Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New user needs help

I have struggled with joint pain for over 15 years now. The pain started in my hips when I was 16. This was diagnosed as bursitis but no one seemed to relieve the pain for me. Several years later, I began seeing a rheumatologist who did tell me I had arthritis located in my lower spine which was causing the bursitis in my hips. Several tests were performed and it was discovered that I am HLA B27 positive but the doctor was reluctant to say I had AS. There is a genetic link as well as my father has AS. I have been watched over the years but have never received an accurate diagnosis of my condition. Over the years my pain has moved but has been located in my spine the majority of the time. One doctor has determined that I have degenerative arthritis in my cervical vertebrae. No doctor has been able to say definitatively that I have AS though I believe that I do. The last rheumatologist I saw was 3 years ago and he made me so fed up that I have refused to see anyone since then. I have been doing fairly well on Naprosyn and ultram until the past month when I have had constant pain so I am in search of any advice that I can get on this disease.

Of course I will be reading all previous posts but specifically I would like to know what meds others are using that have been effective and how important is your doctor's role in the management of your disease. I can't continue going on in pain like I've had the last month. I have two children ages 5 and 8 so I'm on the go constantly. I hate feeling like a 90 year old woman when I'm only 31!
Amy

Amy Ediger

Hi,

Im sure you will have to try many different 'pills' beofre you find one that works.

Since seeing my GP, and 'getting him to listen' I am now 60% free from the pain I once had in my lower back. I now know what I should eat, how I should exercise, which 'stretches' to do daily and how to correct my posture. Im glad I know this all now, and not 10 years down the line, when its too late.

I've only seen a rheumatologist once, and see him again next week. His thoughts on my condition, and his knowledge made me feel better about the whole situation. Also, my GP is also knowledgeable, and has countless other AS patients. Between the two, I feel better about coming to terms with things, and dealing with it.

welcome to the ups and downs of AS. You may want to check up on www.aarda.org which is the American Auto immune group which tends to look at all auto immune afflictions in a holistic way as most people will develop over time more than one auto immune response including according to this site a predisposition to cardiac problems and has opened my eyes on many different aspects of this problem. They also have a great doctors check list on how to approach your doctor, and I believe they keep a database of different specialists.Here you can vent, scream and make great friends who will be there when you need them and keep asking questions.
Rat

HI AMY.I think you have to find a good doctor then trian them to your pain.Thats what i have done.The pain you need to get under control or it wears you down.I don't know how all the moms on this site do it.Hope your flair slows down a little.
Bradford

If you're a woman it takes like forever to get a DX of AS, the so-called "Man's disease." Even with evidence smacking the docs in the face, they always seem to hedge their bets. I had symptoms since I was in my late 20s, was DXed with RA when I was 33 - - well, they had to come up with something, I had peripheral joint involvement (my left ankle, damage they could readily see and therefore couldn't ignore) - - but all my complaints about pain in my lower back and going out over the top of my hips was somehow dismissed. I finally got a DX of AS two years ago, which was over 20 years later.

As far as treatments, some people swear by and have good luck with the no starch diet. I tried it, didn't perform any miracles, but then I don't believe my condition started with reactive arthritis (which is triggered by an infection) so perhaps I wasn't a good candidate. I went through all the NSAIDS over the past two decades with sometimes moderate relief, sometimes just a stomach ache, and sometimes dangerous side effects (Celebrex elevated my BP to dangerous levels). I perersonally think the future of viable treatment options will be the DMARDS (disease modifying drugs) such as Enbrel, Remicade, and what I'm on Arava, which has been the first drug that has ever really gotten rid of 90% of the pain and much of the stiffness, so I can now lead more or less a normal life. Also has pretty much gotten rid of Sjogrens Syndrome (dry eye and dry mouth and dry other things in the body we can't see or feel), very uncomfortable to feel like you always have sand in your eyes, and also TMJ. It has also helped my peripheral joints, I have a fused left foot that has been very painful over the years.

Oh, and welcome to KickAS

Cheryl

Sugar Magnolia wishes everyone a Happy New Year!

Hi,

The most important advice I can give you is to keep looking until you find a rheumy you trust. I was misdiagnosed several times. I went to see physiotherapists, neurologists and neurosurgeons. In the end, I started to believe it was all in my head. My GP, finally found out i had As. I had been limping for two years then (if I could walk at all). I had even been in hospital for a while because they thought I had a tumor.

The first rheumy was very competent, lots of publications, studies in America,... But I couldn't relate to him. I never felt he took me seriously. He just did what he thought was right without checking what symptoms bothered me most. I was first treated with NSAIDs. The ones that worked, gave me an ulcer (went back in hospital). The other ones didn't help. One of them even damaged my liver. At the time, enzymes were up by 600%. He didn't bother to tell me. I found out from my gp five months later. It has only started to stabilize just now ( a year later).

If course, I looked for another rheumy. She is perfect. I can relate to her. She actually asks what problems I care about most.

So keep looking until you have a rheumy you feel comfortable with.

I am currently on sulfasalazine and naprosen (yes, an NSAID). It works for me. I can work normally, and I limp a lot less. The bad news is that there is no standard treatment. My drugs will probably not work for you. It will take time and you will feel frustrated sometimes. Only a GOOD rheumy can help you find the right treatment.

Take care
(I know my english is a bit rusty, but hey, I'm practicing)

Nele

Hello Amy

Welcome to KickAS.

I don't have much to tell you in the way of medicines. I tried lots of the NSAID's until they beat the heck out of my stomach and finally gave up.

It seems as if Doc's are less willing ot give women a positive diagnosis of AS.
THe medicine forum here may have some info. My mother and her mother also had AS. My MOther is in her mid 60's and has fared very well for decades on Sulfasalazine. SHe has flares but as long as she's taking the coated sulfa she seems to do OK all in all.

SOme of the folks here have had wonderful results with Enbrel. Others are trying nonconventional things such as complete dietarty change in partikcular swithching to a NSD (no starch diet) I was a skeptic but have had some souccess by eating a very Low starch diet. Don't have the will power or time often to be completely NSD.

In any case best wishes.

 
stevec-they also serve who stand and wait

Welcome. I am new too! I have tried a lot of meds in the last 3 years. Now I am on indocin but have to keep my liver checked every 3 months. It does help. I am still searching for the right Dr., someone who actually understands the disease! Best of luck to you!

Diana

Diana

Hello Amy,

Welcome to Kickas - I hope you get the information and support you need to help fight AS.

As for your two questions - well, Mobic or Meloxicam has kept me out of trouble for several years now, and I have been able to reduce the dosage too (it is one of the NSAIDS)

What part do the doctors play in disease management. Unfortunately pretty much nothing - I have a regular check up every 6 or 12 months depending on how i'm feeling and that is more them collecting information and monitoring my bloods more than anything else.

Good luck with your searches for information.

Cheers
Jo

Never be afraid to do your own thing