Re: Relying on Your Wisdom...

[Guest guest]

Hi

Welcome to our group, we do understand your frustration as most of us here

have had similar problems. It does sound like you have ReActive Arthritis,

but at this point it does not matter as much what they call it. You need

good doctors for each area of treatment. The GI issues are very urgent so

having a good GI doc is essential. I personally started with Colitis in

1970, and thru the years they have called it IBS, Crohns, etc. Now my GI

doc calls it IBS with Slow motility, with Small Instestine Bacterial

Overgrowth, so he gives me an expensive antibiotic for the gut. The point

is that you need good treatment of the symptoms even if they can't give you

a good diagnosis.

Sounds like you need a good Rheumy doc close by. Most of us have had to go

to many doctors. So keep going til you find a doctor who will help you. We

do have people here on the list who are in Texas. Be prepared that doctors

will try many different drugs on you, some work, some don't. Just don't

lose heart.

Also, watch that dry eye. Be sure to find a real eye doc. Dry eye is very

serious and you may need an Rx like Restasis in addition to liquid tears.

Have you been checked for Iritis??

This illness is all about management. In a ideal world a good Rheum doc

could do most of it. But we need GI docs, eye docs, heart and other

doctors. Do some reading and keep informed. And keep yourself up emotional

and spiritually. Do you have a good support system?

Don't give up, you are not alone. We are here for you.

God Bless

Priscilla

In Tucson, AZ

[Guest guest]

Priscilla -

Thank you for your reply!

I do have a good support system of friends and family. Some of those involved

in that support system are friends who are doctors including my G.P. and G.I.

doctors. Work has been fantastic with flexibility and support. My G.I. just

had me try a round of an expensive antibiotic - Rifaximin. It did not provide

noticeable relief but instead seemed to exacerbate all of my ReA symptoms. I am

going to send him a text message and request that we go back to Pentasa which

provided noticeable relief when I was on a 3 month steroid taper.

Is there any type of annual gathering for patients with chronic ReA? Something

where ReA education and exposure to new treatments are provided. I know the

SPAA does things liket this but it is much broader and usually focused on

Ankylosing Spondylitis.

Dry eyes has become a very annoying problem that is intermittent like my ReA

symptoms. I do have a real ophthalmologist who has placed me on Restasis. He

did check for Iritis and Uveitis with no apparent signs of either. I have a

yearly appointment with the ophthalmologist and instructions to call their

office immediately if at any time I begin to experience weird vision problems

indicative of Iritis and Uveitis.

I have also had a Stress Test and 3D CT Scan of my Heart to ensure that there

was no aortic regurgitation. All of those tests came back normal and expensive!

I am in need of good rheumatologist locally which is limited to a choice of 4

different rheumys. Two of them are in the same practice that I had a very poor

experience with, including annoyed/rude nurses and a wet behind the ears PA

graduate who knew much less about ReA than I did. I had to explain to him the

common courses of treatment for dysenteric ReA. Hence, he prescribed the

non-enteric coated sulfasalazine that I took one time and could not stomach. I

have a call in to the Rheumy that works at the same place as my GI doctor so

that just maybe they will take a team approach to my health.

>

> Hi

>

>

>

> Welcome to our group, we do understand your frustration as most of us here

> have had similar problems. It does sound like you have ReActive Arthritis,

> but at this point it does not matter as much what they call it. You need

> good doctors for each area of treatment. The GI issues are very urgent so

> having a good GI doc is essential. I personally started with Colitis in

> 1970, and thru the years they have called it IBS, Crohns, etc. Now my GI

> doc calls it IBS with Slow motility, with Small Instestine Bacterial

> Overgrowth, so he gives me an expensive antibiotic for the gut. The point

> is that you need good treatment of the symptoms even if they can't give you

> a good diagnosis.

>

>

>

> Sounds like you need a good Rheumy doc close by. Most of us have had to go

> to many doctors. So keep going til you find a doctor who will help you. We

> do have people here on the list who are in Texas. Be prepared that doctors

> will try many different drugs on you, some work, some don't. Just don't

> lose heart.

>

>

>

> Also, watch that dry eye. Be sure to find a real eye doc. Dry eye is very

> serious and you may need an Rx like Restasis in addition to liquid tears.

> Have you been checked for Iritis??

>

>

>

> This illness is all about management. In a ideal world a good Rheum doc

> could do most of it. But we need GI docs, eye docs, heart and other

> doctors. Do some reading and keep informed. And keep yourself up emotional

> and spiritually. Do you have a good support system?

>

>

>

> Don't give up, you are not alone. We are here for you.

>

>

>

> God Bless

>

>

>

> Priscilla

>

> In Tucson, AZ

>

>

>

>

[Guest guest]

Hi

I just realized that my old Rheumy moved to Texas. She is in El Paso. Are

you near there? Let me know and I can email you her name. When she left I

got a new Rheumy who is not as good, but thankfully I rely on other doctors.

Hang in there. Stay with the prayers.

God Bless

Priscilla