TOPIC:

My doctor want me to get off all of the medicine, not just prednisone, but I don't want to take the surgery just based on my doctor's "guessing".

I have tried Danzol at the beginning, but my liver didn't tolerant it. For the MMF, it seems too expensive in Hong Kong.

drbean7218 wrote:

My doctor want me to get off all of the medicine, not just prednisone, but I don't want to take the surgery just based on my doctor's "guessing".

I have tried Danzol at the beginning, but my liver didn't tolerant it. For the MMF, it seems too expensive in Hong Kong.

I'd be tempted to ask the doctor what he will try next if splenectomy doesn't work. Then do that instead.

That is unfortunate about Danazol and MMF.

Let me list of few ideas. You've probably thought of them already. Perhaps one is new.
- Is there a 'patient assistant' program for Promacta or Nplate where you are at? Take nothing but higher doses of one of those drugs.
- Is Fostamatinib available?
- Apparently there is a study in Peking where they are testing Lipitor to improve platelet production of the bone. Sounds promising since it is suppose to help 70% of patients.
pdsa.org/products-a-publications/e-news/2018-enews/item/1617-pdsa-enews-042018.html#Lipitor
- Try Dapsone, in an attempt to replace Prednisone with Dapsone, which can be taken for long periods of time
- Is Vinblastine (a chemotherapy drug) available? I don't have any data on it but have suspected it helps with either row 3 or row 4.

Thank you for your sharing.

My platelet count dropped again after injection of IVIG.

I didn't stay at hospital this time, but I am not sure whether the no. of platelet dropped dramatically after few days.

The combination of my treatment:
a. Cyclosporine A - 200 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 10 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily

The platelet count increased to 122, but the medical treatment remain unchanged.

The combination of my treatment:
a. Cyclosporine A - 200 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 10 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily

Hello drbean.

I was looking at this study on Cyclosporine:
www.haematologica.org/content/93/7/1113?ijkey=3373a574af96d31ed84b8234408cb1d20c3abee1&keytype2=tf_ipsecsha
"A Possible Role For Low-Dose Cyclosporine In Refractory Immune Thrombocytopenic Purpura"

In Figure 1 it shows that some folks counts rise very slowly. As long as a year. Wow, that's a long time! With your recent increase to 122, that sounds consistent.

Dr. Bean,
It's good to hear that your count has gone up and hopefully staying steady. Mine had dropped to 3 back in February and now has risen back up to 30000. I just had the IVIG and Decadron pulses. Stress and maybe Doxepin (for Sinequan) starts my platelets to drop. And, it's hard to eliminate stress from our life. I had a 7 1/2 year remission before this last relapse. Good luck to you and thank you for sharing!
DeeDee Marie

DeeDee, how are things?
Haven't you had remission with just a Dex pulse before? Don't think many have reported that...

Hi Hal, I meant to say that my platelets are at 300,000!! Sorry for the "Big" typo! I relapsed on around February 26 and was in the hospital for three days. My doctor again gave me 3 or 4 IVIGs and I did the Dex pulses (on for 4 days--then wait two weeks and do them again). My platelets started going right up again and so far have stayed up. I knew I was going to relapse as I was going through a lot of stress, working hard on selling our home--then moved from Calif. to Arizona. My doctor thinks I am a lot different then his other patients in that I go "way" down, but once I feel better and stronger, I start going up again. But I do need to watch myself since being too tired and stressed can bring those platelets right down.

Hope you are doing well too! DeeDee

DeeDee, ahh, 300,000 is much better for sure.
I notice that both you and 'RiseAbove' use Dex pulses (and IVIG) to get back into remission. Also that you both describe well versus poor health feelings that go with the ITP. Apparently her platelets go real low too. She reports taking a drug called Trazodone. Have you heard of that?
pdsa.org/discussion-group/search.html?searchuser=RiseAbove&exactname=1&searchdate=all&order=inc&childforums=1

Do you suppose doing a one day Dex dose when these poor health feelings come on would do any good?

Hal, I actually tried Trazodone years ago for my sleep problem. After about two weeks, I started feeling really sick from this medication (like I was going to have a heart attack--tightening of the chest). Right now, I just take the Klonopin to help me sleep since I have reactions to other medications. As far as the Dex dose, my doctor did mention that these are very hard on the body--so I'm not sure if they'd give it to me very often. In 2010, I actually had 4 Dex pulses; this last time around, the doctor only gave me 3. My doctor told me also that as we get older, you can have more side effects from the pulses (he mentioned that one of his patients (in his 80's) had hallucinations from the pulses and couldn't take any more. I hope 'RiseAbove' is doing better too. But, I am forced to try and take care of myself or be forced to take the pulses. They do mess you up for a while! Oh, also forgot to mention that my last doctor wanted me to take Promacta when I was admitted to the hospital. But, my co-pay would have been $12,000/year to go on it since I am on Medicare. I opted not to go on it.

Ahh, but folks who get remissions from steroids and IVIG can usually jump tall buildings and are faster than a speeding bullet. Ha. I mean, you probably would be very responsive to Promacta. Might go back into remission after only a short stint with it. Perhaps with some sort of medicare advantage plan the costs would be less. Don't know.

I just stumbled on some new info. Have you heard of 'SAMe' supplement for mood enhancement? There was some pretty glowing reports by Amazon reviewers of those products. But apparently it should be avoided if on certain other drugs.
en.wikipedia.org/wiki/S-Adenosyl_methionine

No, I haven't heard of SAMe supplement for mood enhancement. I think my insomnia is from all the steriods I've taken through the years. Though, I have been doing better now. I don't react as much to the pulses like I did in 2010. But, when they whear off, you do feel quite tired. I was just starting to feel sooo good before this last re-lapse. Had so much of my energy back. I will concentrate on getting back there. I have a new doctor here in Scottsdale, AZ (event hough we live in Prescott Valley). He was recommended by someone here on our PDSA board. I really like this Dr. Patrict Donovan. The only thing about going on an Advantage Plan so that I could take Promacta is that right here in Prescott Valley, you cannot get a very good doctor. There is a shortage of doctor's here and a waiting list (it takes until Dec. just to get a general practicioner!) I'm sort of stuck on a Medicare Supplement for now. I would be open to taking Promacta for a while to get the platelets back up. Right now, as long as I rest up, my platelets seem to go right back up after treatment with the pulses, so I am glad about that. My former doctor said that my ITP seems to burn out after while. Then the platelets go up--just need to get through the few bad weeks.

The platelet count increased to 201 on 18 Dec 2018, but the medical treatment was changed.

The combination of my treatment:
a. Cyclosporine A - 150 mg daily (decreased 50 mg)
b. Eltrombopag - 25 mg daily
c. Prednisone - 10 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily

The platelet count increased to 294 on 23 Feb 2019, but the medical treatment was changed.

The combination of my treatment:
a. Cyclosporine A - 100 mg daily (decreased 50 mg)
b. Eltrombopag - 25 mg daily
c. Prednisone - 7.5 mg daily (decreased 2.5 mg)
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily

Sounds like you are doing well DrBean. Got that Cyclosporin down. An accomplishment all by itself. I was looking through your history. I guess it was going from 7.5 to 5.0 Prednisone (and with 50mg Cyclosporine) is when count crashed before. Getting close again. Doc planning to drop Prednisone while keeping Cyclosporine at 100mg this time ?

Good luck !

Hal9000 wrote:

Sounds like you are doing well DrBean. Got that Cyclosporin down. An accomplishment all by itself. I was looking through your history. I guess it was going from 7.5 to 5.0 Prednisone (and with 50mg Cyclosporine) is when count crashed before. Getting close again. Doc planning to drop Prednisone while keeping Cyclosporine at 100mg this time ?

Good luck !

Fyi, the information is updated. My platelet count was 269 on 13 Apr 2019.

The combination of my treatment:
a. Cyclosporine A - 75 mg daily (decreased 25 mg, am: 50 mg, pm: 25 mg)
b. Eltrombopag - 25 mg daily
c. Prednisone - 5 mg daily (decreased 2.5 mg)
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily

drbean7218 wrote:

Fyi, the information is updated. My platelet count was 269 on 13 Apr 2019.
...
a. Cyclosporine A - 75 mg daily (decreased 25 mg, am: 50 mg, pm: 25 mg)
...
c. Prednisone - 5 mg daily (decreased 2.5 mg)
...

Ack! There it is, 5 mg of Pred. Easy DrBean. Take it slow.
The 269 count is nice. Looks like it was 215 before the previous (last year's) crash.

The platelet count from April to Sep 2019 are as follows;

11 June 2019: 250
Cyclosporine A has been decreased to 50 mg daily (am: 25 mg, pm: 25 mg)
23 July 2019: 267

7 Aug 2019: 7
11 Aug 2019: 122 (after 4th injection of first round ivig)
24 Aug 2019: 7
27 Aug 2019: 100 (after 3rd injection of 2nd round ivig)

6 Sep 2019: 37
7 Sep 2019: 8
11 Sep 2019: 80 (after 4th injection of 3rd round ivig)

The combination of my treatment:
a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Eltrombopag - 25 mg daily
c. Prednisone - 20 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily

Upcoming days are critical, since the effect of ivig only last for a week or less than a week, especailly the platelet count increased slower than expected in last round of injection ivig. Also, the effect of Cyclosporine A was slower than our expectation.

The crashed may be due to stress or emotion. I found that the platelet count could be crashed in 1 or 2 days, even I have great figure at the end of July 2019.

Hi Dr. Bean, I'm not on the forum much any more as I'm just too busy. We moved last year and I had a relapse after almost 8 years. For me, it's either due to stress or being tired and run down. I always stay with the same treatment. I'm always greatful to have the IVIG and then I do the DEC pulses. The IVIG always helps my body to heal. You may not see it right away, but it does work. My platelets always head down to 3 no matter what the problem is. Then if I'm not too run down, I head back up with treatment. I've never had anything else in my treatment--no hardcore, expensive drugs. Good luck to you.
DeeDee

Ack, another crash when tapering down DrBean. Seems like something needs to change. But what? NAC supplement?

DeeDee, long time no see. Sorry to hear about the relapse AFTER 8 YEARS. I went to the PDSA conference this year. When attendees were asked how to describe ITP the most common response was 'it sucks'.

Hi Hal! I'm glad you were able to go to the conference. It is so informative. I went in 2017 when they had it in Chandler, AZ. My problem is that I'm on Medicare and if I did want to go on NPlate or something similar, it would cost me $12,000 a year! So, It really doesn't do me any good to look into new treatment plans. My doctor told me if I was on Medicaid, the government would pay for my meds. I already pay for a private supplement. So, my theory is to reduce the stress and take care of your body. I do still exercise at least 4 times a week. I've had ITP for 13 years (since 2006). In between having a relapse, I only take 1 medication and that is it. But, when I do relapse, it takes everything out of me (that is the treatment I'm talking about!) And, ITP does SUCK! Another young lady just died from it at the age of 36!
Hope you are doing well Dr. Bean and take care Hal!

DeeDee

The platelet count was 71 on 17 Sep 2019.

The combination of my treatment:
a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Eltrombopag - 25 mg daily
c. Prednisone - 20 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
f. Valaciclovir - 3,000 mg daily

I have shingles on my chest and right-hand arms since last Monday, so that I have to take Valaciclovir.

Shingles, ouch! Double ouch!
Any ideas on what caused the outbreak DrBean? Some physical trauma? Or, just taking Prednisone?
I know this sounds like a weird question, still, did you happen to increase vitamin D intake recently?

Good count drbean. Lot of meds to get that bless your heart!
Sorry about shingles - I've had it twice, it's the pits! Has the Valaciclovir helped? I can't remember which anti-viral I was put on, but it helped some.

Hal not everyone is going to know what triggered shingles - I do know since I had a neighbor from the depths of hell and stress from her was to blame for the 1st time, anxiety over maybe having to take prednisone again at a high dose did the 2nd time. I've recently had 2 friends get shingles and neither can explain why.

My doctor said that maybe the side effect of taking Prednisone, and the shingles caused the platelet crashed to 16 after a week.

The platelet count was 68 on 8 Oct 2019.

The combination of my treatment:
a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Azathioprine - 50 mg
c. Eltrombopag - 25 mg daily
d. Prednisone - 20 mg daily
e. Folic acid - 5 mg daily
f. Famotidine - 20 mg daily
g. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

Any chance the Acyclovir could have been the cause of your platelet drop? How long have you been on the antiviral?
Can't recall which antiviral I was put on - but neither it nor shingles seemed to lower my count.

Not sure what to make of a count crash after Shingles outbreak. Odd. You appear be the first here to report such a thing.
pdsa.org/discussion-group/6-general-itp-discussion/30182-no-way-to-sugar-coat-it-shingles-ack.html#64739

Low dose Azathioprine is an interesting addition DrBean. Maybe it will allow a lower dose of Prednisone. Taper Cyclosporine as before.

Hope the Acyclovir is fully and quickly taking care of Shingles.