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General Message Board for Ankylosing Spondylitis and Related Diseases
08/21/18 11:18 AM
So many good things that can be done but when you're on a downhill spiral many people just don't have the luxury of special diets and leisure activities.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/21/18 11:13 AM
You would think by now they would make a safer prednisone.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/21/18 11:10 AM
I can only hope this prednisone kicks in quickly. 1 problem down, 98 to go.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/21/18 09:22 AM
At this moment, swimming is the only activity I can perform. I did yoga but had to stop due to enthesitis in Achilles. I just came back from the seaside and its been wonderful. Normally limping with inflamed Achilles, I felt in the water in natural environment (perhaps coming from swimmers family shaped my preferences).
I try to limit however the eyes exposure to water (due to sever uveitis), I wear proper swimming google. Other important part if you just starting swimming therapy would be to get some classes because the proper alignment is very important in swimming. Like in any other sport if you aim long term you need to do it right.
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Alternative Treatment / Diet Discussion
08/21/18 05:54 AM
hello,
What is the efficacy of food allergen testing?
I am following NSD for AS, but I also have Eosinophilic gastritis for which I have to eliminate all diaries/eggs/soya/nuts. This left me quite limited choice. Immunolog wants to test me for Food Allergens but there are many tests and I hear not necessarily reliable.
Any advice? I am a little bit stuck here with finding food I am allergic to.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/21/18 04:28 AM
Good luck with recovery and PT!!
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/21/18 04:22 AM
I have never heard of an adult being on such a low dose. In fact, my pediatric rheumatologist used to say she even had 4 year olds on 50 mg of Enbrel weekly. The 25 mg dose is used for little kids and it's also given weekly.
And they routinely go higher than 50 mg/week for psoriasis - often it's started at 50 mg twice a week and then tapered to once a week.

Researchers actually believe that antibodies against biologics result from too low levels of the biologic in the blood. Gastroenterologists whom routinely used Humira and Remicade (and other biologics besides Enbrel) actually monitor drug levels to make sure they do not go too low. In Inflammatory Bowel Disease, there is a clear correlation between low drug levels and antibodies (I think the correlation is less clear in rheumatic diseases but it's also less researched).

What I'm trying to say is that by taking Enbrel so infrequently, it may not just not work, but you may be setting yourself up to lose a medication because of antibodies. You'll have a very low level of Enbrel in your blood, and supposedly, that's when your body makes antibodies to the medication.

It is true that you are less likely to make antibodies to Enbrel vs. something like Remicade. But it's still possible. I would try to take the normal FDA approved dose of Enbrel, if you take it at all.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/21/18 02:50 AM
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/20/18 11:44 PM
sorry to hear feeling desperate about symptoms and delay with treatment that you think will be most effective.

What does your doc say about prednisone for that long? as far as I know, it's not an over the counter medicine. I recall that it needs to be at the right dose and tapered down carefully. I agree with DadCue, it's a tough medicine for me to be on for any length of time. When I did go on it -for UC flares- I couldn't wait to get off of it. Also, when talking with hip surgeon, my options were limited because I had used prednisone -at any amount and at anytime in my past.

I can relate to feeling desperate without medicinal options. For me that forced my journey to other ways to control pain and increase function. I chose yoga, cycling, weights, diet, etc.

Hope that helps.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/20/18 07:40 PM
Matching the sample's resting heart rates with the rate of mortality led the researchers to believe that higher pulses correlated with a greater chance of dying.
Those with between 71 to 80 beats per minute had a 51 percent greater chance of kicking the bucket during that period than those with a resting rate of under 50 beats. At 81 to 90 beats per minute, that risk was double. Over 90, and it tripled.


Having myself resting heart beat rate below 60 and in low 50 ties since approx couple of years ago (when I had Atrial Fib episode at age of 35), i try to convince myself I am so fit/healthy (apart from AS obviously). We dont have a choice mate. Just have to keep going and try to produce enough endorphins to keep that pain under control I guess.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/20/18 07:17 PM
hello again,
I am being put on Methylprednisolone again + Tobradex/Tropicamida for another episode of Iritis.
Meantime I dropped Arcoxia and started the following Combo to address also my Eosinophilic gastritis: Budenofalk/Montelukast.

+once in few days I take Vimovo (Celebrex)for cervical pain.

I am also suppose to start Sulfalazine, but had to postpone due to some plans. My main Rheumy said if Sulfalazine wont work we think about biologic.
Meantime, I met another Rheumy who told me Sulfalazine will not work for Achilles enthesis (which i developed in addition quite recently), as current view states enthesis is not a peripheral SpA, but an axial. ?

Question: Sulfalazine can work for Uveitis/Achilles enthesis? Or shall I go another route and try to get Humira for the Uveitis?
Question 2: which biologic would work on all of the stuff I currently posses: Uveitis/cervical pain/Achilles enthesis/Eosinophilic gastritis
Question 3: Am I to naive thinking I can stop AS, by targeting Eosinophilic gastritis alone?

PS. i am also taking some supplements like: msm/shark cartilage/turmeric/vit D/probiotics
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/20/18 05:02 PM
Keep us updated! smile
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/20/18 03:10 PM
Best wishes for a smooth recovery, SouthernMoss.
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Complications and Long Term Medical Issues
08/20/18 03:10 PM
I am going to try shock wave therapy (ESWT) for my left Achilles Bursitis tomorrow...
by the way apart from swelling, and discomfort while walking can this lead to Achilles rupture?
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/20/18 11:05 AM
Best of luck. Hope your healing continues to go well.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/20/18 02:37 AM
I had unicompartmental knee arthroplasty Friday, also known as a partial knee replacement. I'm looking forward to a significant decrease in knee pain once everything heals. I've had 2 sessions of at-home PT and will have 3 more sessions before transitioning to outpatient PT.

I had the other knee done 4 years ago with no major issues, so I'm hoping this one will go well too.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/19/18 09:54 PM
I have the low high heart rate too. It doesn’t really bother me much except that sometimes when it drops I feel like I am going to faint and I have actually fainted a few times before. My cardiologist is looking into it and I am wearing a holter monitor as I write this.

I have had arthritis since I was a teen in 1982. I was in a wheelchair for a short period of time then. I’ve never really asked why me. Everyone has problems and AS is one of mine.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/19/18 06:33 PM
Worldofme,

I didn’t mean to tell you to stop posting. You are welcome here and we all understand your pain.

It’s just that it’s hard to help you. We don’t know why you, or why anybody for that matter. These are questions you should discuss with a therapist.

We will be happy to answer specific questions based on our own experiences. It’s just that you rarely engage. You ask a question then you get some answers and we never hear back from you until you start a new thread.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/19/18 12:58 PM
Its not unusual to post frequently when you are in need of friends and support. I think I remember that you are located in another country is that accurate? I also see that your medical questions are related to AS potentially so you naturally post here? May I ask what you do for work if you are working, do you have activities which you do daily? Perhaps this will give people here insight into how to help.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/19/18 01:59 AM
Thanks, it didn't seem to me like 25mg/month would do much. I don't know if he would be willing to prescribe a more frequent dose or not, like I said be actually said he doesn't think I need a biologic at all but he's leaving it up to me. I will check to see if enbrel has any programs here, I know that when I checked into humira there weren't any patient assistant programs I could find. It is also too expensive to self-pay for. I guess another option is investigating the costs of the other biologics. I was surprised that self-pay enbrel was less than half the cost of humira.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/18/18 05:12 PM
Hi Eleven11,

I don't want to bother everyone with all the details of my situation again but I wasn't particularly sedentary when my flare started. I had been however pretty anxious for a few months before and I had made major changes to my diet and lost 20 pounds in 4 weeks or so. I don't know if that could be brutal enough to trigger a flare.

In short:

Mid-May to Mid-June: flaring, about 7/10 pain level
Mid-June to Mid-July: flare calmed down to a manageable 3/10 pain
Rest of July to second week of August: flare went back up again to about 6.5/10 pain
Mid-August to now: flare went back down to about 4/10, manageable

I had blood work done at the end of June and everything was perfect (I'm usually high CRP when flaring). My range of motion tests all came back great so that's it for me. Waiting for an MRI appointment that takes forever. For the time being I'm just enduring my flare.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/18/18 04:24 PM
I'm not sure 25mg/month would do much of anything. 50mg/week is the normal dose for an adult. Could you afford 50mg once every two weeks? If you think you could afford that, do a trial for a few months and see if it helps. Note that, at least in the US, Enbrel's manufacturer will supply patients with two free doses per year. You could investigate if that option is available to you in Taiwan as well, which would help offset the cost of the trial.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/18/18 02:23 PM
Sure I understand not to come on this forum to express my feeling. I do not have anxiety; I feel frustrated that none of the treatments are working.

Isn't this forum about support? Trust me; I have moved on, accepted that I have AS. I work on treatment with my doc, but either I end up with side effects or they end up not working.

I guess I'm getting no support here, I will stop posting. All I want is someone in a similiar situation to listen. After all, no one close to me understands how bad this disease is impacting me. AS is joke to outsiders.

P.s. i haven't taken benzo in over a year now.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/18/18 01:53 PM
Hey all,

I just had a visit to the rheumatologist on Thursday and asked him about self-pay for biologics. (I live in Taiwan and the insurance won't pay for biologics unless my CRP etc is above a certain threshold and mine continuously comes back normal). The rheumatologist said that I could do Enbrel just once a month since my AS hasn't progressed very far yet (it's a little annoying being told I have a mild case when I'm often in so much pain). I could afford to self pay at once a month but is that enough to do anything? The dosage guides I've read say weekly. The rheumatologist told me he wouldn't actually suggest it but that its may call to start it or not. I just told him "I have read about blood work not necessarily reflecting actual pain levels, and at least in the west I've read its becoming recommended to start biologics as soon as possible". I told him I would think about it. I'm just wondering if once/month would even make a difference. While its much more affordable to self pay here it still isn't cheap and I don't want to spend a ton of money if its not going to do anything.

He also started me on methotrexate 5mg/week so I'm going to see how that goes first. I know that's also a bit lower than a typical dose but holy heck terrible side effects. I took it Thursday night and woke up vomiting Friday morning and spent the whole day feeling like crap.

Summary if you don't feel like reading: Is Enbrel 25mg once/month enough to have any kind of effect/ worth trying?
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/18/18 03:15 AM
Seymour,

My last major flare (it was awful, lasted months and left me with permanent damage) coincided with some bad life circumstances during which I was VERY sedentary. I suspect (can't prove obviously) that being sedentary was a major factor causing or contributing to the flare. Stress probably didn't help either, but that's beside the point I want to make.

Ever since then I try to walk for at least 20 minutes at a brisk pace every day. For some period of time I tried walking 2-3 miles per day, but it didn't seem to make any difference. I suspect, at least for me, that just keeping some level of activity every day helps keep me out of pain.

Just thought I would mention that in case you have been sedentary (because you mentioned depression and that can often keep us inside and sedentary).
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