Do nothing?

Hi guys. First off I want to say Kittie you have been really helpful to me and I hope to stay updated on whatever you choose. I hope this is not too far off the subject. I just want to check and see if I have a decent grasp on things (I feel like one day I do and the next I don't), because I go to see my hemitologist this week for the second time since I got out of the hospital, and want to make my questions count. When I was diagnosed it was because of the pichea <sp?> and bruising. At that point I quickly dropped from 15k to 1k. I was in the hospital for 6 days where they gave me a 6 pack of platelets, and an IV steriod (can't remember what). I was released at apx 66k, started 50mg of prednisone the next morning, and went to the hemitologist 4 days later and was at 81k. I dropped to 66k the next week then 33k the week after, this last count I was back to 56k. My general dr. has only seen one other case of ITP and said they monitored the woman for about a year and she stays at about 200k.

I am really not liking the effects of the meds. Especially being a teacher and responsible for little ones, it freaks me out when I feel lost and confused. So I guess what I am wondering is if I have the process right.
1. Try steroids and see how high your platelets can get.
2. When they hit a normal (150 - highter) or a leveling point then will try to tapper off.
3. After tappering if your counts level then that is probably your normal? And if below 150 then you are still considered to have ITP?
4. If counts go down then back to treatment?

Sorry if this is crazy confusing, I am confusing myself!

Kittie- Wow 91k! I know you have gone down and are treating since the 91k, but that was a jump! Was it weird to see the numbers so low, then so high, then so low again?

Va:

A person is usually always considered to have ITP once they have had it. It can return at any time, even after a long remission. People treat, get counts up, then wait and monitor. If counts drop to treatment level, they treat again.

When I was diagnosed, I treated with Prednisone when I got to 8k. I went up to the 300's but after a few months, dropped back down and went back on Prednisone. The second time, counts went up and stayed over 200k - I had monthly CBC's for a year and a half, then I quit going. After another year and a half, my GP suggested I have a count done (didn't want to) and the result came back in the 30's. I just monitored for a while and was bouncing between 20's and 30's for months. Then I went to under 10 and had to start treating again.

Kittie,
I'm small framed too. I'm only 5'3" and weigh about 112 lbs. Even when I had Kaiser back in 2006 they still did the 40 mg. I think 40 mg is standard procedure for this treatment (4 days). Dr. Liebman from USC uses this standard. When they did only 20 mg on me, it didn't work. It is hard on you body, but is does work on some ITP patients. Your doctor might need to consult with another Hemo.

I also attended a conference a few years ago in Los Angeles, and they did mention that the 40 mg of Decadron was used. The first hospital I was in back in 2010 (when I showed him my medical records) said he would never use such a high dose (but he wasn't a hemo, either).

I only did 20mg too. I had a great response but it didn't last long. I was told that doing it every month for six months should see the response last longer but I hated it and only did it once. I guess I just had no staying power.

Va:

first off, let me say I'm flattered that anything I have written is of help for you - its always helpful to me to get on here, and I am glad I'm doing the same for you!

As far as "the process", I am going to defer to those on the boards that have been in this boat for a longer time. I'm still only in my first year of this (diagnosed January 2011), and I'm still learning about what "the proccess" is for me!

I can tell you some stuff I've learned:

1. steroids are a way to kinda inhibit your immune system. They work for some, and not for all. The doses make a huge difference, and what the dr considers tolerable and what you consider tolerable may not jive.
2. the chances of you hitting a "normal" again (150k or higher) are not really the goal - the goal is finding a number that you and the Hema can live with. Some people have signs of bleeding at 50k. I can be at 11K and have nothing - no petichae, no purpura, even had a totally normal period. Don't get me wrong - I'm NOT saying 11K is acceptable or safe. But everyone has their own number of safe, and your goal will be to find your own number. I believe that most doctors will begin to taper you off the steroids at a lower number than 150K.
3. yes, the goal is to have your counts level. This, unfortunately, is the hard part for ITP. Many people continually go up and down. So it becomes a balance of drugs and treatment and your life.
4. and yes, if the counts go down, its back to trying something else. Maybe the same if it worked, maybe something different.

I know those are vague answers - likie I said, I want to defer to the expertise on the boards on this one. Those are only my answers - everyone has a different story to tell.

I can tell you some things that have helped me:

1. begin keeping a very detailed journal of what drugs, supplements, and treatments you try, when you try it, what the results were, and how long they lasted. This can give you an idea of where to go next time and when its time to try something new.
2. Ask questions of your Hema, and don't be afraid to suggest things to them. Don't let them scare you when its not neccessary - although this is inevitable in the beginning, because youre still learning how the ITP affects YOU. If 50K causes bleeding, petechae, etc, then 50k is a number you may want to be treated at. If not, then maybe not. In the beginning, its sort of a weird process, because they are all freaking out and that makes us freak out. But as you go on the journey more, you will learn what the numbers mean for you.
3. Sandi has a lot of good advice - one particular thing she stated once is that you cant get too crazy about the numbers, and hallelujah, that's the truth. So no, it was not great going from 13k to 91k, and then to 11k. But its all a learning process, and one of the things thats actually good about going so low is knowing how my own body reacts at levels like that. So I freaked out more at the 13k than at the 11k, because now I know I can do 11k. Not like I'm going to sit around at 11k and not treat, I got my medication that afternoon. But also no need to panic. I went out on a trip with my friends and had a great weekend, and took my medication like a good girl. So far 11k is my lowest. We will see.

Anyway - thats my novice advice at this point. Good luck, keep reading, there are lots of people on here who've been going through it for a long time and have oodles of advice. I'm more in your boat - I'm still learning, but its getting better!

Dee Dee:

Thanks for that - I think my Dr thinks I'm smaller than I am, which I guess is flattering. Also, I tolerate the dex really well, so I'm not opposed to trying a higher doseage.

maybe if this go-round is as short lived as the last, I can talk to him about trying a higher dose, even if not 40 maybe 30. I'm certainly not opposed to trying 40 though.

Side note: I constantly think my Hemo should consult with another hemo as well! I'm in the proccess of finding a new guy or gal, but that can take a while. It is a shame we can't just put our lives on hold to take care of ourselves, which is often what my hematologist thinks I have the ability to do. That's the conversation we have every time he suggests IVIG - since for me the only way to have it covered is to spend the night in the hospital, I'm not so hip to going through that. I'd rather try something a little less time consuming, thank you!

Kittie:

I think you've got things together very well. I really like the advice you have just given--as this is all very true. And, like you mentioned, if you can get by with platelets at 11,000, then try not to "freak" out.

Also, I think I posted this before. When I first got sick for the second time in July 2010, I did have a lot of bruises and petachie. But, then as I changed my diet (just a little--following some of the things on this site) my bruises went away and so did my petachie. At 10,000 I was doing fairly well--but it took 6 weeks to get to that point. The Dr. at USC was amazed at how little bruising and petachie I had. So this is important for me. I have been in remission for 1 1/2 years (last time I had a 4-year remission from the Decadron).

But like Sandy said: Once you have ITP, you always have it. I truly believe this. It just might take a trigger to bring you out of remission--and you always need to be prepared. You need to have a plan set in the back of your mind what you plan to do if it comes back (this is what I try to do).

Dee Dee- very interesting story. Can you tell us what foods you changed in your diet? I avoid omega 3 pills, but want to do an experiment to see if salmon makes me bruise. I don't think it does, not sure. I've been avoiding onions and blueberries but not sure if it helps any. I don't use herbs or herbal tea, esp nothing from the willow/salyx family which is supposed to thin the blood.

Also how much decadron and how many pulses put you into remission? Thats cool that it worked for you.

Posey,
When I was sick in July 2010, my platelets had gone all the way to 1000--and like I said, I did have a lot of bruises and some blood blisters. During this time, I was in the hospital for almost 2 weeks; this is when I decided to work on my diet (I had my laptop with me). These are the foods that I avoided during this time: coke, any type of diet supplements, blueberries (all except strawberry), all teas, coffee, not too much dark chocolate, and tomatoes (and no supplements). I tried to eat really healthy during this time because when your platelets fall, some of your other CBC's will also go down. Now that my platelets are back up, I do eat foods with some tomatoes and drink coffee when we go out. For some reason, this type of diet helped me from bleeding and having petachie (this made me feel a lot better--knowing that I wasn't showing signs of bleeding). I was also careful not to bump myself (knowing I would bruise). I was in a danger zone and was willing to do whatever I could to help myself out.

My first doctor didn't really understand ITP and would give me a dose here and there of Decadron (20 mg) and prednisone; I also had a couple of IVIg drips. My second doctor (who consulted with the doctor from USC) started me on Decadron pulses (40 mg) 4 days of pulses and then 2 weeks off (did this 4 times). He also did the IVIg over 24 hours--which really worked well for me. At around the same time, I stopped taking Sinequan (which is listed as a medicine that can drop your platelets--I had been taking it for 15 years). So, stopping the Sinequan might have also helped me out. I will have to say that my doctor told me that I was a very "difficult" case and he didn't expect my platelets to go back up. He was really surprised when they did and told me to just continue doing whatever you were doing.

Thankfully, I'm in the "do nothing" camp for now - except for 6 month checkups. It really depends on your individual circumstances. For me, I have been testing in the 50K range for the fast few years but believe I've had substantial dips between tests. But even at 6K (my lowest test), I didn't have any outward issues except light bruising.

My current hemo likes the "hands off" approach with my 10 year plus history of not being a bleeder. I know what to watch for and can see my hemo and get prednisone same day if needed. I know the "hands off" approach might be risky, but think it works for me. It wasn't always this way. The first 5+ years was filled with constant CBCs, lots of prednisone, bone marrow test and IVIG. I'm hoping that I can continue my current holding pattern!

I think it's great that you can take this kind of approach. I wouldn't mind if I could do the same. My hemo did said at my last visit that I didn't need to come back for 1 year. I was kind of glad (even though I know I probably have my platelets go up and down--though no signs of bruising). It's nice that your platelets climb back up from 6K; it's those of us who get stuck in the lower numbers that worry more.

Update!!

I went to a new doctor today at Johns Hopkins. My hematologist had suggested him for a third opinion because, quite frankly, my hemo was getting tired of me refusing to get a splenectomy. He suggested the new hemo saying "he's just going to want you to get a splenectomy as well, but if it makes you feel better....."

I love this new guy!

Here's why:

1. He really listened to me. He looked at my records and was a bit worried about my numbers, but he listened to me.
2. He didn't freak out at my low numbers.
3. He really reviewed what we have tried, and how long each treatment worked.
4. When I told him I didn't want a splenectomy and gave my reasons, he said I didn't need one.
5. He said I could always get one later if the need were still there.

And the most important reason I love this guy:

6. He wants me to stop chasing the numbers.

He only wants me to treat if the numbers are lower than 10k, AND if I have bleeding issues. he doesn't want me on a steroid unless my numbers are also partnered w bleeding issues. He believes that, for me, the ITP is less dangerous than the potential side effects, which is wild, because that's what I've been saying all along.

Because of this, he said for now, he wants me to test once a month, we will treat only when necessary, and visit him again in 4 MONTHS!!! He wants me to be aware of any bleeding, and if things change come in. But if not, I won't see him for a while.

This was almost shocking news - I have to admit, after being told "you're gonna die" at my lower numbers and seeing my hemo once a week like clockwork, it's amazing to have a dr with such a different approach. It's like I finally found my doctor soul mate!!!

I feel really weird now - like, a sense of freedom, but apprehension. It's like I got used to the institution of it all, and the patterns.

So finally, the topic has come full-circle: at least for Kittie, I can "do nothing", with close monitoring. I'll still be on here all the time, and I'll still report how it's (the careful observing) going. The PDSA boards have been the ONLY part of ITP that was good, and unlike my last hematologist, I have no intention of leaving those behind!!!

Your new doctor sounds great. I completely understand the institutionalisation thing. I have felt like that when dropping down visits too but the feeling doesn't last long. The way your doctor is treating you is the way I have been treated too. Frustratingly I do bleed under 10 so have needed treatment but it's a good place to start.

Here's hoping for no bleeding symptoms for a very long time.

Kittie,
This new doctor sounds great!! I'm with you--don't treat unless you need to. Just watch yourself for bleeding issues and try not to bump yourself. My doctor let me go for a whole year--and just told me to watch myself. I feel 100% better not having to go for blood tests all the time. And, just remember, we are all here for you.

HAPPY DANCE! HAPPY DANCE! So happy for you! That is such great news. Again wishing the best for you. :lol:

Thanks you guys - each of you have been so helpful on this journey so far. It is really amazing leaving the dr office and not feeling like I'm a sickly, diseased person who needs constant care. I am still in a fog of disbelief!

Of course, my numbers like to go so low that I'm sure this is not how it will stay forever - id imagine I will be tinkering w meds again, someday... But just having a doctor on my side, listening to me, treating me as a whole person rather than numbers on a paper... It's the best.

Now it's time to lose the steroid weight! Ugh........

Great news, Kittie! That sounds a lot like my experience a few years ago. My old hemo was really pushing the pred and splenectomy. I was frazzled with all the testing and "doom and gloom." Now dealing my ITP is muchless stressful and depressing. It will take some time to settle into your new routine, and you'll still need to watch yourself for symptoms.

Good for you Kittie - I relate to your story.
I am now pondering whether to try & 'up' my numbers from low 20's before travelling overseas in July/Aug. Otherwise I just carry on, thankfully without too much drama.
May you have a much more peaceful existence & enjoy life.
mj