROPER MONITORING * Dapsone is relatively safe.
A thread on Dapsone, with links, can be found here:
pdsa.org/forum-sp-534/7-treatment-general/28423-dapsone.html#49299
and another conversation here:
pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/27939-hopeless-depressed-suicidal.html#49348

My personal opinion is that, for most people, Rituxan and Nplate are better options (and possibly Promacta, although there is some early evidence that Promacta may have a higher rate of thrombosis); Dapsone is far preferable to splenectomy or a lifetime on steroids; Dapsone is a good alternative if (a) the others don't work, (b) there are contraindications to the others, or (C) cost is an insurmountable obstacle. Dapsone has an effectiveness rate greater than 50% (at least a partial response) and does sometimes produce remissions when discontinued.

Dapsone is an antibiotic with antiinflammatory properties. Its primary use is in combating leprosy, mostly in third world countries. It is a sulfa drug, so if you can't take sulfa drugs - such as Bactrim - you can't take Dapsone.

Any questions?

Thank you Rob.
Those threads were reason why we started to investigate Dapsone.
We are still kind off reluctant toward tpo's and rituxan:possible side effects are really scary..
We will see what his hemo thinks.
Will keap you updated.

The expression here is, "Pick your poison."
In this case, that applies literally!
All of the options have scary side effects.

Galaxy wrote: Update: Counts at 5.
Yesterday he started with new round of dex pulses (4x40mg) and hemo proposed to continue with following protocol: 4 days pause, then 4 x20mg, again 4 days pause, then 4x8mg.--

..

An update: he followed above protocol (actually there were 2 rounds on 4x40 and then decrease as above) and results were: one month after counts at 180; today at 230 )
Don't need to mention that we are thrilled.
He is continuing with gluten free diet, taking vitamins C and D
.

That is fantastic! I hope it holds! Keep us updated.

Fantastic numbers! Enjoy them!

an update: yesterday’s counts 195
This is now quite long period without any thp and we are really enjoy it

Great news glad the count is still up!

More good news! I love it! Thanks for letting us know.