Welcome, Guest
Username: Password: Remember me

TOPIC: my journey, crazy Emily

my journey, crazy Emily 4 years 1 month ago #46698

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
All, I felt like I was hijacking other people's discussion so I thought it best to start my own thread. To all who have responded to me, I cannot thank you enough. I know everyone says it, but having this list to write to is truly a blessing, particularly in the middle of such an unpleasant time of life. I took everyone's advice and my hemo and his nurse practitioner spent about an hour with me on Monday before doing any treatment. They also told me that they had discussed my case over the weekend and wanted to make sure I understood the suggestions they had and felt comfortable with the process and the team. I had my usual list of questions, copies of the studies and the articles and felt they listened and were my partners in treatment and not as out of control as I have felt. We also agreed that my goal is to stay over 30,000.

We did decide to switch from NPlate to the Rituxan and see what happens. I can always try the NPlate or the Promacta again in the future, but am trying to have some positive thought that this might work. I tolerated the Rituxan pretty well. Had a bit of an itchy throat and so got a little bit more benedryl and that put me to sleep and no more itchy throat (or I slept through it!). Felt fine on Tuesday and have been able to work pretty productively since. I remain in fear of the serum sickness Sandi described as each day gets closer to the 14-21 day range!!

Count was up to the 300,000's today which I am sure was from the solumedrol shot prior to the Rituxan. I am now on 60mg of oral prednisone and hope it will keep me over 30,000 so I can avoid future steroid shots.

They suggested that I try Winrho if the Rituxan is unsuccessful, but I am really concerned about the toxicity. I know it was pulled from the European market in 2009. Again, hoping I don't need to make any more treatment decisions and that Rituxan will work, but I am also trying to be realistic that I have a 60% shot of getting some remission and 40% shot of not having any remission from the drug. I read KO's very scary reaction to Winrho some years ago, but didn't see many other experiences. If anyone has anything to share, I look forward to hearing it.

I also wondered if there is some way to lessen the Cushings like results of steroids, the bloating, water gain, moon face...and if those go away once a person stops the steroids or if those are with you forever. I have no appetite when on the steriods so I am eating much less than normal, but I am also exercising much less then ever in my life. I have lost about 7 pounds with this fun since January 13, 2015 when I was first diagnosed. I am really afraid of the long term impact of the steroids. I don't think I am a vain person, but I don't want to be a "freak" either!

Lastly, the Nurse Practioner is suggesting a port. I like the idea of less vein poking as I look like a herion addict and given some low counts, my healing powers are pretty compromised, but I read that it might be risky since they cannot put any pressure on the clavicle area where it would be inserted under the skin. I don't have any spontaneous bleeding issues, but even a small cut keeps "weeping" for some time so I am not sure it is worth that risk. Again, I have not seen many posts about ports but given the pages and pages of discussion, it is entirely possible that I missed that discussion.

I will stop writing (I am at work with a normal keyboard instead of my IPad so I thought I would take advantage of that) and sorry for being so long winded.

Hugs to you all for everything including talking me off the ledge of my emotional bottom the other day. Of course, a few more shots of steroids and I make no promises of more emtional break downs!
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46699

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Emily:

Sounds like you have a great plan. You seem much better.

About Prednisone....there is nothing that will help the side effects. You just have to go through it. It might have been a better idea to take 30 mg's instead of the full 60 mg's. You seem to be taking more meds than necessary. I don't think you need that much to keep a safe count and the side effects would have been much less. Yes, the moon face does go away but it takes time. It is caused by redistribution of fat. The same thing happens to the waist. It's odd that you have no appetite. Prednisone can cause the appetite to increase greatly and most people gain a lot of weight. It also causes water retention.

I think Rituxan is more toxic than Win-Rho. Win-Rho is actually the same drug given to pregnant women when the RH factor between mother and baby is a concern. Win-Rho reactions are much less common than Rituxan reactions.

As far as a port....it's rare to get one for ITP. At this point, your blood draws should be slowing down and Rituxan is only given four times. You could be in remission in a month or so, so it might be a bit extreme at this point. People go years with ITP and the treatments and counts and don't get a port. Might be something to consider down the line, but even people who have consistently low counts don't get CBC's all that often.

Are you saying that the 'shot' you got today caused your counts to be 300,000? It would be unlikely to respond THAT fast.

When do you go back next?

I'm glad to hear all of this good news!

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46705

  • tamar
  • Offline
  • Posts: 469
  • Karma: 2
  • Thank you received: 61
Hi Emily,

I had WinRho at least 20 times, with no ill effects. That is one person's experience...I was the "WinRho poster child" on this board for a while. I would never encourage someone to use a treatment that they weren't comfortable with...but I personally would (and possibly will) use WinRho again if my platelet count stays low.

I know that KO's most recent posts about WinRho make it sound really scary...but read his very first post. I don't know which is true, his first post or his most recent, but it is quite possible that his memory of his reaction is worse than what really happened.

I agree with Sandi that a port is not typically used for ITP. And also that 60mgs of pred sounds like a lot, but I don't know what you've previously tried and what the response has been.

I too lost weight initially on prednisone, because I was so stressed I wasn't eating. As soon as I got over that, I gained 20 pounds. Hopefully that won't happen to you! Some of my weight gain was overeating on purpose to get back at my body for betraying me...no one says you are rational while on steroids!

Anyway, good luck and keep us updated on your progress.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46707

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
I go back on friday just for blood. Since i have the prednisone in 20 mg pills it will be easy for them to adjust down. I am sure it is hard to get the right dose. When i have none i drop immediately but then they go too high. I am trying to follow in everyone's foot steps and try to be patient and flexible as the numbers go up and down. As i said, if i could get to a stable 30,000 (maybe just twice in a row for starters) that sure would be a good start.

I want to go to yoga and a bit of exercise but my husband worries that exercise somehow will lower my platelets. Is that possible or do you think it is safe to exercise if i am over 30,0000?

Hugs.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46717

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Exercise won't hurt your counts. It's actually a very good idea because Prednisone causes muscles to atrophy, which ultimately has a bad impact on bones. Staying active is one of the best things you can do. You'll probably also sleep better. There are quite a few benefits to exercising.

When tapering Prednisone, it is actually better to have 5 mg. tablets since you really shouldn't taper by 20's. Many people, including me, have also tapered by 1 mg. towards the end of the taper.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46727

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Sandi,
Thanks for the information about the tapering and the exercise. I went to Yoga today and although I feel kind of shaky, it was so nice to move around. I will continue to exercise when I can at a level I feel comfortable now that I know I am doing good for my body and not causing any additional trauma. I see the doctor on Monday for my next Rituxan treatment and will talk to him about the tapering plan. I think the concern was that I crash so fast when he put me on a 50mg dose pack after the solumedrol. I essentially dropped from the 500,000s to 7,000 in 9 days. I get another blood test tomorrow. That will be after 5 days on oral predinsone only and no solumedrol. Fingers crossed.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46730

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Emily:

Most people would crash after a dose pack. Prednisone is usually given at a high dose and that dose is maintained until counts hit a stable plateau. Then it should be tapered slowly and if counts start dropping too much, the taper should be slowed. Giving short spurts of steroids for ITP doesn't work. Well, it might work for a very short time but you won't get any lasting results.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46745

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
yes, part of my conversation with my doctor on Monday was that I was tired of being "set up" for the crashes. It was not helpful to me to have the solumedrol and a dose pack, although it is good to know in an emergency it will get my counts to a safe level. I pray for a consistent 30 some time in the near future. It is both a relief and fear not to get the CBC and to get the CBC results! I still wake up each morning and think, that must have just been a horrible dream, and then I get the steroid sweats and see my hole punched arms and remember that it is a nightmare, but a reality.

Also, I have a slight sore throat, not like I am sick and wonder if that is thrush that also needs treatment with some other fun drugs?
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46748

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
I didn't realize that you were on a Prednisone pulse until you posted it earlier. I thought you had been on it for a while. I've never really seen Prednisone pulses given for ITP. Decadron pulses, yes.

Thrush usually begins on the tongue and causes a white coating. I've had it, and my tongue felt like it was on fire. Yes, there are other drugs to treat it, but they aren't so bad. Usually you have a 'swish and swallow' liquid or a tablet that you suck on a few times a day. No side effects.

That nightmare feeling will end. I used to wake up with the same first thought. After a while, ITP isn't the biggest and worst thing in your life any more. I have a good feeling abut Rituxan working for you. You seem to be a good responder to steroids, and people who get good responses to steroids usually do well with Rituxan. In a month, this could all end for you for quite a while.

I know you don't see it this way, but you're actually one of the luckier ones. You've responded to all of the meds you've been given (they just were not prescribed properly) and you have not had much of a struggle getting counts up in the short time you've been at it.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46752

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Sandi
Huge hugs to you for helping me be hopeful! You are a very kind and generous human being. Here's to hoping your prediction becomes reality.
Thank you.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46757

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
I have my fingers crossed for you! :)

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46792

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Count was up again on friday. I don't know if it was a lasting effect from the solumedrol shot on monday or the 60 mg of oral prednisone I started on tuesday. No more solu medrol i hope. I have my second rituxan iv on monday.

I have gone back through the discussions and feel a lot less crazy and more like my emotions and fears are a "normal" part of getting diagnosed. I have also been able to get back to the gym a few times which makes me feel more like pre-ITP me. I hope i am starting to have fewer roller coaster days even if set backs occur.

It is kind of disconcerting when someone is on the list with daily updates and then disappears. I keep wondering if the person is ok or what happened.

Thanks to everyone who has ever posted or responded on the discussion list. It is an incredibly helpful and important place to access information and reassurance.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46795

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Emily - I am so glad you are doing better. :)

Sometimes people need a break and they disappear for a while. They usually come back with good updates. Very few hang around forever, although I can name quite a few who have!

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46827

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Sandi How long was your remission with Rituxan? Since you cannot have it again after your reaction, have you had to have other treatments for your ITP since Rituxan?

Anyone else want to chime in on a personal rituxan success story?
Thanks and hugs
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46832

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Emily:

The first time I had Rituxan, I got about 13 months out of it then had to treat again. I mistakenly had Rituxan again because I wasn't properly diagnosed the first time. That was in 2004 and I haven't had to treat since. Counts did dip into the 60's twice, but rebounded on their own. I don't think Rituxan caused the long remission though. I had some other health issues come into play and treating that might be helping the ITP.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46839

  • ananta
  • Offline
  • Posts: 167
  • Thank you received: 21
Hello Emily,
Here is my short Rituxan story: Background: I have had ITP for 9 years. After going through the usual OMG what is it I have? And, is there life after ITP? And how many times are you going to stick that needle in me? Life has settled down. Of the 9 years I've had ITP, 8 of them have been spent in remission. Lots of drama within that one year not in remission. After using prednisone, IVIG, dexamethasone, we tried Rituxan and had a 4.5 year remission. That crash led to a second round of Rituxan and a 3.5 year remission. Which brings us up to date.

(copied from my "What and leave my garden?" post.)

I just got back from almost 4 months overseas. The day after we bought our airline tickets, I woke up with blood in my mouth and knew my 3.5 year remission from Rituxan was over. You can read the whole story here on the message board if you do a search for it. This time I went to my hemo just before my trip. He suggested we do Rituxan again. (I had 9 days before I left town.) But since it was the end of the year (November) and I would have to pay a lot in deductibles, I decided to just use prednisone and see what would happen. I figured I only needed to keep my platelets at 30k to be safe, and past experience seemed to show that I could do that on pred. Then when I got back to the USA, I could treat with Rituxan if necessary. But surprise surprise! The prednisone put me in remission! I had my platelets checked overseas, and even though I tapered off of prednisone (rather quickly too) my platelets stayed at the normal level.

I have a dr's appointment sometime in March, (I've forgotten when) and we will see what happens. But I know that my platelets are still fine. Bruising is a good indication of my platelet level. (This works for me, but not everyone) So in both times when I went out of remission, I had several months of unexplained bruising, but decided not to go get my platelets checked until I woke up in the morning with blood in my mouth (yuck!). HaHa As perhaps Sandi remembers, I was not so blase about it when I was first diagnosed!
Or even the first time I fell out of remission!

Hope Rituxan works for you!

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46847

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Thank you both very much for the personal stories. Fingers crossed this works as well for me. My business is suffering along with everything else. I look forward to getting off the roller coaster of counts. Fingers crossed i did not crash over the weekend.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46859

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Since you respond well to steroids and are on Prednisone, I think you'll be fine.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46864

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Second dose of rituxan went fine. It took about three hours and no itchy throat this time. I have horrible veins however and got poked three times before they could get the iv in. That was lots of fun. I am scheduled for a port on thursday to avoid that fun next week, but i need at least 50,000 to move forward. Count was 180,000 today down from 476,000 on friday. Hoping for some plateau or floor to set in for me. He left me at 60mg prednisone for the time being. Somehow gained a pound although my food consumption is incredible small. I guess it is just another joy of steroids. I just need no crashing numbers!!!
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46914

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Platelets are up again and now too high (381,000) from 189,000. Nurse practitioner said to wait through the weekend and when I go back on Monday for my third Rituxan treatment, she will probably drop my Prednisone to 50 mg. I will have been taking 60mg for two weeks by next Monday. That seems like an appropriate taper given the short duration of Prednisone so far, but frankly I trust the wisdom on this list more than the doctors most of the time! Also, they will do another blood test on friday and I wonder if it goes up again if I need to push for the decreased Prednisone to start on Saturday rather than taking three more high doses (Saturday, Sunday and Monday). In the end, I am guessing it makes little difference, but I do not want to be over anxious about getting the dose down nor do I want to be complacent and let them do what they want with me if there is a more appropriate approach.

You will be happy to know that I have now made it all the way to noon without any tears! Yay for me!

with much appreciation
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46916

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
It's very reasonable to start the taper around now. My guess is that Prednisone will keep your counts up until Rituxan kicks in. The three days won't make much difference, but tapering three days earlier will just get you off of it a bit faster.

Things look great, Emily. Not much to cry about now!
The following user(s) said Thank You: EmilyK

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #46995

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
I had the port "installed" on thursday. Still not sure it was the right decision, but too late for hindsight. The incisions are pretty sore and honestly the first blood draw still hurt. Fridays count was 300,000 down about 60,000. I go back in monday for the third rituxan treatment and hopefully prednisone reduction. I was going to drop myself to 50mg this weekend but have decided to wait and see what the number is on monday and the nurse practitioner's recommendation. I am hopeful the number stays high so we both feel good about dropping my dose.

I have an appointment with Dr Provan while i am in England. It is set for March 30. I am looking forward to his thoughts. I asked my hemo to do a phone consult with him but all he did was ask for me to have an appointment with him. I have one more referral to another local hemo. I need to set that appointment up as well.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #47001

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Dr Provan is my haematologist. You'll like him, he's easy to talk to.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #47002

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
I am very much looking forward to seeing him. It is so sad that my US doctor gave me his email for emergencies and dr provan has been communicating with me via email since i first decided to go to england! He also said he would consult with my US doctor after i see him. That also gives me a lot of comfort.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #47007

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Sounds good, Emily! I'm glad you are going to see him. He's the best!
The following user(s) said Thank You: EmilyK

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #47045

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
I go for rituxan number 3 on monday. My count was down by 60,000 on friday and I can tell that it has dropped dramatically over the weekend. I am still on 60mg of prednisone but am very fearful that after a nice steady climb from 169 to 189 to 300 something has changed and the prednisone has stopped being effective. I am trying not to panic but my subtle red dots were not here on friday and are there now.

Maybe it makes sense to add a dose of WinRho to try and get a quicker response? Going higher on the steroids is not appealing. Maybe i will be pleasantly surprised on Monday but I doubt it.

Feeling very sad, scared and depressed again.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #47048

  • TGalbs
  • Offline
  • Posts: 3
  • Thank you received: 1
Emily,

I had the same port for 20 years. I actually still have it in my dresser drawer lol. I hated getting the shot in my chest, but get EMLA creme to numb the area so the stick wont hurt at all!

Subtle red dots, not fun, they come and go day to day. Each dose of Rituxan gets easier. The first one was really scary for me.

Good luck!
Tim

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #47052

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Emily:

Ups and downs will occur and it doesn't mean that you are in a danger zone. Prednisone responses don't usually just stop in the middle of treatment. If counts are dropping drastically, they probably went up due to something other than Prednisone.

Keep going with Rituxan and be patient. You'll get there.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #47053

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Thanks. I will let you know what happens today.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 1 month ago #47059

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Ok. Good luck and let us know!

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo