Talk about perfect timing!

My appointment with my hematologist is Thursday last week I started seeing spots (petechiea) and bruising. I'm 99% sure it is due to stress as I have been under a bit this past month.


So today I went for my blood work and have decided I will wait till Thursday to see what the count is. In some ways I was hoping that with the issues causing the stress slowly resolving so may my symptoms.


lol can you say delusional?? yes I am!

I totally get it. Sometimes it's better not to know, because if you know you might have to at least think about doing something about it.

I did the same thing too. I blew off counts because I didn't want to know. By not knowing, I could pretend that the count was the same as it was the last time I checked.

Good luck!

I agree. Sometimes when you find out, it causes more stress and further reduces your platelets! When you've been dealing with it for a long time, you can tell when it is at the danger level.

So waited till today to find out. Waited 1hr to see the doctor for her to say the magic number! 18 So than we had to discuss what we are going to do. So apparently I am driving the 35-45 minute drive back tomorrow to get treatment because of my schedule for the next 2 weeks is hectic and after that she's on vacation for 2-3 weeks! (or should I say my imaginary driver is driving me too and from)


UGH have I said how much I hate doctors and hospitals not what I wanted to do on my only 2 days off this week! Oh well guess I should be grateful I won't have to miss any work!

Winnifred, 18 still isn't too bad--as long as it doesn't keep going lower. If you could relieve some stress, get some rest, the numbers might just stop going down. That's happened to me before. What kind of treatment is your doctor suggesting?

Good luck, Julia! Win-Rho?

DeeDee I usually do not stop once I start on my downward slope I keep going till I hit zero.


Sandi yes winrho again she offer prednisone I refused she offered splenectomy again I refused. She suggested hives from prednisone isn't so bad compared to bleeding to death!

After 18 years being told I'm going to bleed to death does not scare me! Part of me wants to just say i'm done fighting and let nature take it's course! spent my night trying to figure out what is worse bleeding to death or being injected with freeze dried bits of people than spending the night with the shakes and peeing blood (sorry graphic I know) pumping myself full of drugs to counter act how crappy I am going to feel.

Do you get the shakes and pee blood from Winrho? I am only at this for a little more than a month and wrestle every night with, is bleeding to death so bad 'cause the attempts not to sure stink.

Winnifred, I would do exactly like you are doing--that's just me. Last time I relapsed, they told me the same thing--that I would die; wouldn't make it through the night, etc.! I allowed certain medications: IVIG and the Decadron pulses--but nothing else. I wouldn't even allow them to give me any more platelet transfusions (as I now they don't work and they are not good for you). I had some of the doctor's really mad at me until I got Dr. Park. He really seemed to understand me and he went along with my own method.

My platelets stayed at 4 for 1 1/2 weeks (sometimes they went to "0" too). I just stayed calm and started to watch what I was eating; also stopped taking Sinequan (one of the meds on PDSA site). The doctors were freaking out more than I was. After my last 24-hour IVIG drip (and 2 1/2 weeks later), my platelets started going back up. I don't think I would allow all the Decadron pulses they gave me if it happens again (3 would be the max.).

Good luck to you on your decisions. You are a nurse and probably understand ITP better than your doctor!

Emily,
I just wanted to mention to you that very few people have brain bleeds with low platelets (under 10). Some people have been living with low platelets of only 5 for years; others live with their platelets in the 10-20 range. They work and live a normal life--you just need to be careful about bumping your head. I really think that the doctors that give their patients one medication after another in a short period of time are doing more harm then good. This is just my personal opinion.

Dee Dee

Julia - if you are having those symptoms, you probably shouldn't have Win-Rho. Do they monitor you afterwards? I was under the impression that red urine isn't blood; it's caused by red cells being destroyed that show up in the urine.


If you experience any of the following symptoms after receiving WinRho SDF, you
should seek medical attention immediately

•shaking chills, fever or back pain
•discolored or darkened urine
•swelling
•shortness of breath
•decreased urine production

www.fda.gov/downloads/BiologicsBloodVaccines/BloodBloodProducts/ApprovedProducts/LicensedProductsBLAs/FractionatedPlasmaProducts/UCM198671.pdf

I read that list when I had WinRho and then when I said to the haema that I had strange coloured urine she said it's normal.

Today they gave me 50mg IV Benadryl 1000mg oral Tylenol. 3,000mcg (3boxes) Rhogam. When the IV bag was empty they flushed the line with normal saline than they took my vitals. Discontinued my IV and I left.

No back pain this time. Episodes of shivering feeling cold, episodes of feeling hot (could of been hot flashes from menopause ) at this point scan't about of hematuria noted in urine. ( body kills of red blood cells) it never lasts.

Sandi I was told hematuria is a side effect if it happens briefly not a concern but if it continues than there is an issue.

Deedee I am a Nurse they make the worst patients. I do not refuse to be treated I just pick the treatment that cause me the least amount of side effects.

Yes, I know that red urine is normal, but your description of the shakes and peeing blood all night seemed to be more than the norm. You scared me! :ohmy:

Julia, does your hemoglobin start out at a nice high level? If so, and it doesn't drop too far, then the WinRho (as you know) is doing just what it is supposed to. My hemoglobin always started around 14, so if it dropped 1.5 or 2 it was still at a nice high level.

3 Boxes...is that a high dose? I can't remember how to calculate it anymore. I know I got 75mcg/kg for a while, and slowly tapered to about 30mcg/kg. Maybe if you have shakes and chills you could do a lower dose?

Right after I was diagnosed, I had Win-Rho five weeks in a row. My counts never went up, and if I'd known better I would have never had more than one treatment. If it didn't work the first time, it surely wasn't going to work the other four. But anyway, even after 5 weekly injections, my red count only went slightly below normal. It went back up by itself after a few weeks. Severe hemolysis is rare, and that is what you have to watch out for.

Sandi sorry didn't mean to scare you! We know winrho/ rhogam works quickly for me that is why I use it.

tamar I have never really had an issue with low hemoglobin except when I was younger and had heavy periods. When my labs were taken right after Winrho than there would be a noted dip but next lab would be normal.

The side effects this time were minimal I had my daughter come and stay the night. She laughed at me because apparently at one point I asked her to turn the volume down on the heater because I was cold. lol I slept pretty much all of Friday night and most of today. I am sporting a very large bruise where they put the IV.



PS: hey Sandi did I tell you the fantastic news! My daughter and her boyfriend have announced they have decided to get married. They are looking at August 1, 2016. So now my goal is to save as much money as possible so I can give her a wonderful wedding day! she wants an outdoor wedding with a reception that does not involve an 8 course meal. That said she has a degree in celtic studies so she's looking at doing some Irish traditions like dancing. Which means I may have to take some dance lessons UGH!

Congratulations, Julia! That's great news! You'll have to post pictures of the wedding.