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General Message Board for Ankylosing Spondylitis and Related Diseases
01/21/19 04:11 AM
Best to ask a pharmacist if the tablet can be cut in half without creating an imbalance of the active ingedients and filler used to create the tablet. I take mobic with no side effect so it may be thst you're having a reaction to someting in the tablet. Given the cardiovascular related side effects, have you mentioned your headache to your doctor?
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/21/19 01:12 AM
Welcome jagsfan05! It might be the inactivity that followed your injury brought on the pain and this condition to view. I too had a very active lifestyle early on upon learning of my AS - and have seen my symptoms flare when sedentary from injury, illness or work. Amazing is that when active, i felt few symptoms. Its not uncommon for the inflammatory labs to be normal with AS. I'll let others respnd to your other questions but encourage you to stay active and maintain strength and endurance - but be kind to your body. Have fun in your movement and it'll give you frredom to move.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/20/19 05:59 PM
Originally Posted by Lacan
I quit alcohol about 9 months ago


I quit alcohol about 900 months ago. Good first step. I do indulge whenever in Europe which isn't very often.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/20/19 08:56 AM
I wanted to say thank you for this thread. I read it and it has been an encouragement over the past few weeks. I did not comment because I had not yet experienced turning that corner, but seeing that others have helped me. I was feeling frustrated, overwhelmed, depressed, fear, grief, anger. In the past few months I have been helped by medication with pain, stiffness, and fatigue, which has helped my attitude immensely. I gave up some bad habits. I started strength training, swimming, PT, yoga. I'm on a "diet" per Dr's advice..... I'm feeling more positive and energetic and I am mostly grateful for this change. The other day I had some pain flare up and I got really angry about the fact that I have to exercise every day now which is not my preference!!!! I was like this is bullshit why can't I have a day off????!!!
But overall it is good and I am thankful for your taking the time to share your stories, for how much grace and understanding is shown in this community. Compassion and seeing your strength does help me.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/20/19 01:43 AM
It was a slow improvement for me when I went onto Humira. I also gained about 25lbs as well. I'll say all in all it was about 50% effective for treatment. I am on enbrel now and it works about the same as Humira for me. Methotrexate may or may not work anymore, I just can't tell the difference. Sulfasalzine works great for the aches and joints in my hands. I am still miserable though, even after all the medication. I also take lyrica for fibromyalgia, cyclobenzaprine to sleep at night, clonezepam for panic attacks/anxiety. I also take two medications for my bladder flares...It is really about what works for you. I would say, write down all of your symptoms and the pain level from each. Take the medicine and then after it's at its therapeutic dose you can determine how it helps. It might take away 10%, but that might be the difference between getting out of bed and not. Good luck to you.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/20/19 01:36 AM
I was diagnosed three years ago after suffering from pain for 7 years. My pain is still not under control. I do everything they recommend and still I am not down to a level that is acceptable. I have started to go on a journey with AS, it is after all, our constant companion. I have narrowed it down to three things in the cycle, 1. Pain, 2. Fatigue, 3. Anxiety Think of it as a circle where one impacts the other. When pain strikes I start to get anxious, I have to take my emergency medication to calm my heart rate down. I have to reason through what I am feeling. I have put protective measures in place. When I am in pain I listen to my body and it tells me what it needs, so down the list I go. Ice, heat, chiropractic, long bath, exercise, physical therapy, meditation, maybe a massage, call a friend, journal about it, do something I love to do..these are all tools. Above all, being mindful is the most important. Love yourself and rest if your body is telling you to rest. Eat better if your body is telling you it needs better nutrition.

Remember you did not get this way overnight, there is no magic pill that will make you better, some days will be worse than other days, but tomorrow will always come.

I do believe that most of us here suffer from some type of anger towards this disease, even resentful of those that have better functioning. Don't lose hope, the most powerful tool that you have is your mind. I wish you all the best and thank you for sharing.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/19/19 10:27 PM
While I haven't experienced medication reactions to the level you have, I do feel for you as I have always been prone to side-effects, and it has made it very hard over the years to find drugs I could tolerate and that worked. After what you went through with Stelara and Remicade, I can see why you'd be reticent to try another med like those. There is just no way to know with this stuff. Everyone is on an individual journey. For me, I've been on Enbrel for 18 years. Briefly we tried Humira back in 2005 or so just to see if I could get some additional benefit but I got huge red rashes from it at the injection site. So went back to Enbrel and have stayed on it since. It still works, but I also need other drugs in addition. I couldn't tolerate plaquenil or sulfasalazine, but they did help my symptoms. I'm on a low dose of MTX because if I go higher I get intolerable side-effects, and as it is, I get horrid side-effects from it (mood and anxiety), but the pain relief I get from it is so strong, I can't get off it. I also take Imuran which probably helps my whole system, but strangely, the place I feel direct pain relief from it is in my hands.

best wishes to you~~
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/19/19 09:55 PM
Could not tolerate it due to side-effects - most likely GI.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/19/19 09:54 PM
I will just share that despite all the meds such as Enbrel, mtx, indomethacin, and others.. I have always needed pain medication as well. Enbrel and mtx suppress a lot of pain, but it has never been enough for me.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/19/19 06:57 PM
Here in the Netherlands I don't think doctors are very pushy about biologics. My rheumatologist hasn't even brought them up yet. We have mandatory health insurance, with basic coverage that is the same for everyone. Humira is covered by it, but it's by far the most costly drug for the insurance companies (although this was before the 80% price drop). I assume the insurance companies keep the pressure on doctors to exhaust other treatments first. Generic NSAIDs and physical therapy are much cheaper than biologics.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/19/19 06:35 PM
I've been diagnosed with AS since 1993 and have a good quality of life without biologics. I can lift weights for an hour and half with no breaks, plus do yoga and swim. People are different. Sadly, some doctors don't understand this.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/18/19 08:47 PM
Different people find that different NSAIDs work for them. The problem with ibuprofen is that it tends to be one of the harshest NSAIDs on the gut and the heart. If you're going to take it continuously, which I think most rheumatologists (and GPs) would recommend you do if you have active AS, you should probably also be taking something everyday to protect the gut, such as famotidine (Pepcid) or a PPI (e.g., Prilosec). The ibuprofen should also be taken with a big meal if possible. Personally, if I were going to be taking an NSAID continuously long-term, I would choose Celebrex as it has the best safety profile. Of course, you should discuss all this with your doctor(s) and not just take my word for it because your individual risk factors should dictate the therapies you are on.
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Athletes Against AS - Tips For Staying Active With AS
01/18/19 05:02 PM
I love yoga, I believe it has helped me a lot with mobility issues etc. There's one thing I have noticed however. Doing prolonged hamstring stretches often leads to pain for me. Sometimes I feel sharp pain going through my hips whenever I come out of that pose. And I noticed it will also cause pain in my SI joint that can last all day. So the pose itself is not painful, but I will feel pain afterwards.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/18/19 01:44 AM
Yes, nice video thank you for sharing!
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Complications and Long Term Medical Issues
01/17/19 01:18 AM
I've had kidney issues (infections, stones when I was a kid and one kidney infection as an adult) and lately microscopic blood in my urine also. I also had chronic UTI's as a kid. I don't know if anything was related though. I didn't think to ask urologist. They were going to do a cystoscopy a few months ago but decided against it. Not sure if this helps.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/17/19 12:59 AM
Originally Posted by Photosinpink
I have had pain in my collarbone on and off since my diagnosed with AS a year ago. I am in PT now, and have found that several stretches can help.

First, lie on a foam roller so that your head and spine are supported by the foam roller (you will need a long foam roller). Extend your arms out to the sides with your hands up (like you are saying "touchdown"). This stretches the pectoral muscles, which are under the collarbone. You can google to see more pictures.

You might also try a heating pad and massage to the area under the collarbone. I have also tried CBD oil with some success. I am also a big proponent of the Quell device--I wear it every night.

Good luck.

I’ve enjoyed online videos by “Bob and Brad, the most famous physical therapists on the internet.” <<— That is their slogan and a search of the slogan should bring them right up. They have one geared for AS patients. I was going to a comfort care clinic and found that Bob and Brad show you how to do the same things I was paying for the physical therapist to teach me.
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General Message Board for Ankylosing Spondylitis and Related Diseases
01/17/19 12:44 AM
I"ve had about 14 bouts of iritis, but luckily no damage. No attack since 2002 and no biologics.
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