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Joined: Feb 2006
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Steel_AS_Kicker
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I know that fatigue, I imagine we all do here. In spite of the fatigue, I often find myself trying my best to stay awake at night. I'd rather stay awake than go through the mornings. I'm on Humira right now so that helps, although I had to stop taking it while sick.
I've been on biologics about 10 years now. Given the choice I'd do the same thing again. I was on Remicade for over 8 years until it didn't seem to work any more. Then I switched to my current Humira.
I'm not trying to push or assume, but just to make sure you and anyone else is aware, you can get on what they call a co-pay assistance for Humira. They put me on one and my copay is $5 for each month of Humira. I have health insurance, and we're comfortable as far as income. So I'm not sure how they determine whether you get it, I don't think it's because of income. Another thing, it's also very easy to get. They are extremely nice people.


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I like your suggestion about getting Humira for less of a cost. I have Medi-Medi, live in the US, and have asked my reg DR. for at least 2 years to send me to a Rheumy to try this out. I am over 65 so now I can go see a rheumy without my Dr. Permission first. I went into remission (I thought) with antibiotics for about 13 years but I still had pain, I still have pain and I'm sitting here on a lot of morphine and it's been 10 weeks since my last surgery on my shoulder. You piano and lil boy are darling. Kelly Pritchard


"those who were seen dancing were thought to be insane by those who could not hear the music"
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RBarnes Offline OP
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All of you have been so encouraging and helpful. I've very happy to have joined this site.

I have an appointment with my rheumy at the end of May. My wife and I will sit down again before that time and discuss the pros and cons of the anti-TNF treatments and what's going to be best for me and my family moving forward. I'll keep you all posted as to my decision.

dmx, not too much trouble with iritis or anything like that yet. Keeping my fingers crossed that I can avoid that.


Dx 2013 RF- HLA-B27+
Meloxicam 15mg Norco 7.5/325 Celexa 20mg
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The fatigue always gets pretty bad for me the 2nd week of my 2week shot/medication. I am due a shot on Saturday. I got up this morning at 6am, and it's only just now 11am or so that it's let up/ eased up for the day. Until just now my fatigue this morning was so bad I could barely function. I think the fatigue is worse than the pain, it often makes me depressed. It often drives me to bed around 8pm. I think some of it is from lack of sleep due to waking up in pain, or not sleeping due to pain.

In the mornings what gets me through it all is to listen to music and trying to move, walk, stand up. Although it's easy for me to get stuck and just sit or lay down which only makes it worse until about 11-noon. Getting into any altered state of mind helps. ie. music, reading, meditation, exercise, food or caffeine buzz, etc.,

I don't know. It's a mixed bag. I am glad I am not the only one though, cause 99% of the people around me don't know or get it. They just feel sorry for me if I try to tell them how I really feel. I usually just try to fake it until I make it. You know, grinning while sobbing on the inside.


Diagnosed with A.S., DDD, scoliosis, sleep apnea -- Tested positive for HLA-B27 gene; family history; visible damage on x-ray; significant iritis; enthesitis inflammation; fatigue; feverish; peripheral arthritis; Osteopenia; heart, G.I., and skin symptoms - :: - Insidious and often disabling pain started in my teens & 20's with heel pain; chest pain and hip-buttock in my early 20's; low back pain in my late 20's; mid thoracic and cervical in my 30's. Biologics in my 40's. (On remicade)
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RBarnes Offline OP
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Jason, I agree that it's nice to be able to talk to people who understand what you mean by "fatigue". Healthy people interpret that as just being tired, but it goes so much deeper than that and it's difficult - maybe impossible - to explain it to someone who hasn't experienced it. It can be all-consuming.

I also try to keep myself going with music, walking, caffeine, etc. Sometimes it works, other times there's just no controlling it. I've nodded off at my desk so many times in the past six months, it's a miracle I haven't been fired. ;-)

I see you also have sleep apnea. Do you use a bi-pap?


Dx 2013 RF- HLA-B27+
Meloxicam 15mg Norco 7.5/325 Celexa 20mg
Joined: Nov 2011
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Journeyman_AS_Kicker
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Nonnie,

Thanks for the information about Humira. I have often wondered how to pay for it once I decide to get on it. It is really expensive and my insurance will pay everything but $400 monthly. That is still a big chunk of change for me. Right now I am controlling it with NSD with only minor flares but I have fusion in the SI joints and mid back which keeps me from reaching the floor.


Teri
http://agluten-freemama.blogspot.com/

Pain since 1989
Mis-diagnosed until 2011
SI joints somewhat fused, lower back is trying to fuse
Osteoarthritis in hips
Follows NSD
Takes Ibuprofen only when needed
Loves to swim.
Still working 5 days a week as a secretary then 5 nights a week waitressing.
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Originally Posted By RBarnes


I see you also have sleep apnea. Do you use a bi-pap?


Yeah; Cpap. I've had one oh, for about 10 yrs or so. I go through phases using it off an on, depending on allergies etc., Its a love hate relationship.

I am doing better with fatigue today as when I get real bad I start fasting. I find it helps overall symptoms and energy levels. Although I am still dealing with osteo arthritis and bone spurring and fibrosis. I have a that in my hips and neck. I am an unapologetic lazy dude when it comes to diet.

I've got some tramadol and Vicodin, so it's not too bad.

Oh well, I always tell myself, I still have all my limbs, eyesight and am not in a chair, so I can keep going just fine. I've had continuous pain since I was 17/18 so it takes a lot to phase me. It helps I am an introvert to begin with so the fatigue has never made me feel too isolated. The only thing that bugs me about it of late is watching the effect it can have on family. I am fine with myself, but when you don't cant participate in stuff it can be hard.

Right now I am "experimenting with turmeric" as a anti-inflammatory. So far I've not seen any result.


Diagnosed with A.S., DDD, scoliosis, sleep apnea -- Tested positive for HLA-B27 gene; family history; visible damage on x-ray; significant iritis; enthesitis inflammation; fatigue; feverish; peripheral arthritis; Osteopenia; heart, G.I., and skin symptoms - :: - Insidious and often disabling pain started in my teens & 20's with heel pain; chest pain and hip-buttock in my early 20's; low back pain in my late 20's; mid thoracic and cervical in my 30's. Biologics in my 40's. (On remicade)
Joined: Dec 2014
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Second_Degree_AS_Kicker
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Turmeric won't help because it's poorly absorbed even when mixed with butter, some take it with black pepper.

Do you get full relief from NSAID?

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Originally Posted By dmx07
Turmeric won't help because it's poorly absorbed even when mixed with butter, some take it with black pepper.
Do you get full relief from NSAID?


Thanks for the comment on Tumeric. Good to know. NSAIDS? I took high doeses of them for 20+ years. And do help, but not as I'd like. The past year I had to mostly give them up due to GI trac errosions and gastritis. So, right now I take them very sparingly as well I sparingly take tramadol and vicadin for pain. Mostly I simply have a very high pain tollerence and willpower.


Diagnosed with A.S., DDD, scoliosis, sleep apnea -- Tested positive for HLA-B27 gene; family history; visible damage on x-ray; significant iritis; enthesitis inflammation; fatigue; feverish; peripheral arthritis; Osteopenia; heart, G.I., and skin symptoms - :: - Insidious and often disabling pain started in my teens & 20's with heel pain; chest pain and hip-buttock in my early 20's; low back pain in my late 20's; mid thoracic and cervical in my 30's. Biologics in my 40's. (On remicade)
Joined: Dec 2014
Posts: 202
Second_Degree_AS_Kicker
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Have you tried COX-2 inhibitors like Celebrex? They don't cause as much stomach irritation.

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