Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New to site

Hi, I'm new to the site and AS. My family Dr. told me a month ago that I tested positve for HLAB-27 and because of that along with my history, he sent me to a rheumatologist. I've seen the rheumy once and go back Feb 22nd. He's already talking about putting me on Remicade. I'm a little nervous about it, but right now I'm on voltaren and it's killing my stomach. Also, since the first of Dec. I have a sharp pain when I sneeze. Does that go away? How about this thing with your eyes. What does Iritis look like? Three times in the last year Ive had trouble with my eye looking like it is bleeding or bloodshot. It also becomes sensitive to sunlight sometimes and irritated. What should I expect? AT least I know now why it feels like I'm falling apart sometimes.

Welcome to KickAS. I don't kno wform your post how long you've had signs of AS or what type of pains you have but lots of DOctors are not progressvie enough to give patients the option (if insurance will pay ) to get Remicade so quickly. It doesn't mean it the thing you will do but its good to see a Doctor make it a possibility early on.

Iritis can be very damaging and its sounds llike you've had a few bout with it. Whenever you suspect it you should see your DOc immediately.

AS for this place there are lots of ideas and opinions all well intentioned. Take what you need and come here for a laugh or some comfort or just to complain if the family or friends don't understand.

If you've got AS attack it as quickly as it attacks you. DO all you can to avoid fusing. THe pains are bad the fusing is worse. LOts of folks don't fuse and med's and alternate treatments are getting better so you can be better than most if you get good help.

Good Luck and Welcome.

Hey Nonnie,

I started Remicade therapy last month (Jan. '06), but am still taking Voltaren for the time being. I assume, at some point, the doc will wean me off the NSAID. I take a Nexium pill every morning to combat any potential stomach upset. No problems yet. Are you taking a tummy protector?

Also, you should see an opthamologist for for those eye concerns.

Welcome to KickAS!

Hey welcome to the family
You will find lots of support here and information abounds.
I must say I am suprised your Rheumy has started you on Remecade already. How long have you had AS? You are lucky to have Docs that are aggresive enough to move you along so quickly to the right meds. Hope all goes well.
Cindy

WELCOME, Nonnie:

Quote:

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right now I'm on voltaren and it's killing my stomach. Also, since the first of Dec. I have a sharp pain when I sneeze. Does that go away?

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Voltaren greatly accelerated my AS. I never had even one episode of iritis until I began this drug. I would not take it again, no matter how much pain I had to endure, but I don't have to endure any new pains, thanks to antibiotics and diet. There is nothing that can really protect your intestinal tract from the damage, but only from the pain. In both cases, we are only less aware of the advancing complications. The sharp ribcage pain is due to costochondritis. It can get worse taking NSAIDs, or go away when AS is properly treated. Mine took six months of strict diet and antibiotics to go away completely, but I had very long-standing AS ( 25 years). If you ask in the NSD Forum, I will provide you with a list of effective alternatives to NSAIDs.

Since you have had some of the signs of iritis, I urge you to get right to an ophthalmologist. As Phillip recently learned, it does not have to be severe to be serious--and it can rob you of your eyesight! The ophthalmologist should give you preference, on the advice that you have AS, B27--and possible iritis; it is, normally, a quick evaluation.

Good luck to You,
John

hi
welcome to kickas! u have come to the right place i dont know where i would b without it.
great news u r bein treated and r on remicade, however volteron is one of those NSAID that not everyone can tolerate. i have been on it getting on for 3 years now and m now taking omeprazole (tummy protector) as all my meds have given me gastritis.
i dont wish to scare u at all, pls tell ur dr u r havin probs with it, there is a version which is coated thats easier on the stomach and tummy protectors out there that ease a lot of the discomfort.
i am sorry i am not much help on the iritis front, but i wish u well.
take care
heather

Hi Nonnie, and welcome to KA!

It's good that you seem to have got a relatively quick dx and aggressive treatment, but I agree with the others that you need to get to an opthalmologist ASAP in case you do have iritis, It can be extremely serious, so make sure you tell him you have AS!

Best wishes,

Sue

Hi Noonie, welcome. My dad has iritis and he says when it is acting up it feels like someone is stabbing him in the back of the eye or as if there are needles in his eye, especially when looking at lights. His eyes water and go bloodshot too. It's not fun but he ended up getting a prescription for eye drops from the family phys. I never tried remicade. I was on Vioxx for three years. It worked great. Then when it was removed from the shelves I was put on Celebrex. I have heard it may be taken from the shelves too. I have been pretty much med froo for the last eight months. Once in a while I will feel my joints start to lock up and my back will feel achy. If it doesn't go away after a couple of days I will take my meds for a couple of days until it goes does. Look through the forums, check out some of the links and maybe try an alternative or lifestyle change, like your diet. I found a lot of helpful info on this site. I have actually been back to work for almost one year because I began a program outlined in the alternatives section. I have been drinking salt water. I found the salt water idea under "natural selection" in the alternatives section. I hope you find something that works for you. Take care.

Oh yes, those sneezing and coughing pains. Not a good memory of mine. Like someone stabbing me in the back. Yes these pains do go away when the inflamation goes down. I am currently on Remicade and it's working it's magic on me. It is a decision that has to be made with some thought. For me the pros out weigh the cons sort to speak. I am so glad I decided to try the Remicade. Good luck in your quest for relief. Scotty...

Hi Nonnie and welcome to KA!

First off, I'm happy to hear your rheumy wants you on Remicade. This class of drugs is very aggressive and will halt the progression of the disease while you are on them. I've been on Remicade since last July and the difference it has made in my life has been nothing short of miraculous. I feel better than I have in 20 years! We have a forum dedicated to the anti-TNF drugs (like Remicade) that you might want to check out.

What you describe happening to your eyes sounds an awful lot like iritis. It could also be dry eyes, but with a dx of AS, I would get to an opthamologist for a proper check and treatment. Iritis can be extremely painful and can cause longterm damage if it's allowed to go on without treatment for long enough. Not trying to scare you, just let you know more of the facts.

I've never been on Voltarin, but you'll have gathered from the comments here that different people have had different experiences and results from this drug. You'll find that to be the case with most things AS. What works for one, will not necessarily work for everyone. All you can do is get the info, try things and make your decisions based on your own better judgement and experiences. Personally, I got ulcers within 18 months of going on prescription NSAIDS. Which is why I am now on Remicade. Dragonslayer calls Voltarin 'evil' - my 'evil' NSAID is Indocid. Different strokes, eh.

Check out the diet forum as well. Lots of us have had great results with modifications to our diets. Some go off starches completely, others (like me) only cut out certain starches. Many of us have had benefits from doing this.

The sharp pain when you sneeze, is it in the front or the back? When my thoracic area is acting up, a sneeze is akin to hell on earth. My entire mid spine feels like it's shattered like a crystal goblet thrown into a fireplace. However, if the pain is in the front, it could (as Dragonslayer says) indicate rib inflammation.

Anyway, I'll shut up now. I know how overwhelming a ton of information can be.

Hugs,