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#276135 - 09/23/16 04:13 PM New to AS and need guidance
Believer7 Offline
Registered Visitor

Registered: 09/15/16
Posts: 8
Hi! My husband was recently diagnosed with AS. He carries the gene and they see the "sign" in his x-ray. He has been having bad back problems for years, but this last year started losing strength in his hand, his elbows hurt and really bad fatigue. They have also found changes in his heart. His ventricles and aortic root are enlarged and he has a leaky valve. He is 36 years old.

We don't get a lot of guidance on what to do from the doctors other than eat healthy, exercise and he is on every other week IV Remicade infusions.

Is Remicade the best option available? What else can we be doing to help him and slow the progression of this?

We have 4 little girls 9, 7, 3, and almost one.

What can we expect for the future...meaning when people say disabled by AS why is that? Can they walk?

Any insight and guidance is greatly apprecaited!:)

Thank you!

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#276143 - 09/24/16 08:26 AM Re: New to AS and need guidance [Re: Believer7]
SRS Offline
Registered Visitor

Registered: 02/07/12
Posts: 23
Loc: Pennsylvania
Hi, Believer7. Thanks for posting your heartfelt message. I'm sorry to hear you and your husband are going through this, yet am glad he has a diagnosis to work with. As someone with spondylitis, I'd like to share my thoughts about your questions.

--First, regarding ways to help manage the condition and improve flexibility, here are some pointers:
1.) Exercise. It might seem counterintuitive, but exercise is one of the biggest keys. Here is a link to a slideshow video that I believe will be informative and encouraging for you and your husband:
https://www.youtube.com/watch?v=-hHUsq6BuJc&feature=youtu.be

The video contains photos and information contributed by spondylitis patients and advocates to help promote the benefits of exercise.

Also, on this SAA site, here is a link to a DVD that contains stretching exercises designed to help AS and other forms of spondylitis:
http://store.spondylitis.org/productlist.aspx?department=37#.V-aSLcZ4fDc

2.) It's important to arrange your husband's workspace and home environment so that it does not aggravate the condition. For example, if he uses a computer at work or home, make sure he isn't looking down at the keyboard because that puts strain on the neck. I have a second monitor at face level, stand up on thick mats to type, etc. Having the right chairs to sit on is also very important. I would be happy to share more specifics if you are interested.

3.) You might want to look into making ibuprofen lotion to apply topically. My rheumatologist recommended it. In my experience, it helps a lot with reducing swelling and pain. For a 10% solution, use a mortar and pestle to crush 120 uncoated tablets, and mix the powder in 8 ounces of lotion. I will be happy to provide more specifics about where to purchase the tablets and the best lotion I've discovered for absorption.

4.) The emotional component is very important. A wise SAA mentor years ago told me to focus off the pain--not to try to block it mentally, but to learn how to embrace whatever is happening around me. This has been a huge help emotionally.

It's also very important not to have your identity centered on the disease. For example, "I have spondylitis AND I'm doing these things" is more powerful than "I have spondylitis BUT I'm doing these things." Using the word "and" gives a much better perspective.

I'm not sure what your religious beliefs are, but praying has been super-helpful for me. Being able to talk with God about how I'm feeling--similar to the Psalmists in the Bible, is comforting. I don't believe God causes suffering but I believe He can help good come out of it.

For example, I've been learning how happiness is dependent on our circumstances, but joy in connecting with God (and for me as a Christian, with Christ) and those around us, can remain untouched by the level of pain we are in. I'm not saying it's easy, but I want to encourage you and your husband that the more you can embrace what he can still do, and minimize focusing on things that aren't workable anymore, the better you will feel individually and as a team.

Lastly, it will be very important for you and your husband to be able to talk about how you are each feeling, without having it be threatening. My husband used to be uncomfortable with hearing that I had an extra-rough day with the spondylitis symptoms because he couldn't fix it. Thankfully, we've learned how to share what's happened during each of our days as a kind of "weather forecast." Being able to say "Today was stormy" or "Today was sunny" and provide specifics, while not having the day impact the evening's enjoyment, has been beneficial. Sharing both challenges and victories is very important.

--Secondly, regarding medications, the good news is that more options are available these days than years ago. I can't speak directly to what will help your husband the best, but researching medications on this site can be helpful. Learning how each type works can provide good insights. It's always helpful to have a doctor who will explain things clearly and be a partner with you and your husband in making those types of decisions. You might want to consider getting a second rheumatologist's opinion.

--Thirdly, regarding what to expect for the future, I would like to encourage you that all of us spondy patients have so many more tools than folks did in prior decades to help us live long, enjoyable, fulfilling lives. While every case is different, I'm encouraged by the ongoing successes of fellow patients and what SAA is doing to help improve outcomes.

Well, this was a very long response, but I hope the information is helpful for you and your husband. If you would like to communicate outside of the forum, please feel free to send a private message, and I can share my email address with you.

With warmest wishes,
Susan

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#276149 - 09/24/16 03:48 PM Re: New to AS and need guidance [Re: Believer7]
Believer7 Offline
Registered Visitor

Registered: 09/15/16
Posts: 8
Thank you so much, Susan for your response. It is so helpful! I have never heard of making an ibuprofen lotion before. I am going to look into that for my hubby.

At lunch today my husband and I were talking about how our identity in not in our conditions but in Christ. It was nice to read your affirming words of what we were already talking about. God's timing is so good.

Have you had experience with Remicade? My husband has only had to two IV treatments and has been extremely tired since. Almost has a hard time making it through the day. Is that normal? He will be okay, then out of no where extreme exhaustion hits and he can barely drive.

Thank you again for taking the time to respond.

Cortney

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#276158 - 09/25/16 08:13 AM Re: New to AS and need guidance [Re: Believer7]
SRS Offline
Registered Visitor

Registered: 02/07/12
Posts: 23
Loc: Pennsylvania
Hi, Cortney. I'm so glad the information was helpful. Yes, God's timing is awesome. :-) I like to think of believers as forming a tapestry, and that God uses those connections in amazing ways.

I'll plan to send you a private message later today or tomorrow that has specifics about making the ibuprofen lotion. That will save you time for where to purchase the uncoated ibuprofen and lotion if you decide to give it a try. I forgot to mention that only 6% of the applied lotion gets absorbed in the blood stream, so you can use a lot of the lotion with very little going beyond where it's needed most at the joints, tendons, and ligaments.

Regarding Remicade, I don't have personal experience with that drug. I looked up its side effects on MedlinePlus (https://medlineplus.gov/druginformation.html), which is a site my doctor recommended for looking up medical info. I didn't find anything about exhaustion as a side effect; however, each person reacts differently to drugs. Because extreme exhaustion tends to be part of spondylitis, it may be from the disease itself, although I'm not sure why the timing would happen right after the Remicade. For me, just going to the doctor's office or anywhere in public is more tiring than being at home. I work from a home office because I need to take period breaks in the day to manage my symptoms, and also include about an hour for stretching mid-day. I was recently diagnosed with small-fiber neuropathy on top of the spondylitis (and other underlying health conditions), so it's meant another adjustment for my schedule. Thus, it takes me about 11 hours to get in an 8-hour day. I use an Excel file to track my time for when I stop and start again so I make sure I am getting all of the work hours accomplished, while doing what I need to do for my health.

If I push too hard for too long, I'll have what my husband and I describe as an "energy crash," which feels as if all of the air has been let out of the tires, accompanied by dizziness and nausea. Here is a link on this SAA site that has patients' descriptions of what the spondy exhaustion feels like: http://www.spondylitis.org/Learn-About-S...ochures-More/15 My favorite is the following quote from Michael in NY: I liken it to wearing a jacket containing 40 pound weights in each pocket, while slogging through a vat of molasses with suction cups glued to the bottom of your shoes.

Also, I exercise about five evenings a week out of seven, which ironically, improves the exhaustion level overall. Sometimes the very last thing I want to do is go downstairs to exercise, and yet, I am always glad after I've done the exercise. It's a balance of learning what your body needs and when it makes sense to push forward with exercise compared with some days when it is better to get extra rest.

For weight-lifting, I wear braces for my knees, wrists, elbows, and shoulders. Those have allowed me to get a great weight-lifting routine on machines and using free-weights. When I use the mini trampoline to jog in place, I wear knee braces. For swimming, that is the best exercise I've found for loosening the joints/tendons/ligaments. I have a membership to LA Fitness just for the indoor pool. The rest of the exercises I do at home. I prefer home workouts for a few reasons. While I work out at home, I watch DVD series, so it gives me something to enjoy while exercising.

When I send the private message to you later today or tomorrow, I'll include my email address and phone number so you can contact me directly if you would like.

You and your husband will be in my thoughts and prayers.

Thanks and warmest regards,
Susan


Edited by SRS (09/25/16 08:15 AM)

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#276166 - 09/26/16 08:02 AM Re: New to AS and need guidance [Re: Believer7]
SRS Offline
Registered Visitor

Registered: 02/07/12
Posts: 23
Loc: Pennsylvania
Hi, Cortney. I sent a private message to you with details about the ibuprofen lotion, and included my contact info.

With thoughts and prayers for you and your husband,
Susan

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#276178 - 09/27/16 03:11 PM Re: New to AS and need guidance [Re: Believer7]
Believer7 Offline
Registered Visitor

Registered: 09/15/16
Posts: 8
Thank you. We are thinking of getting my husband a gym pass so he can swim before work. He can't lift weights or do push ups like he prefers right now because of the elbow and hand pain.

The way you describe the exhaustion is how he looks. It is almost like you can see it wash over him and his body is just "done".

He works full time, is in Bible College and we have 4 little girls. He is tired. Not to mention I have a very serious heart condition and I know that weighs on him. He really is a champion of a man, only because he relies on the Lord for his strength.

Thank you again for taking the time to inform me and guide me.

Many Blessing,
Cortney

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#276195 - 09/28/16 02:51 PM Re: New to AS and need guidance [Re: Believer7]
SRS Offline
Registered Visitor

Registered: 02/07/12
Posts: 23
Loc: Pennsylvania
Hi, Cortney. I'm so sorry that you and your husband are going through these rough health challenges. I'm glad you are both relying on God's strength, comfort, and guidance, and are continuing to search for the best path to manage your wellbeing.

You and your husband are in my thoughts and prayers. If I can help with anything else, please let me know.

With warmest regards,
Susan

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