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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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General Message Board for Ankylosing Spondylitis and Related Diseases
08/18/18 02:40 AM
This will be the first and last time I respond to one of your posts, worldofme.

You have a severe anxiety disorder and I really do understand how horrible that can be. I'm not trying to be cruel, I'm genuinely extremely sympathetic!

It's just that this really isn't the right forum to address anxiety issues.

I think at one point you mentioned using benzodiazepines, if I recall correctly. if you're still using benzos (e.g. Xanax, Klonopin, etc) you need to look into "tolerance withdrawal" ... basically your body eventually builds up tolerance to benzos and you end up with far worse anxiety than you started with! The solution is to VERY slowly wean yourself off benzos. There are forums dedicated to discussion of this matter.

Really, truly wish you the best and hope maybe I've pointed you in the right direction.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/18/18 01:19 AM
I'm sure you're not a bad person. But sadly, bad stuff can happen to good people. Life is unfair. Some lose limbs, some have their face burnt in a fire. Some have AS.

I'm not going to judge you because I have my moments of anxiety and "why me" too, but you've been on this forum for a few years now and you haven't moved on from the "why me" phase. You've been asking pretty much the same questions for the past 3 years. Again, not judging, I can see that you are not well, but you should definitely see a therapist to help you cope with your chronic pain.

It won't make the pain go away but it can help you change your mindset and develop mechanisms to deal with pain better.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/18/18 01:15 AM
Well in some people MTX helps the biologic work better and it should help any pain that's not in your spine. A lot of people take it so I don't think you should be overly worried. Keep in mind that prednisone can take a few days to kick in too. Overall I see this as a positive for you.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/18/18 01:13 AM
I doubt it is bp. When this happens I check my bp it's usually healthy.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/18/18 01:11 AM
I can't imagine my life the way it is at this moment. I randomly keep getting high fast rate than slow, sometime it may drop to 40. This is not normal for sure. However, cardio works up to says something else. My echo, stress, Holter complete normal. Ep doc is doing wait and see approach.

My life sucks, this happens randomly. I can be relaxing then all of a sudden I will feel hot flash, dizzy, nausea, warm feeling followed by fast rate than usual. Sometime it will be cold, sweat, dizzy feeling then the low pulse.

Why me? How can i have severe form of AS? Constant spine, knee, hip , heart what's next. I can't live like this.

I didn't do anything in life, I'm not a bad person.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 10:55 PM
Generally they don't prescribe anything, and I was really lucky as he specifically mentioned prednisone was a trainwreck, but gave me that option. Still that only solves a small problem of mine. We we will have to see how it works out in terms of the bigger picture. I have heard the MTX can be a pain in the butt though, and definitely not looking forward to these blood tests he wants me to do every two weeks.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 07:59 PM
Don't even think about taking prednisone long term ... it has serious side effects.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 05:39 PM
I don’t get headaches so not sure on that. I think your “blood rushing” feeling is high blood pressure caused by nsaids. I have experienced the same feeling a few times. When I started diclofenac it caused very high blood pressure. I switched to lower dose and it improved. Now I only take as needed. I don’t notice it while active. But when you are trying to fall asleep it is quite noticeable. Like a rushing feeling in the middle of your chest. Whenever I have that feeling I have recently take an nsaid. I have heard others say they feel it in their head/ears also. If you are on a biologic you can work on weaning yourself off the nsaid and only use as needed. There are diclofenac creams also. I don’t notice any blood pressure increase with those. At first I felt like they didn’t work but I have been applying 2x a day for two weeks now and they do work great for swelling over the si joint for me.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 05:10 PM
If you feel things are life threatening please go to the ER. I know the cost is awful even with insurance, but they can at least start treatment and help point you in the right direction and probably do an mri and blood tests on site. If you feel you have more time a rheumy appt is the next best. I agree that it is unlikely that you will get an rx without a new evaluation. And considering the new symptoms you will want a complete work up anyway. We suffer a lot with this disease but if alarm bells are ringing you know you need to get help ASAP. It’s possible that it is nothing serious and you just need meds for your AS or something else, but waiting is never a good idea. Please seek treatment as soon as you can.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 04:46 PM
Yes, normal to be sore after exercise if you haven't exercised in a while.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 01:58 PM
What are your plans for health insurance?

You won't necessarily need to get re-diagnosed, but I doubt a new doctor will just prescribe biologic therapy based on 11-year-old records without evaluating your situation, doing bloodwork, ordering imaging, etc. They would be committing malpractice if they did that. And I cannot imagine that any insurance company would pay for biologic therapy without that work being done. Having copies of your old records sent to your new doctor would certainly be a good idea. They may charge you for the copies if you request them for yourself. They usually don't charge for forwarding records to a new physician.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 01:49 PM
I walked 7km yesterday at brisk pace and today I'm kinda sore.

Is this normal? I normally don't exercise much so I guess it might be normal.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 01:47 PM
Really glad for you!

Funnily enough I had an appointment too yesterday and my GP didn't want to prescribe prednisone as she feels it's too strong for my current level of pain.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 01:13 PM
Welcome, and sorry for your suffering. The doctor started you on an NSAID, which needs to build up in your body. It should get better. Saying that, esp when you are not properly treated, it is common to have ups and downs. The weather is a common issue so is "over doing it". For me, the day after exercise is the day I suffer. I recommend you read up on the medications, so you are prepare for treatment. Though there is no cure YET, there are amazing treatments that will prevent additional damage and improve your life.

Anna
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 04:23 AM

WELCOME, crazychickenlady!

I believe that Your symptoms are highly suggestive of AS. As MartinMMM said, the serological test for B27 is flawed: Over 50% of AS+/B27- patients who went to The Middlesex AS Clinic in London retested as B27+ (I would only believe ELISA or Fc results). I had costochondritis and adhesive capsulitis and myriad other symptoms before I eliminated dietary starches.

Certainly, I hope that You can avoid the permanent skeletal destruction from this disease,

HEALTH,
John
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 01:35 AM
Good appointment today, got an MTX prescription and some prednisone for the meantime. Let's see if it works out.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 12:16 AM
I'm pretty desperate and won't realistically be able to get on a biologic for probably at least four months.
I'm thinking about ordering prednisone online and taking it for the next several months to help with my symptoms. I'm looking for some feedback on whether or not that would be effective from anyone who may have done it for some reason.
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General Message Board for Ankylosing Spondylitis and Related Diseases
08/17/18 12:13 AM
Will I need to get re-diagnosed?
The situation has gotten pretty bad and I've developed some pretty disturbing symptoms involving other organs.

I don't currently have insurance but I feel I really need to get back on biologics ASAP. I feel my life is in jeopardy at this point.

Could I maybe just try to get ahold of my old Rhuemy and get my medical records and then possibly have a Dr here resume my biologic treatment?
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