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So sick of this

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13 years 4 months ago - 13 years 4 months ago #24815 by tgurin12
So sick of this was created by tgurin12
Yesterday I went to get my Nplate and my platelets were 61K. I begged them to let me talk to the doctor. The nurses said No, will give you the normal dose and see you next week.

Right.

Tonight. I am covered with petechaie. I'm going straight into the office tomorrow morning. I'm not spending the day trying to get the doctor on the phone.

I have no one to help me, support me, even the staff won't help me. No one will come with me in the morning. Maybe I'll just bleed to death tonight.
  • 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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13 years 4 months ago - 13 years 4 months ago #24816 by Sandi
Replied by Sandi on topic Re: So sick of this
Okay, no bleeding to death allowed here! Not on a Wednesday.

I know it's frustrating. There can be a lot of ups and downs with N-Plate. It's only been a day since your shot. Counts could be up again by tomorrow.

I'm having a moment too. I have to give myself Methotrexate injections twice a week and I just gave myself one. My stomach is covered in bruises from the needle and I'm running out of space to stick it. I forgot to let the alcohol dry and it burned. I had a momentary pity party by myself.

Let's get over it and hope that tomorrow will be better. Smile, okay?
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13 years 4 months ago #24817 by belydncrck01
Replied by belydncrck01 on topic Re: So sick of this
I am soooo sorry. My old hemo did the same thing. He wouldn't listen and the nurses didn't seem to care. I had to get a different doctor. Sometimes it takes a while to find a doctor that will listen. This is your body, no one knows it better than you. I'm thinking about you. Not all is lost.
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13 years 4 months ago #24821 by Ann
Replied by Ann on topic Re: So sick of this
I'm a bit confused. 61 is a great count for Nplate, just where it should be so what was it that you wanted to see the doctor about? The injection takes about 4 days to work for me so your count will probably come up again in a day or so and if it's below 50 by next week they should higher the dose then.
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13 years 4 months ago #24825 by Dean
Replied by Dean on topic Re: So sick of this
You are NOT going to bleed to Death!!! So, stop thinking that! You have LOTS of support here. We all have ups and downs no matter what the treatment. That is how ITP rolls.
Just try to Relax!!!! The Nurse should have let you talk to the Dr. if that is what you requested!! That is a violation of your right to talk to the Dr. before a medication is given! Why did you want to talk to the Dr?? Didn't the Dr see you for your appointment?
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13 years 4 months ago #24832 by tgurin12
Replied by tgurin12 on topic Re: So sick of this
No, I only see the doctor every 4 weeks so I officially I wouldn't see him for a month. The N-plate hasn't been keeping my platelets up. They have been dropping consistently 130-120-112-61, I wanted to talk to him, because I was afraid they would shoot down. As of this morning, I am covered with petechaie and bruises. Last night when I called the Urgent Line, it was different doctor, This morning (by some miracle) it was my doctor-The nurse never even told him my level. He told me to come in right away so we can see the count and make a decision on what to do. I know when my count gets anywhere below 70 they drop fast to 0K so that's why I wanted to see him.

I'll let you know what he does whenever I can get to a computer.
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13 years 4 months ago #24850 by Dean
Replied by Dean on topic Re: So sick of this
Good Luck. let us know.
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13 years 4 months ago - 13 years 4 months ago #24853 by tgurin12
Replied by tgurin12 on topic Re: So sick of this
He's going with the 4 day Dex since this has worked to get a short term increase in the past. Hope is this will stop them from dropping until my next N-Plate on Tuesday. Oh, sorry, they were 6K.

The nurses said "none of us expected this so we didn't want to bother the doctor." I responded, " I expected this."

Of course, any blood, and to the hospital I go. Thanks for everyone's kind words.
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13 years 4 months ago #24869 by Ann
Replied by Ann on topic Re: So sick of this
What dose of Nplate are you on?

I had that up and down on Nplate at first and saw a doctor when I had a count of 1 who insisted on putting me on steroids but I found that just confused things as I'd then go high and wouldn't know what dose of Nplate to use. So I asked to see my proper consultant and we decided not to use steroids any more and just adjust the Nplate dose each time. Although I bled a bit with the low counts I found it much easier to cope with. After some more ups and downs I eventually got stable on the Nplate. I was lucky that Nplate did work for me, if it doesn't work at all then that approach wouldn't have worked either.
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13 years 4 months ago #24873 by tgurin12
Replied by tgurin12 on topic Re: So sick of this
I have been on the lowest dose (sorry I don't what that is right now, haven't slept all night from the steroids). Since my first dose, they have been above 50 all the time so they didn't expect a problem, until the last four weeks, (I've been on for almost a year) everytime I fell, I went back up the next week. Since, I never fell below 50 until now, the guidelines didn't call for a change of dose. Since I just got a shot two days ago, he couldn't give me another shot and he was worried about lack of proper care over the holiday. The Dex isn't working at all yet. Bloody nose, more petechaie. Just hoping to stay o.k. over the weekend, but for the platelets will stay under 50K so they can up my dose on Tuesday.
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13 years 4 months ago #24874 by Ann
Replied by Ann on topic Re: So sick of this
I've had blips like that too. A couple of months ago I was down to a count of 8 for no good reason. I upped the dose and it came back up and so I lowered the dose again and all seems fine again. So here's hoping yours is just a blip too.

Good luck with the dex and enjoy the holiday. I hope you are having the glorious sunshine that we are having over here in the UK.
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13 years 4 months ago #24877 by jpb
Replied by jpb on topic Re: So sick of this
I think you have a long way to go before writing off nplate if you are on the lowest dose and have been for a year that's pretty good ,you have a long way to go before you get to the highest dose and hopefully you will never have to , nplate worked for me for almost a year so I can appreciate your worry because I thought it was the answer for me because it seems to work well long term for most and when you get signs of bleeding you panic my count is 0 and I worry all the time just now but I'm sure they'll sort you out I'd be more persistent when wanting the consultant don't leave if you want to see one
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13 years 4 months ago #24895 by Gort
Replied by Gort on topic Re: So sick of this
I won't tell you to not be frustrated, because sometimes counts are very frustrating.

Write a note that says "with a count of 50 I will live forever" and hang it on your bathroom mirror. Then go have a really nice dinner with friends.
--Steve
Living with ITP since 1967.
"Abandon negative action; Create perfect virtue; Subdue your own mind. This is the teaching of the Buddha."
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13 years 4 months ago #24946 by tgurin12
Replied by tgurin12 on topic Re: So sick of this
dex did nothing. Down to 2K. They increased my NPlate. If I'm not over 10K on Thursday, than two days of IVIG. Never had IVIG so really worried. :(
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13 years 4 months ago - 13 years 4 months ago #24965 by Don
Replied by Don on topic Re: So sick of this
Dex did nothing for me as well, but dont give up hope.

Dont panic over the IVIG, the anticipation of it was far worse for me than the actual event. Thats easy for me to say now, as Ive been through it, but Im being truthful when I say it wasnt nearly as bad as I had imagined it would be.
It wasnt a pleasant experience, but it wasnt as bad as I expected.
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13 years 4 months ago #24982 by tgurin12
Replied by tgurin12 on topic Re: So sick of this
Back to the hospital today, as bleeding from eyes and mouth. Platelet transfusion to get me above 0K. IVIG tomorrow.
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13 years 4 months ago #24986 by Ann
Replied by Ann on topic Re: So sick of this
I was going to say that Nplate takes 4 or 5 days to work so you wouldn't expect a response quickly. If you need something as an emergency rescue then Nplate isn't it.
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13 years 4 months ago #24989 by Don
Replied by Don on topic Re: So sick of this

tgurin12 wrote: Back to the hospital today, as bleeding from eyes and mouth. Platelet transfusion to get me above 0K. IVIG tomorrow.


Best of luck to you tgurin12. Please let us know how you make out.
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