newly diagnosed reactive arthritis

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Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 4/9/2010 10:57 PM (GMT -7)   
Hello,

I have been in Healing Well for a few years. Related to this particular concern, I last posted in Chronic Pain.

I had plantar fasciitis (pain in bottom of foot) for a couple of years, and then in January of this year I had surgery for it. Then about a month later (in February), I started to have arthritis-like symptoms. To make a long story short, just a couple of days ago the rheumatologist told me I probably have reactive arthritis (ReA for short). This results when you have had certain infections, and through some poor choices and unfortunate circumstances, I actually had THREE of the nasty bugs that are the usual suspects that lead up to reactive arthritis.

My question is: Will reactive arthritis get worse? The worst symptoms I had were joint aches all over over my body. It was SO awful. I ended up taking Mobic and Vicodin that my podiatrist had prescribed until I could see a rheumatologist.

The rheumatologist then gave me a cortisone shot in my non-surgery foot and that helped a lot. But i continue to have swelling in my feet, which makes it hard to wear shoes and walk comfortably. The rheumatologist thinks that my plantar fasciitis is related to my ReA (not RA), and that it is unlikely to go away, as it does in some cases of ReA.

I just started taking Etodolac 500 mg twice a day. It seems to somewhat help with the swelling. If things get worse or don't get better, I guess i will be going on more heavy duty stuff, much like what rheumatoid arthritis people take.

What does anybody think? I hate this. I used to be so active and I am scared that I will just turn into a couch-potato blobbo.

--MK

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 4/11/2010 5:21 PM (GMT -7)   
ReA is one of the diseases in the spondylitis family. I started out with what was called spondyloarthropathy [SpA] but then was later diagnosed with ankylosing spondylitis [AS]. AS is also in the spondylitis family. I have had many flare-ups that cause wide spread joint pain. I have had to at times use a walker or cane to get around. Hopefully your flare-up will end soon and you can get going again. In the meantime, there is a lot of information about ReA at the Spondylitis Association of America website. When you get there, click on the about SPODYLITIS tab to select ReA.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 4/12/2010 2:20 PM (GMT -7)   
OK, Ides, thanks.
 
The doctor gave me a short handout sheet, but of course over the days I've had questions and can't figure out where to go for answers.

ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 4/16/2010 4:09 AM (GMT -7)   
I too have ReA. It's a challenging condition, I won't lie to you. What I can suggest is that you stay as active as you can...but you have to be extremely careful to do the lowest-impact exercise you can (pools are your friend, gentle walking on flat ground, for short to moderate distances only) or you'll end up getting less active as the pain takes its toll.

Every case is different. Some Reactive Arthritis/Arthralgias do go into remission. I've had a few relatively good periods over the years, though I was still not even then anywhere near "normal."

I have now had it in some form or another for close to ten years. If there is anything that I can help explain or give advice on, I'm happy to do it for whatever my two cents are worth.
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Crohn's Disease, Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, As Yet Unknown MS-Like Relapsing/Remitting Neuropathy, and a partridge in a pear tree.

Medications: Currently not that many are taken daily, but there are many at my disposal for part-time use. Low dose pain medication, after years at high doses. Working on innovative ways of taking lesser-known pharmaceuticals and non-prescription supplements to maximum benefit.


Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 4/18/2010 9:08 PM (GMT -7)   
Hello ExitWound...

Thanks. That doesn't sound great, but it doesn't sound too horrible. I have no idea where this is going. What follows is my latest setback...

Today (Sunday) I ended up going to urgent care because I had an itchy rash ALL OVER my body. Most likely, I am allergic to the Etodolac, which I just started taking on April 8. So apparently it took about 10 days to get in there and make me ill.

The urgent care doctor prescribed some Tagemet and prednisone and suggested Claritin. The rheumatologist who was on call from the arthritis clinic said (of course) to stop taking the Etodolac and to just go back to taking Mobic until I get back in for an appointment.

so, after seeing two different podiatrists, going to a chiropractor, my family doctor and now this rheumatologist, I feel like, so what. After an MRI, foot surgery and a bunch of tests, I still have to keep my right foot bandaged and I am going back to the original NSAID.

I was just starting to feel upbeat because the swelling had gone down in both my ankles and I was able to do like a four-mile walk (with lots of breaks) in the park. I have a vacation planned next month, and now I am wondering if I am just going to be sitting around for most of it.

this sucks.

--mk

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 4/19/2010 7:37 AM (GMT -7)   
Sorry you are having such a stretch of hard road. It does suck! Hope it gets better for you soon!

Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 4/19/2010 1:40 PM (GMT -7)   
thank you, weary one... I feel better today, still look like a spotted lizard

ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 4/19/2010 7:27 PM (GMT -7)   
You may find that you have strong histamine reactions (itching, rashes, psoriasis etc) as your immune system attacks your skin/fascia. It's quite likely that your reaction was to the Etodolac, but you may notice such reactions even without any obvious cause.

One of the important things to know about ReA is that it is, well, more *reactive* than many other auto-immune conditions, which themselves can flare any time your immune system is stressed: you get a cold, a "stomach bug," the flu, or another kind of infection....even mold exposure or strong allergens....and your pain/inflammation can get much worse. So....avoid catching any sort of infection/germs/viruses or being exposed to excessive mold spores!

The best thing that I've found to fight the inflammation is Turmeric. It's a middle eastern/far eastern spice that is very gentle on your body and has none of the drawbacks of pharmaceutical NSAIDs. If anything, I think it actually works better than they do.

There are a few other things that can help: piperine (black pepper), ginger, bromelain, vitamin D (muscle spasms/soreness as well as your auto-immune condition itself). But turmeric is far and away the most dramatically effective that I've found.

ReA can attack much more than just your joints. It can cause inflammation and damage to virtually any organ in the body, and frequently does. You'll want to take extra good care of your digestive tract, for one thing. Probiotics are good, but most only include 1-3 strains. You want the really expensive stuff that contains 10-20 strains...most particularly L. Reuteri. This has been shown to thicken the intestinal walls and protect against several inflammatory pathways in the body as a whole.

I don't want to be unduly negative, but often people get worse with time -- though it can be very variable and unpredictable. That's why I suggest you do everything you can to slow the progression, avoid immune stress, and stay in decent shape so that hopefully you'll be far better off years down the road than you would have been if you'd just waited around hoping for a remission. A lot of docs will just shrug their shoulders and say "we'll try to help you deal with this for now, and hopefully it will 'burn out' on its own eventually"....and many of us ReA sufferers don't know what to do except trust the doctors.

Frankly, very few docs -- even rheumatologists -- understand ReA very well. So don't expect the voice of experience or specific knowledge from them....you may want to join RISG.org, the Reiters/Spondylitis/ReA-specific support group.
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Crohn's Disease, Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, As Yet Unknown MS-Like Relapsing/Remitting Neuropathy, and a partridge in a pear tree.

Medications: Currently not that many are taken daily, but there are many at my disposal for part-time use. Low dose pain medication, after years at high doses. Working on innovative ways of taking lesser-known pharmaceuticals and non-prescription supplements to maximum benefit.


Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 4/21/2010 5:15 PM (GMT -7)   
very interesting, exitwound.
 
I have been a little worried that some of my recent activity has been putting me at risk. I am trying to get my elderly mother's house in shape so she can sell it. I had been doing a lot of cleaning in her very damp, filthy basement, and in other areas which are also disgusting.
 
I am avoiding her house this week, but I guess when I go back next week I will try to limit my activities.
 
I went to the rheumatologist today and she wants me to get started on sulfasalazine to prevent more flare-ups and joint aches like that attack I had in February. And to prevent other problems on the order of my plantar fasciitis.
 
I'm going to think about it for two months. I'm just not in the mood to start any new drugs!
 
mk

crickiechickie
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/4/2010 1:06 PM (GMT -7)   
Hey Daisysmom,

I was just diagnosed with reactive arthritis yesterday and I am 28 years old and in nursing school on top of that. I get sick with things like bronchitis and sinus infections pretty often and in September I had a massive kidney infection. Early last month I had pneumonia and just a couple of weeks ago I got a stomach virus. The rheumatolotgist I saw thinks that me getting sick so often has just taken it's toll on my body and caused constant increased inflammation (my sed rate then my pcp checked it was 48). He said that, depending on what the labwork and xrays he ran show up, he may be sending me to an infectious diseases doctor to try to find out why I keep getting sick.


As for the pain I currently have, he gave me a steriod shot and a prescription for Mobic. He wanted me on Celebrex but I'm allergic to sulfa and can't take it.

My hope is that they will find out why my immune system just can't seem to fight anything off on it's own and that will get me on the road to feeling better. The hardest part is that I've missed a fair amount of class time because of everything that's been going on and it's hard to stay caught up with the class. Not to mention the professors getting skeptic about me actually being sick..

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/4/2010 7:52 PM (GMT -7)   
Hi CC, you should start your own thread and introduce yourself to us all.
Sorry to hear you've been so sick. Lets hope they can come up with a diagnosis soon.
Its so awful when you feel like your body is letting you down.
I hope you manage to bounce back soon, sounds as if your body is crying out for REST. Hard to do I know when you are a student.
I have RA and teach at university I have 2 students with RA and of course am incredibly understanding if they're flaring or anything. So hard when you look so well and yet can be in so much pain.
Why don't you get your specialist to write a note to your lecturers explaining how tired and painful ReA can be?
It might make them more educated and a bit more caring for you.
No harm in trying anyway, best wishes, golitho wink

Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 11/5/2010 7:52 AM (GMT -7)   
yes, i agree with Golitho. It sounds like you have been VERY ill and maybe you need to get it on the record and do what you can so your GPA doesn't suffer.

I have been doing a lot better, by the way. I have been very busy the last few weeks helping my mother to move into an apartment from her old house. I have been able to keep up with the physical work, but do try to spread it out.
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