Reactive Arthritis frustrations

[Guest guest]

Here's my rant about my ongoing medical saga

12/19

I visit my primary care physician because I have developed pain in my

left foot. It hurts a lot, and I can't walk. My foot is also red,

swollen, and warm to the touch. As far as I know I haven't had any

trauma to the foot (and my x-ray is negative), but I do have some open

sores from some insect bites. The doctor determines I have

cellulitis, which is essentially an infection underneath the skin. He

gives me a round of ciproflaxcin.

12/26

My foot isn't any better. I go during urgent care hours, so I don't

see the same doctor. He's a young guy that looks right out of medical

school. He basically says tough it out, and prescribes me some pain meds.

12/30

I go to the ER early in the morning because the pain has become

excruciating. I basically can't sleep, can't think, can't do

anything. The doctor gives me some pain meds and some more cipro and

tells me to tough it out.

1/5

I'm not getting any better, and I decide I need to escalate this

process. I need to see an infection disease specialist. If I try to

get an appointment through my primary care physician it will take over

a week. I am able to get an infectious disease specialist to take

mercy on me although he is a 90 minutes drive away. He surprises me

by saying he actually doesn't think this an infectious process. He

orders a lot of blood work and an MRI.

1/12

He concludes that this is not an infectious process and is probably

being caused by something else. He refers me to a local

rheumatologist (who I am able to see that day). The rheumatologist

strongly suspects it is something called " Reactive Arthritis). RA is

an autoimmune process where a recent bacterial infection causes your

body to incorrect attack its own tissues. All my symptoms match --

including the seemingly impossibly unrelated one of painful urination

about a week prior to my foot hurting. The rheumatologist orders some

more blood work and gives me corticosteroids, which he thinks should

surpress the autoimmune response.

1/16

The steroids don't do anything for me. In my research about this

condition, I find that it's quite common for a stronger medication to

be necessary. I have a follow up appointment with the rheumatologist

scheduled for 9 am. I get up early and drive the 90 minutes to see

him. When I get there his secretary says that he's sick and won't be

coming in. Fuck. She schedules me for 1:30 the next day. I get a

call pretty soon later saying the doctor has canceled the appointment

and would be calling me later that day. He doesn't call.

1/17

I call the office multiple times. The doctor won't return my calls.

His secretary says he dictated a letter and would mail it to me. WTF

is going on here??? After calling back about 5 times trying to get a

straight answer, he finally gets on the line. He tells me he just the

assumed that the steroids had made me better, and thus he didn't

understand why I needed to schedule another appointment or call his

office so many times. He seems a little surprised that my condition

hasn't improved at all. He says schedule another appointment. At

this point, I let him know that I wasn't very pleased with the way I

was being treated. He told me that " we just don't seem to be able to

get along " . And I should " find a new doctor " . WOW WTF.

So basically I'm a 24 year old healthy guy that hasn't been able to

WALK in a month, and now I'm back at square one. I have an

appointment with the same primary care physican I saw on 12/19

tomorrow morning. I know what's wrong with me at this point, but it's

extremely difficult to actually get in to see someone that can treat me.

[Guest guest]

Hello.

I know what you are going through. I also had the same thing happen to me. I

finally found a reum. Who knew what was going on. We tried the steroids, didn't

work. Finally did research on my own insisted on remicade which finally put me

in remission. Haven't had a flare in about a year. I would suggest you find

the fastest way to get the inflammation down. I believe the faster that happens

the better your chance of recovery. I also had the same exact symptoms with my

foot. I am also fairly young 30. Good luck.

Sent via BlackBerry by AT & T

[Guest guest]

For SCdavis,

I would insist on seeing a Rheumatologist as soon as possible...as

ReA can have good results only if antibiotics for Reiter's is started

early enough. The antibiotics are different from those for infectious

disease. If they fool around with you....and the right antibiotics are

started too late, the results will not be effective. Since you did

have urinary problems before this happened...the doctors should

suspect ReA and not an infectious disease, which is different than

Reiter's/ReA.

The antibiotic they chose to give you in the beginning is for an

infectious disease, not ReA. Maybe they thought you had a staph

infection and the last doctor suspects ReA instead of an infectious

disease.

Hope you get help soon. Best regards, Connie

[Guest guest]

Hi scdavis0,

I have had a similar problem. The first time I had a Reactive Arthritis,

was almost exactly the same as your pain and suffering. 6 months later I got to

a good Rheumatologist, and saw a urologist that sent a prostate fluid sample

to the pathologist. The result was a prescription for doxycycline 30 days.

I felt great after about 10 days. After I finished the doxycycline the

infection came back - so did the Reactive Arthritis. That's where I found that

the Rheumatologist helped, and Infectious Disease did not help this time. I

then suffered for about 6 months, and had a bronchial infection treated by

Biaxin - all the pain went away, and it clicked that this drug would worked on

the Reactive Arthritis - I got in touch with the Rheumatologist and he

prescribed it long term. This treatment sort of worked, yet no cure. Finding

the

correct antibiotic treatment, and taking it for the needed length of time is

difficult.

You need a good Rheumatologist. A sample of a joint fluid may identify the

infectious agent causing this problem. Your situation with doctors is quite

common, yet the good ones will help you.

I got an infection March 2007, with urinary tract symptoms, and some

arthritic pains. I told the urologist, that I had a problem. He prescribed

Floxin

for 2 weeks. The Floxin helped, but did not resolve the issues. My PSA

(prostate blood test) was up from 1 to 2.7, and I had to have a prostate

ultrasound, with 14 biopsies on January 9th. I have inflammation in the

prostate

and I was prescribed Ciprofloxin for 2 weeks on Monday. I did not pick up the

prescription, and went to the Infectious Disease doctor - got a young guy

this time. The pathologist verified that the biopsies showed an infection. I

requested a scientific approach before prescribing medication - the ID doctor

stated that this may take some long term treatment. Today blood tests and

an intensive urine test. On Monday I will get a call from ID doctor. On

Thursday, I see a good Rheumatologist. What is it going to take this time?

Low

grade infections are quite a challenge, and require a sincere doctor -

probably a Rheumatologist, possibly and or an ID doctor - to get rid of the

darn

things.

If antibiotics are the proper treatment for you, then Google " Dr

McPherson Browns protocol " , and

_http://www.rheumatic.org_ (http://www.rheumatic.org) .. This is good

information, and it states that the proper combination of antibiotics varies.

Best Regards,

Greg

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Update:

I saw a new rheumy today. He officially diagnosed me with Reactive

Arthritis. He put me on a regimen of doxycycline (100mg 2x) and

sulfasalazine (500mg 4x).

[Guest guest]

>

> Update:

>

> I saw a new rheumy today. He officially diagnosed me with Reactive

> Arthritis. He put me on a regimen of doxycycline (100mg 2x) and

> sulfasalazine (500mg 4x).

>

How was that diagnoses made? Sounds like meds Dr. would put you on for

a STD. Same thing happened to me 12 days ago. All labs were normal

except c-reactive protein. Dr. assumed maybe an STD and put me on

steroids and doxycycline. My partner was tested and negative..., no

STD so that knocks out that theory. All I know is I NEVER want to

hurt like that again. I could not close my hands, my lower back,

shoulders and knees were killing me. It was almost to much to bear to

sit down and get back up to potty.

Thanks for your help.

a

[Guest guest]

scdavis, one thing you need a lot of now that you have beenn diagnosed with

reactive arthritis, is patience. just hang in there and hopefully you'll find

what works for you with respect to medication.

james

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