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New Guy #282561
02/05/19 01:43 AM
02/05/19 01:43 AM
Joined: Jan 2019
Posts: 3
Oklahoma
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Drawshua Offline OP
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Drawshua  Offline OP
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Oklahoma
Hello! I'm new here. I just turned 32 last Wednesday. I was diagnosed with Ankylosing Spondylitis last October. I started on Cosentyx in November. It seems to have made me hurt less often but I'm still in constant pain. My SI joints hurt a lot and all the joints in my hands and feet are the worst. Basically I hurt everywhere. Over the counter meds stopped working and my liver enzymes were high so I stopped them. I have a wife and 3 boys under 10 and my wife does the home school thing so I'm a little worried about what would happen if I couldn't work because of this eventually. I've been poking around on this forum for a couple weeks. There's a lot of good information and I hope to learn and contribute eventually.

Thanks!

Last edited by Drawshua; 02/05/19 02:14 AM.
Re: New Guy [Re: Drawshua] #282564
02/05/19 04:21 AM
02/05/19 04:21 AM
Joined: May 2010
Posts: 1,488
Whidbey Island WA
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WhiteCell Offline
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Whidbey Island WA
Welcome. Most of us had to work through many questions and find answers. Are you currently seeing a Rheumatologist and if so what is his/her plan for you?


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: New Guy [Re: Drawshua] #282568
02/05/19 02:58 PM
02/05/19 02:58 PM
Joined: Jan 2019
Posts: 3
Oklahoma
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Drawshua Offline OP
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Drawshua  Offline OP
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Oklahoma
Thank you. I have been seeing a rheumatologist and my next appointment is in March. She started me on 150mg every 4 weeks of Cosentyx. It seemed to make me hurt less often but after my grandma died in early January everything got worse. We were very close. Since she did not give give a loading does (150mg a week for 5 weeks) I heard that she might give me the loading dose if I haven't shown much improvement. She gave me Meloxicam for pain but it didn't work. I didn't want to take heavy pain medicine. I'm rethinking that now. It might sound crazy but it is getting difficult to use a keyboard and mouse all day with my hands hurting so bad.

Re: New Guy [Re: Drawshua] #282569
02/05/19 03:44 PM
02/05/19 03:44 PM
Joined: Jun 2016
Posts: 464
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Winston Online
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Welcome to the forum. It is quite possible that the death of your grandmother caused a flare. Stress -- either physical or emotional -- can do that. Many of us who take biologics have to supplement with other drugs during flares. So it's not surprising that Cosentyx let you down a bit during that period. In general, finding the right combination of medications is a trial and error process. Some people get lucky with their first drug; most don't. Many people who have peripheral symptoms -- e.g. hand and foot pain -- like you are having have to take a non-biologic DMARD, such as methotrexate, along with a biologic to control those symptoms. You should discuss that option with your rheumatologist. There are several people who post here regularly who have chronic hand pain specifically. Hopefully they'll chime in with some other recommendations for you. You might also discuss non-medical treatments, such as physical therapy, with your rheumy. It can help. In the meantime, hang in there.

Re: New Guy [Re: Drawshua] #282570
02/05/19 04:05 PM
02/05/19 04:05 PM
Joined: May 2010
Posts: 1,488
Whidbey Island WA
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WhiteCell Offline
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Joined: May 2010
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Whidbey Island WA
Warmth can be a big asset . When first diagnosed I would wear gloves to bed. Now I would basically add an ointment like Aspercreme with Lidocaine and wear gloves to see if that helps the next day. I know little about Cosentyx not having required any adjunct to the Remicade I've been receiving for nearly two decades now. It has worked well. I do use long acting 8 hour Tylenol and recently added Voltaren Gel for my neck at nighttime.

There are many options. Working with your doctor is key as they too trial treatments starting low and moving up the ladder of workability until they find what works best. I would approach your doctor for options for your hands sooner than later.


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: New Guy [Re: Drawshua] #282574
02/05/19 09:54 PM
02/05/19 09:54 PM
Joined: Jun 2012
Posts: 571
Los Angeles, CA
RAHMBA Offline
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Posts: 571
Los Angeles, CA
Welcome Drawshua. I agree with what's been said by others. This group is very knowledgeable and supportive. If you want to meet others in person, than I highly suggest a local SAA education/support group meeting or live in-person SAA patient education seminar (next one is in NY, then Atlanta)

Regarding the future. That is not possible to predict for you. I believe there is some evidence that high CRP and early damage to si joint/hips can generally help predict future fusion.

For most of us, you will hear about ''flares' to describe the really tough times. The disease varies a lot from person to person. So, my experience may not be anything like yours. I've been able to work full time jobs throughout. For me, I've had some days much better than others. when I was first diagnosed, the pain made it impossible to roll over in bed at 3am. I've also had some years much better than others. it's definitely not linear for me. These past 8 years have been MUCH better than my 30s. I have some limited range of motion, but my function is great. my pain is miniscule compared to past.

Happy to talk anytime 800-777-8789.

Kind regards,
Rich


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: New Guy [Re: Drawshua] #282655
02/18/19 04:28 PM
02/18/19 04:28 PM
Joined: Jan 2019
Posts: 3
Oklahoma
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Drawshua Offline OP
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Drawshua  Offline OP
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Oklahoma
Thank you for the warm welcomes!

Shortly after posting this my dad was broadsided and totaled his car. His spine looks like he has the AS but he had a staph infection in the same area so they have been saying that is what caused it. It is completely fused so I worried when he got in the wreck but he is okay. He saw the same rheumatologist but she didn't give him any diagnosis. He takes pain pills and muscle relaxers every day.

That must have been a flare like you said cause by all the stress. I started walking a lot and it seems to help although it irritates my SI joints. I'm hoping I can push past the pain and stay active. My hands still hurt but not as bad. It seems to get worse after high carb meals so I limiting my carb intake now. I've actually lost about 8 pounds this month. I am also struggling with depression but that's nothing new. I've been diagnosed with bipolar disorder and a bunch of anxiety disorders but I don't take anything for that at the moment. Just blood pressure pills.

Re: New Guy [Re: Drawshua] #282656
02/18/19 04:47 PM
02/18/19 04:47 PM
Joined: Mar 2013
Posts: 2,091
MS
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SouthernMoss Online
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SouthernMoss  Online
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Posts: 2,091
MS
Welcome Drawshua. I'm so sorry about your father. I hope he recovers quickly.

I'm glad your pain has decreased some. Keep us posted on your progress.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
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: New Guy [Re: Drawshua] #282666
02/19/19 06:51 PM
02/19/19 06:51 PM
Joined: Jan 2019
Posts: 10
Netherlands
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Lacan Online
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Lacan  Online
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Netherlands
Originally Posted by Drawshua
Thank you for the warm welcomes!

Shortly after posting this my dad was broadsided and totaled his car. His spine looks like he has the AS but he had a staph infection in the same area so they have been saying that is what caused it. It is completely fused so I worried when he got in the wreck but he is okay. He saw the same rheumatologist but she didn't give him any diagnosis. He takes pain pills and muscle relaxers every day.

That must have been a flare like you said cause by all the stress. I started walking a lot and it seems to help although it irritates my SI joints. I'm hoping I can push past the pain and stay active. My hands still hurt but not as bad. It seems to get worse after high carb meals so I limiting my carb intake now. I've actually lost about 8 pounds this month. I am also struggling with depression but that's nothing new. I've been diagnosed with bipolar disorder and a bunch of anxiety disorders but I don't take anything for that at the moment. Just blood pressure pills.


Hi Drawshua,

I was diagnosed with bipolar disorder (type 2) years ago, even before I started having AS symptoms. I also have anxiety issues. It used to be social anxiety, but since the AS has acted up this has shifted more towards hypochondria. Even though the symptoms for all these diseases are pretty mild for me, it's still quite a struggle to deal with them…
Just a heads up, you're probably already aware of this, but since Lithium and NSAIDs interact with each other, you can't take NSAIDs while you're also on Lithium. Definitely discuss your AS diagnosis with your psychiatrist if you still see one. I'm not on lithium anymore, but should the need arise for a mood stabilizer, I will start valproic acid which is safe to use alongside NSAIDs.
Also be very careful with prednisone! I've heard it can send you straight into full-blown mania. Definitely mention you have bipolar disorder to your rheumatologist if he/she wants to prescribe prednisone...


Medication: Arcoxia 60mg as needed
No official dx yet (no visible fusion of SI joints on x-rays)

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