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

I hope the Rheumy I see next week is half as good as yours seems to be. The sooner you are taking meds for your AS, the sooner you slow down/stop the damage it is doing. The SSZ is a good start for treating AS. The med can save you years of pain and disability in the future. It is much milder then most of the other drugs used for AS. Listen to what he says and try to follow his plan of action.
Donna

Glad to hear you're getting answers aussiegirl, and at the same time understand how you feel about the drugs.
I've been taking the Celebrex now for about 6 months. While it sometimes takes the edge off the pain, I don't particularly find it all that helpful. Now, on a really bad pain day, a little 'edge off' is better than nothing. I haven't had much in the way of stomach/gastro issues as a result of the Celebrex (there was some pre-existing gastro stuff with me), but I do have a handy script for prilosec as needed. My rheumy seems to be quite comfortable with the drug and it's side effects related to heart disease, and I trust him, so I plug along. (Now, next visit I'll be gunning for other/additional solutions for my pain as it seems only to be getting worse, and taking the edge off is hardly enough some days.)
None of this is to say that the Celebrex wont do wonders for you, but thought I'd add my 2 cents worth. As scary as the drugs seem, I wonder what being pain free or pain reduced, at the very least, might be like.
It's a balancing act I guess....and as far as the 'being a pain' goes...we're all a pain, we're all in pain. This place is where we are allowed to BE. So don't apologize. You'll return the favour and listen to us moan too, I'm sure.
Here's wishing you many better days ahead.
PT

Thanks a bunch.
I have to ring my doc from yrs ago before I moved to Bribie. I seem to remember him putting me on Celebrex. It just sounds too familiar. If it is what I remember it made me feel realy sick.
But I cant be positive so I will ring and see what they say.

I have heart pulpitations and a bad tummy so I am worried about that. I take somac for my acid but one of the things it says on the ssz is not to take the somac 2hrs either side of taking the ssz as it needs the tummy acid or something.

I guess I just got super emotional and worried yesterday from a combination of things.
The reaction to the oxy realy scared me. I felt like I was dying literaly. Then being at the funeral and seeing the 2 boys supporting their mum and losing their dad while they are stil young. I guess I am just scared that will happen.
I know that is extreme and not something I should worry about but I just couldnt/cant help it. I kind of feel like well pain wont kill me. I might want to kill me, but pain wont kill me. But the side effects of the meds could. And I would feel guilty that I risk that just so that I have a little less pain.

I know this is silly to think like this but I just cant help it.
I am not used to putting myself first. Thats just me. You know how it is. I grew up on the farm and everything else comes first.

Then the rheumy scared me a little. We were talking about the pains I get in my chest. I had just got to a point where I convinced myself it is just the AS and not having a heart attack everytime and then the rheumy goes and says I should never ignore chest pain and should always get it looked at.
Now if thats the case I would be calling the ambulance every other day.

I realy dont think I can handle the stress from taking the meds and worrying that something will go wrong. I just cant do it.

I know none of this probably makes sense to any of you. I just thought I would try and explain this is a realy big problem for me. My head is a huge problem for me. And I dont know how I can fix that.
Thanks again for everything and notice I didnt say sorry for this rant. lol.

Sounds like you have a pretty special little boy too..

I know exactly what you mean about the chest pain, now if you ever think it could be your heart then absolutely go to the ER. I have had to kind of try and distinguish between that pain. When your chest and those muscles and tissues are hurting it can sure feel like it is your heart. I have always been lucky that i have had oral pred so I would take one and within an hour or so it would start to feel better.

I hope you feel like your visit went well.

Hugs,

Lisa

Hey Trish, we're all pulling for you! Please don't feel guilty about telling us about what's going on - that's kinda why this site was designed. So no need to apologize. Really. We all have bad times and sometimes you just need to say it all out loud, or type it, in this case.

It's totally understandable to have hesitation before starting new drugs - if you went into it without those thoughts, I'd worry about you! You kinda have to weigh the pros and cons for yourself. Ultimately, you are your own best doctor. At one time, celebrex was a life-saver for me. Works incredibly well for my inflammatory pain within a couple of hours.

Regarding the chest pain - is there any chance is could be costochondritis? Did your doctor mention it? It happens alot with AS and causes some pretty nasty chest pain that some say can feel alot like a heart attack. (Celebrex worked like a charm for my costo pain.)

One tip - I'm not a medical professional so please don't take this above your doctor's advice, but you might not want to start 2 new medications at the same time - if you have side effects, it might be difficult to distinguish which one is the culprit.

Here's my apology (call me a hypocrite lol), I'm really sorry you're having such a hard time right now. I bet things will improve though... you just need time to find a new normal. We're all here for ya when you need us.

Thanks again. wow I would be rich if a had a dollar for everytime I thanked someone here.

Went to my GP today. I think I have a phobia for new drugs now and my doctor agrees. He said he didnt blame me for not wanting to risk taking them and suggested that I dont with everything thats going on. He thinks the stress of it may cause me to have phantom symptoms and then we would have no idea if they are real or not. So just gonna see how I go for now. And strange as it may seem I am happier doing that and dealing with the pain, not sure how hubby will think though with having to then deal with me. For better for worse LOL.

I do have a nasty chest infection though so the doc has me on some pretty strong antibiotics for that and strangly enough they dont scare me. Maybe because they arent new.

Mentaly I am in a much better place even though pain meds wise Im not. Go figure. I guess it comes down to the fact that Im not scared of pain but I am scared of how the meds can effect you.

Anyhoo thanks again for everything
take care everyone.
xxxx

Hi,
Trying Sulfa is the first protocol down here. For antiTNF's you are looking at having CRP>15 and ESR>25 (i'd be guessing thats what the blood reports are for), in addition trial of different anitinflamm's.
Hang in there Champ!

I don't think you're paranoid at all in being concerned about side effects, rather that most doctors are under-concerned about side effects. Doctors go into medicine to cure people, and much rather focus on all the good effects achieved than the bad ones. Both rhuematolgists I've seen fit that generalization, though my primary care doc does not -- he is pretty unusual though. He told my mom to stop taking those poisonous biophosphonates (really, he called it 'poison'!) due to the long-term effects whereas most of the doctors here in the US focus on the short-term bone density gains.

So, it's just as well you're not naively letting optimistic doctors persuade you into thinking the bad side effects will never happen to you. Only take strong meds if the need is equally strong, important enough to balance all those risks. I have a friend with lupus who has to take prednisone and other very nasty stuff, because her lupus is life-threatening. The side-effects are pretty awful... but the disease is even worse.

If you're going to try new meds, your instinct to wait till finished with antibiotics is right on target. Multiple drugs that aren't especially intended to go together seem to increase the chances of bad side effects. I had a horrible experience where a close family member was sent to hospital for weeks after taking 4 different meds all prescribed for a simple case of bronchitis. That was thanks to a careless doctor, who didn't even warn about any potential side effects!

My GP is wonderful, there are 2 that I see regularly at the same clinic and they are both wonderful and are working together to get me all sorted out.
At this point I will not try the meds the rheumy prescribed me, its just not worth it. I am going to try and find this doctor in Brisbane that will prescribe LDN. That seems to be the safest thing to try.

What you say about the naively optimistic doctors is spot on with the rheumatologist I saw. He was very nice and did do a lot of tests and the like but when expressed my concern about the meds he was basicaly well this is what you need to try if you dont want them then you will just have to put up with the pain and the bad side effects are rare.

My question is are they rare for everyone or do the chances of bad side effects increase if you already have exsiting problems or reactions? He couldnt or didnt want to answer and just repeated that they are rare.

Oh well I will just see how I go with trying to get a hold of LDN.

Hello
There is so much for me to read through about you appointment - and I can't give it my full attention at the moment - I'll read through this evening...
I will say (based on speed reading only!!!) that it looks like the appointment went quite well. Good.
As for the medication. You can start it in your own time, Trish.
Take a few days to get over all the things that have happend over the last coulple of weeks. Then you will be able to see clearly and make a decision.
If you were to make a list of everything that's been going on, I think you would see why you are in a state of panic and confusion! LOL!
Take it easy on yourself, sweetie. xxxxx