Psoriatic Spondylitis

July 19, 2006

Hello everybody. I haven't posted in ages. I went to a

rheumagologist the first time about 4 years ago. At that time my

rheumy said he couldn't diagnose me with PA or RA (although my Primary

Care Physician thought I actually had PA). I was experiencing

tendonitis in my elbows, soft tissue swelling in my hands and

stiffness in my hands and feet. Ironically, some relief for me came

when I went to my dermatologist with a case of severe psoriasis. I

had learned that Enbrel would help P and PA, so I thought, what the

heck. Magically, my aches and pains improved greatly.

However, over the past year, the pain in my back has gotten

increasingly worse, I've developed IBS and I've had a hard time with

fatigue, although antipressants seem to have helped some. My knees

are sore all the time. My hips ache and sometimes it feels like

everything aches.

I decided to go back to the rheumy I saw 4 years ago, because he has

such a great reputation and he has the original x-rays that were taken

back then. This time, after telling him about relief obtained from

Enbrel, he felt that indeed I had PA. Then he did a round of x-rays.

After reading the x-rays, he reported to me that I have psoriatic

spondylitis along with moderate osteopenia. I guess my spine must have

deteriorated some over the last four years. This particular Doctor

actually helped directly in the research for Enbrel and practices at

the Denver Arthritis Clinic. He recommended that I stop taking Enbrel

and switch to Humira which he said would better help control the pain

and regulate the disease than Enbrel. Is there anybody on these

boards that also has psoriatic spondylitis and has been on both Enbrel

and Humira? I would be curious if you really noticed a difference.

Also, what can one generally expect with spondylitis? Mine is not

ankylosing at this point, just very little space between the pelvic

bone and the lower lumbar, alothough I get alot of acheing in my upper

back which wasn't x-rayed...does this disease just get worse and

worse? I did have a bone density scan. Maybe I'll learn more from

that too. Has anybody seen Humira completely slow down the disease?

Mark

July 19, 2006

In a message dated 7/19/2006 6:47:02 P.M. Pacific Daylight Time,

radiomark@... writes:

He recommended that I stop taking Enbrel

and switch to Humira which he said would better help control the pain

and regulate the disease than Enbrel. Is there anybody on these

boards that also has psoriatic spondylitis and has been on both Enbrel

and Humira? I would be curious if you really noticed a difference.

Hi Mark...my story is similar. I started on Enbrel in March of last year

and got to about 75% of 'back to normal'. What didn't improve was my spine; I

was having daily inflammation and pain in my SI joints, and sporadic

inflammation and pain in my cervical joints. I had a relatively new rheumy

about 6

months into the Enbrel, and she didn't think my spine pain was due to PA. So

we agreed to a " test " ...I went on prednisone for about 6 weeks and sure

enough, all the spine stuff got better. Once the rheumy was convinced the

spinal

involvement was part of the PA she recommended a switch to Remicade. In her

experience, Remicade has had more of an impact on spinal involvement. I

switched to Remicade in February and moved almost immediately to Seattle. The

new rheumy also said he's seen more spinal improvement with Remicade. After my

first few infusions, I felt completely normal, even with the stress of

moving across the country, new job, back to work full time vs. part time, etc.

For the first time in 10 years, no pain in my SI joints...

There have been some bumps in the road...the FDA approved Remicade infusions

every 8 weeks; for me it ran out after 5. Turns out, the medical studies

show it staying in the system for 27 days (my new Seattle rheumy did a lot of

the clinical trials) but the FDA wanted the cost to be comparable to Enbrel.

So now I am on every 6 weeks (had to get insurance approval) and we will see

how it goes; the rheumy also said we can increase the dose if needed.

If there's one thing I've learned in this group, its that everyone responds

to meds differently. But for me, the Remicade made a huge difference. I had

my infusion Monday, and have been at 95% today and yesterday, despite the

stress of hearing that my dad's malignant brain tumor is back and needs to be

removed immediately (he just had surgery in Feb, radiation, chemo, etc).

Usually this level of stress would have triggered an almost instantaneous

massive

flare, right in my SI joints.

Probably too much information:-) but I would ask about Remicade vs. Humira

if the spine is what is causing your worst pain...

July 19, 2006

Mark, I take Humira but I don't have what you have so I am unsure how to direct

that ?... I do hope you find some good help...

Love and Peace Always

Shaun and Barb

July 19, 2006

Just reding your email and I myself went through same road. About 20yers ago

Reumatologist coud not DX me cause nothing was showing on X ray and never

connected the skin condition. Year later finally I got the DX after searching

for the right Reuma. that was expereince with \PA. The sad thing is that cause

it took so long to get the DX the PA is progressing worse as I age. In the long

run I will need hip replacement and pain is worse and it comes down to nothing

much they can do to stop it except keep the pain level down. Done the enbrel

work for a while until infection so now Im only on methotrexate injection and

hydromorphine ofr pain.

This is something we all haave to live with is pain and the progress of the

disease adn try to cope with it and not give up in our lives.

We must think positive that one day they may find the cause and cure to stop

this diseas so other will not suffer.

It would be nice if doctors know more about PA rather than brushing us away with

minor ache and pain.

takce care juliet

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