Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS or not?

Hi,

I have increasing pain in hips, neck, shoulders, knees, hands, & lower back for the last 2 years. I'm 48yrs old with a family history of AS & RA. My father and half brother have both. I have an elevated ESR (21 to 35 in two years), HS-CRP of 2.6, positive HLA-B27, x-rays are normal for fusion but show several bulging discs, spuring, annular tears from neck to pelvis. Negative ANA.

Is this just plain old arthritis? I feel 100 years old. Any advice would be appreciated. Rheumy doesn't say much just says take NSAIDS.

Thanks,

DebbieZ

Hi DebbieZ:

Sorry, AS it is. Fire your Rheumy and join us in the NSD forum.

Best Regards,
John

Hi Debbie and welcome to KA!

Sure as hell doesn't sound like plain old arthritis to me. HLA-B27+, family history and hips, neck and shoulder involvement, elevated SED rate sounds like it could be AS. However, as you know the combination of AS and RA is not unknown. Have you been to a rheumatologist yet? What did he/she say?

Hugs,

Kat

Hi Debbie and welcome to KA! You've definitely come to the right place to get answers and support.
I have to agree with what's been said already. It sure does sound like AS.
Do you find that mornings are tougher for you and the stiffness starts to wear off some after you start moving around? With AS this will happen.
Also with AS, as with RA you can have pain after doing too much activity, but with AS mornings are usually a tell tale sign if the stiffness improves as you get around. Like it was said...it happens often that a person can have both AS and RA, but the two can be very familiar, especially if the AS is long standing and aggressive.
I have to agree with others also that maybe you should get rid of the rheumy you have and start searching for a new one. Finding a good rheumy that knows alot about AS (even a little) can be difficult. Alot of us here have gone through 5-6 even 7 or more rheumy's before finding one that has some knowledge of AS and more importantly the correct way to treat it. There is no one correct way to treat it, because it's mostly trial and error, but you need to at least find one who will listen and take an active role in first trying to diagnose you correctly and the try the different ways there are of treating it.
Both my primary doc and rheumy are always working together trying to find not only different ways of treating the AS, but ways that'll make me more comfortable, flexible and live as easy and normal as possible.
I know I am lucky to have the docs I have, as I've heard a lot of horror stories, but half the battle will be won if you can find a doctor that'll at least do the first two things I mentioned...diagnose correctly and treat the best they can. Everyone deserves this, but it can be harder to find with a disease such as AS.
I wish you the best and hope you find some relief. I also hope you continue to come here and learn as much as you can and experience the wonderful support that this site is has to offer.
Hugs,
Lisa

Welcome DebbieZ!! I am fairly new myself and have found this site to be a godsend. - McMom

Hi,

Welcome/Sorry to hear about discomfort and pain.

The internationally recognised criteria for AS are all too easy to meet, but as you describe your case you would certainly fit from what I understand. (PS I'm just a sufferer not a health pro or is that a surf in a land of good and cruel kings?)

I have just been reading up on RhA (RA can be reactive on this site) and this too has been positioned by some researchers as being another form of Sero negative Spondular Arthrosis of which AS is one more down the classification tree, which includes Reactive Psoarisis etc.

I think the term was reactive arthritis and I can't remember what the micro organism was......I add this as my son is showing signs at 10 and his mum's mum is a RhA so I've been checking out the risk.... of my genes and hers....

Read on up this, check out your GI tract, NSAIDS etc diet etc......

In fact the AS criteria are too easily met and makes (important for meds) Differential Diagnosis harder. The good news is that you seem to understand your blood results and those you have stated, other guys here have re[orted they respond well to the suppressive and disease modifying drugs that are now available.

My thoughts on Xrays etc too late if the damage can be seen, Get a referral for a bone scan and get a full survey.

Ensure you have a good rhemmy...and GP (primary carer)

GOOD LUCK


David

Does the pain and stiffness improve with moving around and get worse when you're sitting for a time or at night in bed? Is it worse in the morning? Is the peripheral joint involvement symmetrical or asymetrical? (With AS it's more commonly asymetrical, ie, left ankle, right knee, not both of the same joints). Otherwise it sounds as if your problem is not garden variety arthritis but AS related. I have both AS and RA, RA is trying to chew up my fingers and toes and AS has wreaked havoc on my back, fused SIs, and lots of lumbar damage, stenosis, loss of disc height, bulging discs. I'm on one of the new DMARDS now and am as close to remission as I'm likely to ever be, still have two painful fingers in my right hand which I've been told is mechanical damage that keeps the tissues swelling. I am due for another pred shot at the base of two of my fingers It usually takes care of it for a few months but I do dread the shots, not fun at all

I don't think I've met you yet, so Welcome to our wonderful site!

Cheryl

If you can't be a good example you'll just have to serve as a horrible warning.
Jennifer Cruisie

Dogs always think your cooking is wonderful

Hi DebbieZ, nice to meet you :)
I think it sounds like AS. And since your close relatives have AS, I think you may too. Trying NSD may be a way to find out, it worked for me.. See if pain eases.. And you should change your rheumy too, (I know how it feels not to get answers to your questions.. Read all the forums and see if you can learn more about AS) And I think you should see someone who is an expert in AS..
Take care..
Meric :)

Thank you all for caring and support. Yes I do feel worse in the morning, when I sit too long, and at night. If I keep moving I feel more loosend up. I started back at the YMCA a month ago doing light weights and the treadmill. Energy level has improved but my legs are always aching. I only do the treadmill 3 times a week for 30 minutes at a low speed. When I had my bone density they found some changes in my right hip so I needed to start some weight bearing exercise.

I also have Multiple Sclerosis which sure doesn't help with the leg weakness and pain. I will look for a new Rheumatologist who will work with me on a treatment plan. Maybe physcial therapy might be appropriate.

I'm glad I found you guys. A God send.

Take care,

DebbieZ

Hi Debbie,

Welcome to KA - it was a godsend for me, too. I have MS, RA, and AS, so if you want to PM me and commiserate I'd be happy to chat. Some drugs for AS are reputed to cause exacerbations of MS, so be careful what you take. I agree with others here: fire your rheumy and find another. Not all rheumies are created equal - some keep up with new developments and educate themselves about AS, others don't. I think most of us would agree that it's important to have as much personal control over the management of chronic disease as possible, and if you're not getting all the information you need, then you can't make responsible choices. These are Big Bad diseases, and we deserve the best care available.
Glad you found us, and keep posting,
Laurie