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pain

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13 years 4 months ago #25440 by djja
pain was created by djja
i am still on 80mg of prednisone and feel awful. i am in constant pain esp my knees and fatigued. i can barelly function some days. is this from the prednisone or itp?
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13 years 4 months ago #25442 by wishfuldreamer04
Replied by wishfuldreamer04 on topic Re: pain
i'm not on any medication but i do know that i feel very fatigued due to my itp, especially the lower they begin to drop the more fatigued i feel...ocasionally i also get back pains too
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13 years 4 months ago #25444 by KittieG
Replied by KittieG on topic Re: pain
I'm no expert, but the general thought is that ITP can cause fatigue, but I've never heard about itp causing the knees hurting. I do know that higher doses of steroids can cause joint pain.

Honestly I'm surprised you feel fatigue with 80 mg of prednisone. Most of us feel pretty zany on that high of a dose.
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13 years 4 months ago #25445 by Dean
Replied by Dean on topic Re: pain
Well, ITP is known to cause fatigue. I experienced fatigue. Platelets carry Serotonin which affect the approximate 40 million brain cells in our body. Mood, sexual desire and function, appitite, sleep, memory and learning, temperature regulation and some social behavior. As far as body function, Serotonin affects, cardiovascular system, muscles and various elements of the endocrine system. An imbalance in Serotonin levels can also influnence mood which can lead to depression. How long have you been on Prednisone and what doses for periods? Prednisone can cause you to retain fluid, causing swelling in the lower legs. One thing I hated while on Prednisone was my loss of taste. Prednisone can affect us all differently. I did not have much energy from being on Pred either. Prednisone is not a long term treatment for ITP. It will only sustain counts as long as you are on it and being on it long term is not good. Have you had any other treaments for ITP?
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13 years 4 months ago #25446 by Ann
Replied by Ann on topic Re: pain
Prednisone can definitely cause knee pains but they were usually worse for me when tapering. My knees didn't feel like they belonged to me then, they just felt very weird.
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13 years 4 months ago #25457 by djja
Replied by djja on topic Re: pain
thanks everyone... i did do the gama guard and now am tapering off of the prednisone. anyone else have the lupus testing come back negative and later on be positive. i am in pain all the time and have days i can barely function.
  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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13 years 4 months ago #25461 by Kim
Replied by Kim on topic Re: pain
The pain is probably the steroid taper.

In answer to your question on negative lupus tests, going positive later - yes, that can certainly happen. Although, I'd give yourself time to taper the steroids and then a few more months. If you're still experiencing pain, have it investigated. If you're going up and down on steroids, to manage your ITP -- it will be a long road. Some people have more steroid taper symptoms, then other might have. Some experience such excruciating pain, they can't walk and are very miserable. Hang in there -- the tapers are miserable.
  • 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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13 years 4 months ago #25462 by Sandi
Replied by Sandi on topic Re: pain
Most people feel better on high dose steroids because it is a great anti-inflammatory. When the taper starts, that's when the pains usually hit.

As for Lupus tests being positive at a later date - yep. Mine were all good when I was first diagnosed with ITP, then 8 years later I did have elevated results that pointed to a Lupus diagnosis.

Kim is right though - you'd have to get off of the steroids to really know what is going on. Prednisone can cause Lupus antibody tests to be normal because it is an immunosuppressant.
The following user(s) said Thank You: djja
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13 years 4 months ago #25475 by wishfuldreamer04
Replied by wishfuldreamer04 on topic Re: pain
my lupus and rheumatoid arthritis tests were both negative at first and are now positive also, not really sure what to make of it :unsure:
The following user(s) said Thank You: djja
  • 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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13 years 4 months ago #25493 by Sandi
Replied by Sandi on topic Re: pain
Some autoimmune disorders take time to develop. It took me at least two and a half years before I had enough criteria for a Lupus diagnosis. Various blood work results slowly went positive as time went on.
The following user(s) said Thank You: djja