Newly Diagnosed and Riding the Roller Coaster+ a ?

Virginia - yes, it is your body and your life. I felt the same way and did push for what I thought was best for me. You have to be your own advocate and there is nothing wrong with that.

UPDATE: It has been about a week since my pred was lowered to 40mg. I got a BCB done today and was at 145k! That means it more than doubled in a week with a lower dose of meds! So I am excited, but at the same time a little stumped. I don't want to over celebrate and am not sure what to expect next. (OF course who does?) Just wanted to share. Hope all is well with everyone. Kittie how are things with you?

woohoo! Good for you va_n_ok. I pray it sticks for you. As many have pointed out here in the past this little bugger ITP is a roller coaster. Just hop in, throw your arms in the air, and scream... well OK maybe don't scream... but just realize you are in for a ride. Once you are off of it then find a trash can.. :sick:

Great news! All you can do is take one day at a time and enjoy it while you can.

Virginia:

Great news on your numbers - what I wouldn't do for 145k (heck - I'd take half of that)! I'm glad you've been able to go lower on your prednisone as well - 40 is still awefully high a dose, I hope you get to go down soon.

Soooo, how am I doing...let's see - it was 13k, dexamethasone, 91k, then a week later down to 11k (which was 9k when they re-ran it), 4 more days of dex, then only up to 32k by that weeks end. That was on this last friday. He didn't put me on anything else because really, I'm not getting much relief from the drugs, and he's finally realizing that if I'm over 30k, I don't want to treat. I'm kind of chasing numbers at this point.

I'm now in the process of trying to get in with an ITP specialist at Johns Hopkins, and that is a total rigamarole. I swear, doctors think that you don't do anything with your life except what they need you to do, and that you have all the time in the world to call people and re-arrange schedules. It's taking forever just to get the next appointment made, and god knows if he tells me he just wants to take my spleen out I will probably not handle that so quietly.

So, I guess that right now, I'm probably doing what I shouldn't do - that is, I'm doing nothing. Given my latest patterns, I'd imagine they are not staying at 32k, and have probably fallen. I know my counts are probably pretty low since they keep drifting that direction, but I feel fine, have no bleeding, bruising, petichae, etc. I actually would love to know what others "feel", or if they have any symptoms. For me, ITP is just a number - its never affected me in any other way. Maybe a little light headed sometimes? And sometimes tired? I don't know - maybe I've had this for longer than I knew and I'm totally used to the "feelings".

Hopefully I will get in with the specialist soon. I might get my numbers done next friday, but honestly - I kind of just want a break from it for a bit - for my mental health. Sometimes this whole process is just friggin exhausting, and for me, the drugs, treatments, and doctors are worse than the ITP.

Love your update Virginia - enjoy!

Outside of the visible signs for me (I am diabetic too so blood sugar checks and injections leave very distinct marks at various platelet levels) the only sign I have is I get waves of inexplicable fatigue. I will be fine, then overwhelming urge to take a nap, then fine.

Kittie,

You are in my thoughts and prayers. I know I haven't had this long, but I haven't noticed any other symptoms or anything, just when I was diagnosed I had the bruises and petichae and they are pretty much gone. I get tired like Dave mentioned, but that has been an issue for me for awhile. I don't blame for how you feel. I just hope you have some relief soon. Please keep us updated.

I love what Big Dave wrote! Oh, the "pity-parties" that I threw at home in my honor! It has been up and down but I keep myself educated and talk to my hematologist with knowledge and feel like I really am a partner in my medical journey! My doctor knows that I know about all the latest and I have to say it's because of pdsa. I've read everything on the website over and over and it really has empowered me!

My count was in the normal range in February - blows my mind - but it took a week for the black & blue spot on my arm to go away after a blood draw for thyroid levels on the 19th.

Dave are you insulin dependent?

I don't like roller coasters - never have - so I don't do them, I do yo-yo instead

Virginia have you had your thyroid levels checked? I'm too lazy to look through this thread to see if that was mentioned.

Melinda,

Honestly I don't know. I rarely get sick and do not see the doc that often. When I do go I have mentioned the fatigue, and have had blood work done for other reasons before so I always just assume they check it in the process. Lord only knows, I mean heck I was diagnosed with arthritis at 24.

Melinda - yep! Going on 28 years as a Type I diabetic - After my ITP diagnosis I started putting down as hobbies/interests that I collect autoimmune disorders...

dmblank - when I first got diagnosed in 2007 this site was huge for me! I was in the hospital on my laptop researching away. Because of this the hospital assigned hemo and myself had a huge fight since I started to question his action plan. I got a "I am the doctor here" speech to which I said "Not anymore you aren't". I got assigned another doctor from the same clinic and she was great! Without PDSA as a resource who knows how things would have been different.

Dave - no wonder doctors dislike Forums! (Kidding)

The PDSA is a great place!

Virginia my former MD [had to switch medical so no longer have him] was big on having thyroid tested - when getting blood work done for a physical he always ordered a full thyroid panel, it isn't in a regular CBC so must be ordered. That's how my Graves was discovered, through blood work for a physical.

If you are tired a lot it can't hurt to have a thyroid panel done just to rule out hypothyroid.

Dave good for you - you sound like you are doing well with the diabetes. You know I could swear after ITP took up residence my body put a sign on it saying Autoimmune Disorders Welcome

Many Drs. just tell me I read too much. But I feel as many that I have learned more from PDSA then anywhere or one.

Melinda, I may get it tested, especially if that continues. Right now I just try to find energizing foods, etc.

Got weekly BCB yesterday. 132K. Went down a little but still real good. Figured I'ld get a call from the hemotologists nurse yesterday or today, but nada. My appt was suppose to be yesterday but they moved it and said the nurse would be calling. Guess since it went down they don't want to lower me anymore yet Just my guess and lack of patience. lol. Hope all are doing well!

Yeah they lowered me to 30mg of the Pred and plan to go to 20mg next week if all is well!

Virginia - how are you doing? Did they lower you to 20 mg yet?

I've been off all steroids now for about 2 weeks and it's been great, although my body is totally confused w these changes and now I have oily skin, oily hair, and have breakouts. I still have the extra 15 pounds I added on over the course of the last year from the steroids as well.

I'm going to a new dr tomorrow with Johns Hopkins, and I'm looking forward to that. Well, maybe not looking forward to..... But interested for sure. Also interested in my numbers after this many days... Last dexamethisone treatment only gave me a one week bump in numbers, then they plummeted. This time, a week later they were 32k, and I haven't gone back since. So I may have really crap numbers and not even know it, but I gotta say - I have been feeling great!

Hope you are still on the path to a lower dose!

Hey Kittie,

I've been wondering about you. Glad for you that you are off of the steroids and that you are feeling great. Isn't that a main point?! Very happy for you. I started 30mg Fri. and she said that if I was stable this week they would call me and change to 20mg. Just got my CBC done and was at 137k!! So I should go to 20mg in the next few days. You are good...it only took me 2 mon. to gain 10 lbs. (Actually less than that, it all hit at once.) I am working on getting it off though lol. Please keep us updated on John Hopkins and your count. I get what you mean by the excited/interested lol. I sure hope it goes well.Good luck!

UPDATE:

Just an update. Looks like I am in remission! I was 184k on 4/17 and 171k on 4/20. I started on 10mg yesterday after seeing the specialist on Friday and we made plans to finish tappering of the pred in the next couple of weeks if all stays well. I was shocked for the sudden jump from 130s to 184k and I think they were too! Just glad to be feeling so much better since I'm not on much steroids. I hope all is well and thanks everyone!Kittie hope you are still doing good!

I'm so happy for you! Just goes to show that you can get a rise when it's not expected.

Virginia - congrats on those impressive numbers! It's always nice to get a pleasant surprise at the hematologist office!

I am still in the "do nothing" stage since meeting with my Johns Hopkins dr. It's weird not knowing my numbers, I've gotten so used to getting them every week that I feel a little lost without them. But I still feel fine, no signs of anything....

I am supposed to get my numbers once a month, so that will be in may.

It just occurred to me after reading your last post that you haven't seen my posts in other places about my meeting w the doc at johns hopkins! It went really well - I would cut and paste but my computer is acting up tonight. Check it out in social chat, Kittie update!

Kittie,

I saw some of the posts after you went and I was/am so happy for you. I totally understand it being weird about getting checked less often. I am expecting it to be too.

I kinda feel a little weird now that I am in normal range. Like I am no longer a part of an elite group. :blush: I know I know! It is weird and probaby wrong! But you are all so great! Sorry if it is weird.

Va - you are still a part of the group! Once an ITP'er, always an ITP'er.....

Virginia:

Weird development tonight.... I finally got my numbers back from my doctors appointment (at johns Hopkins on 4/9). They were 129k!

This is the biggest increase I've had in about a year, and it happened during a time I wasn't taking any meds. I mean, I finished a round of dexamethisone in March, but the counts from that were only 32k after a week. I've been taking papaya leaf extract (detail about this in the "natural" section) for about three weeks, and this could be helping.... I don't know!

Anyhow - it's pretty bizarre to have such a great report back, and from my new doctor that I like. Weird turn of events over the last month, that's for sure!

That's a great count, KittieG, really pleased for you!

Wow Kittie that is amazing! Wow Wow! I just don't know what to say! Congrats!

I am very excited, I had a blood test yesterday and my platelets are now a fantastic 217,000

I am so very pleased. I am currently on 10mg of prednisone and droping by 2mg per week now. I am also taking the Maharishi Amrit Kalash nectar and Ambrosia tablets (Ayurvedic medicine) If anyone wants to know the website I am going to for my products please email me (I was buying from Ebay but have found a proper site now)

I have another blood test in a month so hopefully I am able to report the same count or even higher

this is fantastic KittieG. are you still on any prednisone?

WOW Va_n_ok, your counts are fantastic. I too have good numbers now (217), how frequently are your blood tests going to be now. I am going to be having monthly for the next 6 mths according to my GP. That is definitely something I can put up with