Joint Pain with Promacta or NPlate?

Wondering if anyone has had joint pain with Promacta or NPlate? I have been having pain in various joints for about 2 weeks. Making it hard to walk, hard to get in and out of the car- feet, knees, elbows, hands, shoulders. I also have been having muscle aches, body aches and chills off and on. Some days it feels like I'm coming down with the flu but I know its not that.

Its possible I'm having an arthritis flare up that in unrelated to Promacta. Don't know, joint pain is not a recognized side effect. But I'm pretty sure the body aches and chills are a side effect because they are listed.

Also I've been having waves of fatigue. Anyone have that? I hope not! But if so I'm curious to compare notes. Not a tiredness so much as my muscles sometimes feel very weak like I need to sit down.

For 6 mos I've had no side effects at all with Promacta. It was working great! Now I don't know whats going on but I'm reducing the dosage in hopes of feeling better. I hate to quit taking it because as we know the alternatives aren't too great.

Today I haven't taken anything and feel better- normal energy not exhausted, not in pain. Counts are around 25K. Was on 50mg Promacta every day. Will begin taking 25mg and a bit of prednisone. Will see how that goes and will let you'all know!

PS. On another note- just read some ITP people are reporting more problems with autonomic nervous system. A few years ago my counts were 6K and I felt faint when I stood up. Hemo said no way could low platelets cause fainting. hmmm..

Good health to all and a happy holidays! ~Posey

I have had some sudden Extreme Joint Spasms/Horrid pain on NPlate. Hasn't lasted more than a few minutes and has only happened maybe 10 times. Hema said it was a possible side effect.

I have had fatigue nearly every day. Need to ask Hema about that when I see him next week.

I do have pain in my feet....mostly because the right foot was slammed while skydiving 30 years ago and the left crushed in a motorcycle wreck 40 years ago.

I don't have waves of fatigue, but I do experience more fatigue with Promacta than I did on other treatments.
My standing theory on this is; Promacta and Nplate radically increase platelet production...and as Robert Heinlein wrote so often, "there ain't no such thing as a free lunch". The energy for that increased platelet production must come from somewhere. Platelets are not made by little elves in a hollow tree. So, your body is working overtime burning a more-than-normal amount of energy to produce a more-than-normal amount of platelets....non-stop. It is exhausting just thinking about it all!

The other side of the fatigue coin is simple that our bodies have a war going on inside all of the time. For most of us, once you increase platelet production, you increase platelet destruction. To me it feels much the same as when antibodies are fighting something like a cold or flu....except this time they are destroying my lovely brand-spanking-new platelets. Anyway, the end result is the same: fatigue.

My 'TANSTAAFL' theory extends beyond fatigue as well....I'm fairly certain that this is why I've lost 30 pounds over the past couple of years. Food is converted to energy, energy is converted to excessive amounts of platelets, and most of those platelets are destroyed.

However, I am not a doctor, nor do I play one on TV.

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weirdjack wrote: I My standing theory on this is; Promacta and Nplate radically increase platelet production...and as Robert Heinlein wrote so often, "there ain't no such thing as a free lunch". The energy for that increased platelet production must come from somewhere. Platelets are not made by little elves in a hollow tree. So, your body is working overtime burning a more-than-normal amount of energy to produce a more-than-normal amount of platelets....non-stop. It is exhausting just thinking about it all!

The other side of the fatigue coin is simple that our bodies have a war going on inside all of the time. For most of us, once you increase platelet production, you increase platelet destruction. To me it feels much the same as when antibodies are fighting something like a cold or flu....except this time they are destroying my lovely brand-spanking-new platelets. Anyway, the end result is the same: fatigue.

For me your theory falls because it *is* the low count that causes me to feel fatigue. Even on Nplate I can tell when my count is falling. When it's round about 100 I feel great even though my body is pumping out platelets at a rate and still at war. Also it's been interesting to see that a low neutrophil count doesn't make me feel fatigued or anything. So the killing off of neutrophils doesn't cause fatigue either.

When I get fatigued, I also get sort of hot flushes (not menopausal) which is also weird. I had that a couple of weeks ago when my count was 29. I'd like to make another theory round that but I don't know where to start.

Thank you all so much for your responses. All very helpful.

About fatigue: there can be many reasons for fatigue, one doesn't invalidate another. In my case it seems more like a muscle weakness rather than sleepiness. So different types of fatigue too.

Interesting Tgurin about joint spasms, I may have had that some too just didn't know what it was.

All I really know is that ever since I got the flu shot I haven't felt well. And have been feeling increasingly bad. I'm not blaming the flu shot per se. But it may have thrown off the balance. Plus other factors, I think caused my immune system to mount a big attack. Joint pain is from inflammation which is the immune system being very busy I believe. And perhaps its mounting an attack on Promacta too. Thats what it feels like. Because now I can't tolerate taking it, getting such a big reaction.

anyway will be getting the lower dose today 25mg. Don't know if that dose will do anything. I'm tempted to stop taking it for a while to let my body calm down.

I had to find a new hemo, my favorite one moved. The new one is so swamped with oncology patients that they are like "just let us know what you want to do, keep getting your blood drawn and come back in 3 months- call us if you need us!" hah the bums rush. But hey, I like making my own decisions and they're trusting me to handle it so thats cool.

On another note: I've noticed my platelets don't crash when I go off Promacta. Another time I ran out and missed 3 days with no crash. This time waiting for lower dose to come in the mail and plates seem to be holding.

take care all, ~p

When it's round about 100 I feel great even though my body is pumping out platelets at a rate and still at war.

Unfortunately Ann, I have never had my platelet level reach 100k, so I don't know what that feels like to know the difference.
I suppose I did neglect to include the standard; 'everyone is different' and 'YMMV' disclaimers......

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weirdjack wrote: I suppose I did neglect to include the standard; 'everyone is different' and 'YMMV' disclaimers......

I did start my little spiel with "for me" so the YMMV was taken as read. Sorry for any misunderstanding. Of course ITP probably has more than one mode of action so there will be more than one reason for the various effects.

I now DO NOT think my chills, body aches and joint pain were a Promacta side effect. I now think it was probably a virus. Haven't felt well for weeks then came down with shingles or something similar- a patch of blistering skin with headache, body aches, fever. Doctor says its a virus and thinks the joint pain was also a virus possibly the same virus that started with joint pain and ended with blistering skin.

They say people with suppressed immune system are more likely to get shingles. Funny I would get it now after being off prednisone. Seems more likely I would have gotten it during the year I was on high doses of prednisone and Rituxin. another mystery

good health for the holidays! ~ p