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trouble with my job over my Itp pleas help. 9 years 8 months ago #31678

  • DeeDee Marie
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Your platelets aren't doing so bad. But, mentioning all the problems with your hips isn't so good. Does your doctor have any idea what might have caused these problems? Is it a side affect of the Rituxan?

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31705

  • 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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He ran a test for RA which came back neg. He didn't tell to take the rx he said if i need pain meds since I'm over 50k I can take anything that I needed too, just like the family doc. I don't need an rx for 1 tab every blue moon it would expire before i could take them all.


Come again? Back pedaling?

Have they done an ANA by any chance?

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31707

  • eklein
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Amber, what exactly is wrong with your hips? Have you received any kind of diagnosis? I think it might be time for a second opinion. Maybe it's bursitis? I've had that, ouch.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31723

  • Melinda
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.... - bursitis, arthritis, an ITP med [not ITP], hairline fracture, whatever, but don't let him blame it on ITP just because ITP you happen to have.


Yeah, Erica that's what I said too.

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31742

  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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RA Rheumatoid Arthritis test, and I have seen ANA before will have to check my blood work out. But I'm sure he did that is why I remember it.

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31743

  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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Since the treatments my hips have gotten worse. I have no diagnosis for my hips and the lack of circulation in my limbs mostly when legs are crossed or arms are bent for a period of time. The doctor said it has nothing to due with I.T.P. But it wasn't like this before I got diagnosis and the treatments.??

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31745

  • 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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I'd stop talking to the hemo and consult a Rheumatologist. Being cold and having hip pain is not common for ITP. Could be a steroid withdrawal side effect depending on how long it's been since you've taken them.
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trouble with my job over my Itp pleas help. 9 years 8 months ago #31746

  • amberyard
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Last time I was on Pred for ITP was 7/2012 (top dose was 100mg daily). I was on Pred for URI/allergies in 1/2013 the top dose was 20 twice daily for 10 days. But I will looking into a Rheumatologist, but yes I just can't get warm (at work I have my own heater which sometimes just doesn't cut it). Thanks for all the information

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31749

  • 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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I was the same way, had a space heater in my office. No one could stand to be in there. I slept with an electric blanket on 10. Intolerance to cold could be thyroid or an autoimmune disorder. One of my first Lupus symptoms were hips that hurt like heck. I couldn't sleep on either side. Then it moved to shoulders, then elbows, etc.....but went weeks at a time with each one.

Not saying you have Lupus, it could be any number of things. Usually though, autoimmune disorders like RA and Lupus tend to be symmetrical.

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31752

  • DeeDee Marie
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Sandy,
How long after having Rituxan did your Lupus symptoms start up? Also, did the hip pain go away after a while and then move to your shoulders? Sometimes it's hard to tell what we have, especially lupus is hard to diagnose. Doesn't RA show up in a blood test? I should probably get another RA test, too, as my shoulder is always hurting and also my arm. Of course, I use to type from 20-40 pages a day for some years.

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31755

  • 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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DeeDee:

After the second serum sickness reaction, the Lupus symptoms started right away. I was put on Prednisone for serum sickness (8 years ago) and never got off of it. Too much inflammation. It all started slowly. I had a lot of muscle pain during serum sickness, like when you have the flu and work out too hard, both. It never went away. Then I started to feel like I had the flu for a week or so every four to six weeks (fever, fatigue, malaise, cold intolerance, etc.) That went on for about a year and then I started seeing a Rheumotologist. Blood work did not show much as far as Lupus except for an elevated ANA and SED rate. Then the joint pain started like I described above. I think that's when I knew the diagnosis was coming...it was symmetrical and moved around. When it was in my elbows, I couldn't bend them at all. Six months later I had more elevated blood work that clinched the diagnosis. Then I got neuropathy and the symptoms just keep coming.

I've read that a person can have RA with a negative RF. It's unusual though. I have a supposed RA overlap now, it's in my hands. Joints are swollen and painful. I don't even know if my Rheumatologist has done an RF lately. She keeps prescribing RF meds. I just really don't want to know and it doesn't really matter anyway.

Never hurts to get it checked out.
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trouble with my job over my Itp pleas help. 9 years 8 months ago #31760

  • DeeDee Marie
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Sandy,

Thank you for all the information. You have really been through a lot! And, you worked while going through all of this. I was checking all my blood work records and didn't notice that the doctor ever checked for either one. Do they usually check for ANA or RA when you are in the hospital with ITP?

I know I most likely have arthritis, but I'm going to have the doctor check for the ANA and RA just to see if it is normal or what. I've had an HMO for years and I'm not a big complainer, so the doctors seem to let things slip through the cracks! One year I had such bad pain in my left shoulder (I had Kaiser then) and asked the doctor to take an X-ray and she said that she didn't want Kaiser to waste money taking an X-ray when there was probably nothing they could do!

Hopefully, you will start to feel a lot better and get more rest.

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31764

  • Sandi
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No, I wouldn't say it's standard to do any blood work other than a CBC if a person is in the hospital with ITP. Maybe upon initial diagnosis if counts do not respond, but as a general rule, no.

I think it's sad that the doctor wouldn't order an x-ray for your shoulder. You never know what problems might crop up. I was having a lot of problems with my neck last year, asked my GP for an MRI, and found that I had spinal stenosis. I had a bone spur half way through my spinal cord. Granted, people get pains here and there. My husband gets bursitis in his elbows and takes Aleve for a few weeks, then it goes away. I think most people know when something is really wrong, and in that case, you really have to push for yourself. I tend to ignore a lot of things too, but when it becomes nearly debilitating, I push for answers and help.

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31765

  • eklein
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I was having shoulder problems and my general doctor said 'most women over 40 have rotator cuff injuries so let's assume that's what it is'. I did eventually get to a shoulder specialist - and it's probably rotator cuff injury. The pain comes and goes, and I can't do movements where my arms are raised (like swimstrokes or sleeping with my arms above my head) but other than that I function ok.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31770

  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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Sandi
You are describing everything, it started with my right elbow then both hips and now my right shoulder. Also the always cold so i'm looking into the type of doctor you talked about. I want to say my ANA was elevated and the RA was neg. Shoulder and hips are hurting at the same time and sometime I do have swollen hands and legs. The thyroid test came back normal as well as my kidney test.

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trouble with my job over my Itp pleas help. 9 years 8 months ago #31774

  • DeeDee Marie
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Eklein,

You are probably right about the shoulder injury in my case. I still think I would like the doctor to do a RA (and ANA) blood test just to make sure I'm okay there. I made an appointment for Monday. I can live with the pain if I have to--maybe just take some medication for it once in a while. But, I can't do anything strenuous with my right arm or it ends up huring really bad. I think all women should have one once in a while; but, I couldn't find any records of one in the last 10 years.

Amber,

After having all my Decadron and IVIG treatments 2 1/2 years ago, I, too, was always cold--so cold I had to run the heater right near my bed and would go to bed with my robe on. Finally, I'm feeling a little better and tolerant of the cold. And, I was aching all the time and a little dizzy when standing up. But, I'm starting to do better. I would still get yourself checked out. I would rather know what's going on so you can start researching your problems to try and help yourself.
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