Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Update! My first rheumy app. How it all went.

Just thought I would write and let you all know how I went at my first rheumy app.
I am still trying to process it all so bare with me.
Basicaly we went through all the history than he did a number of physical tests and then had a chest and s1 x-ray taken.

He confirmed the AS diagnosis. Did paper work for me to have a colonoscopy(sp) and Im a catagory 1 so that should happen pretty soon. He gave me a copy of these stupid exercises and stretches that my old doc gave me 8yrs ago and I already do every day.
He then told me I have to remain as active as possible, well derrr I already know that. Then he prescribed sulfasalazine and Calebrex.
Dont think I want to take it at all but not sure what choice I have. Will do a search on here about them or feel free to post any links you have to this.

I was then told to go to Emergency to have this chest pain checked out, even though I know the chest pain is only from straining the ligaments from coughing all night and day.
So after the ecg came back clear I checked myself out before the blood tests came back but I am sure they will come back clear.

Hope I have explained this properly. has been a very emotional day in all and my sweet little boy was with me the whole time and was so strong for me. I love him so much.

Hi Trish,
Glad it went ok he was thorough which is a good thing.And although you know about the exercises it was good he went through it with you. So a colonoscopy then what fun for you get that over with and you should have some peace of mind.Dont know about the drugs never used them but know others on here do so you will get advice from them.


Kevin

Everyone has been so suppotive of eberything I have complained about and for that I thank you.
I am so lost and scared. Maybe it is just the emotions of today with the funeral and then the rheumy app and not being well with this sinus infection I dont know. But I am scared.
I dont want any medication. I dont care if the pain will stop.
I am scared I will have a reaction again and I dont want to feel like that. So many of the severe side effects list of both drugs I already experience in some way. It also says don't take this or consult your doctor before taking this if you have xyz. And I have xyz so doesnt that mean I shouldnt take them or that I might have problems.
I am sorry to go on I realy am. I am just so scared and would rather deal with the pain then risk taking something and not being here for my kids. Im sorry. I dont mean to be bringing everyone down. sorry.

Stop saying sorry you sound like my wife she is always saying sorry. Look we know your a pain in the backside and an old whinger who goes on and on and drives us all potty . But we are all here for you of course your scared thats nothing to be ashamed off.If your worried about taking the drugs go to see your Doctor and discuse it with him tell him your fears and see what he thinks they are there to help you not tell you off for being naughty.If after that you still dont feel you can take them then dont get another pain med you feel happy with taking.NOW STOP SAYING SORRY AND MOANING ABOUT BEING A PAIN.

Kevin

Yeah ok.
I think I just need to sleep and Im over emotional.
Realy shouldnt expect to much from myself with the day I have had.
night Kevin and thanks I need to be told that some times.
xx

Night Tris,
It will all look better in the morning I promise.

Kevin

Aussiegirl - Go right along with Kevin here 'smile'.
NOW STOP SAYING SORRY AND MOANING ABOUT BEING A PAIN...
Sounds like you have a reasonable doctor. He did the tests, sent you for X-Rays, blood tests. Gave you a list of the exercises - more than mine EVER did! Well done that rheumy. (The most I ever got in that direction was to be sent to a totally useless kinetherapist - called that here in France - who hadn't got a clue and didn't know 'really' what AS was!)

So, in all of that what is there to be scared about? You have had your first rheumy appt. It went well. Very well indeed.

Now, as for the meds. Check em out carefully. Make a list of ALL the reactions you *Already have, and discuss *with the doctor (your rheumy) all of these side effects and the fact that you already have em, or have experienced them in/with regard to other drugs.

Make a list of ALL the drugs you have 'ever' taken, AND note your side effects to em - in fact, am very surprised that he didn't ask you for such a list. That is important information! Your medical team need to know ALL your side effects to ALL drugs - including even reactions to dental numbing agents (IF those effect you - they do me for one!)

Now. You may also need this info for your colonoscopy. So be prepared, and take it with you.

Great that he has arranged a colonoscopy for you. More than was ever done for me. Have had to do all my own stuff, right the way along... So, TG you have a concerned rheumy and sounds like a good GP.

Now. Coming to the meds. Celebrex is an antiinflammatory. Side effects 'can' be a bit of heart, can also be LPRG/GERD ('can' be, but not necessarily - might not have any side effects at all!) Celebrex is kinder on the stomach than other NSAIDs. But as a precaution, take a stomach protector - discuss with your docor, ask him to script you a suitable one. IF you can tolerate milk products, then also take yogurt. Stoneyfields is excellent. Plain yog. IF you want it sweet, put in raw fruit, or a little honey or whatever. NO sweeteners though...

Now. Sulfasalazine. You might be OK with the SSZ. It is used as a first line drug in treating AS. BUT, IF you don't like to try it, then don't. But, will need to discuss it with your rheumy.

Can you get another appt with him? Just to discuss all these elements?

Meantime. Calm down. Relax. Nowt has happend yet, except for the good. Got your definitive DX. Colonoscopy set in place (you'll survive that). And the rest will follow. Don't forget that you have us here. You can *always ask us questions. Can always come here to discuss. AND, there is a wealth of info here on the boards/forums and of couse a whole wide world of info on the internet.

So well done. And well done to your youngster BIG (((HUGS))) to both of you -

Molly C (France)

It sounds like, overall, it was a pretty good appointment. Now that you have a definite diagnosis, as opposed to a susptected one, you can make some decisions longterm.

I don't blame you for not wanting to take the meds. I didn't either, at first. After a couple of years, I had to admit that what I was doing wasn't working as well as it should and changes were required. It was only after a ton of soul-searching that I finally called my rheumy and told him I was ready to let him do his job fully.

I know the exercises are tiresome, but they really are important. Do they include a chest expansion exercise? I would also suggest that you take a pilates or yoga class. Personally, I lean toward pilates, as I find it engages my brain more fully while strengthening my abs so they can do their job of supporting my spine more efficiently. Other people find this in yoga, tai chi or qi gong; it all depends on what works for you.

Take it one day at a time. Do your research so you can take meds from the point of view of knowledge. And make the decisions that are right for you ... not just now, but going forward.

And please don't feel you have to apologize for anything. It's what we're here for.

Hugs,

i do understand your fears in trying new drugs, i'm always a little apprehensive these days when i try my first pill of anything. however, some drugs have literally saved my life or at least greatly improved my quality of life, something that could never have happened if i hadn't at least tried the drug. i do read the literature, educate myself, but try not to psych myself out. probably the scariest potential side effect was the potential liver failure from zanaflex; a few people had unexpectedly developed liver failure (no problems with their livers prior to taking the drug) and died from it. but, the % was very very small. so i took the drug in the smallest dose to begin, got a liver panel done after 1 month, 3 months, 6 months, 12 months, and now yearly since 2002. and my liver has always been fine. i was very nervous that first month, but so glad i overcame my fears, as it has been such a godsend in helping with my musculoskeletal pain. on the other hand, i pretty much steer clear of anything that "may cause a stomach ulcer" because they all flare my gastritis, i have a very sensitive stomach. so i think its trying to understand the real risks to the best of our abilities, and not letting the fear get the best of us, even if that's not always easy.

Sounds like a good first visit. After some rest, you may have some new insights or questions.