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TOPIC: Update

Update 3 years 1 month ago #54271

  • amberyard
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It's been awhile since my last post, sorry it's be rough.

89k as of Thursday, photo of me waitingfor my injection and de accessed from port.



I've moved closer to work, on the north end of Lake lainer (rent from a coworker, her mom went into a home).

Anyways as of now I'm on 2.5mg pred (should be off in 1-2 weeks).
N-plate (700mcg) every Thursday and we always plan ivig's (just incase I get in single digits).

Pred withdrawals are horrible!!! It's been proven to be worse than heron withdrawals. I'm on Zofran, Tylenol, Tramadol, Xanax around the clock until it's fully out of my system. I was losing my hair, eye site, hearing and had to have a bone density scan after hair line fracturing both ankles. Yep I have a four prong cane now, but that was back when I was moving (September ish).
diagnosed 4/12
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Update 3 years 1 month ago #54272

  • amberyard
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Not sure how I ended up sideways. .. :laugh: :laugh:
diagnosed 4/12

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Update 3 years 1 month ago #54274

  • Rob16
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Amber! I am so glad you checked in, and even have a good platelet count with Nplate.

I am sorry you are having such a hard time tapering off of prednisone. What you are suffering from now, at 2.5 mg/day, is not just steroid withdrawal. It is actually adrenal insufficiency, and can be dangerous if you push it. Just take it extremely slowly, and in case of sickness or trauma you will need to take additional prednisone to makeup for your lack of cortisol. Unfortunately, sometimes the adrenal insufficiency becomes permanent, so some people are unable to get off of prednisone completely. Sandi is one of those people. Low-dose prednisone is only the amount equivalent to the cortisol your body would normally produce, so the side effects should be minimal, not like at higher doses. As I recall, you were taking pretty high doses for a long time, right?

I posted an excellent article recently on adrenal insufficiency during steroid withdrawal. You can find it here:
pdsa.org/forum-sp-534/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html
It is worth reading carefully!

Who is that new hematologist you found? You may recall that Ellen and I are also in the Atlanta area. Her son is in Flowery Branch, which I guess is not too far from you.

Take care of yourself. You are a tough one to have made it this far! I must admit I was worried when I didn't hear from you for so long, so please keep in touch.

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Update 3 years 1 month ago #54277

  • amberyard
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Work and treatments is all I do these days, oh and sleep. Lol

I go to Atlanta Cancer Care and see Dr.May, which she is only a couple of years older than I am. We get along great aND always have a good laugh.

I will read the article for sure, thanks I'll be around I'm in North forsyth now, closer to work.
diagnosed 4/12

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Update 3 years 3 weeks ago #54527

  • amberyard
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Ivig's daily since Thursday 5/19, 12k, 2k platelets given, (no cbc on Saturday) 10k and recheck Monday. Just glad I still have vacation time at work. Just went all the pains of tapering down started to subside, still on 2.5mg of pred.
diagnosed 4/12

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Update 3 years 3 weeks ago #54528

  • Rob16
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You do a great job of taking this all in stride, Amber.

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Update 3 years 3 weeks ago #54530

  • amberyard
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I feel bad for my husband but I know he understands. Emotionally it's hard I walk around with tissue in my pockets. One day at a time
diagnosed 4/12

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Update 2 years 11 months ago #54848

  • amberyard
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2k
diagnosed 4/12

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Update 2 years 11 months ago #54849

  • amberyard
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Photo update
diagnosed 4/12
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Update 2 years 11 months ago #54850

  • Rob16
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Amber, I'm really saddened to see you back in the ER again!

Are there really no options you haven't tried? You didn't respond last year to the comment I made to you regarding Dapsone. It is better than 50% effective, even when nothing else seems to work. Did you have any thoughts on the subject? Did we scare you away with the long debate some of us had? If nothing else, you might look at the link MrsB provided at the end of that thread:
ijcci.info/pdf/apr14/Article2.pdf Dapsone; An Efficient and safe Second–line Drug in ITP

Thanks for the update.
-Rob

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Update 2 years 9 months ago #55569

  • amberyard
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Last week 3k and 48k, I won't use dapsone duty to it being a male hormone. But this is where I'm at now, CellCept 500mg am then 1000mg pm, n-plate weekly. I got a bill from my hospital that is associated with my doctor e $100,000 ish and most of the bill was for pharmaceutical use. I called the number and it says I still owe $5,040ish? The last time I went to the infusion center over the weekend it cost me $1000, which I had to put on a credit card. I can no longer go to the er or infusion due to funds. The medications I use is covered by the pharmaceutical companies. I'm stuck between a rock and a hard spot, if I can't find other charity programs to help I may have to stop treatments. Stress is what got me into this spot in the first place.
diagnosed 4/12

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Update 2 years 9 months ago #55570

  • amberyard
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Oh was in ER Rob I was in treatment (weekly)
diagnosed 4/12

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Update 2 years 9 months ago #55571

  • Rob16
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Hi Amber,

I think you are confusing Dapsone with danazol, which is a different treatment and is a synthetic steroid and is masculinizing.

Dapsone is not a male hormone. It is primarily an antibiotic. However, you cannot take it if you are allergic to sulfa drugs.
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Update 2 years 6 months ago #56744

  • amberyard
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CellCept 1000mg twice daily
N-plate 700mcg weekly
Iv steroids every other week
Ivig's the every other week

The weeks I don't do ivig's I'll do iv steroids. Last week was everything and hoping this week just iv steroids.
diagnosed 4/12
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Update 2 years 6 months ago #56747

  • Rob16
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Thanks for checking in, Amber.

How are your platelet counts doing on this treatment combination?

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Update 2 years 6 months ago #56755

  • mrsb04
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Goodness Amber that's quite a combination.

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Update 2 years 6 months ago #56774

  • amberyard
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Last three weeks, 30k, 44k and last week 38k. I see my PA tomorrow to plan for the holiday weekend, Thursday (thanksgiving) 7:30am at infusion center for my n-plate
diagnosed 4/12

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Update 2 years 6 months ago #56785

  • Hal9000
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Curious. Does Cellcept help with counts a lot, or, just a little? Works good whether one has a spleen or not?

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Update 2 years 6 months ago #56786

  • rjsmyth
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Quite a scary combination of treatments you are having - no wonder you are feeling awful!

Seems like there is no direction as to what you are being given. How could anyone tell which treatment was actually doing anything?

Combination therapy is common here in the UK - but four different things at once is in another league.

Can I ask what symptoms you get with low counts?

Even the most refractory of ITP sufferers get an increase in counts with IVIG (albeit briefly).

I am baffled at why you are being subjected to such a horrible regime.

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Update 2 years 6 months ago #56793

  • Rob16
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rj,

Amber is on an extreme combination of drugs because her ITP is extremely resistant to treatment (refractory). No one treatment alone has been able to sustain safe levels of platelets. She is pretty much maxed-out on Nplate and on mycophenolate, and still the other treatments are needed in addition. I am guessing that IV steroids are limited to bi-weekly in order to minimize steroid dependence, and still the alternate week IVIG is needed to keep her counts safe.

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Update 2 years 6 months ago #56796

  • rjsmyth
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Rob16 wrote: rj,

Amber is on an extreme combination of drugs because her ITP is extremely resistant to treatment (refractory). No one treatment alone has been able to sustain safe levels of platelets. She is pretty much maxed-out on Nplate and on mycophenolate, and still the other treatments are needed in addition. I am guessing that IV steroids are limited to bi-weekly in order to minimize steroid dependence, and still the alternate week IVIG is needed to keep her counts safe.


I am just concerned for Amber because she is taking so much medication with a plethora of potential side effects. That is why I asked if she bleeds at very low counts. Does Amber need to get to 30,40 or 50 to be safe?

Like Amber I am refractory to all treatments (except IVIG) and despite large doses (1 litre) of IVIG (Privigen) my count seldom goes into double figures but I don't bleed with the IVIG - without it I am really in trouble.

If you are refractory to treatment that normally means nothing works with the possible exception of the "rescue remedies" - normally IVIG and Platelet Transfusions - generally considered to be impractical long term but the only thing that works for me.

Trust me - my sympathy is with Amber - been there - done that - and it didn't work!

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Update 2 years 6 months ago #56804

  • mrsb04
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I've been on the following one after the other as each one failed
1:-Prednisolone from day 1 in various doses from 45mg down to 3mg currently on 15mg & tapering yet again.
2:-Added in Azathioprine increasing to maximum dose for my weight
3:- Mycophenolate ditto
4:- Fostamatinib
5:- Romiplostim

Have now got to the stage where I am sick of taking drugs to which I become refractory.

Count was 13 on Friday on 16mg of Pred. I am desperate to get off prednisone or at least done to 5mg as have steroid induced osteoporosis. I'm on drugs for that for life which will protect me below 7.5mg of Pred.

Following ananda's link to the betrayal series pdsa.org/forum-sp-534/6-general-itp-discussion/29444-new-series-tonight.html I'm now trying the 'leaky gut' syndrome diet to see if that has any effect .
I'm doing this with my Haemo consultant's blessing whilst tapering pred very slowly.
I've never had any bleeding even with a count of 6..however she has told me if it goes to 5 then I'm having IVIg

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Update 2 years 6 months ago #56819

  • Hal9000
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Leaky gut syndrome? Have you ever been tested for h-Pylori antibody?

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Update 2 years 6 months ago #56820

  • rjsmyth
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Hal9000 wrote: Leaky gut syndrome? Have you ever been tested for h-Pylori antibody?


I have - the result was negative - worth having done though.

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Update 2 years 5 months ago #57329

  • amberyard
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I'm at the rescue remedies at this point. It's week to week and day to day.
diagnosed 4/12

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Update 2 years 5 months ago #57330

  • amberyard
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Hal9000 wrote: Curious. Does Cellcept help with counts a lot, or, just a little? Works good whether one has a spleen or not?



Negative here
diagnosed 4/12

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Update 2 years 5 months ago #57331

  • amberyard
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Rob16 wrote: rj,

Amber is on an extreme combination of drugs because her ITP is extremely resistant to treatment (refractory). No one treatment alone has been able to sustain safe levels of platelets. She is pretty much maxed-out on Nplate and on mycophenolate, and still the other treatments are needed in addition. I am guessing that IV steroids are limited to bi-weekly in order to minimize steroid dependence, and still the alternate week IVIG is needed to keep her counts safe.


Rob

I went from 99k to 2k in a week then three rounds of ivig's topped out at 173k (2k, 13k, 5k, 58k then finally 173k) last week. This time of year is really hard on me and my stress level is through the roof...

Amber breathe
diagnosed 4/12

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Update 2 years 5 months ago #57332

  • amberyard
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rjsmyth wrote: Quite a scary combination of treatments you are having - no wonder you are feeling awful!

Seems like there is no direction as to what you are being given. How could anyone tell which treatment was actually doing anything?

Combination therapy is common here in the UK - but four different things at once is in another league.

Can I ask what symptoms you get with low counts?

Even the most refractory of ITP sufferers get an increase in counts with IVIG (albeit briefly).

I am baffled at why you are being subjected to such a horrible regime.


At this point I'm a guinea no on knows what my body is going to do week to week. I've been tested for everything under the sun.

I don't have insurance and I know that plays a part in my treatments. I refuse platelets unless I'm bleeding and they don't last more than 12 hours in my body when they do give them to me.
diagnosed 4/12

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Update 2 years 5 months ago #57333

  • mrsb04
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Sorry Hal 9000 only just noticed your question. Yes i was tested for H Pylori twice, both negative

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Update 2 years 5 months ago #57338

  • Hal9000
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Good going mrsb. A lot of these web pages talk about leaky gut syndrome but somehow fail to mention that h-Pylori does cause leaky gut.

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