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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 11:10 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 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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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?
2 185 Read More
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 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
08/17/18 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 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
08/15/18 06:15 PM
I think I was tag teamed by some other illnesses it was no fun.
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