"How low can I go?!"

"We are never ever ever getting back together!"

May 1st was my final day of anti-coagulant shots. I have vowed to live a healthier lifestyle so I never have to go through the agony of a pulmonary embolism ever again! Anti-coagulant shots are a terrible, evil thing to have to do to yourself for extended periods of time and I have a new found respect for diabetics.

The joy of no longer having to be on anti-coagulant shots means I am allowed to have a platelet count less than 50k and I quickly jumped at the opportunity to go as low as I could go.

We went for one full dose of IVIg which boosted my count to 197k (the highest it has been since, gosh... November)and have been slowly watching the decline ever since.
197 to 133 (in 7 days). 133 to 77 (10 days). 77 to 60 (4 days).

The problem I'm having is that my hema is insistent that we intervene with IVIg near 30k. I tried to negotiate my way down to 15 and she wasn't really into that idea. I guess I'm not in the mindset that I was in when I was first diagnosed. As long as I feel healthy with few symptoms, I'm not really seeing what the big problem is with a lower count.

Personally, I want to see if my count will stable out at some point. I don't even really CARE what the number is, as long as it is stable. My doctor thinks that is bizarre and dangerous. As she put it, "I'm not sure how fast your platelets will continue to fall at 20. I don't want you to end up where we started; in the hospital with a count of 1k."

But... how will we know if we never test the theory?!

I have gotten to the point where I can no longer stand 6, 7, 8 hour IVIg infusions. She claims we can try a half dose but that's still 4, 5, 6 hours of being in the hospital. Quite frankly, I'm bloody sick of heading to the hospital a gazillion times a month (my heme, her clinic and the infusion center are all in the hospital. So to see or go to any of them, I've gotta trudge myself into that building of NO FUN).

Why IVIg all the time? Prednisone didn't work. Rituxan didn't work. WinRho resulted in a fun hemalytic event that I never wish to go through again and the splenectomy didn't work. I'm too much of a baby to try the newer treatments.

So, my fellow ITPers with less aggressive doctors, how did you and your doctor come to the conclusion that you'd just let your platelets be? Because I'm jealous and I must learn from your magical ways!

I have no idea if you can just reset the doctor. Mine kind of started out that way. When I was first diagnosed and at 8k, I was begging them to do something. They just kept saying, "you're okay" and told me to just go about life but be careful. Okay. He was using Win-Rho but it wasn't doing a thing.

I think some people here and their doctors just got to a point of accepting lower counts because they couldn't get them over 10k. What do you do then? Stay in the hospital forever? Others just don't go in for counts until they suspect they are really low.

The question is - how quickly can you get them up once they are down?

Have you thought about CellCept or Imuran? I wouldn't use the TPO's either with your history of PE.

Kay L,

I'm in the same boat. I am over going to the hospital multiple times a week and def over the IVGs! I know that my platelet count has crashed the past few days and not looking forward to negotiating my way out of IVIGs tomorrow. My regular hematologist would treat below 30 before and now he's ok with above single digits.

I think your theory does sound reasonable. At one point I was at 18, he freaked out wanted to give me IVIGs said i would be in single digits but I did not go.( was in a very depressed state that time and ended up seeing a specialist) The next week I was at 19 and the following week was 22. Hey I've been at 4 before, but that doesn't necessarily mean that if I'm at 18 I will drop to 2 within 2 days. Also, the last time I had IVIGs I did not respond.

I don't think there is any rhyme or reason for the drops. I think I will just agree to IVIGs if the symptoms get really bad....which they are now( tired, achy and petichae everywhere).....however don't really want to sit at treatment center for 8 hours with no response so who knows how this will proceed!

Call me irresponsible, stubborn or whatever, but it's my call. Apart from fatigue I am coping with counts in the mid 20's, no treatment, at my request. The very thought of regular trips to the city over 2 hours away for regular specialist appointments or hospital treatment makes me even more determined. (Especially after having already spent several days in hosp. receiving IVIG.)
I appreciate there are situations where treatment is warranted, but for now I just want to maintain a safe count (whatever that is!), a balanced lifestyle & a contented heart.
mj

Nobody has ever called me a shrinking violet so I know that once I put my foot down, it will be down so hard that nobody will be able to peel it off the ground.

I just have this feeling, deep down, that my platelet count will stabilize in the teens and I can live with that. It's just convincing my doctor that I'm okay with that.

Sometimes I don't know who is more worried with all of this; her or me.
I know I frustrate the crap out of her. I'm her first ITP patient that she hasn't been able to put into remission and I'm only 1 of 2 in the whole practice that hasn't responded to the normal first and second lines of treatment (well, other than the IVIg but that's just not a long term option).

Sandi, we haven't discussed CellCept or Imuran (I haven't even heard of the latter) and I'm deathly afraid of the TPOs. I'll bring those up when I go in next. Luckily, the IVIg does a nice job at rebounding my counts but it only lasts for about a week and then we begin the slow descent to 0.

Since you've had a PE, I don't think I'd go with the TPO's either. If you do ever decide that you would like to work on getting counts up, CellCept or Imuran would be an option to discuss with your doctor. They are both immunosuppressants and do not have steroid side effects, but they do carry risks.

Ms. Kay!

I have been missing you! Sorry about your "journey", but there will be better days ahead! I had pretty much the same results with IVIG and Prednisone that you had. IVIG worked great for a bit. I went up to 530k then it started down. IT did last for about 2 months. The prednisone only succeeded in putting 51# on me, but I have been working on that. I have 20 of it off. I think Sandi gave you some great advice. Talk with your docs, but always remember that ultimately you are in control.

I wanted to tell you that the smile in your picture is great! Keep it up!

Jeffrey

You're too sweet, Jeff! I just took up pilates to start working off the prednisone weight.

I can't believe how much weight I gained! I use to look like my profile picture... not so much anymore.

Kay,

I went from 180 to 231 on prednisone! I have worked 20 of it off now. I wish to return to my "AARP Eye Candy" status! :laugh: I would eat a meal and 45 minutes after the meal I was looking for another meal, not a snack, a meal!

Good for you on the pilates! My theory is to keep the entire body fit to battle what it has to battle. I am certain you look great! Just smile!

Jeffrey

Hey Kay!

Nice to meet you and sorry to hear what you've been through.

It sounds like your hema is a bit overzealous with all those IVIGs - I would also be tempted to see how your platelet count goes without it, it may well be good enough for now and let you enjoy your life a bit without constant infusions.

My hema could not be more reasonable and relaxed in a healthy kind of way. My platelets are always around 18-30k but he said he wouldn't treat it unless they are consistenly below 20 considering my life style and no serious bleeding issues apart from the usual pechiache, brusing etc that I got used to. He explained that in the majority of cases the real serious risk of bleeding is with counts below 5 so he doesn't see why he would treat me at this stage considering I've been doing ok. It may happen they the counts will drop at some point but we will deal with it then.


Yesterday he was joking he would give me a written direction to avoid any house work after I told him about the bad pechiache I got on my knees from cleaning the floors. A healthy dose of humor and a bit of perspective is something I really appreciate about him.

On a different note, there was a medical student during my appointment yesterday and i could answer most of the questions the hema was asking that the student couldnt! all thanks to pdsa

Good luck with your hema management and keep us posted! Take care of yourself.

Ania

Hello Kay!

Nothing ever really worked for me either. I am not treating at all anymore, and I just have to really pay attention to symptoms. I know my "normal" is between 10-30k, sometimes lower, not usually higher. If it gets close to 10k, I usually begin having symptoms. But honestly, even at 7k I've never looked like some of the pictures I've seen on the Internet. If I looked like that I'd be scared as well.

For me, the symptoms are very subtle petechia on my chest (and not even noticeable to other people), fatigue, and bruising, but once again. Nothing crazy bad. I had to switch hematologists a few times to find one that was willing to let me use my "wait and see" method. My original hematologist hated my attitude - he loved talking about "brain bleeds" and the like. His "line in the sand" was also 30k, and I couldn't get hm to budge on that. My current guy is great - I can contact him through email if if feel bad, I go to Quest diagnostics and get my numbers, and if they are something that I feel needs treating, he emails me a script. no panic, all very casual.

I was diagnosed two years ago, and in the beginning I had 4 rounds of IViG in one year. Each time the success from it was shorter and shorter, and also the "bump" was lower. So I decided that I'd rather save my IViG's for a time I really needed them.

I do, however, wear a med alert bracelet now. I thought if I was going to be this stubborn, I should at least wear the bracelet. Mine is from med-Id.com, and it's really not ugly at all. In fact, I get compliments about it all the time!

So, of you're gonna do the "wait and see" game, at least keep checking your numbers, and have a plan if the drop goes lower than you are comfortable with.

Ps: you may not want to hold out for the hopes of a "stable number". Unfortunately, bouncing around is one of the halmarks of ITP.

Hi Kittie,
I relate to all you said, including wearing a medic alert bracelet.
What does your hematologist usually prescribe if necessary?
mj

Hey Kay,

Nice to hear see you again online. I get your frustration. As you know I took the Homeopathic route and have had no change. My platelets are still 3 or 4,000. I tried Promacta for a month and it didn't impact anything. Not sure what to do next. What I hate most are the sores I get in my mouth. Still working on getting a support group together in Minnesota.

Patti

Hey everybody!

I meant to reply sooner but two things happened since then;
1.) I got a part-time job and
2.) I caught my first cold since being diagnosed. That was pretty much the worst cold I have ever endured. I had been warned plenty of times that a cold would totally wipe me out and I didn't listen. Three days into my job (after being sequestered in my apartment since December) I catch the sniffles which snowballed into an avalanche of illness. Yuck.

Also, I wasn't prepared for how much working + semi-low platelet count would effect me. Standing for hours on end probably isn't the best idea, but I had little choice in the matter. Especially since I got my bill for my first hospital visit and first few rounds of IVIg in December. I owe my hospital $61,000 (and THAT, ladies and gentlemen, is why I've always been an ally of health care reform).

My platelet count has been kind of steadily rising. Three weeks ago it was 60. A week later 68 and last week it was 75. Of course, that last reading was before I caught the COLD FROM HADES so I have no idea what it is now. I don't go back to check for another week.

Still symptom free... other than some random bruising and HORRID fatigue.

Throughout my perusing of the internet I came across this posting on reddit: www.reddit.com/r/IAmA/comments/1g1g02/iama_24f_currently_in_the_hospital_for_a_possible/

Thought some of you might find it interesting!

Speaking of horrible fatigue, did I mention I have horrible fatigue and how in the heck do we survive with horrible fatigue like this AND I NEED ALL OF THE SLEEP!!!!
Wait... I digress...
Speaking of horrible fatigue, I'm amazed that I'm awake past midnight. But, alas, I'm falling asleep while typing so I bid you all adieu.

I HOPE YOU'RE ALL HAPPY AND HEALTHY!!!! Positive thinking rules EVERYTHING!

Th-th-th-th-that's all folks!
-Kay

Hi Kay!

I was going to send you an e-mail later this week if I did not hear from you! I am so glad that you are doing well! Finally! I am jealous of your platelet count. But I am soooo happy for you, you deserve a break!

I have the fatigue issue too, albeit it is impossible to compare but I do have it. I force myself to keep moving, I mean 'force", and it is a real challenge some days but I keep plugging. My motivation is my racing that I love to do. But I know of what you speak! Deal with it as best you can an be creative with yourself. I keep telling myself that I am in charge of the ITP, the ITP is not in charge of me!

Stay in touch and keep smiling! I just love that picture! What a happy soul, my kind of person!

Jeffrey

I won't say that fatigue isn't part of ITP, but I do think that many times there is some sort of vitamin or mineral deficiency that can be diagnosed and treated. Those tend to be overlooked because we tend to blame ITP for everything and don't dig any deeper.

I go through the same thing with Lupus. Just blame that all the time. Then months later I find out that something was low (but still within normal limits on the reference range) and treating it makes a big difference.

I recently forced myself to go to the movies with my husband. It was the first one in 7 years. I could barely walk through the parking lot. The next week I found out that my Magnesium was 1.5, lowest 'normal' on the reference range. I began taking a good Magnesium supplement and it made a huge difference within a few weeks. Sometimes low-normal is not acceptable for our bodies, although doctors brush it off because it's still normal. Request blood work and get copies of all labs! I've saved myself from things quite a few times.

Kay L,

Stay happy and healthy. I hope you are recovering from your cold.


Sandi,

My hemoglobin was low a few weeks ago and the doctor dismissed. However, the nurse said that could def cause fatigue and dizziness. Def good idea to save your labs and ask questions if something is off.

I hope you can do something about that. No need to feel miserable if you can fix it easily!

Meridith Jane - my "go-to" drug is dexamethisone. Doesn't work for everyone, but it seems to help for me,

my "go-to" drug is Dexamethasone. Doesn't work for everyone, but it seems to help for me

Same here. It helps immensely to have Dex as a 'rescue drug'. No matter what, I know that 4 days x 40mg of Dex will boost me into the 50k-60k range. I always have an open Rx for it.
I cannot stand the stuff...but it does work.
.

Last two times Dex was also my rescue drug. For some reason the Prednisone didn't seem to work. But the Dexamethasone pulses seemed to really help. I do like Jack--4 days x 40 mg of Dex to boost my platelets.

But sometimes when the platelets crash, it takes a while for them to stabilize and for the meds to start working--at least that was how I was last time.

And, I know what you mean about the hemos--sometimes it's hard to convince them that you want to do a wait and see before pushing too much meds!