spondyloarthritis

Hi Scared. I also have SpA (Spondyloarthropathy). I just started Humira last night. Starting these meds is a scary proposition. It took me quite a while to finally agree to it.

There is a great website with lots of info on SpA, although much of it leans towrd the more complicated Ankylosing Spondylitis. Take a look through their info and I'll be happy to answer any questions that I can. spondylitis.org

I test HLA-B27 negative, but the reality is that this is not diagnostic for the disease. People who test positive are more likely to develop it, but they may not. Likewise, people who test negative can still develop it. Genetics is in it's infancy and it's suspected that many more genes play a role in disease development.

Many people have done very well with remicade for the SpA. Hopefully it will get you some great relief and you'll find a remission.

sorry you having such a bad time.  I have AS and up until end of Jan, i was in agony. I can't begin to tell you how down i was and life was so painful, no matter what i did it hurt; sit, stand, lay down, breath.  I was able to sleep for no more than an hour at a time and that was when about half an hour after i took my cocktail of painkillers (tramadol, 100mg diazapam 10mg and paracetomol 1000mg/co proxamol). they never took my pain away, just took the edge off for about 45 minutes and made me drowsy enough to fall asleep thro the pain.  I'm 25 and could not imagine how my life was going to be, i had to move back home with my folks and kept a phone by my bed cos i had to call my mum to get me out of bed in the night if i needed the toilet. 

(i wasn't even diagnosed at this point!)

Anyway, i started remicade (for my crohns which was bad) and within DAYS my back pain had gone completely....not a single twinge!!  I wasn't expecting it to help but it was like a miracle drug.

I'm due for my next infusion in a week and the pain is creeping back....not nearly as bad as it was.  Remicade has given me my life back and although there can be side effects, i have none.

I'm so grateful for this drug and would recommend it to anyone!

Lise:o)

ps: i am HLA B-27 positive

Scared, there are lots of things that can be tried to get some relief, although I've done the best with meds. I have a Pain Mgmt Doc whose sole purpose is to try and help me feel as good as I can. I've been using muslce relaxers for the spasms in my back, antidepressants, which help to relieve nerve pain and keep my mood up a little and narcotics for pain relief.

I absolutle love when I have the opportunity to go for a massage and I'll try to talk anyone that I can into a shoulder rub. Most often, it's my Mom who'll take some time to try and release some of the spasms in my back, but a professional deep tissue massage is wonderful.

There is some debate as to whether it's appropriate for people with AS to undergo Chiropractic treatment. I believe that if fusion has not yet occurred, it may be helpful. Several years ago, before my Dx, I had a wonderful Chirp who helped me a great deal. He's retired now and I need to find another. It's on my "to do" list.

I've had steroid injections into the worst of my joints and into the spinal canal itself (epidural). These have helped some. Also, my Pain Mgmt Doc has used Radio Frequency shot through needles to disrupt the nerve pathways and keep the pain signals from getting to my brain. I keep a box of LidoDerm patches handy so I can paste one over any specific area that is giving me too much pain. These release Lidocaine into the nerve endings in and just below the skin and can be very effective without resorting to pain pills. There was a clinical trial underway comparing these patches to the effectiveness of Celebrex and the results showed that the efficacy was the same. Unfortunately, Vioxx and Celebrex got pulled off the market and the study was discontinued.

Physical Therapy has also been found to be effective in bringing relief to some people with AS and there are some who swear that they've benefitted immensely from the NSD or Low starch diet. Here's a link to some info about it. I'm sure a google search will bring up more if you're interested.

http://www.spondylitis.org/patient_resources/diet_london.aspx

So, scared, there may well be many things that you can do in addition to meds and ice packs that will help bring you some relief. Try to remember that the begining is always the hardest. You need some time to learn about the disease itself, how it is affecting you and what you can do to keep it as under control as possible. As time goes by, this will get easier and less scary. In the meantime, you've found a wonderful place to talk about it with others who understand exactly what you're going through.

Best wishes.