TOPIC:

MelA wrote:

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.

I have taken Acyclovir for a week, it seems not the casue of my platelet drop.

Hal9000 wrote:

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.

My doctor try to attribute infection or virus which was casued my platelet crashed. The point is my platelet crashed again, it dropped to 17 on 15 October 2019.

The combination of my treatment:
a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Azathioprine - 75 mg (increased 25 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)

My doctors strongly recommend me to perform a splenectomy, but the chance is 50/50 and the long-term effects remain
poorly understood.

Dr. Bean, the shingles alone implies that your body is stressed (IMO). Each of us are so different. The last time I crashed, I was taking Sinequan just a couple times a week (doctor told me not to take it). I took it for years and did so well one it until I crashed in 2010--then I went off of it for a few weeks to have allergy testing. My platelets were at about 3 for two months--until I stopped the Sinequan--then they went up. It completely relaxes me (it's in the Benadryl family. So I'm definitely afraid to take it again. Also, after taking steriods for while, I get all kinds of weird things like thrush, round-raised circles on my body off and on. Fungus, etc. My body doesn't recover for years--but my platelets are staying up for now!
Good luck to you; you probably need to analyze your body a little too.

Dee Dee

Dr. Bean,
Please really think hard about the splenectomy. If you are near 60, the chances of it helping you really go down. I will never have one no matter what. I get too many illnesses and need my spleen to help might them.

Good luck (p.s. doctor's always recommend it when they cannot figure out what to do).

Dee Dee

drbean - I may have asked you this before but I'm too lazy to try to find if I did - are you in Hong Kong?

My count drops if I have a virus.
Dr Bean why are you still only on 25mg of Eltrombopag.? It could be increased to 50mg.
I have never and will never entertain the idea of parting with my spleen.

DeeDee wrote:

Dr. Bean, the shingles alone implies that your body is stressed (IMO). Each of us are so different. The last time I crashed, I was taking Sinequan just a couple times a week (doctor told me not to take it). I took it for years and did so well one it until I crashed in 2010--then I went off of it for a few weeks to have allergy testing. My platelets were at about 3 for two months--until I stopped the Sinequan--then they went up. It completely relaxes me (it's in the Benadryl family. So I'm definitely afraid to take it again. Also, after taking steriods for while, I get all kinds of weird things like thrush, round-raised circles on my body off and on. Fungus, etc. My body doesn't recover for years--but my platelets are staying up for now!
Good luck to you; you probably need to analyze your body a little too.

Dee Dee

You may be right. I've been hospitalized three times in a month before the shingles appeared.

I can't take a good rest in the hospital, but my doctors attributed the shingles as the side effect of taking prednisone.

MelA wrote:

drbean - I may have asked you this before but I'm too lazy to try to find if I did - are you in Hong Kong?

You are correct. I am in Hong Kong.

mrsb04 wrote:

My count drops if I have a virus.
Dr Bean why are you still only on 25mg of Eltrombopag.? It could be increased to 50mg.
I have never and will never entertain the idea of parting with my spleen.

Eltrombopag is increased from 25 mg to 50 mg and effective from today.

Before that, I have a consideration about the price of Eltrombopag, since it is a self-finance medicine in Hong Kong and costly HK$7,100 for 25 mg per month. For now on, I have to pay HK$14,000 for 50 mg per month.

My doctor also said that 25 mg of Eltromboag wasn't enough when my weight increased from 8x kg to 97kg.

DeeDee wrote:

Dr. Bean,
Please really think hard about the splenectomy. If you are near 60, the chances of it helping you really go down. I will never have one no matter what. I get too many illnesses and need my spleen to help might them.

Good luck (p.s. doctor's always recommend it when they cannot figure out what to do).

Dee Dee

After I received CT scan report yesterday, I decided these follow up actions;

1. Increased Eltrombopag from 25mg to 50mg per day
2. Reduce my weight
3. Seek advices from Chinese medicine doctors

Dr. Bean,
I agree with you about the costs. Same thing for me here in the U.S. They develop all these new treatments, but they are so
expensive! I agree on the plan to reduce your weight. I try very hard to keep my weight down. And, believe me, it is a struggle!
After taking all these steriods through the years (I've had ITP for 13 1/2 years), I cannot eat too much without putting on weight. I would also try to add some exercise into your plan of action too. I exercise and also do some yoga. Good luck to you! It sounds like you are on the right path!
Dee Dee

Novartis has a patient assistance program and if you qualify will send you Promacta at no cost. Have you looked into that?

b2h wrote:

Novartis has a patient assistance program and if you qualify will send you Promacta at no cost. Have you looked into that?

Any details? Can I apply it even I live in Hong Kong?

I would think that since you are able to access the medication there should be something, but unfortunately I don't know. Perhaps look here: www.novartis.com/our-company/global-product-portfolio?sort_bef_combine=title+ASC&sort_bef_combine=title+ASC&combine=promacta
I didn't see Hong Kong in the drop down list, but I would contact them.

Dr. Bean,
I would look into it--but I wouldn't count on Norvartis unless we qualify for low income. When I was sick in 2018, my doctor "begged" me to take
Promacta and even gave me a two-week supply (which wouldn't help unless I decided to start paying for it). Norvartis is not noted for always being overly
generous. I did a photo shoot for them for a commercial in 2017 for ITP stories. They worked me so hard that I was sick for a week. They wouldn't even give me a "break" during the four hours. When I saw the video, I looked "deathly" sick and asked them to pull it. There were also some other personal things they did to me that I don't want to mention here. You can see the videos when you go to their ITP site--but mine isn't there.
Dee Dee

Are there any grants in Hong Kong? Non-profits that help people pay for medications? In the US there are some.

Platelet increased to 167 after day 4 of injecting ivig.

Dr. Bean,
That's good to hear! IVIG helps me most of the time; it's actually my main treatment along with the pulses. It helps
to heal your body. Good rest and healthy food would help too.

The platelet count from 16 Oct to 2 Nov 2019 are as follows;

16 Oct 2019 17
20 Oct 2019 168 (after injection of 4th round ivig)
26 Oct 2019 294
2 Nov 2019 100

The combination of my treatment:
a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Azathioprine - 75 mg (increased 25 mg)
c. Eltrombopag - 50 mg daily (increased 25 mg since 25 Oct 2019)
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)

Also, I have tried traditional Chinese medicine and acupuncture, hopefully, it will be another way to exit.

Fyi, key points of my ct scan report are as follows;
1. The spleen is mildly enlarged
2. There are small reactive nodes at both sides of the neck
3. No mediastinal or axillary lymphadenopathy is seen
4. There is a RML granuloma.

drbean7218 wrote:

...
Also, I have tried traditional Chinese medicine and acupuncture, hopefully, it will be another way to exit.

It was briefly mentioned in the PDSA conference this summer that no Chinese medicine has been found to effectively treat ITP.

Hopefully things will get better once Shingles goes away - Acyclovir is no longer needed. I do wonder though if Cyclosporine is blocking that recovery.

Wonder what they based that on - the brief mention that no Chinese medicine was found to effectively treat ITP.
drbean I'd be interested to know if you find that acupuncture helps you. I use acupuncture for neuropathy and it does help it,
I had asked my acupuncturist about it for ITP but she said since I've had ITP for a long time it probably wouldn't.

MelA wrote:

Wonder what they based that on - the brief mention that no Chinese medicine was found to effectively treat ITP.
drbean I'd be interested to know if you find that acupuncture helps you. I use acupuncture for neuropathy and it does help it,
I had asked my acupuncturist about it for ITP but she said since I've had ITP for a long time it probably wouldn't.

It may be work, since our doctor objective is using Chinese medicine and acupuncture to balance my immune system, but it takes time.

Good luck drbean [did I tell you we lived in Hong Kong some years back]
Yes it does take time to work if it is going to work - too many people try acupuncture and quit after a session or 2 because they didn't feel relief. With my neuropathy it took weeks to get a little bit of improvement.

Dr. Bean,
I"m glad to hear that your platelets are staying up. The IVIG most likely has helped you. TNow, my doctor and I were told by Dr. Howard Liebman years
ago when I had a very bad crash of my ITP that by doing an IVIG "slow drip" was a lot better than doing very fast. At that time they had to do an IVIG over 24 hours. Now I think it was just 12 hours--but never 4 hours. I do think once you can get off of some of the medicine you are on that your body will feel much better. This is just my opinion. I'm not on any medicine currently (except to sleep at night). But this doesn't mean I'm doing better than you. I just read about a young man (him and his mother both had ITP). His mother had three crashes during her lifetime--he had six crashes in his lifetime and died during the last one. When I crash, I need to go all the way to the very single numbers before I get better. We are all different. This is what I have observed over the 13 years during my journey. Just hoping that you feel better read soon.

The platelet count from 7 Nov 2019 to 4 Jan 2020 are as follows;

7 Nov 2019 57
11 Nov 2019 60
18 Nov 2019 110
2 Dec 2019 63 (may be caused by flu and gastroenteritis)
9 Dec 2019 163
23 Dec 2019 170
4 Jan 2020 185

I have performed a lab test on finding antibodies in my blood in early Nov 2019. They found Anti lb/IX in my blood.

I was shocked that why my doctors didn't told me that in last 7 years, until I sought second opinions again from other doctors.

The combination of my treatment:
a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 50 mg daily
d. Prednisone - 15 mg daily (reduced 5 mg, starting from 23 Dec 2019)
e. Folic acid - 5 mg daily
f. Famotidine - 20 mg daily
g. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

Dr. Bean,
This is impressive!! Your counts are finally coming around and in the normal range! So you did seek a second opinion?? I'm sure glad
things have changed for the better. Could you explain what the Anti lb/IX in your blood is? Is it showing you have infection in your blood that
needs to be resolved?? Really curious to know. Thanks and so happy you are doing better.
DeeDee

You are still taking Acyclovir?

Are you doing acupuncture?

The anti IbIX are antibodies against the platelets. They aren't routinely tested for.

DrBean, glad you were able to increase that Eltrombopag dose from 25 mg to 50 mg!
Really made a big difference. It was just what was needed.