Promacta - side effects

D.Mann perhaps my memory is wrong but seems like you mentioned to me that you took Promacta right up to the day before surgery. Yes?

Yes, my count was declining rapidly and the week before surgery if I remember right, I was below 75. Day of surgery I was 45. Started Promacta back up 2 days after surgery.

CindyAnn wrote: Hal - my headache is constant and just annoying enough to keep taking the aleve - maybe when I get to lower the dose it will go away.

How do I spell relief? Well it isn't R-o-l-a-i-d-s. I spell relief as '12.5 mg Promacta'. On this dose (25/skip) for a week. No more funny headache feelings for me. Count test not for several weeks from now though.

Cindy, have to wonder if it is the Promacta drug itself, rather than funny platelet business, that is giving you a headache. Hope you can lower the dose and still maintain counts. Is Nplate an option if not?

Your last 169 count on 25 mg Promacta and no steroids is really amazing!

Well - the 11/11/17 draw was 249K - way to high for my liking, but my Hemo is out until next week so I will have to stay at the 25mg Promacta till I hear from her
I am still having a constant headache that won’t go away (I have tried Aleve, Excedrin and Tylenol). I also am still having 3-4 loose bowel movements a day. The sweating has calmed down.
I am hoping she will reduce the Promacta to 12.5mg daily.

waterbug wrote: hi there. I hope you are in recovery!!!!
I started in July 2017 with count at 16. I was in the hospital and had transfusions, and other stuff.
Then they went up to 330. I could not take prednisone, it made me crazy!!!
I have been on promacta for almost 2 mths and my count is now 73!! I go back to dr Nov. 6.
He said maybe we could do the medication every other day. Do not know what you have been on, but this med makes my body ache. Kinda sleepy during the day, and having a difficult time sleeping at night. Most for sure I wake up early due to being in pain. Once I am up and around the pain goes away, somewhat. I have a bad back which catches once in while. I also had some dental work done, and one of the reactions from the medicine is "tooth aches"? My White blood count has gone done to 3.3. which dr. does not seem to be concerned with, so ?
I am hoping to be clear of this stuff as well and get off the meds all together!!!!
keep me posted on your condition!

Waterbug - I feel the same way, and I never take naps during the day but in the last week I have had to take one almost everyday!

It's really unfair that there isn't a Hemo who can step in or your Hemo can't be contacted. You should get attention now about your dose and not have to wait until next week.

I wouldn't hang around waiting. That count is too high. I'd drop my dose and get a re-test in 2 weeks.

Just got an e-mail from my Hemo - drop Promacta to 12.5mg and take baby aspirin daily (I am glad she checks her e-mail even when out of office!!!) now just finding out if I end up 25mg every other day or if she has ordered a new prescription of 12.5's - I hope she orders the 12.5mg just so I can stay on the same routine - but if not I will make it work.

I'd go 25mg alt days for now, saves you having to pay for 12.5 mg tabs until you need to. I admit its a bit of pain doing alt days dosing.
I do 25/50 & have a piece of paper by the tablet boxes noting down each day what I've taken.
My Haemo is lovely, she texts me my results sometimes quite late at night. Comforting to know they care.

That's great, CindyAnn! I'm glad she checked her e-mail too. That count needed to be dealt with. It could have been even higher by next week.

249? Good grief Cindy Ann.

Ok, you stopped taking pred and still your count climbed. Not normal. You waited awhile for the count to drop and still the count climbed. Not normal. Now to try 12.5 mg. I dunno, but I wouldn't be to sure that is going to stop the rise. LOL, you type/row 1's are a weird lot.

Nice that you tried Excedrin. With no relief from the Aspirin in it, sounds definite that your headache is from the drug itself. Which leads me to ask. Is your doc checking your liver ALT/AST levels?

I can firmly attest that baby Aspirin does a great job at taming those wacky platelets. Hope the 12.5 mg puts an end to the headaches, pronto.

Hal - I get a liver function test with a CBC every time - with the count so high she has me back to weekly checks. The liver function test have all been normal - I am keeping a chart of that now with everything else.

10/18/17 draw - platelet count 208k @ 25mg every other day.
My body did not like the every other day - on day of taking Promacta - 5-6 loose bowel movements / on day of Not taking Promacta - could not have a bowel movement :dry: the headache was gone on the day without Promacta

I have to go back to 25mg Promacta daily because of a scheduled back surgery - but 48 hours after the surgery I get to drop to 12.5mg Promacta daily. The surgery was postponed because of taking the aspirin - so this is a very delicate balancing act.

That seems rather alarming, putting you back on a higher dose when your count is safe for surgery.

One week on 25/split. Counts still holding. NO CRASHES !
You've got to feel good about a 208. Even though you've got this good day / bad day thing going on, LOL.
Mrsb makes a point. Going back to straight 25 seems a little odd with the split apparently working. Are you having surgery Monday or something? Good luck with that.

Surgery is scheduled for 10/30/17 and I can't wait for it to be done!

My Hemo's thoughts on staying at the higher dose is that because it is a Lumbar Epidural - any bleeding into the spinal cord can cause paralysis - the surgeon and my Hemo would rather be on the safe side with more "stickier platelets" I personally think if I kept it to 12.5mg Promacta daily my numbers would be fine (but what do I know :whistle: )
I will be reducing the Promacta to 12.5mg 48 hours after surgery - and hopefully my counts will go down below 100k.
I don't like being this high with Promacta - it would be different if it were on my own without treatment.

I'm not a doctor, but epidurals can be done as long as counts are over 100. Yours are fine as is. It's odd that they would want sticky platelets for a surgery. Will you be mobile soon after?

I'm with Sandi. That's an awfully high number that they want for the surgery. I've heard of some things where 50 is considered the minimum, and some things where 100 is the minimum, but never let's jack it way up above 200 on a medication with a clot risk. Yikes.
Luckily your procedure is coming up soon, so if that goes well you can work with them to get back down in safer count ranges for Promacta. It's great that you have such a good response, maybe you will be one of the "chosen ones" who gets to taper all the way off!

Sandi and Mom - I agree with you both!!!
- I don't believe I need to be that high, I personally think with the current count that staying at 12.5mg daily thru the surgery no matter if counts go higher/lower would be safe. I am tempted to do just that but don't want to jinks the surgery again.

I had the same surgery 2 1/2 years ago at a count of 33K - no treatment for ITP at the time

I would be tempted to tell my doctor(s) that there is nothing 'safe' about going from 25/skip to 25 straight with a count of 208.
IMHO, if they really want to be safe, they'll push the surgery way out until after your counts are stable.

Maybe they will compromise. A 25/25/skip (=16.6mg) dose might keep you were you are now - if immune system doesn't change.

Hal - Great idea - skipping every third day (I could forget to set my alarm for 2:00am on the third day :whistle: )

The reason for the surgery : Spinal Stenosis of Lumbar Region; Degeneration of Lumbar Intervertebral Disc

I need to have the surgery before the end of the year - insurance deductible has been met and for once I won't have to pay for it (thou I do pay for it by paying my insurance premium each month - but that is another conversation - I'm self employed)

I have stenosis in my cervical spine. I've had the surgery twice and am headed for a third. Once it starts....

I don't blame you for wanting it done. The nerve pain can be awful.

After a headache that blurred my vision and kept me in bed most the day on Saturday I decided to only take 12.5mg Promacta (because of the upcoming surgery I can not take anything to suppress the headache). I did e-mail my Hemo with my concern and Monday she said - reduce to 12.5mg (I didn't tell her I already did - I wanted her to think it was her idea )
She mentioned that 1/2 the dose will not always do what we want and I could crash - I don't think I will based on the 25mg every other day effect of 208k platelets - She had me do a draw today to get a baseline for the 12.5mg and we will keep our fingers crossed that it does what I believe it will do. The steady mild headache today is bearable (three days at 12.5mg Promacta).

Good luck. I hope that dose works well enough for the surgery.

Blurred vision? Oh my.
Yea, that was a petty high count when you did those skips. I guess as the counts fall a bit the risk for crashing may get higher.
I'm a bit surprised that they didn't allow Tylenol. They allowed that up to the day before my colonoscopy. I did take it a couple days before.

I only had to stop my meds the day before surgeries, and I took Naproxen, Plaquenil and aspirin which all thin the blood.

After three days at 12.5mg - platelet count 182K
The headache is getting better each day and almost not even there today!
After Monday's surgery maybe I will be able to reduce Promacta even more (maybe it did a reset for me and I will be able to not treat again - fingers crossed) but I don't want to get too far ahead of myself - surgery then work on lowering dose.

Excellent. A drop of 26 after 3 days.
That would be the expected drop with an eventual target of roughly 130 (=258/2) after 2 weeks on 12.5mg (half previous dose).
LOL, on course and on glide path for landing.

Headaches are completely gone for me. It's somewhat unsettling. When I had the headaches at least I knew the Promacta was working. With no headaches, I can't tell if it is or not. I guess I'm going to have to live normally again, LOL

Funny Hal, I know what you mean! If we feel normal something must be wrong. hah They always tell me to keep taking the drug and the side effects will go away. I find that hard to believe but then it does seem to happen. I had side effects with Promacta the first couple weeks, then they went away mostly. Nplate was like that also- side effects lessen as dose is lowered and as time goes on.

So I've only been on the Promacta (50 mg) for 8 days, and am wondering about some strange things I'm feeling. I very rarely have reactions to anything. Even with my platelet counts of 9 or 16 I barely even bruise. Anyway, I HAVE had a fairly consistent headache- nothing horrible, but Extra Strength Tylenol doesn't seem to be putting it away. I'm not supposed to take my wonder drug-Advil. But after yesterday's count of 194 I chanced a dosage last night to try to get some relief. Other odd symptoms....the tips of my fingertips kind of burn, and my toes hurt! And last night my whole body kind of ached. (Now, I also run 10 miles a day, so this could be related.) But I've always run and these symptoms are new. (I also have rarely had a platelet count higher than 90 so maybe having actual platelets is making me feel something!)

Anyone else have these kinds of things? It's almost as if I'm aware of parts of my body I've never felt before. (fingertips??)

11/01/17 draw - count is........ 165k (12.5mg Promacta 11 days)
Headache is still there - I think it is messing with my sinus's taking Zyrtec seams to help more than Aleve or Tylenol.
I have also noticed that my fingernails are growing faster and much stronger than prior to Promacta.

Surgery was a success and it is so nice to be able to walk and move with much less pain!