Reactive Arthritis

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october sun
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Date Joined Mar 2007
Total Posts : 12
   Posted 3/22/2007 7:46 PM (GMT -7)   
Hi everyone. I just found this site and need some help. Three years ago on Easter I come down with Parvo B19 virus and could barely walk. My hand were so inflamed and I went to many doctors and they sent me to my rumy. It has now been three years and she now has my diagnosed with reactive arthritis. My sed rate and c-reactive proteins have been high everytime they test them. I have good days and very bad days with severe pain. I have been in and out of physical thearpy and I get lidacane shots on and off. i am only 46. Last week I was so bad she gave me a prednosone shot in my arm and put me on sulfasalazine and folic acid. I am feeling less pain. My spine and hips are inflamed. Has anyone had any of the same symtoms. I have also been tested for everything from an infectious disease specialist and he found nothing. I am still working in severe pain and my job has heavy lifting. I feed 800 students at a school. My doctors all tell me I should stop working but than I would lose my insurance. i feel like I am 96 not 46. Has anything work for anyone. Any advice would be helpful.
Thanks,
nschroeder10

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 3/22/2007 8:18 PM (GMT -7)   
Hey there october sun.. welcome to Healing Well! Sorry it has to be under these conditions.. There are couple of people here that suffer from ReA.. are you being seen by a rheumy? Have they talked of getting you on any of the TNF inhibitors? Is there anyway you can be transferred to a different job that isn't as physically demanding for you? Hang in there, we'll help you through this.. Take good care..

Duck
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


october sun
New Member


Date Joined Mar 2007
Total Posts : 12
   Posted 3/22/2007 8:52 PM (GMT -7)   
Hi Duck,
I have been seeing a Rheumy since 2004 when I had the Parvo B19 virus. It is a childhood disease that is called fifths. I never had it and was exposed to it from the kids at school. That is when all the trouble began. I have been aneamic I also have hashimotos. What is TNF inhibitors? I am on sulfasalazine and folic acid right now. I am in the process of posting for new jobs .I can't do this much longer. I have been on valium for spasms, vicoden for pain and prednosone injections. I try not to take the pain meds unless my pain level it about a 9. If I were to give into to this i would be on them all the time. I try to keep a good attitude and make the best of a bad situation. I live in the CT. and the cold weather is making it worse. My rheumy talked about mexalthextrate or embrel. I am on 3 months of sulfasalazine. Waiting to get my bloodwork back. She thinks i am borderline RA. I think all arthritis is triggered from a virus or bacteria. I noticed in many posting that some people have had Lyme and other diseases. Most doctors don't even know about Parvo B19 and look at me like I am crazy. I have had so many diagnoses from frybormalgia to borderline lupis and RA. I just want answers.
 

istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 3/23/2007 8:54 AM (GMT -7)   
hi
i have also ReA i have pain in hips, ankles and neck with ribs.
not yeat on dmards or tnf but is time to start cos when i walk i have pain .
do u have side effects from sulfa? my hips are inflamed and ankles feel horrible when i walk. do u think we could cure this evil or be or suffer all the life .
i feel worse more and more and is spreaded in all the joints.
pls replay and send me email look on my profil.
regards Iris
october sun said...
Hi everyone. I just found this site and need some help. Three years ago on Easter I come down with Parvo B19 virus and could barely walk. My hand were so inflamed and I went to many doctors and they sent me to my rumy. It has now been three years and she now has my diagnosed with reactive arthritis. My sed rate and c-reactive proteins have been high everytime they test them. I have good days and very bad days with severe pain. I have been in and out of physical thearpy and I get lidacane shots on and off. i am only 46. Last week I was so bad she gave me a prednosone shot in my arm and put me on sulfasalazine and folic acid. I am feeling less pain. My spine and hips are inflamed. Has anyone had any of the same symtoms. I have also been tested for everything from an infectious disease specialist and he found nothing. I am still working in severe pain and my job has heavy lifting. I feed 800 students at a school. My doctors all tell me I should stop working but than I would lose my insurance. i feel like I am 96 not 46. Has anything work for anyone. Any advice would be helpful.
Thanks,
nschroeder10

gill1234
New Member


Date Joined Feb 2007
Total Posts : 19
   Posted 3/23/2007 8:58 AM (GMT -7)   
Hi there october sun , when i  started  sulfasalizine it took around 4  months for it to start working properly apart from a few flare ups it been  pretty good . I thought recently it was not  working as  well  but  after 2 injections in my shoulders  things are  settling  down again . I wish you  luck

istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 3/23/2007 8:58 AM (GMT -7)   

hi ducky

i was on chat room was empty.

i want to speak with u pls send me an email look on my profil

i feel more and more worse my arthritis is spreaded now in all the joints, even TMJ

is evil im afraid to not be RA but all tests r neg.

pls reply i will be grateful

Iris

Ducky said...
Hey there october sun.. welcome to Healing Well! Sorry it has to be under these conditions.. There are couple of people here that suffer from ReA.. are you being seen by a rheumy? Have they talked of getting you on any of the TNF inhibitors? Is there anyway you can be transferred to a different job that isn't as physically demanding for you? Hang in there, we'll help you through this.. Take good care..

Duck


october sun
New Member


Date Joined Mar 2007
Total Posts : 12
   Posted 3/23/2007 3:33 PM (GMT -7)   
Iris,
You have all the same areas that I have that seem to flare up. It has now gone to my spine and on thursday my rheumy gave me a shot of prednosone in the arm. My swelling in my wrist and ankles went way done. Pain level decreased from a ten to about a 3.  I started a low dose of sulfalazine of 500mg twice a day for two week and than 4 500mg after that.  I am also taking folic acid 1 mg a day. So far i am ok with the sulfalazine but I am only 1 week into it. Hope our feeling better.
Nancy smurf

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/23/2007 5:20 PM (GMT -7)   
Hey there Nancy - TNF Inhibitors are the same things as biologics (Enbrel, Humira, Remicade, etc).. You mentioned that your rheumy suggested you may go on Enbrel. I know it has been successful for alot of people.. I am on it, and have been for 2 years.. I would be in a wheelchair if I hadn't started taking it when I did.. has the docs thought of spondylitis at all? Please keep us posted.. talk to you soon..
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


october sun
New Member


Date Joined Mar 2007
Total Posts : 12
   Posted 3/23/2007 6:22 PM (GMT -7)   
Duck,
Spondylitis has been mentioned. I am going to get all me medical info together and get a referral to the Arthritis Clinic in Waterbury CT. DR. Peck has written many books about arthritis and is in charge. I am up and fighting. I will get this under control. Thanks for all the info.
Nancy

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/23/2007 6:45 PM (GMT -7)   
Hey Nancy.. you know, there is someone else on here that had Parvo - that turned into Arthritis and I can't remember who it was.. let me see if I can find the thread.. hhhmmmm...
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 3/24/2007 6:47 AM (GMT -7)   

hi Nancy

do u have side effects from sulfa? did u get improvements from sulfa. i know it takes long time to work. did u change your diet? do u have eyes problems?

regards

Iris

october sun said...
Iris,
You have all the same areas that I have that seem to flare up. It has now gone to my spine and on thursday my rheumy gave me a shot of prednosone in the arm. My swelling in my wrist and ankles went way done. Pain level decreased from a ten to about a 3.  I started a low dose of sulfalazine of 500mg twice a day for two week and than 4 500mg after that.  I am also taking folic acid 1 mg a day. So far i am ok with the sulfalazine but I am only 1 week into it. Hope our feeling better.
Nancy smurf

october sun
New Member


Date Joined Mar 2007
Total Posts : 12
   Posted 3/25/2007 11:37 AM (GMT -7)   
Hi everyone,
had a rough weekend with a fever for 3 days. Started sulfasalizine last week and I started getting a rash and than the fever started and a really bad headache.  Had a shot of prednosone also. Has anyone had bad reaction to sulfasalizine before. Called rheumy and she told me to stop taking it and call her on monday. Been in bed all weekend with a fever of 102. Today it is on 100. Hope to feel better real soon.
Nancy mad

gill1234
New Member


Date Joined Feb 2007
Total Posts : 19
   Posted 3/25/2007 1:46 PM (GMT -7)   

The only   side  effect i had  from when i  first started sulfasalazine  was a headache which gradually went  , other than its  been fine . 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/26/2007 9:13 AM (GMT -7)   
Hi there,
 
I also got really sick with a virus, a little over a year ago, and I had a bad cough along with it.  After that I began to have pain in my hands and knees, and now 16 months later, and three negative RA tests, my only answer is unspecified inflammation.  I know you mentioned in your post about your hips, the pain is now in my hips as well, and the pain just gets excruciating. sad
 
In the beginning I went through all of the NSAIDS, but they didn't work and were hard on the tummy! I tried plaquenil but after 3 months my doctor said it should have been working, stopped it and put me on the sulfa. I tried it for a week last month and ate nothing but crackers and diet 7-up, the nausea was something else.  So I went a month without any medications, and last Friday I went in for my checkup and I am back on my plaquenil, and a Medrol dose pak.
 
All of my testing has been normal, everytime.  However, I have joint swelling in my fingers, knees, and sometimes in my elbows even.  But the worst pain is my hips, when I have a flare, such as now, I think I am going to lose my mind.
 
It sounds like you may have an infection somewhere, I sometimes feel warm to the touch, but when I take my temp, it is actually low, sometimes as low as 97.0.
 
My doctor actually thought mine was viral in nature at first, but after a few months, decided against it.  I was tested for the same virus because I was teaching preschool at the time.

october sun
New Member


Date Joined Mar 2007
Total Posts : 12
   Posted 3/26/2007 7:38 PM (GMT -7)   
Hi Moto3,
My rhuemy just gave me a script for high dose prednosone and Methotrexate. i am so afraid to take them right now. This has gone on for years and nothing seems to work. I think we are constantly exposed to many viruses at school. i found a site called the Miranda Mission and it is all about Parvo B19 which I had three years ago from a virus I got from the kids. I swear it lays dorment in my bone marrow and something triggers  off this reactive arthritis. I am just recovering from a terrible reaction to sufasalazine and dont want to take anything now. I am 46 but feel like I am 96. Do a search and check out the site. smurf
Nancy

istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 3/29/2007 11:38 AM (GMT -7)   

hi Nancy

so u couldnt take sulfa? was so bad? my dr dont agree to take sulfa... so im like u without any meds and suffer. my arthritis is like storm now is my back before i have knees and toes pain.

elbows and wrists. is terrrible. but i dont have swollen joint sometimes r a bit hot and i than i put some feldene or cold gel to degrease the pain and inflammtion. is like u said is in bone marrow lay there and atacks. do u have back pain and neck pain?

do u have jont damage i think i have and im afraid to become disable. i take mobic but... is so toxic and hurt my stomac.

pls reply

october sun said...
Hi Moto3,
My rhuemy just gave me a script for high dose prednosone and Methotrexate. i am so afraid to take them right now. This has gone on for years and nothing seems to work. I think we are constantly exposed to many viruses at school. i found a site called the Miranda Mission and it is all about Parvo B19 which I had three years ago from a virus I got from the kids. I swear it lays dorment in my bone marrow and something triggers  off this reactive arthritis. I am just recovering from a terrible reaction to sufasalazine and dont want to take anything now. I am 46 but feel like I am 96. Do a search and check out the site. smurf
Nancy

EveSasser
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Date Joined Mar 2006
Total Posts : 808
   Posted 3/29/2007 1:05 PM (GMT -7)   
Hi, October Sun,
I cannot believe your doctor gave you those drugs. I have exactly the same symptoms you do, and I have reactive arthritis. It is a spondyloarthropathy. The three treatments are 1) exercise and stretching 2) NSAIDS such as arthrotec or diclofenic or others 3) biologics such as Enbrel. Enbrel is an off label use but your can probably find a doctor to give you the diagnostic code of ankylosing spondylitis. These are the three front line treatments for your disease. It is a very painful disorder, although it does go into remission for some people. I was hit three years ago, although in retrospect I think maybe I had AS without a diagnosis for years. You need to find a really good rheumatologist, not somebody who is not  in touch with the current treatments. I agree with everybody else that this is in line with those diseases known as inflammatory spondylarthropathy.
 
I am in physical therapy and I take Enbrel and NSAIDS. Physical therapy and exercise are diagnostic - if you feel better while you are exercising you have a spondylarthropathy maybe AS. This is a terribly painful illness and it takes courage to face each day. It is systemic and can affect every part of your body. The people on the site can help get you going in the right direction. I will send a prayer your way.
 
Eve

AshnaG
Regular Member


Date Joined Feb 2007
Total Posts : 79
   Posted 3/29/2007 1:17 PM (GMT -7)   
can someone please see the thread "please help my dad"

Its a few questions I wanted to ask
24 year old female with mild case of UC
Salofalk- 9 pills a day 6 pills a day (yay)
Lily of the Desert Aloe Vera Gel- 1/2 Glass a day
Bio-K Yogurt drink (50 billion active bacterial cultures.. Great drink!!) 
1 bottle a day
 
 
 


october sun
New Member


Date Joined Mar 2007
Total Posts : 12
   Posted 3/29/2007 1:51 PM (GMT -7)   
Evesasser thanks for all the info. i plan on getting a second opinion. I am not happy with my Rheumy right now. Starting taking the prednisone yesterday.
OctoberSun

EveSasser
Veteran Member


Date Joined Mar 2006
Total Posts : 808
   Posted 3/29/2007 4:35 PM (GMT -7)   
I hate to disagree with your rheumatologist but prednisone is not a front line treatment. In fact, my problem got much worse after I took it for three weeks and I never recovered. Prednisone is a short-term solution. I hope you find someone soon that can help you with the best treatment for your condition. Best,
Eve

KodakPuppy
Regular Member


Date Joined Mar 2007
Total Posts : 101
   Posted 3/29/2007 6:21 PM (GMT -7)   
Hi October Sun,
Welcome to the forum. I agree with some people here. Pregnazone does not sound like the right drug for your problem. I am RA and I am on remicade and it is helping. I am also taking methohexate and my rhumy says it is necessary to take both. I think you should get a second opinion and like I told someone else ask losts of questions. Hope you fel better soon.
KodakPuppy

october sun
New Member


Date Joined Mar 2007
Total Posts : 12
   Posted 3/30/2007 11:12 AM (GMT -7)   
Hi everyone,
today was a much better day. Made it all day at work. Hope tomorrow is the same. thanks for all the info.
Nancy yeah

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 4/3/2007 12:42 PM (GMT -7)   
Hey Nancy.. are you still feeling ok?
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


october sun
New Member


Date Joined Mar 2007
Total Posts : 12
   Posted 4/5/2007 1:00 PM (GMT -7)   
Hi ducky,
Went back to my rheumy today with a reaction to the high dose of prednisone she has me on. It is to much and is making my heart race. She decreased it and checked my sed rate and c-reactive proteins. The last bloodwork came back real high again. I had the bloodwork done two weeks ago. My joints are doing better and I have been able to work. I started my first dose of methotrexate on sat. This is going on 4 years and I keep getting worse. I don't have any answers as to why this can't be controlled. I go from 46-96 overnight. Fifths was going around at the school a few weeks ago and my parvo came back high again. She thinks that this is not causing the problem because I am supposed to have built up an immunity to it and I am not the norm. I think it has to due with the virus which brings on severe arthritis. So far I have been diagnosed with Parvo B19, fibromyalgia, reactive arthritis. Whats next? Thanks for checking up on me. Hope you day is pain free!
Nancy

october sun
New Member


Date Joined Mar 2007
Total Posts : 12
   Posted 4/5/2007 1:16 PM (GMT -7)   
Ducky,
forgot to add to more diagnoses.
1. Hashimottos
2. UTI infections
Do you find the acidophilus helps and how much do you take? My rheumy doesnt understand the connection to UTI infections. I don't know if I get them from all the different meds she gives me or it is some stange part of this illness. You have so many off the same problems that I have. What is bromelian for?
MEDS I AM TAKING
folic acid, prednisone,levothyroxine,methotrexate
I only take pain meds when I am in bad shape
Vicodens/diazepam
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