I don't know what to think again!

I started 100 mg of revolade in february and it didn't really seem to be working but kept my counts around the 20 mark which my hema and myself thought would be my threshold. Two weeks ago I was very tired and tried to do so so much work in my yard ( I don't know when to stop sometimes !) My plts dropped to 9. I had IVIG on the Friday and my blood test the following Tues the count went to 500. BTW my doc wasn't on duty that day but the other said I still had to take my revolade as usual - so I guess my body had a real double dose. My Blood test this week showed a count of 584 and I was told to cut down to 75mg of revolade. This situation has me worried as my count has only been over 100 once in 37 years of the disorder. This situation worries me - I've learnt to cope with low counts but don't know what to do about these high counts - BTW I feel OK just scared. Sorry this post is jumbled.

This post of mine keeps popping up when I check "new topic" as they are related I have kept my previous post.
Tomorrow (Friday) I have to take another gamma infusion as my plts have dropped to 15, I am now on 100mg of revolade again. However I have been told to keep up with the revolade dose tomorrow - I am afraid I may go up to the 500+ plts again. What I am asking is do you think I should skip my dose of revolade tomorrow or just hope it won't happen again? beacuse quite frankly I am more scared when my plts are super high than when they are low. Thanks everyone and Happy Thanksgiving to US folks.. Christine:cheer:

Christine:
It's hard to say what you should do because I'm not sure if skipping one dose would make much of a difference. Do you know how long your counts have been down? Do you have symptoms?

I did miss the dose last night after the gamma, but I am having severe headaches. My count had been slowly dropping apart from one week when it suddenly went up to 69) from the last gamma infusion. I honestly don't know what to think - I am having a BT next Tues and I hope it's reasonable. Thanks for your input Sandi.

Good luck, Christine. I hope your counts stabilize soon.

Christine, is the reason why you haven't gone to the emergency room is because it isn't severe enough? Have you left a message with your doctor? If it was me and it wasn't severe enough for ER, I'd take one Aspirin and see if the headache didn't all but go away after 2 hours. Reevaluate then.

Thanks Hal, I did take a baby aspirin and the headache went but it's left me feeling very weak.

Ahh, quick relief with a baby aspirin. That sure sounds like a case of 'wacky' platelets, LOL. Mine get pretty wacky starting around 90. Get this odd feeling of a headache coming on, but one never arrives.

About your IVIG treatments while taking Promacta. Seems like there has to be a better way. Don't you have a steroid response? Have you considered a couple of days of Pred to recover? Momto3boys described trying it here as a rescue. What do they call it, 'solumedrol pack' or 'methylprednisolone pack'?

What happened with Nplate before? To much weekly inconvenience? Didn't you do well with it before?

I liked the one week inconvenience of the Nplate and wanted to stay on it but my hemo said it was my counts were were not at a safe level with it (I had been on it for a few years and it wasn't "holding" - counts 25 -30! I was fairly happy with that.) However with the revolade I hate the 4 hrs before and the 4 hours after of fasting every day. My counts are around the 20 mark and the minute they drop below 20 I'm into the hospital for gamma. This last gamma experience was certainly not fun - I should have gone to the hospital but it was the middle of the night and my husband is not the most supportive. Was this serum sickness I often hear spoken about on the site. I shall ask about the rescue pack next time I see the doctor. Thanks for your concern.

Christine wrote: I liked the one week inconvenience of the Nplate and wanted to stay on it but my hemo said it was my counts were were not at a safe level with it (I had been on it for a few years and it wasn't "holding" - counts 25 -30! I was fairly happy with that.) However with the revolade I hate the 4 hrs before and the 4 hours after of fasting every day. My counts are around the 20 mark and the minute they drop below 20 I'm into the hospital for gamma. This last gamma experience was certainly not fun - I should have gone to the hospital but it was the middle of the night and my husband is not the most supportive. Was this serum sickness I often hear spoken about on the site. I shall ask about the rescue pack next time I see the doctor. Thanks for your concern.

Sorry to hear that you keep getting IVIg. My previous hematologist had an arbitrary count number (also 20) below which they would automatically treat me. Luckily I never got there, or I would have fought them on it! Do you have symptoms that are concerning you when your count is 20 versus 25-35? There is basically no difference between a count of 19 and 21, so it doesn't make sense that one of those numbers should trigger another IVIg cycle, and the other one doesn't. Assuming that you don't have bleeding and other bad symptoms, is your hematologist willing to maybe "wait and see" with a count below 20 to see what you do on your own? My current hematologist is awesome (one of the PDSA advisors) and says that watchful waiting can be useful and avoid unnecessary treatment because a lower blip often corrects itself before the next blood draw. (assuming no active bleeding, of course).

Regarding the "fasting," have you tried just eating dinner and then taking your pill at bedtime? 4 hours is of course ideal, but if you aren't taking calcium supplements (and the other items listed that really need the 4 hour window), you could also only wait 2 hours after dinner and be in compliance with the dosing guidelines regarding food timings.

I didn't read the whole thread, so I am not sure what your steroid responsiveness is. Maybe when you have symptoms/drops you could use a short burst of steroids to get your counts out of the extremely low range. It would certainly be less intrusive than IVIg as a rescue treatment, if you respond to steroids. Even if you just get your count to the 20s or 30s with steroids, that may be enough to get by with your normal counts and avoid more intrusive treatments so frequently.

Good luck!

Christine - I don't think it was serum sickness. The main symptoms of serum sickness are severe joint pain, fever, hives, diarrhea, etc. You may have had aseptic meningitis which is more common with IVIG. The main symptom of that is a severe headache and possible vomiting.

Believe me if you have serum sickness you will know it - it is horrible.
medlineplus.gov/ency/article/000820.htm

Thanks everyone for your input. We shall see what tomorrow brings after my BT. I had daaah moment when my son suggested it may have been a virus that hit at the same time as my gamma. We shall see.
Re the fasting, I have my supper -5pm. 9pm have my revolade, if I wake in the night and it's after 1am and I am hungry I have a couple of crackers.

I take my Eltrombopag at 2am then it does't interfere with eating whatsoever apart from when I'm on a night shift then my colleagues just endure me moaning from midnight to 4am about being hungry.

Christine - you probably had aseptic meningitis. That is common with IVIG. I doubt that you had a virus hit at the same time. Usually if you have nasty symptoms after a treatment, it's because of the treatment. If you did have it, you'll need to be careful with future IVIG's. Stay hydrated, pre-medicate and make sure they slow the drip.

I had an ER doctor tell me that serum sickness was a virus too even though I repeatedly told him that I'd been having Rituxan treatments. I bought it the first time it happened and that misdiagnosis led to more Rituxan and another bout of serum sickness. He never bothered to look at the side effects. I've seen others get the virus diagnosis too and it makes me angry. It's just way too coincidental.

Hi Christine, Curious if you tried increasing the dose of Nplate when your counts weren't holding? Often my counts drift down into the 20s-30K range, but this year they have drifted back up if I leave the dose alone. Right now they are 27, 29 34- dose is 5mcg. my hemo is okay with the lower counts. Only if they go below 10 will he want to increase the dose. I don't have active bleeding so I'm lucky there. Even when my counts are very low- below 5K, I don't do IVig. I just take a bit of prednisone- 10mg until come back.
I took Promacta at 3am and it worked for me, though I was so sleepy I would forget if I took it, so put it out on a dish. I got some headache, memory issues with it but it did work to stabilize counts at 50. good luck!

Sorry for not replying earlier - had a bridge drop out along with the 2 supporting teeth - it doesn't rain but pours situation.
I was on 500mcgs of Nplate and the hemo said it wasn't stable that's why I went to revolade. Now on 100 (whatever) of that and the counts are up and down. No symptons either on Nplate or revolade. The being hungry on taking revolade is minor to what is happening now. Over 1 week from the IVIG and still experiencing headaches,not wanting to eat and generally feeling "down" mind you that may be just feeling sorry for myself (definately not "me")- that means I should buck my ideas and get out and have fun.