Husband Has Reiter's Syndrome

[Guest guest]

In a message dated 4/28/2004 11p:29:35 AM Eastern Daylight Time,

jhaire2002@... writes:

Are there any support

groups for spouses of RS patients?

Dear Friend,

This support group has many parents, friends and spouses of your husband's

disease. Please feel free to post about your feelings and frustrations. We

understand completely what you are going through.

The best advice I can give you...is that your husband needs to find good

doctors that will treat this disease properly with the right medicines. What

medications was he using for his uveitis? Dilation drops should have taken any

pain he was having...to a tolerable level within a few days time. Pred Forte

drops given every hour or two should bring the most severe uveitis under some

control within a week or so before you can cut back on drops. Sometimes the

medications need to be used for several months. I'm so sorry he lost his eye to

uveitis, especially at such a young age. This is a pretty drastic way of cure.

I've been dealing with uveitis and all of it's complications for many years.

Fortunately, I have medicines on hand and at the first symptom of

iritis/uveitis,

I use the pred forte drops and dilation drops until I can get to my

ophthalmologist. Just recently, I developed glaucoma and have had several

operations for

that, but I am thankful that I still have sight in that eye. Your husband

must be diligent and seek medications and treatment immediately....if he ever

has

trouble in his remaining eye. If the VA doesn't do this...yell, yell until

they do or go to an ophthalmologist outside of the VA. Hopefully, this won't

happen. However, once you've had uveitis in one eye there is a great possibility

that it can happen in his good eye, so he needs to get treatment as soon as he

feels any slight problems.

What symptoms does he have with his RS? Is he able to work? What medications

is he on now? Maybe you can tell us a little more about yourself, so we can be

more efficient in helping you deal.

Please know we care and are here for you.

Best regards, Connie (granny)

[Guest guest]

My husband is 25. He was medically retired from the Navy three years ago

after developing RS five years ago. Since we have been together, it has

gotten worse. We finally decided to have his right eye removed after the

uveitis got to the point where he was suffering excrutiating pain. Thank God

for military insurance and the VA! Here's my question: Are there any support

groups for spouses of RS patients? I am to the breaking point. I don't know

what to do, and I don't know what to expect. He's having a flare-up right now,

and it terrifies me. I would like to find how others have dealt with this. Thank

you.

[Guest guest]

I'm so sorry your hubby is in such severe condition. At your ages, I'm sure

this is the last thing you were expecting to deal with. I am one diagnosed with

RS, but I know the stresses are very different for our loved ones. My hubby is

a miracle man as he puts up with me on my cranky days, ER days, etc., not to

mention the every day routines I can't keep up with and he fills in after

working all day. I believe there are a lot of spouses/significant others here

on the list, and hopefully they can fill you in from their perspective. The

rest of us all have ears, and sometimes do understand your particular issues

since we're the cause of some of them;o)

Susie

[Guest guest]

Are there any support

> groups for spouses of RS patients? I am to the breaking point.

Hi there. I am not a regular poster but I do follow the group as my

husband has a very severe case of ReA and I sometimes have questions,

concerns or just need some support in general. This ia very brave,

strong and loving group and I'm sure you will find a warm welcome to

this site.

My husband was diagnosed when it was still called Reiter's about 9

years ago when he was 28 yrs old. Now is now completely fused, on

Enbrel injections three times per week and has just started

methotrexate (now that we're done having kids) This disease is very

hard on the those with the disease and in some ways its also hard on

the spouses. The best thing you can do is offer as much support as

you can. So many spouses get fed up with the complaining and the

lifestyle changes that go along with the disability but you need to

think of what they are going through every day. It's not easy but I

love my husband to pieces and would do anything for him so I am bound

and determined to help in any way that I can.

Your best bet is to find a wonderful Rheumy. One that is informed

about the new treatments and willing to give them a try. Different

meds work differently for everybody so it's a bit of a trial and

error game. The good news is that this disease has become so

visible (meaning that they are finally diagnosing it properly in more

and more people) issue that there are new trials started all the

time. This is especially true in Europe.

Good luck and hang in there. No matter what you are going through,

they are truly suffering. ReA is a terrible thing to deal with.