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It's getting real :/ #280203
04/16/18 09:12 PM
04/16/18 09:12 PM
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kglenn Offline OP
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kglenn  Offline OP
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So I was diagnosed with spondylitis last September (though I have had very mild symptoms for up to 10 years--mostly just one achilles). For the past 9 months or so, hip and back pain has been mainly very mild--some stiffness and pain when I first get moving after being stationary for awhile. Tenderness has been increasing over the past few weeks. Then this past weekend things changed and I am guessing that I am now in my first 'flare'. My hips, buttocks and portions of my back have started aching pretty significantly.

I having been just dealing with it when milder and taking acetaminophen when it gets to be too much. Last night when I tried to lie down for bed, the pain was too severe. I had to sit up (still bad, but better than lying down) and watch TV to try to get my mind off of the pain until the medication kicked in. I had to take another dose at 4:00 am. This morning I managed yoga class pretty well, but the pain has been increasing as the day goes on and I just took another dose of tylenol.

I started Enbrel on April 1st and yesterday was my third injection. I had been feeling like a TNF inhibitor was overkill, but now I may be glad to have already begun one. I am hoping it will kick in and start working soon, as I can't safely take acetaminophen indefinitely and NSAIDS are not an option for me.

Any input on things to help with the pain are appreciated. I will probably try a bath tonight if things get bad again. If a TNF inhibitor has helped you, how long did it take before you saw improvement? I know if may take a few months, just wondering about your experience(s). So far, things have only gotten worse here smirk

Thank you!


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: It's getting real :/ [Re: kglenn] #280204
04/17/18 12:49 AM
04/17/18 12:49 AM
Joined: May 2013
Posts: 22
Cochabamba, Bolivia
Kelseria Offline
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Hi kglenn!

Sorry to hear your AS is flaring. I hope you get some relief soon.

When I started Humira, it took 2 months to see any benefit. After the two-month mark things started slowly getting better over two weeks.

We all have an arsenal of things to manage our pain, I think! For me, lying down flat in bed on my back on the heating pad is the first thing I do. A hot water bottle works good too. Another thing that helps me is Homedics makes massage seat pads that you can put in a chair and they massage pretty good and I use one of those. A hot bath with Epsom salts (magnesia) also helps. A muscle relaxer like chlorzoxazone also helps me. I also use a magnesium oil spray right over my spine that helps but it seems like it only helps inflamed joints and doesn't do anything for sore muscles. NASS (www.nass.co.uk) had good tips for what to do in a flare.

I hope you feel better soon!


-******- Kelseria -******-
Re: It's getting real :/ [Re: kglenn] #280205
04/17/18 01:55 AM
04/17/18 01:55 AM
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New York
Banana Online
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Very sorry you can't take NSAIDs. I have a small stash of serious meds, that I use as rarely as I can. It could be the weather, hormones, stress that could cause the flare, I hope it leaves quickly.

Enbrel should start helping very soon. Don't over do it, but don't just lay around.


Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: It's getting real :/ [Re: kglenn] #280206
04/17/18 02:12 AM
04/17/18 02:12 AM
Joined: Aug 2017
Posts: 60
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kglenn Offline OP
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kglenn  Offline OP
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Thanks for responding, Kelseria and Anna! I appreciate your input and recommendations smile


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: It's getting real :/ [Re: kglenn] #280211
04/17/18 04:52 PM
04/17/18 04:52 PM
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SouthernMoss Online
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I'm sorry about the flare. frown I'm one of the slow starters with biologics. Humira took 3-4 months to start working and a couple more months to completely kick in.

Depending on the joint, i use heat or ice. My back loves heat, my wrist and knee hate heat and love ice. I use the hot tub at our senior citizen center where I take water aerobics. When I hurt too much to exercise, I just get in the pool and walk around and hang out. (It's a heated pool, so it's available year-round.) Being in the water takes the weight off your joints.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: It's getting real :/ [Re: kglenn] #280220
04/18/18 02:45 AM
04/18/18 02:45 AM
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kglenn Offline OP
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kglenn  Offline OP
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That's interesting about the heat/cold thing, Ginny. I was wondering about that, because my heel doesn't seem to like heat, but my back does. Thanks for sharing your experience!


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate


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