Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I really need help!

Hi, guys I really need help and do not know what to do. My arthritis started about UTI infection (don't know what), never was able to find the bug, which was 2 years ago.

As of now I'm still having urethritis, prostate, arthritis, hip, spine, eye etc..I don't know if I have ReA or AS at this point or which one.

I've taken Doxy, Cipro, Azithro, Flagyl. Nothing helps except Flagyl helped previously.

I also took Humira which really reduce eye inflammation and few joint pains. But the symptoms return exactly 2 weeks later right around for another shot.

I do not know what to do and I hate taking any meds. My BP is off the chart.

What do I have? None of the doctors i've seen are able to answer anything. This is too rare for them.

Could I still have the bug in my urethra or prostate causing all this?

What could survive all the Abx I've taken? Please help, I'm losing my mind.

HLA B27 Negative. Tested 10 times, literally. Why am I so progressive?

assume ReA, is it post infectious or do I have infection causing this?

I don't know but I'm going crazy. It seems like its better to be dead than dealing with this. I feel like a total loser.

If the Humira helped so much, then why did you stop taking it.

Yes, it stopped working at about the 2 week mark, but that's why you take it every 2 weeks.

For me, it worked well for a week (usually) and then not so well for the next week. But then another shot and it worked well again. So the doctor had me approved for weekly but I could usually hold out 10 days, per doctors recommendation. It took about 3 years, but finally can hold out 2 weeks.

But yes, that's the way biologics (and most meds work)....they work for a little while, then they wear off and more is needed.

So if you had something working, why in the world would you quit it?

I get you don't want to take meds. None of us really do, but if they help and without them we fall apart....

my recommendation:

Don't worry about which form of spondy / inflammatory arthritis you have, instead, take the medication that was helping. That's what I did (they still aren't sure which spondy it is, but you know, it doesn't really matter because Humira is helping so much).

And I'm HLAB27 negative, but who cares. It just doesn't matter.

I think you need to stop driving yourself crazy.

Most people are overjoyed when they find something that works. I know I was..still am.

I never stopped. I'm waiting for my shot to arrive in mail later today.

The problem is HUMIRA after taking the shot few days later I will have severe head pain on top of my head. Think of worst headache you had that would last for few days.

Humira helps with the spine & eye. Nothing else.

My take is could I take that Antibiotics that will get ride of whatever the causing factor is??

or

Is Once your turned AS there is no turning back.

I guess I still don't understand how this disease works. Do you have AS forever or does it go away with right Antibiotics?

You can't get rid of AS. You have it forever. Antibiotics will not make it go away.

I know you can't make AS go away but why are symptoms overlapping reactive arthritis.

Doc says it's hard to fit the picture if it's reactive arthritis or AS.
AS PATIENTS don't have urological issue.

Personally, I think all your arthritis symptoms point to AS. I am not sure that you would be 2 years into reactive arthritis with it being as progressive as you state.

If you have a urological issue, it is probably a completely different issue with no current relation to your AS.

Medication that you take for AS can lead to urological issues. At least it did in my case.

Smed, what medications were those?

Viox, Celebrex, Lodine, Indomethicin, Ibprophan, Dicofanic, Joint Juice, Anicine, asprine, Excedrine, sorry about spelling- The Hematologist also took wanted me to quite taking vit c- multivitamins,vie e flack seed oil, fish oil--all gone-- I have been using low starch and Exercise the last 6 years. The only meds I now take are Metforman and vit D. After 40 years controlling pain with meds and other over the counter my blood was so thin that bleeding became the problem. Almost died 3 times.