Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group SHOULD I "STOP" THE (((ENBREL)))???

Yeah I talked to my Rhuemy about the ENBREL alot but nothing to how much of a dosage I should take... Well my last injection was about 10 days ago and so far so good! So maybe I can do it like you are every other week! Now my question is the pack of ENBREL you get in the 25mg does it come in a set of 8? My pack of 50mg comes in a set of 4 to last me for the month... Soo I'm guessin the 25 come in a pack of 8? so that could last me 4 months with a 25 mg every other week instead of the 50mg lasting 2 mo ?

Dear Mase02, I understand you have a difficult time in deciding what to do. You have life ahead, with all it's oppurtunities and all your dreams. Indeed no-one can be sure what even is the right answer to your question. Due to fact that AS/other seronegative spondylitis developes very individually you can't know what the future will bring. People with an aggressive progress, had really seen bad times and surely really will encourage you to think twice and use any available help to stop bad progresses. Others have had less bad progress and probably think you can see what time brings. I had read stories of people not taking there disease seriously enough in it's beginning and got bad fusions until, they understand what they should have done (too late), but others had have no need for even medicin for years.
I encourage you to discuss your worries and questions with your doctor, who knows how serious your disease is and for what reason he decided to start Enbrel. What ever you decide to do, remember that the most important thing to do is to prevent fusions. Besides flares and active inflammation, fusions are the most limiting factor to live a normal life! Take care and listen to others and to yourself, too!

Well said! and thank you! Iam seeing my Rhuemy next week so I will ask alot more questions on the matter and see what he thinks I should do..

i wasn't trying to lecture you
just to give the facts as i see them as applied to my disease.

good luck to you

what country are you from ?

Mase,

I get two boxes of 4 packs each month.

Bob

Hey

I am late getting to this thread and for that I apologize.

I can understand where your anger and frusteration come from.

I am the mom of a 15 year old with AS. He was diagnosed at the age of 9. We had some really scary moments, and I can understand totally where you are coming from.

Eric was on his Enbrel for a while, then was able to come off it for close to a year....total remission.

Then another flare came, and he was back on it until they were able to get the disease back under control.

Erics dosage was also less than what an adult would take, but not at first...we slowly weaned him down. Something for you to discuss with your doctor.

Please PM me if you feel the need to. I have broad shoulders, so if you want to yell and scream, kick and holler....it will be fine.

Like I said..I am only a mom of a child with this stinkin disease...but I always around if you need me...

ive been jabbin away for about 6 months now .. im physically 5 years back from where i was - simply amazing. i get the feeling its startng to plateau but not sure.

keep taking it !!

Patrick

Hello Evelyn!
I'm new to the website and am searching for some answers. I have chatted with "alohaben" a bit,and he recommended that I check out your message in relation to reactive arthritis.

I was diagnosed with A.S. this past October and have been in agony for 5 years now. It all occured when I took this HGH spray product which left my left side numb for awhile; however, I was still able to move. Then I developed a bladder problem, which the doctors described as interstitial cystitis. I was going to the bathroom countless times during the day, and the pain was so severe I couldn't hardly stand it. I was on all kinds of meds to compensate for the pain, but nothing worked.

After I had my second son, my gyne recommended another urologist, who finally discovered that I had major high bladder pressures and had a functional blockage in the urethra causing all the pain. A MRI also noted major inflammation in my lumbar area along with my SI joints, mainly the left side. The doc told me that my bladder was wigging out from the inflammation I had in my lumbar and SI joints, and I was experiencing the arc effect.

The rheumy I first saw shot me up with methotrexate, and cortisone, all considerably too expensive and not helping either. The only thing that seemed to help was the prednisone. After she told me to suck up lysol when having a sinus infection I decided to get another professional opinion. The second doc has put me on celebrex and enbrel. The celebrex messed my bowels up, causing constipation. The enbrel that I have taken for 7 weeks now has given me some good days, but I have encountered burning in my spine, ribs, and other joints. This I don't recall having so much before the enbrel. It was more of a torch in my butt and much pounding. This has somewhat gotten better, though.

Anyway, from what you mentioned, I think that the HGH spray caused reactive arthritis, which has now led to AS. It does make sense.

Do you know of anyone else who has encountered bladder issues with reactive arthritis / A.S.?

Thanks for all your great posts!

Nikki

Hi Nikki, I don't recall coming accross any connection between hgh and reactive arthritis in anything that I've read, doesn't mean the connection isn't there, it just isn't familiar to me.

As for urinary tract symptoms, urethritis would be one that can be seen with reactive arthritis. conversely genito-urinary tract infection can lead to reactive arthritis, so a urologist is really a good idea for you.

another possible consideration is something called cauda equina syndrome -to the best of my understanding-this would be that the nerves that control the bladder ( and bowel) undergo irritation or compression, due to changes or narrowing or swelling or inflammation as the nerves emerge from the spinal tract. One of the symptoms can be difficulty with voiding. Cauda equina syndrome can sometimes be associated with AS, and you might want to follow up by asking your doctors if this is a possibility for you.

Best wishes, Evelyn