Promacta - side effects

I have been lucky enough to not have to treat for some time but when my counts fell below 20 for a couple months my Hemo said - time to treat (had lots of bruising and a pretty big hematoma) so..... finally started Promacta 08/23/17 25mg.
I have had a great response - 130K count after only one week. I am tapering off Prednisone (used while waiting for Promacta approval by insurance) down to 10mg/5mg alternating every other day . (counts while on 20mg Prednisone - 54K)

I wanted to start this topic for ITPers to use as reference for side effects.
My side effects: Mild headache, reduced appetite (maybe I can start loosing some of the Prednisone weight ) and the strange one - Sweating - I mean a lot - I am drenched within 5 min of any physical exertion - like walking the dog, doing dishes, folding cloths etc....

Great count CindyAnn
I lost my appetite to start with but it soon came back. The odd mild headache no sweating.
How long have you been on Pred?

Great count CindyAnn
I lost my appetite to start with but it soon came back. The odd mild headache no sweating.

I have been on it for 1 week - I hope the appetite thing sticks around for a while

Straight 25mg puts me at 143. A 25/12.5 split puts me around 100 which is where I'm holding for colonoscopy. All my counts versus dosing has been extraordinarily linear and very predictable based on proportional dose - which is a prominent feature of a type/row 3 response .

Headaches are a bit of a problem. I take low dose aspirin roughly once a day - sometimes none and sometimes two a day. It is really surprising to me how little aspirin is needed to get rid of them.
I should qualify the headaches. These headaches are different than any before (except IVIG headaches). They are in the very back of the head. All other / normal headaches have been more forward or temporal. The headaches are also more of a feeling of headache coming on than an actual pain. If I let it go though, without treating with aspirin, then it can develop into a real throbbing and painful sort of headache.

I don't have any measurements yet but with some 12.5mg trials, at that dose all sense of developing a headache goes away. I'm guessing my counts are somewhere around 65 then. This is TBD. So I think it is reasonable CindyAnn that the headaches will diminish with a lower count.

Nice count. Sounds like you're headed for over 200 after two weeks. Hope the response stays up there with no steroids.

Hal - you were close - yesterdays count 195k

I will be dropping predisone to 5mg and hopefully stop next week.
Side effects still the same - controlling headache with Aleve.

It will be interesting to see what the count will be two weeks after getting off steroids. Since you started at 54 maybe lose most of that from the 195?

Are your headaches anywhere close to the description I gave of mine? Is Aleve supposed to affect platelet function - make them less effective like Aspirin does?

Hal, my hemo told me no Alieve or ibuprofen with low counts. Both of these and their family can slow down platelet production.

NSAIDs affect platelet aggregation not platelet production

Article link Aspirin and nonaspirin nonsteroidal antiinflammatory drugs (NSAIDsJ inhibit platelet cyclooxygenase, thereby blocking the formation o f thromboxane A2 • These drugs produce a systemic bleeding tendency by impairing thromboxane-dependent platelet aggregation and consequently prolonging the bleeding time. Aspirin exerts these effects by irrevers· ibly blocking cyclooxygenase and, therefore, its actions persist for the circulating lifetime of the platelet. Nonaspirin NSAIDs inhibit cyclooxygenase reversibly and, therefore, the duration of their action depends on specijic drug dose, serum level, and half-life. The clinical risks of bleeding with aspirin or nonaspirin NSAIDs are enhanced by the concom- itant use of alcohol or anticoagulants and by associated conditions, including advanced age, liver disease, and other coexisting coagulopathies.

My use of Aleve is basically the lesser of multiple evils - It works best for me.
With tapering off prednisone the Aleve will help with all the joint and muscle pain as well, I am sure I will be needing it over the next few weeks.
My headaches are behind my eyes and just sit there - very annoying

mrsb04 wrote: Great count CindyAnn
I lost my appetite to start with but it soon came back. The odd mild headache no sweating.
How long have you been on Pred?

Just realized I read the question wrong - I had been on prednisone from July 19th this time - had stopped prednisone April 13th prior to starting again in July. Overall I have had about 6 years worth of treating with prednisone :sick:
If all goes well I will be of prednisone for good tomorrow - fingers crossed

Still at 25mg Promacta but I get to stop prednisone today!!!!! I will happily live with the withdrawal effects just to get off!
Count for yesterdays draw 193K (I had reduced to 5mg prednisone for the week)
Side effects are still the same - with the addition of frequent bowel movements (3 - 4 a day). Controlling headache with Aleve (I took two days off to see if it was going away - nope)
I hope to be able to reduce the Promacta in the next couple weeks, my Hemo wants to see counts without prednisone first.

I was on Promacta in spring of 2016. Started on 75mg. It raised my counts some and I was very hopeful however I began to have breathing problems and found I had severe pulmonary embolism. My current hematologist won't try it again(I am apparently also prone to significant clotting. He calls me his "special case") . I left the hematologist who put me on Promacta, I requested to try it, however he kept me on a high dose of Prednisone in addition to the high dose of Promacta, which likely caused the PEs.

I had headaches and bone pain on Promacta and yes the sweating was DREADFUL!

Susan - you'll need to be careful on N-Plate too if you are prone to clotting. It works like Promacta. Have you been tested for APS (clotting disorder)? ITP can be a thrombotic disorder as well as a bleeding disorder.

www.onclive.com/insights-archive/immune-thrombocytopenia/risk-of-thrombosis-in-patients-with-itp

Susan, thanks for sharing. What were your platelet numbers when you had the pulmonary embolism? I had read on the Amgen-Nplate website that 80% of clots happen when counts are over 100 so that is why they recommend counts stay around 50, but some doctors ignore that. Yes I think mixing drugs can be problematic. Also like Sandi said there are clotting disorders that go with ITP. I just got tested for APS and am negative.

I clot because I have May Thurner's syndrome as well. My Iliac artery crosses my Iliac vein compressing it. I have two stents in there but I am prone to clotting from the weird layout, those two vessels usually run parallel. It isn't really my blood that is weird it's my veins in that area. Then they break off to my lungs quickly.

ITP has been a blessing and a curse.

On Promacta and Prednisone (which is a HUGE no-no and why I don't have that Hematologist any longer) I was sitting at counts of 200, that doctor refused to allow me to taper off the Prednisone even after I looked up I was on too high a dose of steroids in addition to 75 mg of Promacta. He was completely clueless as to which drug was even keeping my counts where they were.

So, I left that doctor and tapered myself. (yes, I did it safely and correctly. )

What a horror story, Susan! I just don't get these doctors that think they have to get you into normal counts regardless of the situation and the drug manufacturer recommendations. I'm glad you left that doctor. You seem to have a good handle on your situation.

CindyAnn wrote: Still at 25mg Promacta but I get to stop prednisone today!!!!! I will happily live with the withdrawal effects just to get off!
Count for yesterdays draw 193K (I had reduced to 5mg prednisone for the week)
...
I hope to be able to reduce the Promacta in the next couple weeks, my Hemo wants to see counts without prednisone first.

CindyAnn, getting counts checked this week or next?

I get to go down to straight 12.5 mg starting Friday. Yeah. I am so tired of the (pseudo) headaches with counts around 100.

Checking counts and liver function weekly 08/20/17 draw count was 182k (25mg Promacta - NO Prednisone) I did a draw today and will have count in the morning. My Hemo said if all is still high (for Promacta) we can reduce to 12.5mg Promacta, my fingers are crossed

As for headache - still there and still treating with Aleve. Bowel movements remain the same. Appetite is still subdued, I eat because its time not because very hungry. I did start sneezing fits (20-30 sneezes) a couple times a day (I think being off prednisone contributes to this now)

I will check in tomorrow after communication with my Hemo.

Well, my count came it at 169k (25mg Promacta).
Hemo would like me to stay at 25mg for two weeks and then check again. (I was really hoping to drop down to 12.5mg - I don't like my counts so high) If all goes well she MIGHT let me go to 25mg every other day - but that is a big MAYBE. I guess I should listen to her since she is an advise for this site, Terry Gernsheimer, MD | Puget Sound Blood Center.

So will update again in a couple of weeks -

Sometimes changing the dose too much can cause drops and counts that are too high. A dose should be maintained for a while so you can see how you actually respond to that dose. Otherwise, you just keep chasing counts and won't get stable. That is a high count, but see how 25 mg. goes before changing it.

CindyAnn wrote: Well, my count came it at 169k (25mg Promacta).
Hemo would like me to stay at 25mg for two weeks and then check again. (I was really hoping to drop down to 12.5mg - I don't like my counts so high) If all goes well she MIGHT let me go to 25mg every other day - but that is a big MAYBE. I guess I should listen to her since she is an advise for this site, Terry Gernsheimer, MD | Puget Sound Blood Center.

So will update again in a couple of weeks -

Wow, you sure are having a great response to Promacta! I completely understand your response. I think that Sandi is right, in the same way that we can get outlier low counts, we can also get outlier high ones. Staying at the same dosage to see if it goes down at the next check would be a good way of determining if it is a trend. Technically the recommendation is to decrease the dosage with counts above 150, and you really aren't significantly off of that, so changing is not necessarily indicated.

All that said, I'm the kind of patient who is much happier at 40 on Promacta than anything above 100, so I'd be fighting myself to follow my doctor's recommendation with a count that high. I start imagining all sorts of dire outcomes and every twinge becomes a nefarious clot in my mind. I hope you are a better patient than I am! In general, keeping my dosage at 50 all the way through has been better for me achieving more stable counts, so there is something to be said for consistency. Do your best, but if your next labs are even higher, I'd be decreasing the dose pronto!

I totally agree with you Mom, but we have been seeing too much dosage change with the TPO's lately. People with counts all over the place because the dose gets changed with every count to reflect what the CBC shows that day. I've never seen so much dose changing and kitchen sink treatments going on and none of it seems to be helping.

Too true Sandi. Count chasing seems to be the default reaction to this condition. In my previous office, there was a nurse who you had to see after every count, and her only job was to tell you, based on that single number, what to do with your medication. I think they were primarily used to steroids, and tweaking those up and down, but she fell right in to doing the same thing with Promacta. When I wouldn't follow her advice and tweak my Promacta up to 75mg based on a low count, she was not happy!

I have to fight with myself to not have knee jerk reactions with higher counts... the struggle is real
Luckily I've been running lower lately :lol:

Another good count even after being off steroids for a week Cindy. Maybe another small drop for next week? About taking 25mg every other day.
Certainly I have been able to skip days without issue. It will be interesting to see if you, being a steroid responder and myself being a non responder, can do that too. That is, not have counts crash.

Take a look at this description of her husband's Promacta headache . This description is not too far off from what I experience. The discomfort only lasts a few seconds and then goes away. But this repeats often and is not constant.

just to clarify - have only been on 25mg Promacta the whole time and the last count was two weeks off prednisone. I do understand my Hemo's want to stay at the 25mg Promacta for a couple more weeks before changing - however I am one who believes Less is better when it comes to medication so I really would like to drop down but I will obey (for now).

Less is better is a great goal! I'd give it at least another two weeks to see how this dose goes before you drop it. I get Mom's 'knee jerk reaction' response but that seems to be how people have been getting into trouble lately.....always changing the dose to reflect that day's platelet count. Patience! In this case, I think your doctor is right and hopefully you can drop the dose soon.

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.

I agree with the notion that sometimes dose changes are made knee-jerk. I think that's why I'm dealing with a clot now. I should not have had a second IVIG after spleen surgery. In my defense the morphine had me in a cloud and I did not think to wait a day after the first to see if I responded.

DMann in your defense, you would have had no reason to think you'd have had a clot. That's not something that most people expect. You only did what your doctor wanted you to do. Even without the morphine, you probably would have agreed. I'm not sure the second IVIG was the main reason for the clot anyway.