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TOPIC: my journey, crazy Emily

my journey, crazy Emily 4 years 4 months ago #47942

  • Sandi
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I'm not going to scold you! ;) I'm glad that everything is good.
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my journey, crazy Emily 4 years 4 months ago #48038

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Count was 88,000 on wednesday. Planning to continue my pred taper by 5mg a week. Now at 30 mg. I have a conference in new orleans. I have had this annoying drippy nose for a little while. I have never had allergies before but who the heck knows what is going on with my body these days. Anyway, lightly touched my nose with a tissue at the airport and the bleeding began. I was in the bathroom so I stayed in the stall thinking well maybe i should just get back in my car and go home. Again, the nose bleed wasn't a 'go to the hospital gusher" but is not normal and the unpredictability is annoying and it took a good 7-10 minutes to get it to stop. I hate the color red. The nurse practitioner recommended using some Vaseline in my nose and that did help when i went to sleep. I didn't wake up with crusty bits in my nose. I made it to the conference and will keep a bunch of tissues with me at all times and only touch my nose in private. No dabbing during presentations!

On another note I had a third opinion with another local hematologist and think i will make a switch next week. He seemed much more knowledgeable and respectful of my understanding of the disease. He has also done research on platelets in his former position. He was also very familiar with treatment options. He is a bit older then my current doctor and I told him I am worried about him retiring but I guess I have to start some place. Promacta was ordered by my current doctor as the next treatment if my platelets fall below 40000 ish. I want off the steroids but I don't want to be down to 4000 again and then start the next treatment.

Sorry for the long post. I guess I needed to get it all down.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #48042

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You might need your nose cauterized. Nose bleeds can occur when a vessel keeps rupturing and that happens to people without ITP too.

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my journey, crazy Emily 4 years 4 months ago #48129

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Count today was 82,000 so they seem to be dropping very slowly with the Prednisone taper, which gives me great comfort since they are not crashing. I would prefer no drop, but again, not crashing leads me to believe that they will level out (at least I hope so) I also picked up Promacta today in case things go side ways (fingers remaining crossed that the Rituxan will get me to some remission and I won't need the Promacta).

Also, I have been using vaseline in my nose to keep it soft and that seems to be working really well. So far, no nosebleeds since the airport event last week. I also added a humidifer to our house and plan to get one for my office as well. Since my counts are good, I have to believe I am just now really sensitive to the dry conditions. Also, the Protonics for my stomach have the side effect of a drippy nose and sore throat, both of which I have and I know I am not sick. I thought that was a side effect of the Prednisone, but I think it is the Prontonics.

Tomorrow I taper to 25mg. I have been going done 5mg a week (stared at 60mg) of Prednisone and then staying with that amount for 7 days. So far, it is going well. I feel so much more like me now. The emotional depression is much better.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #48135

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Emily my GP told me the getting from 15mg to 7.5mg a day is the hardest bit. Below I've hopefully posted a link to UK guidelines. Once I got down to 5mg a day I finally started feeling human again
cks.nice.org.uk/corticosteroids-oral#!scenario

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my journey, crazy Emily 4 years 4 months ago #48141

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Thanks for the link, but when I tried to use it, it says that it can only be accessed if I was in Great Britian. Maybe you could copy and paste the information? I am more concerned right now about losing platelets as the prenisone goes down than the immediate side effects of the Prednisone, but I am sure that is just because I have not crossed that horrible bridge yet. Looks like I drop about 10,000-20,000 platelets at each decrease of prednisone.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #48151

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Emily it's a fairly large pdf..If you send me your e mail address in a message I will try send it to you as an attachment. Anne x

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my journey, crazy Emily 4 years 4 months ago #48164

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I sent you a request for connection. I do not know how else to do it!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #48173

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I have tapered prednisone and the body aches, weakness, fatigue happened when I went below 10mg. But A LOT depends on how long you've been taking it. If you haven't been on it very long- say 1-2 months, then your adrenals will likely bounce back fairly easily.

Because prednisone takes over the job of the adrenals, they turn way down and can even atrophy from lack of use. When that happens it can take time and a very slow taper to get them "fluffed up" again and fully functioning. I have been on and off of pred for 8 years- I don't recommend that!

I am off prednisone now for 1 week- yay! (thank you Nplate) and adrenals are doing their job. I have joint pain, I'm tired but can get through the day. I don't handle stress well. I get fatigued, exhausted over-whelmed if I work too much or am very worried.

You asked in another thread about Promacta and Nplate. I had headaches and brain fog, forgetfulness on Promacta. Most people don't have that. I started at 50mg and it worked fine getting my counts up. i think it took a few weeks to get up to 50K. After a few months my counts went higher and I was able to reduce the dosage to 25mg. That has happened with other people on the forum too, Promacta can become more effective with time.

On Nplate I have had fewer side effects, almost nothing really. It keeps my counts around 50K and just seems very easy! good luck- hope Ritux works for you!
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my journey, crazy Emily 4 years 3 months ago #48294

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Happy to report that I have stayed steady at 84,000 as I dropped from 30 mg of Prednisone to 25 mg of Prednisone. Tomorrow I will taper back to 20mg for a week and see how the counts go. I feel the best I have felt since this nightmare began. I am sure it is due in large part to the decreased prednisone and also the more consistent numbers over time rather than the huge swings that were occuring when the doctor thought that steroids would just knock this out of me.
Thanks for listening.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #48295

  • Sandi
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Good for you, Emily! It's a good day.

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my journey, crazy Emily 4 years 3 months ago #48380

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Count was 88,000 today, two days into 20mg of Prednisone. YEAH!! Gotta take each 'win' when it happens.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #48381

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I have been following your story. I am so happy to hear your counts have remained good!
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my journey, crazy Emily 4 years 3 months ago #48391

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Great news Emily x
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my journey, crazy Emily 4 years 3 months ago #48436

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83,000. I get to reduce to 15mg of Pred tomorrow! Yay!

My new doctor realized that no H Pylori test was ever done. I have lost about 15 pounds since january, continue to have GERD and keep having nasal issues. I guess all of those are symptoms, but I sincerely hope I do not have H Pylori. That brings me to my question. I read the treatment that is usually used and it sounds like a total assault on my body. I am, of course, paranoid of everything that goes into or onto my body these days and wondered if anyone has been treated for H Pylori and could give me some insight or things to avoid or refuse. I get tested on Thursday. I kick myself that I never asked about being tested before. It was in my notes from the beginning and I guess I never followed through in asking. Thanks
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #48437

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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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Hello Emily,

I tested positive for H Pylori early on and went thru the treatment - really not a big deal - antibiotics - I did not have any major side effects (I ate yogart everyday). It did not help my counts but it did eraticate it.

Cindy Ann

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my journey, crazy Emily 4 years 3 months ago #48438

  • Sandi
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Emily:

There is a pretty standard protocol of certain antibiotics used for H Pylori treatment. That's all I've ever heard that should be used. I think I've only seen two cases over the years where treating H. Pylori actually helped counts, so it's a long shot but definitely worth being tested and treated.

Good news on the counts!

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my journey, crazy Emily 4 years 3 months ago #48440

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Thank you both for the information. I will keep you posted--whether you want to hear or not!!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #48532

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Glad to report that my platelets have been holding at about 90,000 through the last week at 15mg of Prednisone. I drop to 10mg tomorrow 5/12/15 and we will see how that goes. The H Pylori results were not back yet so no answer on that question yet.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #48590

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Down to 10mg of Pred and platelets dropped to 80,000. I know that is still a great number, I just hate when they decline. I had a slight bloody nose this morning so at least I was a bit more prepared emotionally for the result. H Pylori was negative.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #48591

  • Sandi
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Emily:

Try not to think of it as a decline. Think of it as a fluctuation. Your counts have actually been bouncing around in the same range for weeks. I used to break the numbers up into groups in my head, like this:

0-10k - low - treat
10k-30k - low, but ok - monitor weekly and possibly treat
30k-50k - safe - monitor bi-monthly
50k-70k - safer - monitor monthly
70k-90k - comfortable count - monitor every four to six weeks
90k and up - close enough to normal. No CBC's unless symptoms appear.

Of course your thoughts about monitoring and treating may be different, but I think you get the gist.
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my journey, crazy Emily 4 years 3 months ago #48596

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Gosh. We'd never be away from the damn hospital if Dougie's Dr stuck to that! I'd guess his count has been it's normal low teens for a while again - he last went to get a count somewhere in Jan/Feb I think and he's due to go again in about July. I don't bother getting counts between hospital visits. I totally agree about variation and seeing counts in tens or twenties rather than units though. I think lots of people get far too many counts and get totally hung up on numbers as a result.

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my journey, crazy Emily 4 years 3 months ago #48598

  • Sandi
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Well, Dougie was different. You didn't treat him. :) For most, that would be the standard.

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my journey, crazy Emily 4 years 3 months ago #48639

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That's true - the Dr said that numbers alone wouldn't make a difference to being treated as he bases that decision on symptoms. And I realised a few years back that knowing his count was low unfortunately made zero difference to what risks Dougie took in terms of activity. So his count is a bit irrelevent most of the time. Not at the moment though - we are still having a lot of trouble sorting out minor surgery to get a mole removed. It's like the dermatologist and the haematologist speak different languages as they seem entirely unable to communicate with each other!

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my journey, crazy Emily 4 years 3 months ago #48650

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Down to 67,000. Doctor asked me to stay on 10mg of Prednisone until Thursday and we see how things are then. I knew they had dropped as I have new bruising on my legs. Not sure Rituxan will turn out to do much for me. Promacta pills are in my house in case that is the next step. Luckily, I feel pretty good.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #48659

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Your count does seem to be prednisolone dependent Emily.

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my journey, crazy Emily 4 years 3 months ago #48709

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Down to 24,000 even though I am still on 10mg of Prednisone. I can officially say that Rituxan did not help me. I start promacta at 5am. Back up 30mg of Prednisone given the long weekend. Not a happy camper about the drop. The doctor wanted me to stay at 10mg, but I am terrified of letting them just continue to drop with the weekend coming up. He asked me not to take any prednisone on Tuesday morning so he can see how I am doing. I HATE ITP.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #48711

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Sorry to hear that, Emily. Hopefully the promacta will work well for you!! I've been reading through this thread to get more of your history, and it sounds like you've been through a lot in a very short time! Which thread is your initial story in? I'd like to read it. Although I don't have the same experience you do with ITP, I think we share many of the same feelings. And weird symptoms at random numbers. Hoping for the best for you!!

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my journey, crazy Emily 4 years 3 months ago #48714

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Taz
Thanks for your note. I had my story all over the place on this site. I am really scared that nothing will work (other than horrible prednisone). I try and stay positive and then my numbers crash and I go back to panic. Luckily I no longer have a doctor that freaks out. I will keep you posted. Feel free to email privately any time.
Emily
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #48722

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Took my Promacta at 4am, new bruising on my leg and arm and its blue, which is weird, but whatever. No bleeding nose and no mouth blood blisters--looking at the bright side. I feel very fatigued however and am so glad it is a long weekend coming up so I don't have to go to work and try and be 'normal' for three days.
Diagnosed Jan 2015 at age 50 with 13,000.

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