Welcome, Guest
Username: Password: Remember me

TOPIC: Questions for Those Experienced with ITP

Questions for Those Experienced with ITP 4 years 1 month ago #47686

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Hello everyone:

So I have a nice, live status update. I'm waiting at the day hospital now to see if my platelets have responded. I've been on 100 mg prednisone since Wednesday. So, this should at least have been enough time to provide some type of response, if any.

I'm hoping the counts got at least to 20,000 or above but coming from 2,000, I don't know what to expect.

I imagine they may infuse me with IVIG, regardless of what my counts are. I'm a terrible IV stick, it's really awful. I'm hoping to avoid but I guess, all things considered, if my platelets have risen and prednisone is working, then IVIG isn't too bad.

There's something interesting that I've been reading.

I have actually taken a lot of the antibiotic Levaquin recently. It seems there could be a connect between this and potentially other antibiotics that may have an impact on your platelets in some form or another.

See this link: www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/hematology-oncology/disorders-platelet-function/Default.htm


Well... I'll know my platelet count in the next hour I'm sure.... definitely anxious. We've all been here at some point before, huh?

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47688

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Okay, they told me (though I haven't seen doctor yet).

I'm at 12,000

So I am 'up' which I am assuming is a good sign that I'm actually responding to the prednisone.

For those of you who are experienced in this.... is this a positive sign on prednisone or are the numbers still a bit low and may necessitate something more than just prednisone and IVIG?

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47690

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
Deln,

When I was in the hospital some years ago, the doctor agreed that when my platelets hit
12,000, they would let me go home. So, as long as they stay at 12 with no symptoms, I think
that is a good start. Try not to worry too much. Sometimes it takes a while for stubborn platelets to go up. I also did the IVIG as a precation--but they did it over a 24-hour period. This is something not all hemo's know about. My doctor was from USC and studied under
Dr. Howard Liebman who is a PDSA advisor.

Good luck on those platelets.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47692

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Thanks guys.

My Dr. is happy with the response, and 12,000 is not bad. (If I'm not really symptomatic).

Re-check on thursday, and we'll be good.

These things give us all so much anxiety.

It's funny that we are a handful of people dealing with these issues in such a large world

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47697

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2328

DelnStyle wrote: It's funny that we are a handful of people dealing with these issues in such a large world


Yes, but each person in this large world probably has a different issue to deal with. :)

I'm glad that things are going well for you. Could be better, I know, but for now, one day at a time.
The following user(s) said Thank You: DelnStyle

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47721

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
So I'm about seven days in. Need to taper soon. I have never felt heartburn before but I am in a lot of pain now.

I don't know what to do or use? I was told heartburn can occur on prednisone. This is pretty awful.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47724

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Yes heartburn happens on prednisone. Ask your doctor for prescription medication to help. I tried over the counter stuff and it was useless. I take 40 mg of pantoprazole daily. You do not want to get a GI bleed! Also stay away from acidic foods and spicy foods while on prednisone.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47810

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Hi everyone,

Can someone answer the following


Does or has prednisone made your heart rate speed up?

Meaning, while I'm just resting or not active, mg heart rate is quite fast.

Is this a common or natural side effect of taking Prednisone?

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47812

  • midwest6708
  • Offline
  • ~ Janet ~ Diagnosed Sept. 08
  • Posts: 311
  • Karma: 2
  • Thank you received: 56
That happened to me. If I stay at 20 mg or below, I'm okay. Thirty mg was a nightmare.
If you have to stay on a high dose, or if it will be a while before you can taper off, ask your MD about prescribing a beta blocker to slow the heart rate.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47817

  • CindyL
  • Offline
  • Posts: 1113
  • Karma: 1
  • Thank you received: 118
Yes, it happened to me. I was so scared I went to a heart doctor! Everything was fine.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47819

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2328
Yes. It made me shake, caused a fast heart rate and high blood pressure.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47821

  • TerriC14
  • Offline
  • Posts: 130
  • Thank you received: 33
My daughter's heart was beating fast even without activity, she was shaky and she would get very flushed.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #47825

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
Yes, it is a very common side affect. It happened to me, too. It would especially hit at night when you try to rest and sleep.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48093

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
So, an update.

I messed up. I misread the directions which said twice a day, so instead of taking 20 mg I should have been taking 40 mg.

Needless to say, I have noticed wet purpura once again, which I take as a poor sign that my platelet count has perhaps dropped below 10,000 again.

So, my question for you all, is what happens next typically with prednisone? Can I just increase my dosage again to say, 40 mg and get my levels up again, and then do a slower taper?

Is it a problem increasing the dosage after messing up the taper?

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48094

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2328
Well, since your counts are probably down and you should have been taking 40 mg's, you could go back up. Prednisone doses can be raised even if the taper has begun.
The following user(s) said Thank You: DelnStyle

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48113

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
So, how does this usually work then when I have to re do the prednisone? For it to work effectively, do I need to begin back at high levels, like 75 or 100 mg again?

If I've responded before will just re upping the dosage usually work?

Also, one last question. Is it better to space the prednisone out into two doses during the day, so that it's a more consistent level throughout a 24 hour period? Meaning, if j was doing 40 mg per day, is if better to do 20 mg in the morning and 20 mg in the evening?

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48114

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2328
No, you don't have to start at very high levels. Some people start at 40 mg's and never go higher. If you have responded to that dose before, chances are that you will again.

Prednisone should be taken all at once in the morning. That is best for the adrenals. However, some people find it hard to dose it all at once because of the side effects.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48117

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1

Sandi wrote: No, you don't have to start at very high levels. Some people start at 40 mg's and never go higher. If you have responded to that dose before, chances are that you will again.

Prednisone should be taken all at once in the morning. That is best for the adrenals. However, some people find it hard to dose it all at once because of the side effects.


Thanks Sandi.

This whole experience (as I'm sure you know) has been frustrating. I'm ticked off that I made a mis-step here, and now this has probably contributed to plummeting my levels again.

I guess I can take solace in the fact that the prednisone was working at a higher dosage level, and thus, I can probably just take a higher dosage again to get things back up.

I know if varies by individual, of course, but how long do these ITP episodes really last? 2 months, 3 months?

My Dr. had stated that these 'episodes' need to work through the system and 'clear out' so to speak. Meaning, the triggering antibodies need to filter out of the system (the antibodies attaching themselves to the platelets).

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48121

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2328
I don't know if I'd consider ITP an episode. It's usually a chronic autoimmune disorder. It can last a few weeks, months, years or a lifetime. Most people obtain remissions that can last months or forever. The key is to find a treatment you can tolerate that keeps counts in a safe range (usually around 30k). It can take some people a year to obtain stable counts with the right treatment. Some get lucky sooner.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48122

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Geez, this is mentally draining.

I don't know if it's the prednisone that's making me 'extra depressed' or if it's just the depressing situation.

I'm really frustrated at this point. I open my mouth and see these blood blisters. Even where I got my blood drawn in my arm today, it looks like a little blood blister.

Even though I haven't gotten my counts back I can already tell they are probably back to 2,000 or less.

This really is upsetting.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48126

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2328
I know it can be frustrating. Prednisone does add to the negative feelings for sure. It's especially hard because you feel like you've lost control of your life. That does get better eventually and you just learn to go with the flow.

I wouldn't worry about the mark on your arm. I've had those even with high counts due to a bad blood draw. It's a small hematoma and that happens sometimes. The blood blisters in your mouth are more concerning. If you do respond to Prednisone well though, it should be temporary.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48131

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
Deln,
This can be depressing for a while. It takes a while to get the right treatment that will work for you. You may need to try the Decadron pulses to see if that might work. The first time I had an ITP episode, my platelets came back right away. Almost five years later, when I had my second episode, it took a while for my platelets to come back up. My doctor always says that stress also plays a part in your treatment not working. Are you extra stressed--like at work? Try to rest when you can as this will help.

Dee Dee

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48156

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Thank you for your replies.

I try to keep things in perspective. I know that there's 'worse' issues out there and there's people in dire situations, and I shouldn't be so 'down' about this ITP issue. Honestly.

It's tough though, because with the Prednisone, I don't know if this is having a 'extra' phscyocological effect. (i.e. making me 'more' moody, or 'more depressed' than I otherwise would be).

I am stressed though and this all causes anxiety. Yesterday night, for instance, I got a slight headache. I had no idea whether this was something to be 'concerned' about because my platelet count was at 4,000. THen you start thinking, should I go to a hospital? What should I do? Am I having a brain bleed?

I have no idea, really, and that's part of the issue that causes stress. I don't know what's going on, how to control it, how to even control my thoughts and emotions anymore.

This whole thing feels like a roller-coaster ride, and it's not fun and I don't know where the finish line is.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48157

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
Deln,
I felt the same way last time my platelets fell. I was in the hospital for two weeks and also had headaches and bruises all over. I had made some of the nurses mad at me because if refused to follow the instructions of the doctor they had assigned to me who had no experience treating ITP. I kept complaining until a week later I was assigned a Hemo with experience. I even had one of the nurses tell me I hope you make it through the night! But, like I mentioned before, I did read a lot about the foods and medicines that lowers your platelets.

Once I started changing my diet (only temporarily) and I stopped one of the meds known to lower platelets (Sinequan), by petachie and bruising started going away (even though my platelets kept staying between 1-4). Then, I wasn't so worried. So, you need to give this Prednisone a try again and like your doctor prescribed. I was always told that you never lower your dosage as fast as you did; it has to be a slow taper. So, you have a good chance of getting back on track.

Now, I will have to mention that I don't do well on the prednisone--just like you are saying. Made me a little crazy. And gave me extreme insomnia. Just give yourself another chance and then you will know for sure if prednisone works for you. If not, you can try something else.

But, for me the change of diet and the two weeks of resting brought down my symptoms and this is important. You can give it a try.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48158

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Speaking of diet, maybe you can assist?

Could you advise what Diet is "good" for ITP? Or, moreso, what foods shouldn't I be eating when my platelets are this low?

I ask, especially because my gums/lips/mouth are so susecptible right now. I mean, I just ate some Jalepeno cheese and crackers and now it looks like I have some small purpura in the mouth again. I just don't know. I'm really confused if what I'm eating and drinking is making this worse.

I would appreciate the diet advice to at least minimize the mouth issues.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48159

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2328
The things that I have read about hemorrhagic strokes is that it will feel like the worst headache of your life. It's been called a 'thunder clap' headache since it can come on suddenly and feel like a lightening bolt. It can occur with vomiting or nausea, loss of feeling in the face, arms or legs, pretty much like everything you've ever heard about ischemic strokes (blood clots). I hope that helps some.

Prednisone can cause depression and exaggerated emotions. Just keep reminding yourself that it's probably the drug making you feel this way. Knowing that helps in the long run. Just keep repeating that and breathe. It will help to calm you down.

I understand the no end in sight thing completely. It's hard when you don't see a light at the end of the tunnel. I have Lupus and there will be no end. I often convince myself that I'd just be happy if things stayed the way they are now, but every time I turn around I have more damage to my body and things keep getting worse. I don't have any words of wisdom except that you have to take one day at a time and try not to think about the future. That is when the fear sets in because of the uncertainty. The good thing here is that the majority of people with ITP do eventually have remissions and you have every reason to hope that will happen to you. I've seen even the most stubborn of cases have a happy ending (or at least a nice manageable break). Aren't you using N-Plate? I forgot and don't have the time to scroll up and re-read it all.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48160

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Sandi,

Thank you for your contribution. Nobody's life is perfect, and everyone has problems it seems. Some problems are just worse than others, so I guess it's all relative. I'm grateful that there's a forum here where people can come together and identify with each other and help each other out. It's also much easier, it seems, to get good and 'quicker' answers from people who have some experience, rather than sit here and wonder 'what the heck is happening/going to happen to me'.

I am not on NPlate or Promacta at this point. The thought with the Dr. has been that since I was responding to the higher doses of Prednisone, then we can stick with that for now.

I am worried though, that I'm not responding quick enough. As I stated above, I've had the wet purpura for about 2 days now. I took 60 mg yesterday and 60 mg today, and I'm still seeing them, so I'm a bit frightened that it's not helping. Perhaps I'm just impatient now, and I need to give the 60 mg until Friday to really have a positive-sustaining effect.

In the meantime though, I'm just nervous that I may have to 'head to the hospital'. I don't think one or two little bruises warrants that, nor a couple of wet purpura (as I've been here before, a month ago). I'm just concerned.

ABOUT FOOD/ DIET?

Sandi - Do you have experience with the wet purpura and diet issues? Do you know what you 'should' and 'should not' be eating and drinking when the platelets are below 10,000?

It seems when I hit the 20,000 mark, the wet purpura ceases and I'm not in as bad shape, but that might take another week.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48161

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
The roller coaster and uncertainty is horrible. I feel your emotions and frustration and fear because I feel the same. We all had fine lives until this horrible ITP happened. Just because someone has a worse condition does not change our situation. Prednisone might help the disease but it makes dealing with the disease much harder. Just know that you are not alone. I am trying really hard to just live each day as it comes.
We just need to hang in there. Also know that you can ask your doctor to start another treatment, like NPlate whenever you want. It is your body and your decision. It is rare for prednisone alone to cause remission.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48166

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Unfortunately it isn't as easy as avoiding things. There isn't any food or drink that you need avoid. If there were we'd all have been given lists by our respective haematologists. Just eat varied and good food. Drink alcohol, if that's your thing, socially and not crazily. That's about it.

I haven't changed my diet and I went from normal counts for the first 50 years of my life to rotten counts for a few years and now, with no change in anything, decent although not quite normal counts.

Please Log in or Create an account to join the conversation.

Questions for Those Experienced with ITP 4 years 1 month ago #48168

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
Deln,

pdsa.org/about-itp/warnings.html

Please read this section on the PDSA website. Like everyone has said, we are all different. For me, I followed the advice on this website (avoided alcohol, too--just until you are better). I didn't eat certain things and I noticed after about a week, all my symptoms started to subside and my doctors were amazed (with platelets between 1-4). Even Dr. Liebman from USC couldn't believe how well I looked for having low platelets. Certain foods/medications lower your platelet count and you will get more "wet" purpura. This is just my suggestion. And, since I was in the same situation you are in, it is all worth a try. For me, it worked until my platelets worked themselves back up. It took almost a month for this to happen, but in the meantime, I didn't have to worry about the symptoms. It is a proven fact that certain foods and medication will thin your blood and give you lower platelets.

My hemo really believes in my theory and he wishes more of his patients were like me. When you are feeling so down and depressed, it is worth a try. You have to be a little patient, but it is worth a try. Like I said, I even stopped one of my medications that is known to lower my platelets--and my platelets stared going up back to normal.

These are just my thoughts. I've had ITP for 9 years and if and when they drop again, I will follow this regime exactly as I get scared just like you.

Best to you,
Dee Dee

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo