Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group newbie

Hi –
Have been reading for a while and thought I'd finally say hello. Have had seriously sore joints for about three years now, coupled with chronic iritis but am still waiting for that confirmed dx. Doc seems fairly sure is AS and it looks like I may have inherited HLA-B27 marker off my mum. She was diagnosed with RA about 20 years ago, but her new doctor is sure she doesn't have it because her joints "aren't damaged enough". Whatever, she still is in chronic pain and her back is fused. Seems obvious now.
I'm interested in the difference between how AS affects men and women. I've had some back soreness - some stiffness when I first started with my iritis but after I started with vioxx didn't have a problem until recently. My doc suggested coming off the tablets to help with the diagnosis. Since then I'm suffering some stiffness and discomfort - BUT it's nothing compared with how my other joints have been over the years.
I know women are supposed to suffer more with the other joints than the spine - but I don't put much store in the theory.

I couldn't move my head properly for eight months last year - can't move my left foot properly now (since April) and previously had to chew my food on the right side of my mouth (for about nine months) because the left side of my jaw was so sore and swollen. (and yes, that was really attractive)

Is this always going to bounce around my joints like this - or will it just pick on those it's already targeted? or will it become more symmetrical? Or what???

What d'yall think? I'm past feeling anxious - and I guess I never was because if my mum can cope so can I. But I'd like to know.

Sxx

PS Life of Brian is the best -
FRANCIS: Why are you always on about women, Stan?
STAN: I want to be one.
REG: What?
STAN: I want to be a woman. From now on, I want you all to call me 'Loretta'.
REG: What?!
LORETTA: It's my right as a man.
JUDITH: Well, why do you want to be Loretta, Stan?
LORETTA: I want to have babies.
REG: You want to have babies?!
LORETTA: It's every man's right to have babies if he wants them.
REG: But... you can't have babies.
LORETTA: Don't you oppress me.
REG: I'm not oppressing you, Stan. You haven't got a womb! Where's the foetus going to gestate?! You going to keep it in a box?!

Hi Swog,

Glad to see your post - sounds as if you've been hit with the AS demon ! This is a great place to be - lots of good information and support ... plus I see that you're a Monty Python fan, so I'm sure you'll enjoy yourself with all of us ... And, don't forget, there's also the Women's Forum.

While I was reading your post, I was thinking ... gee ... I was just like this back in the 1980s. The jaw stuff, the bouncing around from one joint to the next. I still have the odd bounce or a new bounce but mostly things have settled into my si and upper back / neck area.

And what I've learned over the years and certainly here at KA, is that AS is a truly bizarre disease. It affects people so differently. It wasn't that long ago that AS was considered to be a 'man's disease' - which was really tough for us women and getting diagnosed properly. Getting a diagnosis, mind you, regardless of gender, is quite an accomplishment. Finding adequate treatment is a whole different matter.

So good luck ... keep on posting ... and keep on with the Monty Python stuff ... Cat

Hi,

The pain and discomfort you've been having sounds very familar. It can move around heaps, other times it sets in certain places.

I can't help too much with the differences between the genders and the disease. There was a great post about a year ago from alot of the ladies outlining the disease, and displeeling the previous ideas the many in the medical fraternity still believe.

But I think everyone has it a bit differently and that's what you have to watch out for, do n't let anyone make you fit into their knowledge of AS or the other Spondyloarthropathies, the uveitis the gut etc and the inflammation on the tendons and the insertions. Some ladies do fuse as well so do n't let anyone tell you otherwise!!!!

As for the future, well there's lot of things you can do for yourself and their are lots of meds. It's getting/doing what suites and works for you.

There is a diet called the Low/No Starch diet which works for some, you'll find it on the home page down on the left hand side. It really helped me for years and several have found the starch food group independently on elimination diets.

Oh and Welcome to KickAS......

Your mum sounds an interesting case, some here have not only the AS indicators in their blood but also the rheumotoid factor. AS for years was also called rheumotoid spondylitis.....

David

to KICKAS.

Firstly Welcome to KICKAS.

Someone will probably correct me, but I think RA effects the smaller joints (ie fingers), and AS effects the larger (spine), other than that they are very similar.

No as to the effects of AS, it will vary depending on who you talk to. AS effects everyone differently. The common theme is a loss of range of motion in a joint which then leads to the fusion of the joint or damaged joint. One import saying here is "Use it or Fuse it", so try to keep all your joints moving as much as possible.

Some people will tell you that VIOXX is bad, but the way I look at it is that if it helps you stick with it, make sure you take it with food. If it is not helping look at moving to another medication. If you do get diagnosed with AS, then talk to your Doctor about the new DMARDs Enbrel and Remicade, many people are posting great success on these medications.

Iritis (UVeitis) is common with people who have AS. Get this treated immediately as it can cause permanent eye damage.

Jaw problems are also common, do a search on TMJ.


The rest of my post is my normal welcome information and is well worth a read.

You will find this site and the people on it very supportive, knowlegeable and experienced. One of the great aspects of the site is that people share experiences.

Have you been through the normal battering of tests, XRays, MRI, Catscan. Have you had a blood test done, HLA-B27 positive or negative, Rhuemtoid Factor, ESR and CRP readings.

Look around the site, there is a lot of useful information, the following are things you should look closely at.

The NSD No Starch Diet is well worth trying, many people here have had great success with the diet, some have managed to come off all medications on the diet. If the diet works for you, then that is got to be better than taking medications. Remember though that the diet does not work for all of us. If you are serious about trying the NSD, try starting with the 3 day Apple diet first, I think it is a system cleanesing/detox diet. As to the NSD, there are differing levels of the diet from strict NSD to LSD to Gluten Free. My suggestion is to try the strict NSD first and migrate down to the lower levels experimenting with various foods and there effects.
Here are some links. (just click on them)
AS Dietary Primer
AS Foods
No Starch Forum
No Starch

As far as medications, have a look at postings related to Enbrel/Remicade/Avara/Humira these are relatively new medications to treat AS, the downside is that these drugs are extremely expensive and you will need to check if you are covered. Many people have posted great success on these medications.
Check out the AS Pharmacy Forum
Medications

Myself, I think the answer lies in finding the right combination of Diet/Medication/Exercise that suits you, everyone is different.
There is a saying here "Use it or Fuse it", exercise is really important. Some suggestions are Yoga, Pilates, Tai Chi.
Hydrotherapy is also well worth trying.

One other thing, learn as much as you can, you may find your Doctors knowing very little about AS, and I suggest that you become proactive in your appointments, ie suggesting and discussing things that you find on this site with your Doctors.

Look around the site, there is a lot of useful information here.
If you have any questions, post them up and you will be surprised at the amount of responses.

Another thing to watch out for is Uveitis (a form of Iritis), which is common with AS.
UVEitis
If you get this see an eye specialist immediately, as permenant eye damage can occur if not treated.

The following link's are some light reading on AS.
AS Information 1
AS Information 2
This link also descibes the link between IBD (GI) and AS.
AS Information 3
AS Information 4

Also if you go back to the main page KICKAS Main Page you will find the following sections with great reading information.
Medical Center
Diet Center
These sections are well worth reading.

Also if you need a good laugh there is the Jokes Forum
Humor

Sorry for all the reading material.
Take Care
Wayne

The peripheral joint thing in women with AS is no myth. For whatever reason, women tend to fuse later than men, but we also tend to have more problems with the peripheral joints, which often makes getting a DX of AS a big uphill climb. We have all the pain but don't show anything radiologically and thus many doctors don't take our complaints seriously.

AS is more often than not asymetrical, as in one ankle, one knee, etc., whereas RA is symetrial, both ankles, knees, etc. The jaw thing is likely TMJ, a common complaint here. I once had a really bad ear infection and delayed seeing a doctor because I thought it was just TMJ making my life a misery again. Have you had any heel pain? Rib pain? Over the past years (more than I'm willing to count or admit to) AS has been a moveable feast, this body part one day, another one another day, but always the back biting me.

As for the left foot, that has been one of my biggest problems for years, found out last year that it's fused, who knew AS could fuse other joints!!!! Buying shoes is a real challenge for me, good thing I live in Florida and can get by with sandals most of the time.

And welcome to KickAS!!!!

Cheryl


My guy

If you can't be kind, at least have the decency to be vague. Author Unknown

THANKS.
It's good to hear that everything is "normal". I'm relieved about the TMJ, because that's on its way back and I'll be able to nag my doctor for some more targeted medication. I ain't going through that again.

I told my mum about how it's possible to have the Rh factor but actually have AS. I'd seen it written down years ago, but had never been able to get it explained. How many people have been diagnosed with RH along the years, but found out it ain't?
Also, is there anyone out there with kidney problems related to AS. My mum has serious problems with her kidney and bowels. This is why I've been certain she doesn't have Rh for a while but her doctors won't look at it as a package of symptoms. They say it's too rare to have the inflammation in the joints and internal organs. But that is not right, right?
Anyway it's fired me up even more - I'll be taking her along to the Rheumatic Hospital in Bath this year (even if I have to kidnap her) and get her to the AS centre to be checked out. Bless her, she can't carrry on going into hospital every month for people to scan her kidneys and say they don't know what it is while her Rheumy has taken her off the methotrexate because she doesn't have Rh and has just left her! Makes me kind of feisty. I'd give him inflammation if I could get my hands on him! heh, heh...

What kind of biologic drugs are there?? My docs have been saying I should be on them - they are just waiting for my latest round of test results to see what's going on. Nothing has shown up in my blood, apart from the HLA-B27, as usual, and I don't think the X-ray was particularly clear either. But then they never have been. But still, with the foot the size of a melon, an eye department file the size of a mattress and an ever stiffening back they're quite happy with the dx so far. It's just frightening that had I not recently moved to an area with such a good research team, I'd be totally on my own. My first rheumy told me my only problem was with a tendon in my foot and recommended I get it removed!! Thank God he didn't treat me for my stiff neck/jaw - I'd have probably lost an ear!

I had actually been on a low starch diet a few years ago, coincidentally, with enormous success. It was before I even knew I had a problem. I'd been getting sharp discomfort in my back and round my ribs at night - so bad it was waking me up and I'd have to move around to ease it. It took my breath away. I thought it was my kidneys and so went for some scans but nothing came up. I was so embarrassed I never went back to my GP but in desperation tried my homeopath. He suggested this silly diet, but one of the rules is no wheat. And hey presto, overnight it stopped.
I just figured I was wheat intolerant and still try to avoid it. I used to be really strict with potatos too, but really it's not easy is it? But I'll give it another go - nothing to lose, right? except some cellulite, I hope!!

Well, take care and thanks again for the top advice.
Sxx

Hi Swog,

Glad that our responses helped. And yes, the jaw pain thing is not fun. One thing that I'd suggest you do is to make sure that you keep your jaw stretching as wide as possible. After many years of living with jaw pain, over time, my jaws have fused. Not fun trying to eat anything that can't be smashed flat enough to fit into my mouth. I don't usually have a lot of pain anymore ... but trips to the dentist are nightmares writ large.

If you want info on the biologics, then I suggest that you read through the Pharmacy section to find out more about them - enbrel, remicade, humira.

Good luck to ya, Cat

swog (great name). Why are you going to Bath if you're in Yorkshire? is it because that's where mum is or is it there's an AS clinic there?

Are you from the UK then???
My mum lives in S Wales, but there's an AS centre at the Bath Hospital for Rheumatic Diseases. I reckon they will at least give us a more reliable opinion, one way or t'other.

Hello Swog,

Want to welcome you to Kickas, the best site on the web for AS.... actually just the best site on the web period.

Glad you do not feel that anxious... I know I have been from time to time despite my father living with the disease much longer than I. But when things seem a little down, it always turns around at some point.

Much can be learned here at Kickas... diets, new meds (Dmards, TNF etc...), exercises, alternatives.... best advice I can give you is become informed about AS, you will reap the benefits.

Take care,

Tim

Hope is only a post away with KickAS.