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TOPIC: Between a Rock and Hard Place

Between a Rock and Hard Place 2 years 6 months ago #55615

  • Sandy Too
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Good day everyone, wishing you all the best for a good one.
I am new here. I am new to ITP. I am not new to auto-immune soup.
My body like many of yours as I read, goes to the beat of it's own drum.
It has since I was 18. I am now 54.
The way I have coped is with a very special tool box. The gifts of grace and love of life and determination my Mother gave me, and the calm, gentle and intelligent thoughtfulness and acceptance from my Father, and his love of nature. A walk in the woods is a tonic.
I have learned despite the strange ways and things my body does to me, I am still so grateful and in awe of it everyday. Even under so much misery, pain and hardship it still allows me to
be happy and do experience the most lovely and wonderful things.
It is getting harder though. I am having trouble using my tools now.
I am not getting any clear signals, high dose prednisone doe not help there I am sure.
So now "I" feel terribly insubordinate to my body for failing "it"!

Yesterday I saw my Hemo for the third time. I read from her intelligence and experience that she could not possible have all the answers. But she gave me her well educated opinion and experiences at a top notch Cancer Treatment Center.
That is where the rock and the hard place come in.
My options are to remove my spleen. It might work 50-60% are the odds there.
The other Rituximab. A horrible chemical concoction that could have up to 75% chance.
What I was thinking of, just staying on the prednisone, the devil I know.
It turns out that it for me is not an option to this young brainyack.
Doctors tend to give advice, on this point it was not advice it was an order.
I have taken pred since I was 28 for Adddison's. My bones are at high risk now at this point. She says diabetes, cateracts, liver, GI problems, and all kinds of other things are far to high a risk at this point. So how can I disrespect her intelligence, experience and her knowledge of
my strange soup?

So here I sit. Thinking out loud... with you...who know.
The answer it seems is that there is no acceptable answer.
And if I use the tool box I have always used, I would choose that there is no answer
and so to do nothing. Sounds logical.
I ask you how do we make an informed decision when there is no correct answer?

The spleen is part of our garbage can. later I might need my garbage can for other ridiculous issues like cancer and chemo. I love life and I want the best chance at that time if it comes too. I don't want to not be able to take what ever I have to by making a bad decision now.
terrible when removing a spleen is the most benign option!
The drug, well it's poison. I can't even do Tylenol well some days!
Plus I have an event on IVIG January 2014 that almost took my life. They still don't know what happened really. I just know that I ended up on the floor of the hospital with doctors and nurses running and my husband by my gurney crying and thinking no not this way....and me unable to talk for pain, or move as I was a stiff as a board everywhere.
Funny I had never questioned any of my doctors until then. I read about the IVIG. I know my strange little body. I felt uneasy. So I called the day before and told my immunologist at the time. She again re-assured me. I got there talked to the nursing staff about my fears, they looked at me like I was a hypo...then 20 minutes in I was in the fight for my life???
So even just administering the Rituximab....well you can imagine what I am thinking..
Sorry this is to so long. I just don't have an answer. thanks, Sandy Too

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Between a Rock and Hard Place 2 years 6 months ago #55616

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Sandy:

There are no easy answers and it's even harder when Lupus is involved. I agree with you about the spleen. It is very important, especially when you have Lupus. It is the garbage can and filters out a lot of dead cells and bacteria. People with Lupus already have problems clearing dead cells and that causes inflammation, so the spleen is extra important. It doesn't always work for ITP and you might end up back in the same position. There is also research that states that those who are asplenic have a greater risk for blood clots, even if counts are low.

Your doctor did not present you with all of the options. You could also consider Imuran, cellCept, Promacta or N-Plate. None of them are ideal solutions but I would consider those before splenectomy without a doubt.

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Between a Rock and Hard Place 2 years 6 months ago #55617

  • eklein
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I had a total of six Rituxan infusions. Four a week apart, then two a year later, a week apart. The sixth one resulted in an allergic reaction, severe hives. The hives were gone in a month. I've been in remission since 2009, shortly after the last Rituxan. I also have SLE.

So, obviously, your mileage may vary but it is possible to have a very good result from Rituxan.

And as Sandi points out, there are other options that your doctor has not presented. And that it's a good idea probably to hang on to your spleen.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Between a Rock and Hard Place 2 years 6 months ago #55618

  • mrsb04
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What is your platelet count ?

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Between a Rock and Hard Place 2 years 6 months ago #55619

  • Sandy Too
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The first time I learned of a problem, April 4 this spring (my birthday :( ) my count was 32, then a week later it went to 13. I went on 80 mg pred. really hard to do with Addison's as mineral balance is key.
It then went, over the month or so to 258, which stayed to when I saw my hemo last Aug 5th.
She said I could now do my blood work every month as apposed to every week.
It was the third week of August when I got my first very large bruise. I though that it was something I did as I was finally feeling a bit better and getting out and doing again. Then the next week my legs and arms and chest and tummy turned purple. I had my blood work done and the next day learned it was 13 again.
I was asked to try 50 mg pred this time as there was no way with the mineral balance issues I could do 80 again.
The bruises have all but disappeared, but I do get new ones still of the little guys about the size of a pencil around but very dark. Just bruising so far thankfully.
I had my blood redone for the week at the hospital so I won't know the count now until Monday.
Although I am sure it will be at least the same, maybe better.
My taper is only 5 mg a week and will end at 10mg a day, which is for both the Addison's replacement and the ITP? I take 7.5mg normally for the Addison's replacement.
Thanks so much for the support, and experience. I am thinking too, that taking out something so important to keep my body as healthy as possible is pretty darn important. Plus with Addison's I have no fight or flight of my own so I catch everything going anyway and then struggle to get rid of it.
I have learned allot in a short time, and at this point I really just wanted to say no, not again and go home. So now I will take what I have learned about these other options and learn some more...and to try get my head around the fact that it is happening in the first place! :dry: thanks, Sandy Too

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Between a Rock and Hard Place 2 years 6 months ago #55620

  • Hal9000
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Sandy Too, yes a lot of folks don't realize happiness comes from within. Something one needs to learn while growing up.

I have to wonder if your hematologist, like mine, normally treats cancer patients. Being very proactive in treating seems normal for them 'cause not treating is likely fatal with cancer. ITP is not so life threatening.

Have you seen this video? It's about Promacta and NPlate, which they call 'third generation' drugs. I stole the link from another post here on PDSA.
fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

You might try challenging your brainiac hemo without sounding insulting. Something like, 'your've had previous patients with a long pednisone history going to Rituximab successfully?'. Or, '... similar patients taking Promacta / NPlate that didn't do well'. That is, have you got a diagnoses but no explanation to substantiate it?

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Between a Rock and Hard Place 2 years 6 months ago #55629

  • Sandy Too
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thanks everyone.
Yes, I did see the video, and I have also read "Blood" by Provan and panel. If nothing else is clear these are. That until now everything has been much like a Band-Aid. Some Band-Aids drastic.
Also that there are so many variables that used to be okay to ignore. Now not so much.

I did learn for myself that with regard to IgA deficiency IVIG is contraindicated because of aniphalaxis. I have IgA deficiency, IgG issues as well as other immunoglobulin oddities.
Which perhaps is the reason I had such a bad reaction....even though I researched it and asked all the right people all the right questions. Why did they give me IVIG? :huh:

I learned I have "multiple disorders".
I learned that I have low platelets but maybe it's not ITP.
I learned it is a diagnosis of exclusion. I need to find out what has been tested.
I learned that with ITP, it is an individualized treatment.
I learned that even brainiacs are forced to fall in line with regard to finances and lawsuits.
I learned that hospitals like treatment standards.

I heard Provan speak of SLE, and read of it in "Blood", but am disappointed that the relationship
between ITP and SLE was not elaborated on more.
So IS there something I can read somewhere about ITP and SLE?

I learned allot, from one place, and am thankful to all for it.
I am not afraid of ITP.
I am afraid of pigeon holes, shots in the dark and old treatment standards.
Nobody is getting my spleen.
I am allowing no-one to put anything in my body without appropriate testing and answers.

All that and I still have so much far to go. thanks, Sandy Too

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Between a Rock and Hard Place 2 years 6 months ago #55631

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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There isn't much info out there about ITP and SLE other than ITP is a symptom of Lupus. ITP is listed as one of the criteria for a Lupus diagnosis. The main correlation are the antibodies since Lupus causes various antibody production, but ITP can also appear alone.

Even though ITP is a diagnosis of exclusion, they usually don't do much testing. Generally, if other labs are okay (CBC, liver) and the patient doesn't have any symptoms like night sweats, fevers, weight loss, etc., they go for the ITP diagnosis. Sometimes thyroid disorders can be a factor, but they don't always test for that. It's more difficult when Lupus is involved because weight loss and fever, etc are common with that. I know my doctors chalk every symptom I have up to Lupus without looking farther.

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Between a Rock and Hard Place 2 years 6 months ago #55634

  • Sandy Too
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Yes it's so true about not even considering other possibilities when things go sideways.
I find that in my small home town with our ER. It is just so much easier to blame everything on Lupus....then I end up with infections that get worse increasingly because they didn't bother to treat a simple bacterial/virus problem properly at the onset. :angry:

Allot will depend on a very good conversation with my rheumy on Oct 19th....I am wondering if she and my hemo both know that something in me needs shut off at the main breaker...LOL!
It has been a struggle since August 2015 and now this.
I have to admit stopping this ride to get off for a while interests me.
But then the drug therapy monograph and info sheet she gave me....oh boy I can just see what kind
of new ride that will be. Again in my home town ER, 2 hours away from my specialists, I get nothing and that worries me. I will speak to that with them as well.

Thanks Sandy and all, so much again. Sandy Too.

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