Sudden ankylosing spondylitis Flare up

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swon888
Regular Member


Date Joined Jun 2010
Total Posts : 91
   Posted 6/16/2010 10:54 PM (GMT -6)   
I am looking for suggestions and experience on people who has ankylosing spondylitis and pass experience of a flare up. as for me, I am 37 years old, I been diagnose with AS for over 15 years. For the last few month, my ankylosing spondylitis has sudden flare-up. I was on Remicade for a few years now. Prior to year 2010, I was doing well with the remicade, actually doing very will, the best medicine ever out there. For some medical insurance purpose, I left it off for 4 month before I got my insurance taken care of. I got back on Remicade, but for some reason, it did not work as well as before. I had 2 infusion of remicade, but it only lasted for only 3 weeks. I am on a 6 week schedule to have remicade. for 3 weeks, I am in excellent shape, but for the next 3 weeks, I am in my worst shape. I have so much pain, it took me about 1/2 an hour to get out of bed, can't sleep well doing to night because of the pain. can't stand up, with little movement, I had to bite my teeth to move. I'm sure people who have experience arthritis knows how painful it is. so I'm looking for some suggestion on what I can do to help relieve the pain a bit. Currently I am also taken some vicodin to help a bit, but it does not last for too long. the other problem I have is I also have Ulcer, if I put too much other medication in my stomach, it starts bleeding. Does anyone know why the sudden Flare-up and how you handle it when it comes. Your suggestion is greatly appreciated.

Ides
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Date Joined Nov 2003
Total Posts : 6818
   Posted 6/17/2010 3:16 PM (GMT -6)   
Clinical trials on Remicade have documented that some people have a lessened or no response to Remicade when there has been a lapse in receiving the medication. Also, for some people, Remicade loses effectiveness over time. That is what happened to me. I took Remicade for 2.5 years. At first I was on the normal dose of 5mg per kilogram of weight every 6 weeks. Then they increased the dose to 7 mg/kg every 6 weeks. Then they shortened the interval to every 4.5-5 weeks.

Are you having lots of pain in your SI joints? I have has injections in my SI joints and got good pain relief. During acute flare-ups I have also been placed on short-term "bursts" of prednisone to get them under control. Is that an option for you?

Lastly, when Remicade stopped working for me, I went on to Humira, another anti-TNF med. That's didn't work for me. Then I was placed on Simponi, another anti-TNF. I have been taking it for 13 months and it has worked better than Remicade. Simponi is a once a month injection. Much easier than going for infusions. Has you doctor discussed changing you from Remicade to another medication? You might get better relief.
Moderator Crohn's Disease, IBS, and Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


swon888
Regular Member


Date Joined Jun 2010
Total Posts : 91
   Posted 6/17/2010 6:39 PM (GMT -6)   
Thank you for your suggestion, I have yet discuses any medication change with my doctor yet. I move up my appointment to see him as soon as possible. Since this is the second infusion that did not work for me, I was not put on anything else yet.

As far as pain level goes, I am in extreme pain, I had to take some vicodin to help me move around a bit, but still limited. As far as getting an injection to the joints, I have not try that yet, I have an appointment with my doctor next week and we'll see how that goes.

swon888
Regular Member


Date Joined Jun 2010
Total Posts : 91
   Posted 6/17/2010 6:44 PM (GMT -6)   
By the way, sorry about all the confusion, I was unable to fine the forum for Ankylosing Spondylitis.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6818
   Posted 6/17/2010 7:03 PM (GMT -6)   
There is not a separate ankylosing spondylitis forum here at Healing Well. It is perfectly fine to post here in this forum about AS. AS and rheumatoid arthritis are treated with many of the same medications. I'm glad that you are going to the doctor sooner. It is no fun to be in so much pain. Have you ever tried heat? I find sometimes using a heating pad on a particularly stiff joint helps. I also take tramadol 4-5 times a day to keep the pain at a level I can handle. I have a narcotic for break through pain. I don't need much pain medication since I started the Simponi. It has really helped get the inflammation under control.
Moderator Crohn's Disease, IBS, and Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


Cherokee Squaw
New Member


Date Joined Dec 2009
Total Posts : 7
   Posted 6/17/2010 7:42 PM (GMT -6)   
Please tell me the symptoms of SI joint disorder. I am being jerked around by doctors and am in so much pain. cry

swon888
Regular Member


Date Joined Jun 2010
Total Posts : 91
   Posted 6/17/2010 8:24 PM (GMT -6)   
Sorry to hear about your doctors not being able to help you. maybe you need new doctors. as for Symptoms, I can just tell you, it's pain. it is very painful when you have a SI joint. when there is an inflammation between your joints, every little movement hurts, not just only the joints, but the surrounding mussels are also effected. because your mussels are doing all the moving rather than the bone. the surrounding mussels are also in pain. I'm not sure how bad is your condition, but as for mine, it's been over 20 years, every joint in my body hurts. have a talk with your doctors, good luck to you.

swon888
Regular Member


Date Joined Jun 2010
Total Posts : 91
   Posted 6/20/2010 7:11 AM (GMT -6)   
I had been taken Vicodin for my arthritis pain, but for some reason, today I took a quarter of a pill of vicodin, I started to get sweat and felt a bit nausea and vomiting. I do not understand why this happen, most of the it is fine, but today I felt the effects. I got a little worry. I do notice the pills are a little different than the one I use to take. does it make a difference if it's a different generic?

OfADifferentMind
New Member


Date Joined Oct 2011
Total Posts : 1
   Posted 2/13/2012 6:15 PM (GMT -6)   
I have ankylosing spondylitis (AS), lupus (SLE), & sjogren's syndrome. I have had good results with weekly injections of Humira (FDA approved for AS), combined with hydroxychloroquine (Plaquenil), Celebrex, and Lyrica. For pain, I have had good results using Mylan brand transdermal patches of Fentanyl (other brands did not work nearly as well) plus oxycodone tablets for breakthrough pain. While it bothered me a lot to start taking these narcotics, they have dramatically improved my functionality. I am able to handle so much more in terms of daily life activities. I recently (3 months ago) started working with an accupuncturist /traditional Chinese medicine practitioner who has helped me get through a major flare without needing to increase my pain medication dosages. If current trends continue I hopeful that I'll soon be able to reduce dosages on my pain meds. She's also working to develop the appropriate formulation of herbs to reduce my fatigue levels and improve my overall energy levels over the long term. Combining western & eastern treatments with good nutrition and daily (gentle) exercise (stretching, walking, and chair yoga), have tremendously quality of life.
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