Newly Diagnosed and Riding the Roller Coaster+ a ?

Hi my name is Virginia. As of February 9th, 2012 I was living a pretty normal life for a 24 year old wife and mother. I have never had any real medical issuses, in fact I kind of prided my family and I on our ability to not get sick; especially with me working in education. I had not been sick or even really more tired then normal. I had the day off work February 10th and got up and did my normal routine. Ran, got my 3 year old ready for a dr. apt., and stressed a little over a meeting I had that afternoon. After my run and shower I noticed I had what looked like a rash on my neck. I figured it was a food thing that would go away and ignored it when it come up on my arms. Saturday morning I woke up with bruises all over, more dots, and my lips and gums bleeding. I checked webmd and it didn't say much, so I wasn't really concerned. By that afternoon my feet were kind of going numb so I decided to go into urgent care. (I live in a small town.) They sent my to the ER with a fear of Lupus. After 3 hrs the ER told me my platelet count was 15,000 a if I sneezed I might could bleed to death and this could be Lukemia. (Again small town and they had no clue.) They sent me to the nearest big city ER and after CT scan and and hour I was told I had ITP and my platelet count was at 1,000. Since then I was admited, got a pack of platelets, and was put on IV steroids. I spent 3 days in that hospital and dandy insurance sent me to another hospital where I spent 3 more days and got a new hemotologist. After 6 days in the hospital I was up to 64,000 and was released on 50mg of predisone a day. Thanks to insurance again I had to chage to a 3rd hemotologist who I met with 4 days after my realse. I got checked @ 81,00 there and scheduled to go to my Reg Dr. weekly to have my CVC checked. I got it checked February 28th only to finally get the results on March 6th at 66,000. March 6th results showed 37,000. By this point I lost my composure. I don't know if it was these crazy steroids or just feeling like I was being passed around. I finally met with my PCP and he took the reins. March 7th I was at 40,000 and today, March 9th, I am at 48,000.

I am feeling much better, but after finally allowing myself to do research I am a little concerned about the affects of the steroids. How long is too long and what symptoms should really alert me? I kind of have it all at times.

I have also been asked if I should wear a medical id bracelet at least until my count gets up to an "OK" level. Does anyone wear one?

Thank you for reading my long post. I appreciate it and feel better knowing there are others on the roller coaster too.

I was diagnosed on tuesday 6th march 2012. I am on 100mg of prednisone in the morning and my last blood test 2 days ago is at 80,000 it was initially 9000. I am crabby, short tempered and can not really focus on any deep conversations. This I hope is to do with the prednisone. I was advised to take a Vit D and calcium supplement as the prednisone can give osteoporosis after long term use and I want to protect my bones as much as I can. I am also taking some other things that I feel would be good for me (not dr prescribed).

I also feel like there is no control and we are at the mercy of others/our bodies and whatever else chooses to be a bump in the road. Just hang on tight and try not to fall of the roller claster. Many others share your journey and can really relate. I believe our situation can only improve from here

Hi Virginia - welcome. Your story is typical of many newly diagnosed patients.

Steroids don't do a whole lot of long term damage until you are on them a long time. I've been on and off a few times for months starting at 60 mg's, and have been on Prednisone daily for the last 7 years (5 to 15 mg's). I don't have any long term problems yet (bone loss, cataracts, etc). I did have short term side effects on the higher doses...mentally crazy, shook all the time, had weird thoughts, couldn't stand noise, couldn't think, rise in blood sugar and blood pressure, etc. Those usually go away as the dose is lowered and then you get the taper side effects (fatigue, muscle pain and weakness, joint pain, etc). Fun drug.

As for feeling the loss of control, you will regain that in time. Once you learn all about ITP and can become more vocal in treatment choices, you will feel better about things.

Thank you both.I am feelng a lot more positive after I finding this sight. I am now just reminding my family that when I am in the hateful moods that it is not me and to ignore me, trying to sleep at what time I can, and trying not to eat everything. Thank you all again and I hope I can return the favor.

Stock up on veggies.

Hello

I am not sure what my diagnosis is at this point. I have been dealing with serial issues since last year. Initially I had high liver enzymes that were resolved by Christmas and presumably by removing Lipitor. On 11/20/2011 I had food poisioning. This developed into "Reactive Arthritis" terrible joint pain and severe weakness. I was diagnosed 1/19/2012 by a rheumatologist. Predinizone at 40 mg taper down.

Rheumatologist performed a CBC and my platelets were low 125 , discontinued Prilosec, recheck at 2 weeks 117, discontinued High Blood pressure medicine: Lozartan/HCTZ, recheck 50. To hematologist 2/23/2012 Platelets at 30 also WBC low 2.4. Bown Marrow Biopsy on 2/28/2012 showed nothing definite except immature platelet and white blood cell makers. Platelets and WBC continue to drop 3/9/2012 platelets at 10. This week had IVIG 2 days, Nplate on Tuesday and Neupogen Wed, Thur, Fri for WBC increassed WBC to 3.5 so some good news. I have a second opinion appt with a hematologist tomorrow.

Any body have thoughts? Thank you for your help!

Scott

Hi Scott, I'm interested in your white cell count because as a reaction to a vaccination I had last year I have had a low neutrophil (white cells) count for a while. I had 0.3 for a long time but it's gone up a bit now. I haven't been treated, the haematologist said that Neupogen can give painful side effects as in bone pain. Did you have any problems? Where I am they call normal over 2 so maybe they use a different measurement somehow. What is the normal range that they want you to have?

I've been on Nplate for a couple of years for the ITP which I've had for six years. It's been great and my platelet count is fairly stable, so good luck with that.

With me, the ITP and neutropenia aren't really connected although both are autoimmune, but if they occur together they are sometimes referred to as Evans Syndrome. How is your red count? Because with Evans it is more usual for them to be off than the whites.

Scott- all I can tell you is that sometimes it can take a while to get a diagnosis. Some disorders overlap and can take time to develop.

A seond opinion with a hematologist is great, but make sure you keep up with the rheumatologist too.

Thank you for the information. The Hematologist is really using the infection fighters as a limit and wants them above 1500. Neupogen didn't hurt much, some bone pain but it wasn't significant. From what I understand I have a high tollerence for pain. To me a having a IV needle put in hurts much worse. My red count is in the normal range.

My platelets were at 8 today so I had an infusion of platelets. My veins on the hands rolled so I had a total of 5 sticks today. What a pin cushion. Thanks for the info.

Thank you Sandy! The second Hematologist is running more blood tests. Both Hemetogist think it is a waiting game. Platelets before platelet infusion were 8 K. Had a platelet infusion today and the platelets were 41 K 1 hour after. The hematogist at Emory said that there is diagnostic value in knowing whether the platelets go away quickly. So I guess I have a production issue which from my bone marrow biopsy was already known.

Thaank you for your help!

Scott

Virginia - you asked about a medical alert bracelet. I do wear one - I figured that since I seem to be taking the "slow and stubborn" route, there are probably going to be lots of times that I won't know exactly what my numbers are, and since I hover around 20k, I thought it was a good idea for me.

Mine came from medid.com. It is sterling silver, and - since I have to wear it - I got a pretty one. I've even had people compliment it as a bracelet, not knowing until they see the little red symbol! And the company sent it really fast - I feel like it was mailed in about a week. It was a bit pricey though. Eh - what are ya gonna do?

I'd say the only thing I don't like about wearing it is that it opens conversations that I'd rather not have, but I've pretty quickly learned to shoot those questions down if I don't feel like its someone who needs to know (stranger, remote co worker, etc). It also made my husband rest easier, since I travel for work, and I am the afore mentioned stubborn.

I'm sure there's lots of other sites out there as well - if you decide to wear it, go pretty and consider it a gift to yourself!

PS: when Im on higher doses of one of the steroids, chewing gum is a big help. It keeps me from grinding my teeth, and gives me "something" to do. I cruise through gum, and it's a lot less calories.

Kittie- Thanks a million. That makes me feel better about even thinking about it. (Part of me began to think if I was over reacting.) After my drop last week I have been going up again and as of Tuesday was 56,000. So I don't think I am going to get one just yet. If I get off the meds and level out low then I might. Definently will get a pretty one too. It is good to know. Gum and cinnamon candies are my friend right now.

Not over reacting at all - I see it as pro-active.

I also got it because I think if I can ever get my numbers to stabilize anywhere above 30k, I'm going sans treatment. but they've been too low too often to do that, and ive had no consistency as of yet - unless you think of my unpredictable patterns as consistent :S !

I'll try to take a pic of mine and post.

I can't blame you for wanting to go sans treatment. I have only been diagnosed for a lil over a month and been on steroids since. My numbers went up, dropped some, and then went back up again while on them, but my last count earlier this week was 56,000. The steriods are already (so to whine) driving me nuts. I see the hemitologist this Tuesday and told my husband I want to see if she will taper me off and he did not like that. It just scares me how confused and unfocused (and yes angry) I can get when I work with children.

What steroid are you on? What mg?

(Showing I'm a weenie.) I know it could be worse, 50mg prednizone daily

Hey, 50mg prednisone is a lot!! You aren't a weenie- hah Really I couldn't tolerate 50mg. I had a bad experience in a job interview which seems funny now. Three people were interviewing me at once and I was sweating, my hands were shaking, face beet red and my mind was blank. I realized no more job interviews until I taper down from the prednisone! When I went down to 40mg everything seemed much better. Then 20mg even better.

The idea with prednisone and dexa is to bump the numbers up high and hope they stay there. But I've had enough of that approach, couldn't do the roller coaster ride anymore. I was up and down for 3 years. Now I'm doing my own system which is lowest possible dosage. I'm on a tiny bit of prednisone 5mg-8mg and lowest dosage of Promacta 25mg. All I care about now is stability at a reasonable number, 30K is great but if I can't get that I'm good with 20K.

I'm not recommending what I'm doing to anyone else. But for me, I'm just trying to find something I can live with.
good luck!

Posey is right - 50 mg is a lot! Even though the Dex that I'm on is suppose to be 6X more powerful than prednisone at the same dose, I couldn't handle the high doeses of prednisone. In fact, I won't let him give me a higer dose of Prednisone than 20 mg, because the side effects are so intense. At 40 I was talking so fast while working that I could tell I was running sentances together, and I couldn't even stop myself. it was all just garbledy gook. And driving - holy crap. I think my road rage was the most intense I've ever had, and when I'd get to work I wouldn't even remember the ride. Scary.

If that mg is too high, maybe you could talk with your dr, because didn't you say that you were at 56K? I would be totally happy with 50-60k and lowering the dose, personally. You have to balance your life AND your illness - its all a game of balance.

Good luck!

I went the same way after doing high dose Prednisone a few times. Refused to do it and kept at a lower dose to just stay in a safe zone. It worked okay for a while, then I got tired of that too and moved on.

Thank you all of you! I feel much better about asking about it when I go in. I asked questions about side effects when they told me what I was going to take and I walked away thinking I would be hungry alot and a little "moody". I had no idea the effect they could have. So ready to get to the Dr. Thank you again.

Oh I also had a couple of more kind of general questions. Has anyone seemed to get sick more often then they use to. Also, what medicines do you avoid (I know like ibprofen) and what is no problem? I know each is different, but was just curious. I don't usually take meds anyways, but had some sinus issues lately and was wondering what I could take. Thanks yet again

No, I didn't get sick more often than usual. In fact, I seemed to be sick less often. I used to get colds twice a year like clock-work, but since ITP, I don't even get those.

I'm not one to ask about avoiding meds. I took anything I wanted except aspirin and Amoxicillin.

I think something I'd avoid w sinus is anything w pseudo ephedrine, because it is like speed and with the prednisone I think that'd be pretty intense.

You could def ask the doctor about that.

And now that you mention it, I agree w sandi. I haven't had any illness since being diagnosed w ITP - and I used to have migraines all the time. Since diagnosis and all these treatments, not one.

I never really got sick much before, just was told to watch out for it so was curious. I haven't had much arthritis issues since.

UPDATE!
Went to the hemo today. Count was up to 70k! I told her I was tired of the steriods and she said she could live with 70k. So we tappered to 40mg of prednisone. We will check in a week and see from there. She didn't seem opposed to the tapering (she even said "She has been on 50mg for a month, we have to think how long can we keep her on that high of a dose"). I just hope I didn't push (don't really feel like I did). I was REALLY surprised when I asked her if this didn't work what the next step would be, she answered splenectomy! I was like uh no! She says that one of the top Drs on ITP says that a splenectomy offers a more long lasting result. I said I thought there were other things first, like IVIG. She said we could try them if I wanted but she thinks they will be more up and down where the splenectomy has more of a chance of sticking. Just hoping this works! UGH! Check my count again in a week and then go back to hemo in 2 weeks.

Va - IVIG is pretty temporary. It can give a quick rise but counts usually drop after a week or two. Not enough punch for the amount of time and money it takes! I've never had it for those reasons. It can be a great rescue treatment.

Virginia you said: I just hope I didn't push...
When my count hit the gutter after a tetanus booster I outright told my hematologist I will not go on prednisone again & look like the Pillsbury Dough Boy for my son's wedding - and I meant it! She put her prescription pad away and they checked my insurance and I received WinRho instead a couple days later.

What a lot of us have learned here is this is our body.

As Sandi mentioned IVIg is pretty temporary - my hematologist told me she had never had a patient go into remission using it.

When I was diagnosed in 1989 the choices of treatment were 2: prednisone or splenectomy. They've come a long way since then. I'm sure you have looked at the treatment section but I'm going to put the addresses here anyway - it's food for thought and something to talk to your doctor about.
www.pdsa.org/treatments/conventional.html
www.pdsa.org/treatments/complementary.html

Good luck with the taper - and congrats on the 70k!

Melinda,
Thank you. I think that is how I felt at that time, "This is my body, my brain. I am the one that feels out of control and don't like it." I was nervous that I had "pushed" because my husband and I were not really seeing eye to eye. My view is that I am at 70k (yesterday morning she wanted me to check again and it had climbed to 87k overnight!!). Wether I am at 70k or 200k, if they tapper me off and I drop, then I was going to drop.He felt like I needed to try and get as high as possible before tappering, but I had already been on 50mg for a month, and had had a drop in the process.

As for other treatments, again I was shocked for her to say splenectomy so quick! She will not use WinRho. (If I asked I'm sure she would, but she said that she and the other 6 Dr.s have never used it and that it has a big black warning label.) She told me we could try what I wanted, but that the others were more temporary. The next thing on her list would probably be Rhetoxin (Drew a blank can't remeber if that is right.) I think at this point I need to do some more reading, hope my count stays up after the tapper, and come up with a plan for if it doesn't that I can be okay with. Thank you all again. Everyone on here has helped me feel like I am not just having the Drs. throw info and their oppinions at me, but that I have a voice.

Virginia you are going to do just fine!

Until one has been on a high dose of prednisone one doesn't know what it feels like [granted our family knows the results because of the way we behave, but they don't know how it feels].

Another thing I learned is I don't need to get counts in the normal range as that just may not happen, to have them at a decent liveable count is good.

Your doctor doesn't like WinRho because of a black box warning? - I believe Rituxan has a black box warning also.

Yes, do your homework so you know what is out there!

Great your count was up again!