Questions for Those Experienced with ITP

I, in my personal opinion, would stay away from all alcohol. I know you all disagree, but for everyone, drinking alcohol is different. I never drink and never will. I also believe that there could be a link with drinking and breast cancer. My husband drinks maybe once a year. He's a firm believer, too. And, if it is thinning your blood, that is not good.

Good morning everyone,

So I actually had a different doctor's appointment today, in which they were going to do a blood draw anyway, so I said to him... Well, if you are sticking me once, you might as well order a CBC so I can see my platelets.

So... let's play 'guess the platelet game'.

My guess is that it comes back around 12,000

Wow... they are at 2

Okay, so now for those expierenced. I was told I have 3 options.

1. Prednisone (50 mg, then taper)

2. IVIG

3. WinRo?

Can someone who has dealt with all these options weigh in on what the benefits vs. Side effects are? I guess, which option causes the least amount of damage, but gets the job done?

They all have pitfalls.

IVIG - will probably raise counts fast but it doesn't last long, sometimes a week or two. It can take about 6 to 8 hours to infuse. Side effects are not bad unless you end up with aseptic meningitis (which occurs occasionally), but it goes away after a day or two.

Win-Rho - takes about an hour to infuse but the patient should be monitored for a few hours afterwards. Does not work for everyone. I'm guessing 50% response rate.

Prednisone - nasty side effects, works most of the time. Sometimes counts fall during a taper, sometimes they don't.

Good luck with your decision. I'm g;ad you finally decided to do something.

My doctor usually starts with the IVIG to see if he can get my platelets back up (sometimes I've had it 4-5 times). Then, we start to think about a treatment option. I went for the Decadron pulses. Did you ask him about that option? It does work for a lot of people. I've had from the IVIG and Decadron pulses almost a 5-year remission.

Good luck on your decisions. I am glad that you don't have a lot of symptoms. That is good.

Dee Dee

Thank you for your replies.

I am starting on 100 mg Prednisone for 7 days. After my first 50 mg I already just feel like, more irritable or something. Also, like I can't concentrate long on things too.

I get drawn on Thursday, to see if I've responded. Then, I meet with Doctor on Monday morning.

I have a trip to Mexico in 2 weeks. I really need to be better by then. How safe is it to travel with these low platelets and with taking Prednisone?

If your counts are up, which they could very well be, you should be fine to travel. I'd go from 3k to to 350k in five days on 60 mg's.

Prednisone is tough.

I still prefer the Decadron pulses. Did you ask your doctor about them? They are in this month's PDSA newsletter (just received yesterday). If you do decide to go to Mexico, please research your options just in case you need to see a doctor while there.

I agree with Sandy; prednisone is really tough!

Dee Dee & Sandi,

Thanks for your responses.

Decadron - I recall using this once 5 years ago, but I still was administered Prednisone.

Why do you guys say Prednisone is tough? I'm just curious? It seems like it's the least intrusive, by just staying at home, popping some pills.

It does make me feel anxious/ agitated easier... and I do feel more hungry.

I guess it's a small price to pay to get the counts up to a safer level.

Deln,

In high doses, prednisone makes me really anxious and give me severe insomnia. After days of
not sleeping, I start to feel really paranoid. I just don't think I'm a good candidate for
high does of prednisone. I could be allergic to it.

Maybe you will be fine on it--especially if it's short term.

DeeDee:

What is considered "Short Term" and "Long-Term" when it comes to Prednisone treatment?

For instance, I'm doing to be on the following schedule (assuming the numbers show I've responded).

1. 100 mg per day, for 7 days.
2. 70 mg per day, for 7 days
3. 40 mg per day for 7 days.
4. 20 mg per day for 7 days
5. 10 mg per day for 7 days.

Is this considered "Short-Term" or "Long-Term"

Deln,

When I was on Prednisone, it was for a period of about 3 months. I considered that to be
long term. I tapered down through the weeks. Permanently on Prednisone for certain
conditions is also long term. Some people just go on it for a week or two--this I would
consider short term.

It's not always the best idea to prescribe Prednisone with a tapering schedule. The dosages should be adjusted by the response of the patient's counts. In fact, I've rarely ever seen a patient get a scheduled taper at the start. Most doctors play it by ear.

AT any rate, this is about a six week round, which can be a long time when you're going through it. Most are on it for a minimum of 3 months, sometimes much longer. You might find that the side effects get worse every day. That is the experience of most people. It seems to accumulate. I would feel more irritable every day, have worse mood swings, sleep less. feel more hungry, etc....Then each time you taper, you can also get withdrawal symptoms which can include extreme fatigue, muscle weakness and pain, joint pain, depression, etc...

You might not have any of that, some people don't and all it is to them is, as you said, "popping a pill". But I can tell you for sure that most people hate Prednisone. Hate it. SO much so that they'd rather go for the more invasive and expensive treatments.

DeeDee - your experience was normal. It's not an allergic reaction.

My Prednisone experience thankfully did not result in many of the side effects that are mentioned by others as all I experienced was the 'brain fog' and difficulty in remembering things, some minor sleeplessness and my hands trembled - I guess I was lucky.
My specialist had me on a long taper over 22 weeks while I was using all the other treatments which unfortunately also did not have any effect. When I was diagnosed at a count of 9 I was started on 100mg for a week which took me to a count of 60. I then reduced down to 75mg for the next week, count was 160, tapered to 50mg the next week and crashed back to 13.
Weeks 4-7 were back to 100mg and then my taper over the next 15 weeks went 75mg, 60mg, 50mg, 37.5mg, 25mg, 20mg, 15mg, 10mg, 5mg and finally 2.5mg.
I had a break at week 9 for a 4 day dexamethasone treatment but apart from the initial 3 weeks, Prednisone (and the other treatments) seemed to do nothing for me as I just stayed between 0 and 5. I started on NPlate in week 11 which took until week 16 to take effect when my count went to 33 and then I went into spontaneous remission with a normal count a further 22 weeks after that. At the time my specialist did forewarn me of the side effects of Prednisone and Dexamethasone but I found some of the other treatments more concerning especially Cyclosporine and Dapsone. The other treatments I received being IVIG, Rituximab and Tranexamic Acid did not cause me any of the issues others mention so I guess that it can sometimes be an individual thing.

Hello Everyone:

So, my levels have not responded to the Prednisone (so far). I've only been using it for a little under 48 hours. Perhaps they will have responded when I see the doctor on Monday.

I am really looking for some guidance now so I can be prepared when I speak with the Dr. In person.

Here's where I stand.

- Monday, I will be assessed for platelet count to see if Prednisone has assisted.

- If it hasn't helped, I will definitely be getting IVIG. (I've had this before, so I know what to expect).

- The question now, is what other options are out there. He made a statement to me, saying that "If I haven't responded to Prednisone, then Decadron likely won't respond either". Is this a true statement? Obviously, they are both steriods, which I understand.... but is that true?

Second, and perhaps more importantly is what to do if both prednisone and IVIG don't assist.

There were two options he threw out:

RITUXIN

WINRHO

From preliminary research, I would prefer NOT to be given a chemotherapy drug. I assume that "WINRHO"
might be the 'lesser' of the two evils so to speak? Potentially doesn't have as harmful effects on the body?

Your responses and insight for Monday's upcoming meeting are greatly appreciated... now, I am actually worried.

It is a little early to be worried about your levels not responding to prednisone. Chances are they will respond, and the question then becomes whether you can taper off medication without your counts dropping again.

That said, high-dose dexamethasone can work where prednisone fails, according to this study:

Neth J Med. 1991 Aug;39(1-2):6-10.
Effect of high-dose dexamethasone in prednisone-resistant autoimmune thrombocytopenic purpura (ITP).
Dubbeld P1, van der Heul C, Hillen HF.

Abstract
This study investigated whether high-dose dexamethasone pulse therapy could bring about a remission in adult chronic idiopathic thrombocytopenic purpura (ITP) patients who had not achieved a remission on the usual prednisone therapy. Newly diagnosed patients with ITP received the usual prednisone therapy, 1 mg/kg/day, for 3 weeks, after which period the dosage was tapered off. If after 6 weeks of treatment the platelets were less than 50 x 10(9)/l the prednisone therapy was considered a failure and 200 mg dexamethasone i.v. was given on 3 consecutive days. Six of the twenty-five patients with newly diagnosed ITP treated according to this protocol achieved a sufficient response with prednisone therapy. Nineteen patients were resistant to or relapsed during prednisone therapy and were treated with high-dose dexamethasone. Four of these nineteen patients showed a sufficient response. Three are still in remission. As no serious adverse effects were observed, high-dose dexamethasone therapy can be considered before splenectomy in prednisone- resistant ITP patients.
PMID: 1961352 www.ncbi.nlm.nih.gov/pubmed/1961352

Some people have a very difficult time with dexamethasone (decadron) while others tolerate it well.

Protocol says to try pred for at least 4 weeks and maybe 6 weeks before saying it hasn't worked. Patience is always needed with ITP.

Prednisone didn't work for me the second time I relapsed, so I did the Decadron pulses. Those worked for me, but it did take some patience. Some times it takes a little while for the treatment to kick in. Also, when my doctor did the IVIG, it didn't work at first (4 trys). Finally, he said this will be the last time we do the IVIG and my doctor did it over a 24-hour period. My platelets started going up a few days later (slowly) then they stayed up for almost 5 years. He had told me that I was refractory (nothing will probably help); so, you don't give up--just keep giving it your best.

Dee Dee

Deln there are chemo drugs but Rituxan isn't a chemo drug. Have you read about each one in the treatment section?
WinRho
pdsa.org/treatments/conventional/anti-d.html
Rituxan
pdsa.org/treatments/conventional/b-cell-depletion.html
Chemo
pdsa.org/treatments/conventional/chemotherapy.html

IVIg is only temporary is what I was told - my hematologist told me she never had anyone go into remission using it.

Thank you all, so much information to get my head around.

Regarding prednisone, I had respond ed well when I took it before and counts showed immediate improvement. So that's why I'm slightly concerned. I will give it to Monday and hope for improvement.

I do have a serious question. Does flying on an airplane increase risk of spontaneously bleeding? Like, does the air pressure have an effect on the veins or something that could cause the dangerous internal bleeding if my count are now under 10,000?

That question comes up a lot here.
If you follow this search on "airplanes", you will find lots of relevant comments:
pdsa.org/forum-sp-534/search.html?query=airplanes&childforums=1

One of the top Hematologists has stated that a person can fly at any count. Many people choose not to fly with counts under 10 though because they are not comfortable with low counts in an unfamiliar area. You should discuss this with your doctor to determine what is best for you.

Of the drugs you mentioned, Rituxan is the one that gives the best shot at remission. As Melinda said, it is not chemotherapy. It is a monoclonal antibody, or biologic, like Enbrel and Humira. You've probably seen those commercials. It is not a drug that I would take lightly, but many people have used it successfully for ITP.

Win-Rho can be easier because there is only one infusion, but it's not used often these days due to a black box warning and the fact that it usually only lasts a few weeks. Some people have had a few months of decent counts from Win-Rho. It doesn't always work, but that can be said about any of the treatments.

Rituxan also has a black box warning, but so does IVIG. Treatment decisions are always hard. What is even harder is that many people go down the treatment line and try quite a few before finding one that works and has the least side effects for them.

If I were newly diagnosed in 2015, knowing what I know now, I would consider N-Plate or Promacta and skip the rest. Those were not available when I was struggling with ITP years ago. They have a great success rate and few side effects.

Sandi,

You seem quite knowledgeable. What has your own personal story been like with itp, if you don't mind to maybe point me to a posting you made about yourself?

Rituxin, what I briefly read was this was used with chemotherapy ( so it's not chemotherapy in itself but something used with it, I didn't know that, so maybe it's not that bad. )

Promacta - this seems interesting. Do patients achieve better remission status on this drug compared to other methods?

Rituxan is used with chemotherapy for certain cancers. It is used on its own for ITP.

Promacta and Nplate are the two newest drugs for ITP and anecdotal evidence shows remission in some. Even if no remission comes along, the treatment is easy and successful for most. I used Nplate for 3 years when a sort of remission came about and I no longer treat but if I needed to again I'd got back to Nplate in a heartbeat.

Deln:

I was diagnosed in 1998 with counts of 50k. I was monitored by a Hemo and in a few weeks, counts fell to 8k. I was treated with 5 weekly Win-Rho treatments that didn't bring counts up at all, so we then tried Danazol. It's a sort of off-label drug that is rarely ever used and is not often successful. I don't know why he went that route and I didn't know any better. I came to this site around that time and started to read and research. I never stopped.

I broke out in hives from Danazol and counts were 3k, so I started Prednisone and had an immediate response. I did about a 3 month taper and counts held, but a few months later they dropped again. I went back on Prednisone. After that taper, counts held for a year and a half and I stopped going for counts. A year and a half after that, my GP suggested I get a CBC and counts were 30k. I monitored and eventually counts dropped and I was back on Prednisone. I was taking a low dose and kept going on and off of it until I'd had enough of that drug. I then tried Rituxan.

Counts were 3k the week of the third infusion, and were 150k the week of the last infusion. In between there, I developed serum sickness though but was misdiagnosed. Counts lasted a year and when they dropped, I had one infusion of Rituxan and got serum sickness again. Counts went up and I haven't had to treat since (2004). ITP has been in remission, but right after the second serum sickness reaction, I developed Lupus so I have been dealing with that. I've been on Prednisone since then and take other meds for Lupus so it's possible that those treatments are keeping ITP in remission..

That's the story. Nothing exciting.

2 thoughts:

1. tapering while traveling is risky, especially the large drops you mention above.
2. 100 mg/day is a lot of pred for an average size person. It is prescribed by weight (of patient).

Deln,

I attended the last PDSA conference and I just wanted to mention that there are quite a few people that do not have a remission right away. They try a few of these drugs and nothing happens. Then, all at once, they start to go into a remission. And, some of these people that I met are the ones that have a long remission (from 2 to 5 years). Some of us are just that way. I would say I was in that category as my platelets didn't want to "budge". The one man I meant had a treatment of Rituxan and he was in a 5-year remission. Now, this isn't the case for every one. There are those who just have low platelets (around 30,000) and they stay that way. I, personally, think that you could end up with a worst problem if you just jump from one medication to another. This is my personal opinion and observation.

Good luck with your treatment.
Dee Dee

Deln,

I also again wanted to say that if you do plan on flying and taking your vacation, please have a backup plan in place at your vacation site. There is nothing worse to take a vacation and end up sick and not know what to do or where to go. Also check into your insurance while on travel. Just a few of my thoughts.

Dee Dee