Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group difficult decisions!!

Well I saw my rheumy yesterday. I have been in one of the worst flares I have ever had since I have had AS which is almost 30 yrs. now. It is quite a mystery as to what has caused this incredible flare especially considering my last x-rays in Feb. showed a severely ankylosed spine, ribs and pelvis. So much for the theory about once you are fused your pain is lessened. One thing my rheumy has learned is that nothing surprises her about AS and no two patients are the same. I went on short term pred. of 60mg a day to get me through my vacation and it worked like a charm. As I came down off of it the pain returned, even worse. The pain was so bad at night that I would catch myself clenching my jaw so tight, that according to my dentist which I saw on Mon. I have actual fractured a tooth. The pain has been in my entire torso front and back. It has been so painful to breath that I have been taking just shallow breaths and when I do take the odd deep breath my chest actually cracks!! Anyways last week my rheumy put me back up to 60mg of pred. with no relief. I am also on Methot. Azulfidine,Celebrex Darvocet and neurontin. I have also been on every arthritic med. known to man so my doc is running out to choices. At my appt. yesterday she said I am not absorbing the pred. for some reason and changed me to an liquid suspension. Her goal is two fold to get me some immediate relief from the flare so I can sleep. I have slept approx 1-2 hrs a night for a month. Then to get some long term relief and get off the short term stuff. She ordered valium at night to help with the muscles spasm. My chest and back are one big spasm she said. Also my ribs are so inflammed you can actually see swelling in my chest. She ordered a duragesic patch which is a heavy duty opiode which secretes med. into my skin on a hourly basis. She increased the neurontin. As far as long term stuff goes we talked at great length(2 hrs) about the pros and cons of humira. At this point I have no chest expansion and the only reason I am breathing at all is because my diaphram is pushing down on my stomach. She said if she doesn't get me out of this flare soon I will have serious pulmonary complications. My other choices for meds are cyclosporin which is a heavy duty anti-rejectiion drug they use for transplant patients, but there are huge known risks of kidney failure. The next is ceftoxin a heavy duty chemotherapy drug which would have all the same S/E as a chemo drug and then last but not least a stem cell transplant. This is making the humira look like baby apirin at this point. You know my concerns about this, so my husband and I have some real talks ahead of us. I know I can't stay like this and my options are looking pretty poor at this point. So I am hoping for some immediate relief with the short term stuff and then I can think with a clear head about my decisions. I can't think too much these days with this kind of pain. So I just wanted to update you all and let you know where things stand. I am so grateful however to have a dr. believe in my pain and want to do something about it. As my experience has been quite the opposite. Anyways that is it for now, I will let you know what I decide.

Love

Simone

Hi Jayne,

Just curious, you make no mention of TNF drugs (Remicade, Enbrel Kineret etc.). Has you doctor mentioned these options? What is you status with regards to the Prednisone? Are you still on it? I've been on it since 1986 and on a maintainence dose of 10mg a day along with Vioxx. Occasional Ultram or Demerol for bad pain. I did the Neurontin for a while. It helped a little but I was on so much I'd fall asleep at the wheel. Also I noticed when you ween off that stuff the pain is worse for a week or so until you acclimate without it. I tend to avoid it and stay with the pain meds when I need them. I also found Xanax works better than Valium (for me). Helps relax better without side effects and no hangover. Also Zanaflex is a good muscle relaxer with out the hangover.

I've been in the state your in many times. I went to a pain therapist to learn relaxation and biofeedback. It really helps, especially when added with the other meds. I did massages three times a week for a while too. If you can find a good massage therapist who can learn just how to touch you it helps tremendously. I'm down to one or two a month.

Hang in there...

Kerry

Hi Simone,

Sounds like you have exhausted a long list of options and gone through a lot already. My prayers are with you and the tough decision you have to make here in the near future.

Glad you have a doctor you feel you can work with.

Take care,

Tim

A pessimist sees the difficulty in every opportunity, an optimist sees the opportunity in every difficulty. - Winston Churchhill

Hi Kerry

I have been on enbrel, twice with no luck,kineret with no luck and remicade for 2 years with great effects.It was my MIRACLE. I was painfree for 2 years!!! Then I developed antibodies against it. I have also been on all the muscle relaxatants and sedatives you have mentioned. I do believe the humira will work I am just worried about all the negative press the TNF suppressants are getting. I am currently doing trager with a friend which is like a gentle rocking massage but find it's effects very fleeting. I am not giving up though and am looking for that next miracle. Thanks for the reply,it just helps to vent and process all these decisions with others who know exactly how I feel.

Thanks

Simone

Hi Simone,

I just read your post and I certainly feel for you. John (cheerful) has been through alot of the medications you mention and ALL of them made him sick -with not much relief. John's condition seemed of have happened overnight and he also has no chest expansion when he breathes and is in constant pain - we were told that his AS is very aggressive and they don't know how much worse it will get (I can't imagine it getting any worse). John did try the duragesic patch and it sure is powerful stuff - he did get a little bit of relief but the side effects were not worth it to him. It is true, that no two patients seem to follow the same course with AS. John's aggressive AS according to doctors is quite rare and I don't know if you've read our posts recently but John is also going for surgery AGAIN! In the space of 5 years he has already had 5 surgeries and has quite a few more to go. His surgery is quite high risk and we too have had to make decisions that will change our lives again one way or the other!! John says the same thing you do - he can't go on like he is either - the upper osteotomies (spelling?) (they had to do it twice) failed so he is all bent over, his ribs are also fused with no chest expansion and now the lower back is going to get fused also, not to mention getting new hips.

We certainly hope that your doctor can find you some relief - meds are not the answer for John so we are hoping that surgery will be of help! If you need to talk more, feel free to PM us.


Joanne & John

PS: We hope to see you at the Ottawa Party

Hi Simone,

You have gone through soooo much and have some truly difficult decisions to make. Thirty years is a long time to endure such horrible pain. My thoughts and good wishes are with you. I am sure you and your husband will make the right choice in the next step on your care. I am glad you have a doctor who is working with you. P.S. That is a beautiful family photo.


Deborah

Simone,

Sorry to hear about your unceasing pain. You certainly appear to have a caring, informed rheumatologist who takes the time (2 hours, wow!) to help steer you through your treatment options.

I've taken many of the meds you've mentioned, with either no effect or temporary relief (some lasting longer than others). Just when I thought I'd exhausted the NASIADs and would be moving to Enbrel or Remicade, several weeks ago I started Mobic and it has reduced my pain by more than half (including the ribcage). Have you ever tried this one? I wish I had more to offer you.

Stay strong and remember that this horrible flare will eventually pass.

Mike



One can never get any but a loose and ignorant notion of such things except by experience.

~ Mark Twain on the subject of pain

Have you tried Arava? It's been around five years and statistically (track record wise) I have a .0007 chance of dying from it, more of a chance of falling off a ladder and doing myself in. It's kept me in remission now for a year and a half. I'm a little leery about Humira because it's just out of drug trials and doesn't have much of a track record about what could happen, side effects, etc.

Cheryl

Dogs know how to listen

Simone, I'm so very sorry that you are going through this. How horrible. I have nothing to offer in the way of advice on meds, and I probably couldn't suggest anything that you haven't tried already in the way of other relief. Just wanted to give you a great big, and very gentle

{{{{{{HUG}}}}}}

Kat

Thanks for the prayers Tim, I need them.

Simone