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Marcelle and Keith
1 Posts |
 Posted - 23 Sep 2007 : 2:56:46 PM
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I was just trying to find out if anyone has bilateral pain in the feet, ankles, shins, forearms, wrists and hands. My husband has ITP (2 yrs) was just diagnosed with avascular necrosis (bone death)of the hips caused from 2 months of steriods (Sep 2005- Nov 2005)used to control the ITP. Tested negatine for avascular necrosis in lower leg and ankles. His pain is almost unbearable at times in his shins and lower leg. Negative for RA and Lupus. B-12 levels are good.Is this kind of pain normal with ITP?? He has enlarged red blood cells for a long time now not sure if it has an association with the pain. Any input would be very appreciated.
Sincerely,
Marcelle
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lynnrhodes
USA
29 Posts |
Posted - 23 Sep 2007 : 9:10:02 PM
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I have burning in both my feet and hands, the bottoms mostly. Sometimes my feet cramp and the toes curl. The hema says it's not ITP, and my primary care thinks it's an old injury in my back, two epidurals(sp) haven't helped though. I had carpel tunnel surgery in my hands years ago. This feels similar, but it is different. Sometimes I wake with just the tips of my fingers numb. It is getting worse, no longer burning, out right pain. I was on steroids for 3-4 weeks, that is when I first had horrible feet pain. Fortunatly it was only a day and the dr took me off the prednisone.
Please keep posting here, I am very interested in what you might learn.
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karenr
USA
283 Posts |
Posted - 23 Sep 2007 : 9:54:15 PM
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Marcelle, how much pred was your husband taking during those two months? Has he not used prednisone since then? Does he take anything for the ITP now? What are his usual platelet counts?
I've not heard of the kind of pain you describe being associated with ITP, but perhaps someone else has. Quite a few people write about joint pain, but not pain in the shins and forearms.
Karen R |
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chot
Australia
1012 Posts |
Posted - 24 Sep 2007 : 12:08:17 AM
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Hi marcelle, trevor has had the burning /tingling sore feet which was from nerve damage from vincristine, he too has avn of the hip from steroids, needing replacement but cant have it as his count site on 10 no matter what we do. What is your husbands count and how is he going to tackle the hip problem, predisone has a lot to answer for doesnt it.regards cathy
"hope is a rope on which i swing thru life"
wife of trevor,chronic refractory itp.splenectomy gave remission for 30 years, now back with avengance..
unresponsive to pred,dex,imuran,ivig,dapsone,danazol,vincristine,rituxin,transexamic acid,etc some response to get well herbs.counts at 0 for 18 months, now around 10k.now has avn of the hip needing replacement, |
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CindyL
Canada
3936 Posts |
Posted - 24 Sep 2007 : 03:02:08 AM
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Lynnrhodes, Carpal Tunnel Syndrome can come back, so it the tips of your fingers are tingling, it might be back. I had both my hands done a few years ago, too.
Have a great day.
If you love somebody, tell them. Cindy |
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Sandi
USA
23038 Posts |
Posted - 24 Sep 2007 : 06:48:11 AM
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Marcelle:
I don't think it's ITP related. I have Lupus and have had those symptoms, even before my bloodwork was positive for any of the rheumatological tests. I'm not saying that he has Lupus, but he should be monitored by a rheumatologist.
For the rest of you - burning and tingling could be a sign of neuropathy. It would be a good idea to see a neurologist and have a work-up.
Latest count 265,000(8-14-07).
*************************
Sandi
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jef
USA
736 Posts |
Posted - 24 Sep 2007 : 09:49:43 AM
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The a vascular necrosis is hugely painful. My 95 yr old Mama had it, and she was a trooper. She could not have a hip replacement because of her age.
The kinds of shin and leg pain I have had seemed to occur with a Prednisone taper. We are being very careful with this one. I did consult with a rheumatologist, and also tried som physical therapy..not for exercise as much as for electrical stimulation and ultra sound treatment on the muscles.
Good luck. Keep making your symptoms known, and asking for some remedy.
diagnosed 1/07
up to 105,000 in June '07 and then quickly down to 60.
July '07 30,000 and back on prednisone |
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senjapet
USA
223 Posts |
Posted - 03 Oct 2007 : 5:29:16 PM
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The only times I had those kinds of pain is in severe anemia, during a long inflammation, probably of bacterial kind. Unfortunatelly previous period was on very heavy side and long.
I was given iron and bone pain resolved. But the serum iron and bone marrow shortly after the iron administration still showed anemia deficiency, so my layman's assumption is that the bone pain comes from marrow attempting to absorb all the iron it can to produce the blood cells required. I have not felt the pain like that before or since and my ITP is mild and never required treatment.
The chemo patients who take drugs to stimulate bone marrow's production of RBC report similar pains. Enlarged RBC may correlate to a form of anemia.
I hope it has been dealt with and Keith is fine.
I keep trying to figure it out so that I can fix it. Yes, I'm a nerd. |
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