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Struggling and need advice #280300
05/08/18 03:56 AM
05/08/18 03:56 AM
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HoosierDaddy Offline OP
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HoosierDaddy  Offline OP
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Hi all,

It’s been a while since I’ve posted on here, originally DXed with AS in 2011 and symptoms since about 2007. Married for 13 years this year and three kiddos, 8, 6, and 2. I’m 35.

I responded to TNFs well and was taking pain meds in order to reach a near-pain free state until I was diagnosed with meloanina in 2015. Since then, my only option has been high dose NSAIDS, Rituxan, prednisone, injections, and opioids (just to keep the pain between a 5-8). I’m tired of the opioids, but my thoracic pain is dang near unlivable sometimes. I have bone spurs and fusion around T12 (imaging 3 years ago, I’m sure it’s worse now) and I’m looking for advice. Im hopeful that the next gen biologics that target a different inflammatory pathway won’t carry the malignancy risk, but I’m still probably a couple years out from being able to try those (if they’re even on the market).

Sleep is terrible beyond about 4-5 hours in bed and I now cannot sleep without either pain meds or a sleeping pill (have used ambien and Xanax in the past and currently take Belsomra from time to time). We have a sleep number bed and I have it set to very soft, because any firmness at all destroys my back. Hotels are hell.

Has anyone tried the Purple mattress?
What do you take if TNFs are off the table?
What do you do about sleep?

I tried CBD oil, but it didn’t seem to help much. I hate taking prednisone because of the rapid weight gain. I’m fighting to get into and stay in shape, having lost 30+ lbs in the last year or so and within 15-20 of my goal. It’s like I have to choose between pain and health. I’m just tired of it and looking for advice and encouragement. Thanks in advance to all of you.


Corey
Husband to an amazing wife and two indescribable boys who have made my life whole. Fighting the battle each and every day for them.
Diagnosed with AS 10/8/11.
Ups and downs with meds since diagnosis but now simply no/low starch, sugar, and minimal dairy and feeling great.
Re: Struggling and need advice [Re: HoosierDaddy] #280302
05/08/18 11:36 AM
05/08/18 11:36 AM
Joined: May 2010
Posts: 1,430
Whidbey Island WA
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WhiteCell Offline
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Unclear what diagnosis in 2015?


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Struggling and need advice [Re: WhiteCell] #280319
05/09/18 12:53 PM
05/09/18 12:53 PM
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Brody96 Offline
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Have you tried any memory foam mattresses? A lot of spine specialists argue they are the best for people with severe back pain. I’ve experimented with sleep number, tempurpedic, mattress toppers, purple bed, etc but no luck. However, most recently I got a Loom and Leaf mattress and have seen a lot of improvement. It comes in two firmness options. I chose the firmest because I need medium-firm back support in order to get any sleep. If you like less firm the other option might be best for you! I also have an adjustable base that lets me play around with my head and feet elevations when I’m in a lot of pain. I’m currently looking into options other than TNFs (see my most recent thread). Have you talked to your doctor about methotrexate, cytoxan, cosentyx, etc ? As far as sleep, I haven’t found a 100% solution to that. I sleep with a heating pad and bamboo pillows and I’ve played around with different mattresses. So far that’s helped the most. I tried trazadone and ambien in the past but the pain in my spine and hips never let me stay asleep. Let me know if you solve the sleep puzzle!


22yr old female. Ankylosing Spondylitis and Lupus.
7 hip surgeries and counting

Dog mom of 3 rescues laugh

Re: Struggling and need advice [Re: HoosierDaddy] #280321
05/09/18 03:29 PM
05/09/18 03:29 PM
Joined: Jul 2006
Posts: 6,587
New York
Banana Offline
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Have you seen a top rheumatologist? I mean like in LA, Mayo Clinic, Hospital for Special Surgery, etc etc? They know so much more than regular doctors because their hospitals are involved in research.

Sorry you are suffering. Many of those mattresses offer free 30 day trial, I recommend trying them. One time I spent the night in a hotel with the number mattress just to get an idea of what was best for me. (((knowing the number gives you an idea of firm, soft etc))

At night I have been using marijane to sleep and it has helped so much. In a legal state I bought several different versions and tested them--only the kind you eat. Bought what worked and snuck it home. Only need it once/twice a week now and no hangover in am.



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: Struggling and need advice [Re: HoosierDaddy] #280323
05/09/18 07:10 PM
05/09/18 07:10 PM
Joined: Mar 2013
Posts: 2,008
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SouthernMoss Offline
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Quote
diagnosed with meloanina
Did you mean melanoma?

This page https://www.spondylitis.org/Medications gives information about the various medications normally used to treat spondyloarthritis. I don't know if Cosentyx (the IL-17 inhibitor) or Stelara (the IL-12/23 inhibitor) would be appropriate in your case, but you could talk to your rheumy about them.

I take cyclobenzaprine (a muscle relaxer) and melatonin (an over the counter supplement) as needed to help me sleep. You might also try taking a hot bath or shower before bed.

My rheumy recently recommended the Salon Pas patches with Lidocaine for my knee pain, and they do help to take the edge off. I also use Aspercreme lotion with Lidocaine on my thumb and wrist to help with pain there. I don't know if either of these would be helpful to you, but you might try them.

I'm sorry you are having such a hard time. I hope you are able to find some relief.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Struggling and need advice [Re: HoosierDaddy] #280539
06/08/18 04:58 AM
06/08/18 04:58 AM
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Posts: 58
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HoosierDaddy Offline OP
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HoosierDaddy  Offline OP
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Sorry, I kinda come and go. 2015 Dx was melanoma. My spondylitis Dx is Ankylosing Spondylitis. I have a rheummy apt next week and I am going to ask about methotrexate. I need a soft, soft bed. Anything firm and I’m up every half hour trying to find a position that doesn’t kill my thoracic.


Corey
Husband to an amazing wife and two indescribable boys who have made my life whole. Fighting the battle each and every day for them.
Diagnosed with AS 10/8/11.
Ups and downs with meds since diagnosis but now simply no/low starch, sugar, and minimal dairy and feeling great.
Re: Struggling and need advice [Re: HoosierDaddy] #280540
06/08/18 02:09 PM
06/08/18 02:09 PM
Joined: Mar 2013
Posts: 2,008
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SouthernMoss Offline
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Methotrexate typically doesn't help with spinal symptoms. That is true with me. MTX does wonders for my peripheral symptoms, but nothing for my spinal symptoms.

Brody96 mentioned an adjustable bed. Do you think that might help with your thoracic pain? Before my diagnosis and treatment, I would wake up in pain in the middle of the night and go to my recliner, where I would spend the rest of the night. An adjustable bed would accomplish that same purpose.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Struggling and need advice [Re: HoosierDaddy] #280551
06/12/18 02:06 PM
06/12/18 02:06 PM
Joined: Jul 2011
Posts: 58
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HoosierDaddy Offline OP
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HoosierDaddy  Offline OP
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I’d love an adjustable bed and should probably suck it up and purchase one but the price tag on the ones I’ve seen are a bit of a shocker (would require a new mattress so my wife can sleep flat). My rheummy just started pre-with for Cosentyx, which I am both excited and nervous about.


Corey
Husband to an amazing wife and two indescribable boys who have made my life whole. Fighting the battle each and every day for them.
Diagnosed with AS 10/8/11.
Ups and downs with meds since diagnosis but now simply no/low starch, sugar, and minimal dairy and feeling great.
Re: Struggling and need advice [Re: HoosierDaddy] #280600
06/21/18 04:05 PM
06/21/18 04:05 PM
Joined: Jul 2011
Posts: 58
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HoosierDaddy Offline OP
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HoosierDaddy  Offline OP
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Started Cosentyx yesterday and aside from insomnia last night, I’m feeling pretty good. Even though I didn’t sleep, I don’t really feel fatigued. The various IL-17 inhibitors are my only remaining options due to the aforementioned melanoma while on Simponi. Hoping and praying this works and I can have some relief apart from opioids and massive NSAID and prednisone doses. It’s been 3.5 years of daily struggles since the melanoma dx.


Corey
Husband to an amazing wife and two indescribable boys who have made my life whole. Fighting the battle each and every day for them.
Diagnosed with AS 10/8/11.
Ups and downs with meds since diagnosis but now simply no/low starch, sugar, and minimal dairy and feeling great.
Re: Struggling and need advice [Re: HoosierDaddy] #280601
06/21/18 06:08 PM
06/21/18 06:08 PM
Joined: Mar 2013
Posts: 2,008
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SouthernMoss Offline
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SouthernMoss  Offline
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Fingers crossed that Cosentyx will be your wonder drug.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)

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