Medical Forum / Diseases and Disorders / Arthritis / May 2005
Joint pain and hotness that ebbs, returns, and moves to different joints
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spodosaurus - 16 May 2005 08:20 GMT Hi all,
I'm hoping to get some feedback from the folks here who have experienced, or know someone who has experienced, something similar to what is happening to me now (and for the last 4 months). Before I describe it I should let you know that aside from the aplastic anaemia and the side effects of the treatment for it, I do not have any blood work that would account for what is happening.
It started out four months ago as pain in the middle three toes of each foot and only at the first metatarsal/phalanges joints. Then it spread into the right heel and the left ankle (though the left ankle already has serious problems, with near full collapse of the talar dome from osteonecrosis and poolry healed tendon and ligament damage). Next it spread into both knees, with the right knee being worse (about 6 weeks ago we found more 'subclinical' osteonecrosis in the right proximal tibia below the knee joint, but that pain I'm experiencing feels like it's in the joint itself over the cartilage). Then it spread to both index fingers and my left elbow and wrist (MRI found some osteonecrosis in part of the lunate bone in the left wrist).
The pain seemed to subside a bit after about a month. Then my lumbar spine started hurting, deep into the bones and around the facet joints between the vertebrae. An MRI showed patchy marrow signature, but I don't think this is unexpected with aplastic anaemia and the treatment I'm on. We're following this up. However, there was no osteonecrosis or any other reason for the pain that was visible on this MRI (and the radiologist took a good look, too, and wants more information about my medical history: he's fascinated by the patchy marrow signature). This pain was VERY bad. Then, after 2-3 weeks, it started to ease. The pain in the toes, right heel, and both knees was still there, but less severe now.
Unfortunately, the pain moved to the right sacroiliac joint and was quite severe. An x-ray showed some signs of long term stress to the joint (probably from my odd walk due to the collapse of the left ankle), and I'll find out the results of a bone scan tomorrow, but the pain came on suddenly and for no apparent reason, not slowly over time. I could stand, but not lean over even slightly. Once standing, I was pretty much okay. But standing up from a seated position was intensely painful. Laying down in bed or sitting up fram a laying position hurt even worse. The pain from rolling over at night while I slept was quite bad and ALWAYS woke me. Then, it started to ease after a month.
Now, my toes on both feet, both of my elbows, and both of my knees are hurting quite badly. The joints feel hot to the touch, and I've been running a low grade fever for a while now (37.5 C). I was wearing a wind-breaker jacket one day, and when my wife touched my arm at the elbow she was surprised to feel the heat coming through the coat...but only at the elbow. The joints feel inflamed and even a little pressurised. There's a slight rubbing/grinding feeling in the elbows when the pain gets worse. The right SI joint has started becoming slightly more painful again, and facet joints in the lumbar spine are hurting again now, too.
I really don't know what the heck is going on, but the pain is wearing me down and restricting my movements (more than they already are). I cannot take any opiate based painkillers as they cause side effects that could potentially cause greater health problems, and panadol (tylenol) doesn't help the pain (and it's not the greatest thing to be stressing my already stressed liver with). We're thinking about starting me back on celebrex, but I'd like to know what the heck is going on before we treat the problem! I'm used to osteoarthritis from known causes, but this is something new to my experience.
Based on the pattern of symptoms and the lack of evidence for a cause (seronegative for rheumatoid factor), does anyone have any idea what this might be?
TIA,
Ari
 Signature spammage trappage: replace fishies_ with yahoo
I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/
Harvey R. Stone - 16 May 2005 13:19 GMT > Hi all, > [quoted text clipped - 66 lines] > > Ari Hi Ari, I started to say gout but this has gone wayyy beyond what gout does and you have seen an RD sooooooooo,,,, I can certainly see why you would be scratching your head. I can only tell you what I would do. I would ask my RD for a 75=100mg steroid shot in my butt to see if anything changes. I keep a prescription of prednisone for surprises my RA throws at me every now and then. I have just used 15mg-3 pills yesterday to see if my lungs would clear up a little. I am back to taking my Enbrel shots everyweek because my shoulders started to be an everyday problem. Everything we do is connected to something else. You did not say what medicine you take Ari. Harv
spodosaurus - 16 May 2005 14:25 GMT >>Hi all, >> [quoted text clipped - 69 lines] > Hi Ari, I started to say gout but this has gone wayyy beyond what gout > does That was my first thought, and my RD's first thought, too. The anabolic steroids can increase my uric acid levels. However, my tests were in the middle of the normal range for these.
> and you have seen an RD sooooooooo,,,, I can certainly see why you > would be scratching your head. I can only tell you what I would do. I > would ask my RD for a 75=100mg steroid shot in my butt to see if anything > changes. I have to be careful with prednisone as I'm already immunosuppressed with cyclosporine, and pred makes me VERY prone to fungal infections (a place I do not want to revisit). We'll probably try celebrex again first, but I'm hesitant because of some strangeness in my platelet count (probably coincidental) when I went off celebrex last year.
> I keep a prescription of prednisone for surprises my RA throws > at me every now and then. I have just used 15mg-3 pills yesterday to see [quoted text clipped - 3 lines] > medicine you take Ari. > Harv The pain isn't as bad as the serum sickness I had following T-cell ablation therapies. In those instances, I ended up unable to move or even speak without 125mg of pred daily until the reaction eased.
I'm taking a buttload of medicine! (I guess 'a mouthful' would be a more accurate expression, but several of these pills look like they should be used as farm animal suppositories by the size of them!) There are more that I'd like to take (and my doctors would like me to be able to take), but either my marrow won't tolerate them or they stress other organ systems, so I get by on the minimum. These include: deca durabolin, cyclosporine, fluconozole, neupogen, somac, desferal, etc.
Ari
 Signature spammage trappage: replace fishies_ with yahoo
I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/
Harvey R. Stone - 16 May 2005 14:48 GMT There are more
> that I'd like to take (and my doctors would like me to be able to take), > but either my marrow won't tolerate them or they stress other organ > systems, so I get by on the minimum. These include: deca durabolin, > cyclosporine, fluconozole, neupogen, somac, desferal, etc. > > Ari Whewww, I am going to be honest with you Ari. In my mind you and Diane W are in the same class. I do not know if you should take anyones advice because your condition is so serious and complicated that my only advice would be for your to get your doctors heads together and Expect help,,,, Keep them informed about all of it. It could one of your medicines or the combo of two or more prescribed by more than one doctor. I also wish you good luck with it all and please do not let this go on and on. Things can get worse. Harv
ps Sorry, to be such a downer.
spodosaurus - 16 May 2005 15:21 GMT > There are more > [quoted text clipped - 16 lines] > > ps Sorry, to be such a downer. No worries, Harv, it's good to get a response. My doctors communicate fairly well locally. I've found, though, that investigating other possibilities can sometimes improve my care or at the very least improve my understanding of different treatments that do not apply to me. If I get an idea from research or from other people's discussions (there are aplastic anaemia mailing lists) I can gather the information from the medical journals concerned, familiarise myself with the information (my background tends to allow me to understand the empirical research), and bring the idea for a new or different treatment approach to my doctors and they are responsive. Right now, one of my questions for my RD tomorrow is going to be about seronegative RA, and idea I was introduced to here on this news group :-)
Ari
 Signature spammage trappage: replace fishies_ with yahoo
I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/
NW - 16 May 2005 15:38 GMT Hi Ari,
No idea if this is what you might have, but some of the things you mention - particularly the sacroiliac joint and lumbar spine pain - as well as the knee, toe and elbow pain sounds like ankylosing spondylitis or some other seronegative(they aren't associated with rheumatoid factor) spondyloartopathy, like psoriatic arthritis with spondylitis, or reactive arthritis. It's pretty common to wake up in the night from the back pain in too and having problems sitting up or standing up.
AS is usually insidious, though, but reactive arthritis can come up quickly after an infection, particularly gut infections. AS usually starts in younger people; late teens - early thirties, and are slightly more common in men than in women. The majority of those with AS are HLA-B27 positive, but those with other spondyloarthropaties are B27-positive to a lesser extent. Some people have normal ESR and CRP despite active inflammation too.
You can check at Spondylitis Association of America's description to see if it feels familiar:
http://www.spondylitis.org/about/main.aspx
spodosaurus - 16 May 2005 15:54 GMT > Hi Ari, > [quoted text clipped - 18 lines] > > http://www.spondylitis.org/about/main.aspx Thanks NW. I'm pretty sure they've checked me years back for HLA B27 and I was negative (sacroiliac injury from powerlifting that didn't heal well), but I'll be sure to ask and ask about the ESR and CRP as well (how much use ESR will be is debatable, as I'm transfusion dependant and none of those cells are my own) but I'm fairly certain that CRP was normal as well. I seem to recall having a mild infection around the time that this started, but then again, my memory is a bit foggy because I was always getting subcutaneous infections from the low neutrophils and the daily subQ infusions of Desferal. The pain came on fast initially, and I may have just thought I was coming down with something and getting increased joint pain as a result.
Ari
 Signature spammage trappage: replace fishies_ with yahoo
I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/
d'huit - 16 May 2005 21:26 GMT ((((((((((ari)))))))))) i'm totally guessing, here, based upon my personal experience which is different than yours, so don't put too much stock in what i am suggesting. just think about it and if it seems possible to you, ask about it. i think it is *possible* that your altered gait has played into this somehow, ari.
i know that, from an orthopedic standpoint, when my gait first changed (because of my car wreck) it threw everything else off and after quite awhile, i started hurting in odd places, where i never hurt before. but, after the lumbar epidurals that caused me to stop limping, after 33+ years of limping, some of the pains i was familiar with on one side of my body shifted to the other side of my body. and on the occassional days when i do limp now, those same pains shift back to the other side again. so, i'm positive these particular pains of mine are all related to my gait.
don't know if that helps you or not ari. but it was just a thought. maybe ask your orthopod if it is possible that these pains are altered gait related?
kate
> Hi all, > [quoted text clipped - 66 lines] > > Ari
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