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Stopping promacta abrubtly because of side effects

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10 years 1 month ago - 10 years 1 month ago #51197 by Pedrothelion
I've been on promacta for 5weeks. At 2 it was doing nothing so i got two doses of IVIG. My platlets are now at 450k. I've also been on 30mg of prednisone and was just taperes down to 25mg.

The introduction of promacta has given me extreme anxiety, brain fog and disconnectedness. Just not a happy life. I spoke to the doctor and was prescribed xanax and celexa. I tried the xanax once mellowed me out a bit also made me tired, than after it wore off all this joint pain, so i'm over that. And i don't want to take celexa for something that is clearly caused by promacta.

Anyways i decided on my own(its a saturday) that i'm done with promacta. I did not take my dose today. Have people who have stopped needed to taper?

I'm suprised to not hear about others experiencing these psycologicsl side effects. Are there others who take promacta along with 30mg of steroids. Could just be the combination but the steroids by themselves make me feel great.

I still have hope for a remission and wanted to try rituxan but i got a positive hepatatis screen but later it turned out i do not have hepatatis. Any experience with rituxan.

I hope that stopping promacta abrubtly does not harm me. But for all we now my body may have gone into remission, it all seems like such guesswork. I know that i'm not ready to commit to taking this drug for the rest of my life when it makes me feel like this, at 5 weeks too. So i know and have known that i want to try something else.

In general i have loat my trust in the doctors and i want to go a more naturopathic holistic route, (any advice here?) i've seen a naturopath once for ITP and she gave me reishi extract and another herb and enouraged me to eat lots of root vegetables and fish.

I know its a bit irresonsible to not talk to the doctor before doing this but my body and mind just say no to the promacta and i'm not ready to commit to the drug so seems like an alright time to quit while my platelet count is so high.

Side effects of promacta for me have been weakness, fatigue, brain fog, extreme anxiety(i meditate and excersise daily), ED, loss of libido.

I may have put up with these if i was at a different place in my life but i'm a 33 year old single full time dad who just went through a breakup and lost a whole social scene. I'm dating someone now and its important to me to be social and make new conncetions both for my career and overall happiness. And on top of that i'm just not ready to give up on remission. I've had itp 4 or 5 months
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 1 month ago #51201 by Sandi
Your side effects seem more like Prednisone side effects than Promacta. Side effects with steroids tend to be cumulative and get worse the longer you are on it. Side effects also get worse with the taper. Anxiety, joint pain, feeling disconnected, etc are all common with Prednisone.

I would not just stop Promacta. It could cause a platelet crash. Talk to your doctor before stopping any meds, please?
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10 years 1 month ago - 10 years 1 month ago #51205 by poseymint
I have stopped Promacta abruptly several times due to side effects. In my case my platelets did not crash but slowly drifted down over several weeks. That said, your platelets could behave differently and crash so be aware of that. Yes as Sandi said, prednisone will cause anxiety and all kinds of weird effects. I had to take 10mg recently and felt like I was jumping out of my skin. Never stop prednisone abruptly- you probably know that.

Hope you can find a doctor that you trust and get on with. I left my first doctor because he was a tyrant. Loved my second hemo, he was wonderful- so yes look around.

When I was on Promacta 50mg I had brain fog and a certain disconnectedness. I had memory lapses and forgetfulness- often walked into a room couldn't recall why I was there. Once driving on a very familiar road I suddenly didn't know where I was. I couldn't remember where I had been either, so couldn't figure it out. I kept driving for a minute until I saw a familiar landmark and it all came back to me. I didn't connect it to Promacta until I read on this forum that someone had brain fog so bad that she had to quit Promacta. I quit Promacta that day and in 24hrs my mind had so much clarity- my thinking and memory was so sharp. It was amazing the difference!

I tried Nplate next and have had no side effects of that kind, my mind seems really clear on it. Good luck on finding your answer to ITP!
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10 years 1 month ago #51206 by Pedrothelion
Replied by Pedrothelion on topic Stopping promacta abrubtly because of side effects
Thanks. I feel much better off the promacta. Like on it I was just frozen I didn't know what to saybor really who I was. I tolerate steroids pretty well and it may be a combination of the two but the steroids alone have yet to cause many side effects. I have mild tremors in my hand and i got back acne, other than that I feel confident and happy.
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10 years 1 month ago #51207 by Pedrothelion
Replied by Pedrothelion on topic Stopping promacta abrubtly because of side effects
I did try and page the doctor on call to discuss but they never got back to me. I usually would not do this without talking to them but I've just had enough. This drug is not going to work for me. I will try anything and everything except removing my spleen before trying it again. And i'm optimistic that its going to go away.

Is it extremely rare for ITP to go into remission after 6 months?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 1 month ago #51209 by Sandi
Remission after six months can occur if you are on treatments that are known to cause remission. I'm not sure which drug caused your high counts, so i couldn't tell you if remission is likely. If IVIG were the cause, it would not induce remission.
  • DJM
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  • I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.
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10 years 1 month ago #51211 by DJM
I've been on Promacta and Prednisone for months. Changing my treatment plan and had IVIG last week to pull my count up and stopped Promacta totally. Tomorrow I start Rituxan. I've felt like a mental mess but think it's the prednisone.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 years 1 month ago - 10 years 1 month ago #51212 by mrsb04
I'm sure it will be. Never ever so bad as when on Prednisolone.
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9 years 11 months ago - 9 years 11 months ago #51851 by edselkidd
I've been on promacta 50mg for almost a year now. I have such horrible side effects, as most people have described. I have adjusted my dosage to M/W/F plus one. platelet counts are around 34,000 at this dosage, when I added another promacta, platelets jumped to 60,000 but side effects increased. even at the lower dosage I suffer from side effects that interrupt my life so much I am unable to enjoy it any more. I plan on continuing to lessen my dosage. I am also on prednisone 10mg for several years now. The combination of both medications effect me so much, it makes it difficult to enjoy life or even work. Has anyone used any other medications with less side effects, maybe considering Nplate. What is IVIG?? Was diagnosed with ITP about 2 years ago my quality of life has suffered so badly. A spenectomy is not an option as my spleen is fine. The Lymphocytes in my bone marrow are destroying my platelets, so some kind of medication is my only option, hopefully with less side effects
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 11 months ago #51853 by Sandi
Could you try 25 mg daily and see if that makes a difference? If not, trying N-Plate would make sense.

IVIG is a very temporary ITP treatment. It's an IV that takes about 6 to 8 hours to infuse and lasts a few days or weeks.
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9 years 11 months ago - 9 years 11 months ago #51856 by edselkidd
Thank you for the information I have done a few other IV treatments all have been temporary. I was unaware that promacta was also available in 25mg, i'm surprised my Dr didn't suggest the lower mg when I told him about the horrible side effects I was experiencing. So the next refill on promacta I will get him to give me the 25 mg. Thanks again !! Hopefully I will also be able to get off the prednisone as well !!
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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9 years 11 months ago #51858 by EmilyK
It also comes in 12.5 mg pills. I am on 12.5 daily. Other than some occasional nausea, I have been fortunate not to have any side effects. The prednisone might also be the culprit for your side effects. Good luck.
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9 years 11 months ago #51865 by Margaret k
I agree that your symptoms are more likely to arise from the steroids rather than the Promacta. I felt awful on steroids but fine on Promacta . It worked for me for 2 years then the effect tailed off. I had no symptoms when I stopped it after being on max dose but I had terrible withdrawal symptoms tapering off steroids. Try to get Nplate next. I feel sorry for you having such poor medical care. You need to emigrate to Aberdeen, Scotland.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 11 months ago #51867 by mrsb04
Steroid withdrawal is awful, I'm going through it at the moment.