Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group good news, bad news, worse news

hey all,

I got the results of my x-rays back. The good news is my upper back and my spine look clear, the bad news is that my lumbar spine is fusing. The worse news is that now there's now logical reason for my upper back to hurt worst and my lower back to not hurt much at all. I suppose the fusion in the lower back puts strain on my upper back. Anyway, I really want to get my symptoms under control, whether they're from fusing or muscle strain, or inflamation, I'm at the point that I don't care anymore and just want to get on with my life. Right now I'm on indocin, ultram, and enbrel and I'll admit that they make a small dent in the pain, but its not very much relief. I would use a morphine based product in a heartbeat, but my dr has made it clear he doesn't want to use narcotics. Besides, all that would do is cover up the pain while the disease takes its toll. I've done enough of that already between the time I spent without a specialist just taking painkillers, and the time I spent with a quack who did a complete 180, said I didn't have a problem and took me off all anti-inflamatories. I was wondering where I go from here. How do I impress upon my doctor that his treatment isn't helping enough. Last visit all he did was scale back the ultram, which is reducing my quality of life. I don't want to switch doctors because he seems to really be trying, but doesn't like painkillers. Should I see if he'll add MTX to the mix. Or might a 2 week pregnisone pack get my symptoms under control to the point that I can continue with the meds I'm on now (I really hate pregnisone, btw)? Thanks in advance for any help.

Jeff

Jeff, sorry to hear about the fusion. The fusion is the reason there is less pain in the lower back. Just an FYI, prednisone is what helped me considerably, not the two week pack, it was more a three month thing, starting at 60 mg and gradually tapering down. If I flare again badly, I will be asking, nay, demanding this from the rheumy, she won't be happy, she wanted me on MTX, but I said no, and the prednisone worked, so I'll stick with it. (Yes, I'm aware of the dangers of steroids, but heck, MTX is a chemo drug, albeit in lower doses for us, knocks the crap out of your liver (I do enough of that with beer ))

Ian



Beer is proof that God loves us and wants us to be happy. --Benjamin Franklin

Jeff,

You have to do what you feel best is for you, but if it were me I would tell him pronto that he has NO idea what my pain is like or how I tolerate pain and that as a Dr. he needs to listen and prescribe accordingly.

There is nothing wrong with narcotics when used in a controlled situation. He has the power on what to prescribe, how many and how often so I don't really understand what his problem is.

As far as masking your pain, that is exactly what they are for to help control the pain. You can keep taking meds for inflammation and further damage, but pain control is one of the biggest concers with AS.

If my Dr. wouldn't give me something I would be gone. I currently take Oxycodone and I am getting ready to ask for Oxycontin.

That just kind of chaps my hide,

Good luck!

Lisa

Hi,
I absolutely agree with Lisa. Unless it is your philosophy not to take them, when you need them for pain control you need them and that's it. All the DMARDS and NSAIDS aren't always enough. You may want to talk to him aobut lower end narcotics such as
Darvon(milder) or switch docs. Yes, it masks pain-that is the point. As long as you are treating it ith DMARDS etc. which you are there is nothing wrong with masking dome od the residual pain with narcotics.
Good luck

Julie


Kodi

Hey Jeff,

Pain relievers are suppose to mask the pain and dull your senses so you don't feel it as much. I have been to those doctors who don't believe in providing their patients with narcotics to reduce the amount of pain they feel, this is a clear violation of their ethics and sworn oath to help their patients to keep from suffering and from pain. When they tell me they don't believe in narcotics I have tried things their way to see if they knew best. So far those doctors are all history.

I'm not a candidate for MXT, but my mother has great results from taking it. I usually take the predisone packs to help get the immflamation down to a more tolerable level. That way I don't stay on it for an extended period of time, which can lead to other problems in the future.

Brent

Sandy

Well, I would have to ask the doc if the disease is going to take it's toll anyway what's wrong with a little pain relief while it's happening? I would also mention to your doc what you said about your quality of life. I sought out a new doc because the one I was seeing only wanted to keep putting me on more and more NSAIDS even though I repeatedly told him I couldn't tolerate them. I went to a new doc and after a couple of visits he put me on Vicodin around the clock and I got some of my life back. I don't usually like washing dishes but the night I was able to stand in front of the sink and clean them was one of the greatest nights of my life.

Don't be afraid to ask for what you need. You know yourself better than any doctor does. You know how this pain is affecting your life and your mental health. Don't let him get away with telling you your pain and suffering are necessary. They are not. Some pain is (injury) but your current pain is not. There is nothing bad about narcotics except when they are abused. Used wisely they can make an amazing difference in your life. Mind you they are not for everyone but you should not be denied that option because your doctor is afraid. One thing I found helped when I went in to see my new doc is writing everything down. I wrote down what my current symptoms were. I then wrote what my concerns were in how they were affecting my life. I listed my immediate concerns and then ones that could be dealt with a little later. He seemed to really appreciate what I did. I tried not to make it too wordy and picked out just a few to concentrate on. Such as, handling my job during the Christmas rush and how 2 years running I had to wear wrist braces because of the pain in my hands, wrists and arms. I think that helped him figure out how the pain was affecting my everyday life. If you do something like that then maybe your doctor will better understand what this disease is doing to you.

Good Luck,
Christina

Jeff,

hiya, I've used tramadol (ultram), for awhile but only 2 months contuniously, begged for it in the end. MTX for about 2 months and preddy for 14 months.

I recently had a bad bash with the neck the worst ever, and these attacks seem to start to threaten 2-4 days after the MTX.

The MTX has been great for the peripherals, but I've been told it 's not as effective on the spine esp the neck in my case. I'm not sure that is everyones experience, I'm hoping that over thenext few months the neck will improve on the MTX.....

I'm now on the highest preddy I've ever been and that's helping heaps, I reckon it;s a kickback from the MTX.

They have recently added neutonin for the nerve pain which seems to be kicking in, and with tramadol they have now added a 50mg regular pills for break through on top of the 200mg every evening. I find that the tramadol peaks again the next afternoon, and it's better that way. Last night I was so comfortable the first time in many months. I'm adverse to narcotics as well, I'd lie to keep those in case I needed surgery etc.

When I was in hospital they cut the tramadol to 50mg 4 times a day, whereas I was taking 100mg Slow Release early evening for night pain. This was a disaster and I spent 2 nights sleeping in a chair in hospital even with endone added.

I'm getting quite callous about pain and Dr.s. It's a very important factor in quality of life and your capacity for doing things which increases your mobility.

Have you thought about a pain clinic referral? I also use a TENS machine which helps esp at night

David