Re: questions from a quiet member ~ Sandy

[Guest guest]

Sandy, I think Janet is right, you could use a second opinion. There a

number of different therapies available, and many Doctors know that sometimes

you

have to try several different therapies before you find one that works for

you. From your symptoms I am not sure that you have Reactive Arthritis at

all, but you may have osteo-arthritis or rheumatoid arthritis. They tend to

attack the knees and the achilles tendon more than ReA. If that is indeed the

case, the new drug Enbrel has been found to be very effective in treating

Rheumatoid arthritis. I agree with Janet, your Rhematologist doesn't seem very

knowledgeable. At the very least the Doctor should give you something to help

control the pain. I think you would also benefit being treated for

depression. I say this for two reasons. Depression medication has been found

to

help alleviate pain. Secondly counselling will help you develop strategies for

dealing with your feelings of sadness and dealing with your family.

Depression is a seious condidtion in itself. The fact that your Doctor didn't

take

any action on this would be an indication that you should dump her or him as

soon as possible. Matt.

[Guest guest]

Sandy, we all can sympathize with you about your arthritis condition. Many of

us on this list are familiar with knee problems and Achilles tendonitis. Was

your Achilles tendon made worse by prednisone injections? We have heard that

this can happen sometimes. Your symptoms are very common to the

spondyloarthropathies. Food poisoning is one of the triggers. Do you have

relatives that also

have Reactive arthritis (ReA)? Like Janet and Matt mentioned, there are drug

options that your doctor can order to make you more comfortable and to help

with the inflammation. Are you on any NSAID? This is usually the first line of

meds and can help some. You might find that communicating with us through the

list can help you cope and deal with your disease more effectively. It is hard

to learn that your disease has become somewhat chronic after thinking it might

be gone forever. We will hope with you that this will only be a small set

back and you will be up and about soon. Keep us informed. Best regards, Connie

(granny)

[Guest guest]

Sandy,

Would it be possible for you to see a different rheumatologist? We have

such effective safe treatments for this disease now. If you can't see a

different rheumatologist, then maybe you could take the medications even

though he says he wouldn't take them. He sounds like he's not very current

in his medical knowledge.

If sulfasalazine isn't effective for you, there are many other medications

to try. Sulfasalazine worked for me for a couple of years but then stopped

working. There is methotrexate which is very safe if taken with folic acid

and there are the newest medications that are given by injection. One of

them is Enbrel which has put me nearly in remission. And, believe me I had

very very severe symptoms. It just is completely unnecessary for you to be

suffering like this in today's day and age. I really hope that you can see

a different doctor.

You are not alone. Most of us have families that don't completely

understand. Everybody here understands. You are a member of a community of

people who understand exactly what you are going through. Believe me, there

are many prayers and best wishes coming your way from this group!

Janet in SF

ReA since 1973; diagnosed 1997; HLA-B27+

[Guest guest]

Hi Sandy,

You story is so familiar to many of us. No one can really know what it is

like for us unless they could " walk a mile in our shoes " . When ever I'm down, I

remember a close friend of mine who died from breast cancer. She lived life to

the very end. She would have accepted life in whatever form if she had had a

choice. My daughter said something interesting to me the other day. She said

they might have missed out on some things because I had to stop working when

they were young (she was 6 at the time that I got sick) but they would have

missed out on even more if I had continued to work. So maybe it is not just a

cliché that good can come out of the bad. Have you talked with your doctor

about taking an antidepressant. It might help you through this bad time and

often helps some of the pain as well. Have you had x-rays done of your knees.

Maybe there is some osteoarthritis as well. You might get a lot of relief from

injections in your knees. I also have a problem with Achilles tendonitis.

There are many orthotics that are helpful. I recently got a catalog from

www.footsource.com<http://www.footsource.com/>. Also there are braces that keep

your foot at a 90 degree angle. You can wear it at night and it stretches the

Achilles tendon so it doesn't tighten up through the night. Also you have

hardly scratched the surface as far as medications that are available. I have

been on Methotrexate for over a decade with no serious negative effects. Liver

function needs to be monitored with blood tests but many people of the list have

used it safely for many years. You need to find a doctor that will treat your

symptoms aggressively!! It is better with arthritis to treat the inflammation

early before it does serious damage. I hope this email has been helpful. Feel

free to write me on the list or privately anytime. What are of the country do

you live? There may be a member that can help you find a doctor in your area.

Good Luck!

Kay (the one from Michigan)