Hi all, I haven't posted for a while. (computer stuff). well I've had one hell of a spring.
I got new teeth and the day after every joint in my body hurts and I can barely walk or sit or just about any normal activity we do throughout a day!
well, I had mega lab tests, and there were splinter hemorages under my nails so I had an echo cardiogram. rhumatologist diagnosed me with reactive arthritis and put me on prednisone. She had faxed the rx and so I started taking it. well 4 days later I thought I was dying (Memorial week). my fingers swelled up and burning and itching, so I called the dr. and they said have you been taking the prednisone? How much? I said 40mg day. they said OMG, you're supposed to be on 5 mg day.
I don't know what it is about my clinic faxing over rx's and they get screwed up! but anyway, long story short! OMG!!! the pain in my body was excrutiating. they finallly set me up with a infecious disease specialist, and I gave a lot more blood and cultures and on thurs was diagnosed with cytomegalovirus (CMV). I can barely work, which I'm going to take a leave of absense to REST.
I am so depressed, and crabby...it's like my own body is attacking itself. they think it may have even caused my MC. I can't even be around my grandson Brady which is making me very sad.
they took me off the prednisone, gave me pain meds and I just started PT for the arthritis. I also need to go see an opthalmologist because I have floaters (I call em shards of glass like lightening bolts) and this disease can lead to retina damage, etc. I've had floaters several times in my life, but now I'm getting them every day.
sorry to sound so negative, but I know you guys will make me feel better. My husband Tom wants to maybe go to Mayo for 2nd opinion. I dunno, I may wait to see if I feel better in a month.
you guys ever hear of any of this before? I'm gonna do some searching on your site since I haven't been on for a while. I hope all of you are doing well.
New diagnosis of Cytomegalovirus & also reactive arthrit
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
New diagnosis of Cytomegalovirus & also reactive arthrit
-Kat
Live to Ride, Ride to Live
Live to Ride, Ride to Live
Hi Kat,
I'm sorry to hear that you've been having such a rough time. Though most of us never even knew that we had it, (and probably never even heard of the disease), CMV is actually extremely common, and the majority of us have had it, (50% to 90% of the general population have had it, in most parts of the world).
Have you been taking Entocort, or one of the other immune system suppressants? Normally, only people with compromised immune systems have significant symptoms from the disease. Here are a couple of references, for anyone interested in the details of the disease:
http://kidshealth.org/parent/infections ... virus.html
http://en.wikipedia.org/wiki/Cytomegalovirus
According to the Wikipedia article, Ganciclovir treatment is used for patients with depressed immunity who have either sight-related, or other serious issues. Another drug mentioned is Valganciclovir, which is an oral treatment, (marketed as Valcyte), and there are a couple of other, less desirable drugs available, for resistant cases.
If you're taking Entocort, or any other immune system suppressant, you may need to taper off it, and stop taking it for a while, in order to get rid of the CMV. If you're not receiving any treatment at all, and you're not improving, a second opinion might be a good idea, from a treatment standpoint, though an ophthalmologist certainly might be able to help with the vision issues.
Incidentally, the CMV is also probably the source of your arthritis. If you can get the CMV under control, then all these satellite issues may no longer be major problems.
http://www.nature.com/modpathol/journal ... 0119a.html
Obviously, the Prednisone was one of the worst things that you could have taken, since it further suppressed your immune system, which gave the CMV free reign to run amuck, and really get out of hand. In retrospect, Prednisone was a very unfortunate treatment choice to begin with, and then the dosage mistake compounded it, to really magnify the problems - a classic example of how Murphy's law can really bowl us over, when things start to go wrong.
I hope you can get this under control, so that you can get on with your life.
Tex
I'm sorry to hear that you've been having such a rough time. Though most of us never even knew that we had it, (and probably never even heard of the disease), CMV is actually extremely common, and the majority of us have had it, (50% to 90% of the general population have had it, in most parts of the world).
Have you been taking Entocort, or one of the other immune system suppressants? Normally, only people with compromised immune systems have significant symptoms from the disease. Here are a couple of references, for anyone interested in the details of the disease:
http://kidshealth.org/parent/infections ... virus.html
http://en.wikipedia.org/wiki/Cytomegalovirus
According to the Wikipedia article, Ganciclovir treatment is used for patients with depressed immunity who have either sight-related, or other serious issues. Another drug mentioned is Valganciclovir, which is an oral treatment, (marketed as Valcyte), and there are a couple of other, less desirable drugs available, for resistant cases.
If you're taking Entocort, or any other immune system suppressant, you may need to taper off it, and stop taking it for a while, in order to get rid of the CMV. If you're not receiving any treatment at all, and you're not improving, a second opinion might be a good idea, from a treatment standpoint, though an ophthalmologist certainly might be able to help with the vision issues.
Incidentally, the CMV is also probably the source of your arthritis. If you can get the CMV under control, then all these satellite issues may no longer be major problems.
http://www.nature.com/modpathol/journal ... 0119a.html
Obviously, the Prednisone was one of the worst things that you could have taken, since it further suppressed your immune system, which gave the CMV free reign to run amuck, and really get out of hand. In retrospect, Prednisone was a very unfortunate treatment choice to begin with, and then the dosage mistake compounded it, to really magnify the problems - a classic example of how Murphy's law can really bowl us over, when things start to go wrong.
I hope you can get this under control, so that you can get on with your life.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
thanks for all your information. I realize that almost all folks have the CMV that is not active.
the specialist told me that it is responsible for my sudden reactive arthritis (which I didn't know was a real thing!). really the only symptom of CMV I seem to have right now is the exhaustion and a sore throat with a little cough.
I didn't know however, that the prednisone would not be a good treatment choice. so, right now I am on no steroids at all. only pain meds.
I am just in so much pain from the RA, and they tell me that it is a long recovery and could possibly turn into rhumatoid arthritis. ugh!
In searching the site last night, I found your post about your eye floaters. what did you finally figure? was it stress related? I've heard that those O-migranes can be stress related also.
take care Tex, and thanks for your kind words.
thanks for all your information. I realize that almost all folks have the CMV that is not active.
the specialist told me that it is responsible for my sudden reactive arthritis (which I didn't know was a real thing!). really the only symptom of CMV I seem to have right now is the exhaustion and a sore throat with a little cough.
I didn't know however, that the prednisone would not be a good treatment choice. so, right now I am on no steroids at all. only pain meds.
I am just in so much pain from the RA, and they tell me that it is a long recovery and could possibly turn into rhumatoid arthritis. ugh!
In searching the site last night, I found your post about your eye floaters. what did you finally figure? was it stress related? I've heard that those O-migranes can be stress related also.
take care Tex, and thanks for your kind words.
-Kat
Live to Ride, Ride to Live
Live to Ride, Ride to Live
Hi Kat,
Regarding your floaters and flashers … a high percentage of people experience these things called “floaters” which are the small specs in the visual field, or “flashers” which are sudden transient flashes of light in the visual field. Most commonly these annoying things begin to occur somewhere after the age of 40.
While they mostly are not serious, in a small number of cases when a person experiences sudden bursts of flashers, and/or a suddenly increased number of floaters, that might (and I emphasize the word MIGHT) be a symptom that the retina is experiencing a tear.
A small early retinal tear is fairly easily dealt with by an office laser procedure. However, if a retinal tear is not fairly quickly diagnosed, and progresses on to become a detached retina … the fix (a Retinal Reattachment) is a much larger deal.
In my case, the couple of times I have had these experiences, the Opthamologist office where I go always wants to see me within a day or two. It’s an easy quick exam. When it comes to our eyes, better safe than sorry is the mantra.
My Best,
Gayle
Regarding your floaters and flashers … a high percentage of people experience these things called “floaters” which are the small specs in the visual field, or “flashers” which are sudden transient flashes of light in the visual field. Most commonly these annoying things begin to occur somewhere after the age of 40.
While they mostly are not serious, in a small number of cases when a person experiences sudden bursts of flashers, and/or a suddenly increased number of floaters, that might (and I emphasize the word MIGHT) be a symptom that the retina is experiencing a tear.
A small early retinal tear is fairly easily dealt with by an office laser procedure. However, if a retinal tear is not fairly quickly diagnosed, and progresses on to become a detached retina … the fix (a Retinal Reattachment) is a much larger deal.
In my case, the couple of times I have had these experiences, the Opthamologist office where I go always wants to see me within a day or two. It’s an easy quick exam. When it comes to our eyes, better safe than sorry is the mantra.
My Best,
Gayle
Kat,
I hear you, about the RA pain. I'm having to deal with that too. It was a serious problem for me, back when I was reacting, but after I cut out gluten, (and a bunch of other things), it sort of went into remission, too. During the past year, it seems to be on the upswing again, and it's been pretty bothersome, lately, especially in my hands. I've never tried to treat it, though - I've just been trying to ignore it, and hoping that if I continue to work, the exercise will help to slow down the development. The pain is always there, though - it just gets worse, at times. I suspect that dairy products can cause it, also, but I haven't been able to tell much from the short-term tests that I've done. I need to locate a source of Almond Dream, (almond milk), and then avoid dairy for at least six months to a year, to see if I can get a handle on this. I haven't even found a place to order it online. Hemp milk sort of works, but it causes bloating for me, (and a few other members who have tried it), so that's probably not a good sign.
The auras that I had a few weeks ago, were not really floaters - they were classic scintillating scotomas. It's possible that the episode might have been stress-related, but I haven't been under anything more than minor stress, lately, so it's difficult to pin down just exactly what might have triggered it. I do occasionally have a floater or two, now and then, though, but I never thought of them as being related. Now that I think about it, I don't recall seeing any floaters at all, since the day I had those two scotoma events. Maybe they are related, and the auras somehow cleared out the floaters, for a while. Probably, though, the fact that I haven't seen any floaters since then, is just a coincidence.
I agree with you, (and Gayle), that it would be a good idea for you to see an ophthalmologist soon, just to be on the safe side. I need to schedule an appointment, too, since it's been a while since my last one, and I've had a condition known as drusen, for decades.
You're most welcome, and I hope you start seeing some improvement soon.
Tex
I hear you, about the RA pain. I'm having to deal with that too. It was a serious problem for me, back when I was reacting, but after I cut out gluten, (and a bunch of other things), it sort of went into remission, too. During the past year, it seems to be on the upswing again, and it's been pretty bothersome, lately, especially in my hands. I've never tried to treat it, though - I've just been trying to ignore it, and hoping that if I continue to work, the exercise will help to slow down the development. The pain is always there, though - it just gets worse, at times. I suspect that dairy products can cause it, also, but I haven't been able to tell much from the short-term tests that I've done. I need to locate a source of Almond Dream, (almond milk), and then avoid dairy for at least six months to a year, to see if I can get a handle on this. I haven't even found a place to order it online. Hemp milk sort of works, but it causes bloating for me, (and a few other members who have tried it), so that's probably not a good sign.
The auras that I had a few weeks ago, were not really floaters - they were classic scintillating scotomas. It's possible that the episode might have been stress-related, but I haven't been under anything more than minor stress, lately, so it's difficult to pin down just exactly what might have triggered it. I do occasionally have a floater or two, now and then, though, but I never thought of them as being related. Now that I think about it, I don't recall seeing any floaters at all, since the day I had those two scotoma events. Maybe they are related, and the auras somehow cleared out the floaters, for a while. Probably, though, the fact that I haven't seen any floaters since then, is just a coincidence.
I agree with you, (and Gayle), that it would be a good idea for you to see an ophthalmologist soon, just to be on the safe side. I need to schedule an appointment, too, since it's been a while since my last one, and I've had a condition known as drusen, for decades.
You're most welcome, and I hope you start seeing some improvement soon.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.