Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Active Inflammation???

I had a rhuemy appt. last week that I WAS going to ask for Enbrel to get this AS under control once and for all. She said she does not believe I have any active inflammation at the moment and that there is no need to go on to stronger drugs. She also told me to stop taking methotrexate. ( I have been on it for 7 weeks) She has come to this conclussion because my blood work and x-rays are all within normal range. At my worst my blood work was within normal range but has since gone lower. My x-rays at my worst did not show any alarming signs of AS. In the last year I have improved but I am not quite there. She believes that the pain I am experiencing is due to nerve and soft tissue damage.(aka fibromyalgia) One reason I don't believe her is that the pain is recently moved into my wrists and ankles. So how could I have nerve and tissue damage in my wrists and ankles in just a few months? She wants me to start taking amytriptiline to help sleep and to excercise every day. My question to you is:

1. How can you tell the difference between active AS inflammation and nerve and tissue damage? ( The pain to me feels very similar)




There is no drug stronger than a good attitude.

Your post sounds exactly like what my doc told me last week. That I have no active inflamation and it is probably fibromyalga. I don't know what to make of it. He even went as far as saying , to my GP not me, that maybe my pain is organic........what the heck does that mean???? My GP suggested going the fibromyalga route and put me on Amitriptyline and I took it one day. I spent the whole next day on the couch sleeping.....it's not for me.....

So where do we go from here???

Sherri

Hi Sherri,

It is very frusterating to say the least. She did say that she doesn't doubt that I have some form of AS, but at the moment it is not active. I tell you, my inactive AS is feeling VERY active today. The more I think about it the more I don't buy it.
I am going to follow her instuctions to the letter and go and see her again in Jan. If there is improvement than maybe she is right. If there is no improvement than we will go from there. She said excercise EVERY day, and take the amytriptiline to sleep through the pain. She said if you don't get good sleep you will never heal. She also gave me a prescription for something called neurontin that is supposed to help with nerve pain. I haven't started that one yet. I figure one new med at a time.

What dose of amytriptiline did she give you? Mine is 10mg and I have to admit I am sleeping better. Still experiencing pain but I am sleeping better. I have no idea what organic origin means in relation to pain. Sounds like double talk to me. Are you on any other medications? Do you excercise? What joints is yours in? Has it started in any new ones lately? Keep me posted on your progress. Sometimes I feel like this is never going to go away!

Debbie

There is no drug stronger than a good attitude.

Hi,

I think organic pain, is of the body not, which means pain meds etc. Like you I do n't have elevated esr and csp the usually indications of active inflammation but I can tell you I'm currently going through a typical flare, the type I've had for years.

Sleep is so important and night time pain of the sort we get plays havoc with neuro tx regeneration. There's evidence that long term bad sleep causes shoulder and fascia pain.

Amytrip was one of the first new generation pain killers that worked via seritonin and by
accident they found it it also helps with depression, hence it is also used for Depression but at higher doses. 10 mg knocked me flat on my back so how anyone can function on the higher dose used for D I have no idea.

Amy dampens down the nerve fibres a bit, they think it reduces any memory effect on the pain circuits.

I often use a TENS machine in adjunct with pain meds this brings alot of relief especially at night and helps sleeping.

Best Wishes


David

Something I have wondered about since I began these blood tests is that it is a snap shot of that moment and doesn't really reflect yesterday, last week, two hours ago and so on.

I have heard the same thing since I began Sulfa and have had days where I could feel inflamation....I know I did but Doc says everything is normal the following week when I feel better.

I have an appointment in January and plan to ask about this.

HI David,

You are right, when used for depression the dose of amytriptiline is 50-300mg I believe. I must admit I am sleeping great and so far I am not groggy the next day. I have also heard that it can take up to 5 wks. to help with the pain.
I think my inactive inflammation doesn't know it isn't supposed to be active. Also, if it isn't active then why has it recently gone into my wrists and ankles? That is what I will ask her next appt. Thanks for the reply.

Debbie

There is no drug stronger than a good attitude.

Good question Don. Let me know what the answer is when you find out. One of the reasons she said that it wasn't active as well was because I have good days and bad days. She said if it was active every day would be a bad day. Do you have a pattern to your pain that you can identify? Thanks for the reply.

Debbie

There is no drug stronger than a good attitude.

Hi Debbie,

I was put on 25mg of Amitriptyline and yes I also heard you can take up to 300. I get very little sleep each night....maybe I should suggest to the doc to lower it and try it again.......I can't imagine what it would feel like to be rested.

I've been told by others also that when they supposedly have no active inflamation that their pain feels the worst.....go figure.....we're not crazy after all. My GP thought that maybe organic meant my rhuemie was implying my pain was all in my head.

My newest pain is in my right heel and big toe and my left elbow. When the doc said I had no active inflamation I went off celebrex and my pain was no worse until I tried a 4 hour shift at work. My back and legs didn't agree with that at all. So now I haven't worked for 4 weeks and I do need to go back for my mental health more than anything. I have shooting pains down both legs ....my hips feel like they are being pulled out of their sockets and my lower back is nagging.....my left arm is almost useless .......the other day I was walking along and I could hardly lift my feet off the ground to move.....other than that I feel great (except for being severley depressed since July)

I don't know what to think now. Just keep up the fight.....but it's getting harder. Keep in touch Debbie and I wish you the best

Sherri

sherri,

Funny we must all have organic problems.......you getting any tingles numbness arms going to sleep, clumsy etc....? IO've hd the same sorts of issues on and off for years.

I have no idea how anyone could function on 30 mg, the stuff is so strong. I know people who use it sparodically as well when things flare. Personally I prefer tramadol.

I have to be honest there's not one Dr I now trust when it comes to evaluating pain, and why do n't they treat it early not after all the messing around they do!

Hope you feel better soon

David

I have always had normal SED rates even when I was in max pain. But when they gave me a nuclear bone scan it showed inflammation all over my body, I lit up like a Christmas tree. It's a much better test to show active inflammation, X-rays don't show much unless you're fused. Took me 20 painful years to fuse. I don't understand doctors at all, and think a DX of fibro is a real cop out in many instances. Enbrel allegedly will not only stop the AS process, it will prevent damage, and I think it should be the first line of defense, not the last (after damage has occurred). I'm on Arava, another disease modifier that has really been my magic bullet, went from having to use a cane (really bad SI pain and heel pain, spent a lot of time hobbling) to living a more or less normal life, I swim an hour a day, can take my dog for long walks, and the fun part is I can dance again, something I never thought I'd be able to do. I'm more or less pain free, although still have to deal with the mechanical damage in my lumbar spine, I'm still a bit stiff in the morning and if I don't take my muscle relaxer at bed time I wake up with muscle spasms from lying in the same position too long.

Cheryl

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

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