promacta achy joints

[Seafood]

I have ITP since July 2017. My lowest count was 16. The dr. put me on prednisone and It made me go bat ---- crazy!!! They started me on Promacta 25 mg, I thought I would die at night with the pain of achy joints.It has gotten a bit better, however I got the flu and my count went up to 226! The dr. had me cut the pill in half. My count is now 70. She said keep taking 1/2 pill. As soon as I take that 1/2 pill within one hour my joints, muscles, hurt so badly. I feel as I have aged 10 years. Has anyone else had this?

[Deepayada]

Same was the problem with my son, he was unable to stand and walk due to Prednisone high dose, generally this medicine causes weakness in bones

[MissMariposa]

I am on Revolade (Brand name of promacta/eltrombopag in EU) and I have bone, joint and muscle pain from it on a regular basis. Been on it since two months into my ITP diagnosis back in 2016 as prednisone did not work for me (and it also drove me insane - all those side effects!). I keep having my dosage adjusted as I respond to the rise and falls of my platelet numbers.

Down side the pains vary a lot sometimes I am fine and sometimes its so bad I can't move or be comfortable in any position so much so I wanna chop my aching limbs off, and they never seem to settle in one spot.

If you were not taking vit. D & calcium to protect your bones when you were prednisone ask your doctor if you can take it now (not within 4hrs of taking your meds obviously but see if you can sort the timing) as I found it help me a little with some of the minor muscle/joint aches although not the really severe bone pain. I also try and time taking my meds right before I go to sleep and most of the time I can sleep through the worse of the pain.

The only other thing is I now take long salt baths which kind of help alleviate the aches, well playing with Lush fun and bath bombs might be the thing that distracts me from the pain. Let me know if there is anything you do to get through the pains as I need ideas.

[Seafood in reply to MissMariposa]

I can not take that right before bed as it keeps me up all night. I try to take Promacta around lunch, then have to wait one hour before eating. I am starving by then. I worked out everyday before all this, so now I can only work out at slower pace. I feel old !

My pain jumps around, it is so strange. last few weeks it was in my right thumb, like I had smashed it in the door, now it moved to elbow. It also moved from the bottom of my feet to back of my knees and right under my buttox. So strange. like there is something inside me.

I too take long baths with epsom salt. And I get regular massage. I had my regular dr. write a prescription for massage. I don't know yet if my insurance will cover it. I will let you know.

I am a single mom of a 13 year old boy. His dad does not help or see him so it is 24/7. It really makes it tough with his ups and downs, and all moody!

It is what it is. Being stuck, having blood taken, going to the cancer center every two weeks, plus taking this medication sucks, the new norm.

I do still have my drink or two of wine every night, it is my saving grace. My son swims year around, so I feel like I am his uber driver.

Looking forward to summer, so we can have the real vit. D.

keep in touch

[MissMariposa in reply to Seafood]

I don't drink regularly anymore only on special occasions as my hematologist told me that alcohol can have an effect - I wasn't drinking much before but as soon as I was told not to I really got obsessed with have a G&T! I can't get massages as though I think it helps with the muscle/joint pain when the bone pain is bad I can't even be patted lightly on that area. I hope yours is covered by your health insurance - I am lucky to have nearly everything covered over here (none of the homeopathic stuff but not so into that anyway).

I forgot to add my hematologist has given me painkillers in the form of pills and creams but I do try not to take too many as am very aware of getting addicted to them and also don't wanna kill my liver. When the bone pain is bad the painkillers are not particularly helpful either as they only take a slight edge off it but might be an idea for the muscle/joint pain. Someone told me about using magnesium or CBD oil to relieve pain but not really investigated it much as the science seems to be on the fence on that one - I might get a bottle or two when I am next in the UK as can't get it in DE.

All the pain also means I can't really exercise too regularly I try to get it in when I can. I find my muscle strength has gone down soooo much! It definitely makes me feel double my age. Like you I feel like I am stuck on a new normal state of being; clinics, blood probes, meds and pain all on a loop. Only luckily for me I don't have children - I am a Sec. school teacher so totally understand about the whole moody teen thing but at the end of each day I get go home to my own space!

I guess it's still all fairly new for you since you were diagnosed 7/8 months ago - there is a chance the pain subsides a bit! About six months into the meds my pains went from severely intolerable pain (the type that leaves you constantly limping, building up to moving body position or bed bound & wakes you up in the middle of the night) to what it is now.

I found the first year after my 'diagnosis' the worst and now some of the meds' pain has gone, I have managed to let go of some of my frustrations with it. Important thing to know it you are not alone though it might feel that way (no one in my 'real' life understands or even heard of ITP before I got it) but here on the forums people get it because they are going through it too - I just wish I found this place at the beginning of my 'diagnosis' and not ten months later. Keep talking to others and sharing your experience - I find that helps a lot.

Not quite got my eye on summer yet just want it to be not a minus temp!

[Seafood in reply to MissMariposa]

Yes I am on pain meds as well. I have to take one each night to even get to sleep.

I was taking 25 Mg then as I mentioned I got the flu and my count went up she cut the dose and half and the pain got worse.

[Seafood in reply to MissMariposa]

Oh I have stopped drinking and started back it makes no difference in the count on mentally eases stress.

I have found that I am very forgetful as well, and anxious most of the time! Like what’s next?

[MissMariposa in reply to Seafood]

I too have been getting noticeably more forgetful - there I was thinking it was just me getting older as no one else seems to mention it (either here or in my research). Maybe its the stress of everything!

[Seafood in reply to MissMariposa]

I guess, it really bothers me though as I have prepared my will and paperwork just in case, since I have a son and need to insure he is taken care of. I can’t find the title to my car and getting another one is a huge hassle.

[Seafood in reply to MissMariposa]

Do you ever feel like all these things that are happening to us are due to the itp?

The drs don’t know why we have it, don’t know how to get rid of it, put us on meds that have all these side effects.

This day sucks for me. Lost an hour of sleep. Exhausted going to gym. Waiting to eat because have to take pill 4 hrs after I take my acid reflux pill. Then 2 hrs after I take promacta.

I lost my mom and dad in 2016, only child. Divorced after 20 yrs, just down today.

I have sores in my mouth too. I go back to blood dr Friday.

Sorry just a bad day 😟

[MissMariposa in reply to Seafood]

Don't apologise for a vent over having a bad day - I am sorry to hear you are having a crappy day! I wish I could send you a hug to let you now you are not alone. There things that I think are definitely because of the ITP or the meds like the pain, tiredness, rashes e.t.c. The memory thing might just be stress and the moods/insomnia maybe a combination. It's hard to separate it all because the ITP impacts everyday life. In particular the pain, lack of sleep and stress on top of normal everyday crap you have to deal with sometimes make it seem impossible and feel low. I take it one day at a time and try to do a bunch of coping strategies - these lows will pass at some point.

[Seafood in reply to MissMariposa]

Thank you. Can not not talk to people that don’t have this b-cause they see you and think your fine.

My son grabbed my elbow yesterday (just playing) and it just so happened that is where the pain had moved, from my thumb to elbow. I thought I was gonna die of pain!

Do you think itp is pre-cancer?

Just need to get my son through school. 5 more years! He is in 7th grade.

I am 55 feels like 180!

Thanks for your kind words 😊

[MissMariposa in reply to Seafood]

No worries that is what this forum is for getting support from people who get it! I am not sure ITP is pre-cancer who knows what actually causes it. I was cleared of cancer (specifically lymphoma & leukemia) being a cause last year in fact was cleared of all the usual suspects; chemical, viral, bacterial, rheumatoid, cancer... any and every test they could think of my hematologist did and they found nothing wildly out of the normal range (my liver and lungs aren't great but not anything that causes ITP). I literally only have the ITP (and the crap it comes with) as my one and only symptom and its dragged on so long my doc is like it's chronic primary ITP. It is funny as you and I could have the same thing or it could be two completely different diseases - there is just no way to know and that in itself is super frustrating.

[Seafood in reply to MissMariposa]

Omg. My dr which have been two... have not done any tests. I had limes in 1998 actually found the tick pulled it out of my scalp. Still have a lump there. I also had “pitaRias” rosella “ it is a skin thing. Very rare, not contagious, you only get it once, but caused a miscarriage. I still have symptoms, of allergic to anything. I have told all the drs about all of this but they do not do anything except send me back to my all around dr. I have swollen lymph glands now. I am so paronoid . I feel in my heart I will not make it past 5 years . My son Alden, I have to see him to go to college.

That is all I really care about.

So frustrating.

[MissMariposa in reply to Seafood]

Do you not have a regular hematologist you see? I think this is important to have a decent one - I had two so far as my first one moved away but luckily both have been good. The first one with all the testing (which was really intense as it was nearly all done in the 1st six months) and moving through trialing meds effectively until something worked and now the second look at helping me reduce meds and manage the side effects. I barely see my GP (general doctor) at all unless I have a routine check up for the asthma. I think in my case they went searching for a cause because my onset was fairly sudden, within weeks I developed all the symptoms of ITP and my platelet numbers dropped to 2, rushed into hospital and stayed there for a while.

I wouldn't be paranoid about the future though, statistically high chance of living very a long time with ITP despite not much being really known about the cause of primary ITP and if it turns out to be secondary ITP then you will have a disease which you can tackle and sort a treatment plan for. You will see your son go to college and then all the other normal goal/signposts of life!

[Seafood in reply to MissMariposa]

Wow I have not been given any tests and know nothing about “secondary itp. I was told I would be on meds forever. My hemotologist tells me to go to GP for everything .

I already go to pain management due to a back problem that flares up.

However, with the aches and pains, or anything else I go to see another doctor.

My eyes have gotten worse as well.

[MissMariposa in reply to Seafood]

I don't what the protocol is where you are but there are different types of ITP mine is primary ITP when you just get ITP and nothing else. Secondary ITP is when you have ITP because of some other disease or as a response to a virus or chemicals. They should have slowly eliminated different causes like a viral or bacterial infection (inc HIV, Hep C or H.pylori) exposure to chemicals, cancer in particular leukemia/lymphoma, autoimmune disorders like Lupus, RA or Evans... the list is endless.

SO many tests, if you can name I've probably had it. I got referred loads of different departments and even got a rheumatologist who I have to go back to every 2 years to check I don't have an autoimmune thing like lupus slowly creeping up on me. Every type of test they had going I think I'd had it.

Eventually when they ran out of stuff to check for they concluded mine was primary ITP (& chronic because it lasted more than 12 months). After all that they told me that the meds I was on was fairly permanent although my hematologist says he will try and reduce my dosage to see if I go into remission....because let's face it our meds are quite toxic.

I would definitely get to an ophthalmologist to check out your eyes could be just be age or stress but could be an indicator of something auto-immune.

[Seafood in reply to MissMariposa]

MissMariposa:

I asked my dr. why I have not gotten any further tests done? so she did the following:

dsDNA Ab reflex 1IU/ml

RNP ABS 0.2

smith/rnp abs reflex 0.2 AI

smith ABS 0.2 AI

chromatin ABS REFLEX 0.2

My count went down to 65 from 82

[MissMariposa in reply to Seafood]

Sorry to hear your count went down but I find it better to ignore the numbers and focus on how you feel and what symptoms are coming up. I am glad your doctor is trying, I mean all the testing might not reveal anything (like mine did) which might make it seem pointless but then you can be more assured it's not secondary ITP due to something like cancer or some other condition and just some mystery illness. I just laughed, it is funny that is reassuring but seriously the unknown is a tiny bit preferable to cancer any day of the week.

Hope you have a good week! I am just waiting for the bloody snow to melt...it refuses to go and its mid-March already!

[Seafood in reply to MissMariposa]

I just typed an entire message and it disappeared. I hate computers.

I was saying the SJOGRENS SSSA AB test was 4.7

I guess the are going to send me to an arthritis dr.

I have very dry eyes and mouth. itchy skin, i think I read someone else had itchy skin as well.

who knows. I don't think anyone really knows why our bodies are confused.

[Seafood in reply to MissMariposa]

I think I have Lupus systematic. I have that rash on my face, and one on my scalp, top of left hand, and top of right foot.

I don't know that I mentioned my count went from 82 to 65 in two weeks.

Since she cut my dose in 1/2 it has dropped from 226 to 65.

what will an arthritis dr do????? more drugs? more tests? I have had to take a pain pill every day this last week, I usually only take one at night.

[MissMariposa in reply to Seafood]

I get itchy skin too and bubbly rash on my hands; I was prone to eczema as kid so I dunno if that has anything to do with it but since it only really cropped up with regularly since I started Revolade - I think it is stated as a possible side effect. I hate that it is hard to know what is just a side effect and what is a symptom of actual disease progression.

If you see a rheumatologist they should be able to see if you have Lupus - although I have heard in some people that is a hard one to diagnose. I would expect more tests for sure as mine sent me did loads of blood probe, examined my medical history, sent me to an ophthalmologist for an eye test, lung function, EKG and something I not even sure what it was testing just as starting point. For me there was not enough evidence or markers of SLE for Lupus to be a thing but I am weird enough that I need biannual check ups.

I am mostly over the intense testing phase where it basically eliminated most of the usual suspects - it a good thing in that confirms you don't have scary things like cancer of lupus but its also feels bad that there is a mystery cause that I cannot solve. At one point before I was cleared of cancer/SLE I had so many mixed emotions, I didn't want cancer of course but then if I got it I'd finally have a cause and could start a plan to work on getting better. It is so confusing not to mention exhausting but in the end I think it is good that they perform the tests and at least try to find the root of your ITP.

[Seafood in reply to MissMariposa]

Yes I agree. I asked her straight up could she not tell if I had lupus she said no.

I was bitten by a tick in 1998 and got limes. Lucky caught was put on antibiotics for 30 days. I think it stays with you.

A few years later I got this weird thing called Pita ryis Rosa. They took forever to figure that one out. Look it up . Crazy.

Now I am allergic to most everything . Dust, mold, pollen cats dogs hair . Not seafood thank goodness as I do not eat red meat or chicken.

This sore on my hand is about the size of half a dime, red and swollen. Just popped up?

I put some cream from when my son got some type of rash from camp. I had a similar sore in my scalp and on the top of my foot.

Oh gosh on and on

We have a 4 day swim meet this weekend. Then going to Hilton Head for Spring Break. Maybe that will help

Take care

[Kerpaka in reply to Seafood]

I read somewhere acid reflux pills are not got for ur platelets. Just saying...

[Kyriak51]

Hi sorry you’re in so much pain, are you taking anything for the pain, have you discussed this with your hematologist? I believe the muscle and joint pain is a side effect of your medication, and should be managed, talk to doctor; hopefully he/she can develop a pain management plan. Be well