Fatique and ITP

Fatique and ITP 5 years 5 months ago #60845

Moe1327 Offline Posts: 32 Thank you received: 0	I am due for another round of IVIG on Thursday and Friday, but yesterday I have been feeling very tired, body is sore, and feeling dizzy. Not sure if this has anything to do with ITP. I've been newly diagnosed and treated for ITP about 3 months ago. Can anyone tell me if there are symptoms of ITP besides bleeding and bruising.
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Fatique and ITP 5 years 5 months ago #60847

D.Mann Offline Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone. Posts: 224 Karma: 3 Thank you received: 18	I have noticed when my counts are low that my legs ache and I do get tired easier. What other medications are you on? Steroids can have some pretty bad side effects for some people. I have had IVIG many times and I am usually tired the day of the infusion but normal the following day. ITP symptoms that I experience are: bruising, bleeding, blood blisters in the mouth, and red spots on my legs.
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Fatique and ITP 5 years 5 months ago #60850

Moe1327 Offline Posts: 32 Thank you received: 0	I'm not on anything else but the IVIG treatments. I'm due to IVIG on Thursday and my platelet level has dropped to 105, I know that number is pretty good, but I haven't felt this tired since being diagnosed.
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Fatique and ITP 5 years 5 months ago #60854

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2371	Maybe you're getting sick or something? I only felt tired during steroid use or when counts were really low.
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Fatique and ITP 5 years 5 months ago #60855

mrsb04 Offline 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. Posts: 2089 Karma: 7 Thank you received: 602	I'm often tired. I get waves of fatigue more frequently when my count is below 50. If it goes below 30 I am constantly tired.
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Fatique and ITP 5 years 5 months ago #60935

Kelirae24 Offline I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004 Posts: 313 Thank you received: 38	I've read articles where the day fatigue is linked to itp but who knows sometimes were just tired for other reasons. I know for me if I'm above 90 I feel horrible and drained my dr thinks I'm crazy but I've had itp for 14 years and I know how I feel lol when my counts are low (5 or under) I feel the same as if I was at 20-60 my favorite numbers
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Fatique and ITP 5 years 5 months ago #61021

Fitjoanne17. Offline I was diagnosed with ITP during the summer , I also had ivig treatment , im now currently on prednisone steriods , and go too the hospital every second tues to have bloods , its been a tough year for me , but I have no one too talk too about platelets.. Posts: 4 Thank you received: 0	Hi , im new to this , im currently dropping my steriods 10mg every 2weeks .. I started with 90mg .. now today I started 40mg , im quiet tired and very moody .. are u still on them and how do u feel . Thanks joanne
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Fatique and ITP 5 years 5 months ago #61024

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2371	Steroid tapering can cause fatigue and moodiness. It may get worse until you are off of the drug for a few months.
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Fatique and ITP 5 years 5 months ago #61025

Fitjoanne17. Offline I was diagnosed with ITP during the summer , I also had ivig treatment , im now currently on prednisone steriods , and go too the hospital every second tues to have bloods , its been a tough year for me , but I have no one too talk too about platelets.. Posts: 4 Thank you received: 0	Im not really sleeping at night either , I think crazy stuff .. I taught once I finished the steriods it would take few weeks maybe too get bk too myself . My face is so round too
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Fatique and ITP 5 years 5 months ago #61027

Moe1327
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Posts: 32
Thank you received: 0

My doctor hasn't put me on any steroids, I've only been doing the IVIG infusions. I just had IVIG last week and my platelets have now dropped to 80. They have been going down instead of up, so I guess the IVIG is not working? I did have a bone marrow biopsy that came back negative, but he did say there was some cell damage and they had suggested a Jax2 blood test. Dr. doesn't think it's necessary. Anyone have experience with any of this?

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Fatique and ITP 5 years 5 months ago #61029

Fitjoanne17. Offline I was diagnosed with ITP during the summer , I also had ivig treatment , im now currently on prednisone steriods , and go too the hospital every second tues to have bloods , its been a tough year for me , but I have no one too talk too about platelets.. Posts: 4 Thank you received: 0	I also had ivig too, and my platelets dropped below 16 , so it doesint work for along time , its really a quick fix if your really really low , I didn even get 3weeks out of it , so thats y im on steroids now . So this is the 2nd step. Then they will monitor me without tablets every week to see how my platelets go ..
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Fatique and ITP 5 years 5 months ago #61033

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
Posts: 12436
Karma: 11
Thank you received: 2371

If a treatment causes counts to go up, it worked. That doesn't mean counts will stay up. IVIG is pretty much a rescue treatment, meaning that it can get a person out of the danger zone, but IVIG does not cause remission. It's a band-aid. Most people only get a few weeks out of it so it is not a good long-term treatment. It's great if you need a surgery or have bleeding issues. All of the treatments work differently and are designed to do different things.

Joanne - the side effects will go away as the dose is lowered.

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Fatique and ITP 5 years 5 months ago #61035

Fitjoanne17. Offline I was diagnosed with ITP during the summer , I also had ivig treatment , im now currently on prednisone steriods , and go too the hospital every second tues to have bloods , its been a tough year for me , but I have no one too talk too about platelets.. Posts: 4 Thank you received: 0	Thank u for your reply.. I just cannot wait too be finished the steriods as they dont make me feel good .
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Fatique and ITP 5 years 5 months ago #61036

jayinchicago Offline Posts: 188 Karma: 1 Thank you received: 17	My experience is decent physical exercise regimen will overcome many of the side effects of these drugs. I do strength training for30 minutes and running for 30 minutes for 5 days a week, I was on 80mg prednisone for 3 months. I had some side effects but I believe exercise helped me a lot to cope with it. With NPlate it is back to normal for me, I have zero side effects.
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Fatique and ITP 5 years 5 months ago #61098

kae0603 Offline Posts: 29 Thank you received: 3	First, hello and nice to meet you. I am a newbie here. Wondering what steriod you are on. I am on 2 of 4 days on dexamethasone (20mg) and I feel AMAZING! Granted, I get my blood drawn again tomorrow so not sure if they are doing their job yet but it just feels good to feel good for a change!
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