Partner recently diagnosed. Looking for advice

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Hey guys, my life partner has recently been diagnosed with Spondylitis. Hes very down, and often talks of suicicde. Hes just turned 34.Ive tried to press him on details but it often brings him down so we tend to avoid the subject. What i do know is that exercise helps with pain as does a low carb diet. Could you give me some advice on coping strategies and the general outcome of this condition? Do the drugs only help with the pain rather than prevent further damage?

im not after horror stories so please be kind and measured with responses. Im also aware a lot of this information could of been gleaned from the net already but ive found a lot of upsetting info out there...would like some positive practical steps.Thanks a lot guys.

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  • Posted

    Thomas, tell your partner, to hang in there. It will get better after getting the right medication and exercise. The biological will stop further damage and will help with stiffness and pain. I have been on Humeria, Embrel, Simponi, and now Cosentyx which seems to be doing good. Unfortunately, it's a try and error to find the right medication. I found bike riding helps me. I do some exercise that I learned from physical therapy.

    Good Luck

     

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  • Posted

    Hi Thomas;  You don't give details on your partner's mobility, pain levels or what meds he is currently taking.  However, I assume that he doesn't feel well and now he has a label for it all.  That can be depressing.  Some therapy could help him cope with the negative thinking he may be having.  Also, the internet is actually a good place to discover what meds are out there if/when his no longer work.  Is he on a biologic?  I have read that if a good response from a drug is had, people can feel pretty normal.     A lot of people can't exercise, so if he can... that's great.  Swimming is really recommended for exercise because it is easy on the joints.  What drugs has he been given?

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  • Posted

    Hello,

    Many, many people with AS are not diagnosed and/or you don't hear about them on these sites as they are busy with lives. My father was diagnosed in his 70's... after 50 yrs of AS without only minor inconvenience. Most likely due to his highly active lifestyle.

    There are many medications and low impact exercises. I want to point out not all rheumatologists are equally knowledgeable with AS. Finding a good one (and good PT) can avoid frustration, pain and progression. There is hope for your partner. Now armed with a diagnosis he can make adjustments to diet, activity, etc. He may feel better than he has in years.

    A note on depression... chronic pain and depression go together for many with chronic pain. For less manageable pain levels, there are a couple SNRI's that can make a real difference. (When my pain's down, I move more, and feel much better and I am much happier.). I've taken Cymbalta and Effexor XR at various times. They are marketed as anti-depressants. Some don't want to try these for many reasons: 'I'm not crazy', etc. My rheumatologist and pain management specialists recommended these to help me out of a flare. They helped very much. I was able to build my strength, exercise regularly and have a clear mind to armor myself against another flare. Excellent.

    I wish your partner well. I hope the diagnosis can help him find hope as well as better health.

    And Thomas, please don't neglect yourself. Being a caregiver takes energy. Take time (or even moments) to replenish. The benefits are exponential for both of you.

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  • Posted

    Deborah,

    ?  I don't want to hijack this thread but when I look at the list of biologics that you have taken, if you were to substitute Remicade for the Embrel you would describe my biologics.  Do I have it correctly that the previous biologics did not really work well for you but the Cosentyx does seem to work??  That would be heartening for me because I just took my very first Cosentyx shot this past Saturday as I am beginning the first month's loading process (one shot per week).  The other biologics didnt do a lot and Remicade caused an allergic reaction.  Since Cosentyx has a different mode of action than the rest I am hopeful.

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    • Posted

      Peter,

      Humeria caused diverticulitis, Embrel I had sternum and leg pain, Simponi I had stiffness and was on iburopen 800mg twice a day and my doctor didn't like that. I'm on 300mg of Cosentyx. I don't have hardly any stiffness until the end of the month, before next shot. The last week I've started with scalp dryness, I don't know if its caused by the Cosentyx. I know the doctor wanted me to be on Remicade, but insurance wants you to try the other biological first

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  • Posted

    Again I apologize. It's a personal peeve of mine when someone changes the topic of a thread and here I'm doing it. Just a couple quick points. It seems that you are on an advanced dosage of Cosentyx since I'm being started on 150 mg which I believe is typical. It was when they tried to increase my dosage of Remicade that I had an allergic reaction. No allergic reaction and no good effect at 3 mg per kg of body weight. When I went to 4 red blotches happened. Best of luck to you on the Cosentyx and I'm done butting in.

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  • Posted

    Hi.On first place he should forget about sugar.no sugar at all.please no starch,cut starch where it's possible.And one good advice it's helping with pain,before sleep he should take two three cloves of garlic,cut with knife to small peaces and its very important SWALLOW with water.he should do it minimum for three four weeks.more fruits and veggies.

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