Need advice. I have been experiencing the worst flare I have ever had and my GP (she's a lot closer than my rheumy) had my SED rate checked and it was the same as when I began any form of treatment a year ago. Between the horrible flare and the SED rate, I called for an appt with my rheumy and his nurse said that she talked to him and he would like me to dc methotrexate and remicade and see him in March.WHAT UNTIL THEN? She said, well that is what he said. What do you guys think of that?
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With regards to the sed rate, that is known to be a very poor indicator for AS. My doctor runs it because the insurance company wants to see that he ran the test, but he totally disregards the result. As far as the tnf drug makers advertising that it slows or stops damage we have to remember that the same drug is used for other forms of arthritis and that it may have that effect on those forms but not AS. It feels like false advertising but isn't necessarily due to the fact that they only say that it MAY have that beneficial effect and supposedly does for RA.
The CRP is a better indicator correct? I have no idea how to stop the pain or make it liveable but I must find something soon. I think I have tried every anti-inflammatory and steroidal meds available and even when I can get the inflammation down, the joint pain is still horrendous. I had an intrathecal pain pump implanted the week of Christmas and my hip and back pain are much better but since I no longer take oral pain meds, the pain in the rest of my joints is screaming at me 24/7. My hips and back are glad I made the switch but that is the only pain getting relieved now and I am scared I have made a horrible mistake. Any thoughts? by Nikki Sedgwick ... 4 weeks ago
As fast as I know there are no indicators that work for AS.
Oops, clicked the send too soon. Probably the worst doctor I ever had was the one that should have been the best. His father had AS and he had written papers about AS but he worked at keeping an emotional distance so much that you would feel that he didn't care. The doctor I see now is great, maybe because I started seeing him when he was just out of redidency. I was his first AS patient in private practice. Quick to respond and I think that he prioritizes me since I've been a patient so long. Inquire into the possibility of a more general analgesic. I'm on a fentanyl patch and have percocet for breakthrough pain.
Oh wow glad you found a good doctor. My GP is that Dr for me...but this isn't her area. I trust her bc she is the one that actually found out what was wrong with me to begin with but I must have a rheumy.
I am working on finding a new Rheumatologist. Made a call today for an appointment with a Dr. At a University Hospital that has actually done AS research. Hoping to get a call back for an appointment soon. Scared to start all over with a new dr but not wasting anymore time.
Pain doc wont give oral meds to me since I have the PTM device to help with breakthrough pain through my pump. Problem with that is that the medication is not reached systemically. Only pain relief from the morphine pump is in my lower back and hips since that catheter goes directly into the spinal fluid. Granted, I am happy for that relief and can actually walk upright now, most of the time but what about the rest of me.....flare: I hurt everywhere, no flare: I still have moderate joint pain.
Sorry to whine.....just frustrated. I would fly ANYWHERE if I knew I could actually get some sort of straight answers and help.
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I know you're frustrated, and I've been where you're at. You just want to believe that there's something that will help, but there really isn't a cure for AS. Until we find something better, I'd recommend that you layer your approach to fighting the disease. You really can get a little relief from physical therapy, dietary management, deep tissue massage, and Chinese medicines (not that you're not already doing these things). I've found that I make my life tolerable by layering the approach I use.
About the TNFIs.....There really is very limited evidence that any of the medications can slow the fusing of the joints. I think that we hope that there is something that they can do for us, but really they can just help to manage our inflammation. I really wish the FDA would better regulate the advertising for these medications because there is actually some research that would suggest that the inflammation is actually something which prevents joint calcifications. For example, TNFa stimulates the production of A20 which prevents cellular death in the immune response. Having said that, I take the TNFIs because there just isn't something better to get through each day. I hope that you are able to get some relief soon, but I just don't think it's going to come exclusively from an MD.
About the TNFIs.....There really is very limited evidence that any of the medications can slow the fusing of the joints. I think that we hope that there is something that they can do for us, but really they can just help to manage our inflammation. I really wish the FDA would better regulate the advertising for these medications because there is actually some research that would suggest that the inflammation is actually something which prevents joint calcifications. For example, TNFa stimulates the production of A20 which prevents cellular death in the immune response. Having said that, I take the TNFIs because there just isn't something better to get through each day. I hope that you are able to get some relief soon, but I just don't think it's going to come exclusively from an MD.
WOW you know so much more than I do about how the meds actually work. I honestly have been switched from med to med so much in the past year that I have a hard time remembering what was for what if I am not currently taking it. Massage sounds wonderful but my insurance company won't write them a check LOL Do you know anything about accupuncture? I am willing to try anything to get relief. I have called for an appt with another rheumatologist in a bigger city, maybe that will be some help. Any thoughts or advice you could offer in general would be MUCH appreciated! Thanks!!
I am compelled, for some reason, to read day and night about how this disease works. I have learned a lot about the human immune system, and I find it helpful in understanding all of the different disease manifestations that happen to us. I go for acupuncture every other week and massage on the weeks when I don't get acupuncture. I prefer the deep tissue massage, but if your insurance doesn't cover it, that's not helpful. My insurance covers a lot, but the premiums are as much as my house payment. O_0
Oh my premiums are too. Since I couldn't work full time anymore, I lost my coverage and am now paying for COBRA coverage....YIKES, that's a HUGE bill every month!
I am compelled to learn as much as possible too but I just can't seem to find enough to explain it all. Some research down plays the long term affects of this disease while others make it seem like a death sentence. Ahhhhh, the internet! LOL
I think you should first start by learning how the immune system works. I would think you could find a reputable website or book that talks about human immunity. There is a digestive component to our immune systems, and then there are cell to cell communications (cytokines, chemokines...). After you have a grasp of these things, you might begin looking at the genetic protein arrangements that are being researched. I woulnd't trust any information (in terms of study) that doesn't come out of a univeristy or isn't printed in a medical journal. I think a person can have a pretty good life with AS, but not all of us do. There are extreme differences in how severely the disease is expressed in some of us. In my case, I have had debilitating inflammation, but it's caused minimal structural damage. Now that the inflammation is under control, I can still work a very demanding job. Other people are not able to get the inflammation down or have a rapid calcification take place. It's my best understanding that the specific gene arrangements and different environmental components (diet, not the least of which) cause these different levels of severity.
Great, thanks. I will start researching. One of the reasons I am making an appt with a Rheumatologist that is with this University is that everyone in that department has research and study experience specifically with AS. I am very hopeful but not counting to many chickens, so to speak.
I have inflammation that is worse each time, this time was the first time I experienced ankle swelling and blurry vision. Blood pressure was high throughout the flare but that may just have been the stress of it.
I also have rapid calcification. Thoracic spine fusion and now the beginning of lumbar spine fusion. SI joints were hurting unbearably before the morphine pump implant. Same University Hospital has accepted me to be a part of the clinical study they are doing to research genetic markers. Probably wont help me much but if my nieces or nephews ever got sick they might be helped by it.
It helps us tremendously, and I appreciate that you're doing it. Please let us know about what you learn!
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Is that the only rhumy available to you in your area and on your insurance? You sound like you need to see a different rhumy for a second opinion, and your present rhumy sounds awful.
Oh, and another thought, it's bad for business if you show up in your rhumy's office in distress and they just leave you sitting there in the waiting room. So you could try showing up in the office without an appointment, asking to be fit in on an urgent same-day basis, and just not leaving until they see you. The rhumy was late for me the other day (and his whole schedule backed up) because a patient just showed up, and the doctor fit the guy in urgently for steroid shots. So in a severe flareup, showing up in the office saying you need to be fit in urgently can sometimes get you seen if you are sick enough.
Thanks...I have been so upset over this that my BP is way high the last few days. I am going to find a rheumy that will treat the patient not the # if you know what I mean. What a disappointment to know I have wasted this whole year on treatments that haven't slowed the progression of this disease at all. My upper spine is fused and my lower spine is fusing now.....just dont understand Dr's that aren't concerned at all with the pain and suffering of their patients. I thought that is why they do what they do.
Thanks again for the advice.
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I would try another Rheumy and if that is not possible I would call back and demand a personal talk with the doctor.
When I asked the nurse yesterday what I was supposed to do in the meantime...she said "that's all he said" SHEESH well don't TRY to get an answer or help the patient for goodness sakes. I have never bothered them until now. I made a call to a rheumatologist in a bigger city today. Hope to get an appt soon. Thanks for the advice!!
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