What to do as husband very sick now!

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I'm quite thankfully in remission since my DX in 2010, on Arimidex until August 2015. Prior to my DX, I had (and still have) a very debilitating chronic illness for which I receive SS and private disability. I'm (very) unfortunately unable to work; my disability is not temporary.  

My husband owns his own small (one man) business and has always been there to support me emotionally and financially. A couple years ago, he was diagnosed (at an esteemed hospital by a rheumatologist) with psoriatic arthritis. They prescribed methotrexate, but he didn't take it. If methotrexate doesn't work or isn't tolerated (frequently), the MD can request the insurance provider to prescribe biologics (Humira, Embrel). Hubby's dad had another type of serious arthritis and got lymphoma from methotrexate, a known risk, along with other life-threatening other risks to body organs. His dad died of the lymphoma. Hubby has to date avoided methotrexate due to those fears and a likely inability to work, as methotrexate is not tolerated well, with bad nausea and other immediate side effects, even when it does NOT work. Even a few days off work are a serious issue for us, so even if he does take methotrexate, he has to be well enough to work. 

I want him to see a naturopath at our large naturopathic college in the area, and then get second and third MD/rheumatology opinions if necessary, as some patients do NOT take the risky methotrexate/Humira/Embrel route and manage well. If hubby is disabled, we are *really* in a serious bind. He could become disabled immediately from taking those meds OR gradually from not treating at all. On a scale of pain and disability, I'd say he's already an easy 6. He limps noticeably around clients, works in some degree of pain every day, and is exhausted by early evening. 

I'm not asking for medical advice, but just your gut impression. We can't afford double disability and don't even know if he'd be approved. We have no family and extremely limited savings, only enough to ladt months at best. The stress and worry cause us both to suffer worse physically. I'm completely disabled or would immediately go to work. 

Any opinions? Just personal opinions, not medical, if you were in this situation? Hubby is 60 years old and was the epitome of fitness and health until this disease struck. Thanks for any advice or thoughts. Sorry if it seems off topic, but it radically affects my heakth, too, with constant worry, stress and depression. For what it's worth, one child is getting their Madter's and just starting their life. We have no other family to help us emotionally or in any way. 

Comments

  • shoppygirl
    shoppygirl Member Posts: 694
    edited April 2014

    I just wanted to offer my support and sympathy. My DH was diagnosed with stage lV colon cancer 2 months after my BC diagnosis. We are both 43 years old. Thank goodness after surgery and chemo he continues to be NED but I do understand the stress and emotional toll this type of situation takes on a family. Every time he coughs of says he doesn't feel well, I feel a sense of panic!!

    I think everyone tolerates medication differently, my dad had severe arthritis and took methotrexate and did well on it. He also had silicone injections in his spine every two months that gave him a lot of relief and increased mobility. 

    Hope things work out. 

    Hugs to you b

  • ByFaith
    ByFaith Member Posts: 270
    edited April 2014

    Shoppygirl .... Hello with a huge hug. When I read your reply, I felt so humbled. 

    My DH went to the ER for kidney pain this week. Although we thought it was a kidney stone, the waiting time alone was enough to make me nauseous ... wondering if it was something else ... and that was just the ER and I wasn't the patient! (I seem to be strong when I am the patient and not vice versa.) I can't begin to imagine how you must feel. You are truly strong and so thoughtful to take the time to sympathize with my situation. 

    If my DH can tolerate methotrexate, it's good to know your dad did well on it. We may have no other choice. 

    You'll truly be in my thoughts. Dealing with two cancer DX (yourself and your husband) shows me it's someone like *you* that deserves sympathy and comfort .... and also blessings for your strength and courage and kindness to others such as myself. 

    Your husband is so blessed to have a wife like you. I wish both of you the very best. xoxo

  • ByFaith
    ByFaith Member Posts: 270
    edited April 2014

    To all .... I deleted my original post. There are many other people out there that need help more than my husband and me at the moment. We can research his diagnosis and treatment options, have him see more doctors, and decide on what we feel is best. 

    In the meantime, thanks for having let me vent and for your replies. Hugs to all of you. 

  • lemon68
    lemon68 Member Posts: 684
    edited April 2014

    Hi Byfaith

    I am sorry for you and your DH to have to be going though such hard health issues. I think you are correct to want to get 2nd opinions. I also think it might be a good idea to search online for any Clinical Trials for  psoriatic arthritis, you just never know what is out there. I live near major teaching hospitals so always a lot of that happening, you might want to inquire with your local facilities also.

    All the best to you, prayers for you both.

  • ByFaith
    ByFaith Member Posts: 270
    edited April 2014

    Thanks lemon. Clinical trials are a good idea to investigate that neither of us had thought of. Thank you!

  • lemon68
    lemon68 Member Posts: 684
    edited April 2014

    ((HUGS) to you Faith.

  • shoppygirl
    shoppygirl Member Posts: 694
    edited April 2014

    faith

    Thank you for your kind post. There is no need to delete your post. We are all individuals, dealing with issues that are important and impactful to our families. The beauty of this website is that we can post about our concerns and receive the support we need no matter what the issue is. 

    My situation is very crazy and scary but my DH is doing amazing!  He is doing so well that he requires no further treatment at this time and they have moved up his scans to every six months. The oncologist advised that he has never treated a case like this before. 

    Anyway, I hope that you can find some help for your DH ASAP! 

    Hugs 

  • ByFaith
    ByFaith Member Posts: 270
    edited April 2014

    Shoppygirl,

    Glad your DH is doing so well. You're both very strong and have had so much to deal with the last couple years. It is a shock, and we'd wish it upon no one (not even ourselves!), but there are the good times that we never would have experienced had we not been tested like this .... finding new friends, seeing the real and true beauty in each person and in life... beautiful things like that. Sure, I wish I'd found them another way, but I'm not in control. Glad someone else is. ;-)

    Hugs to you, too. xo

  • AmyQ
    AmyQ Member Posts: 2,182
    edited April 2014

    ByFaith, 

    I agree with ShoppyGirl, you don't have to delete your post.  We are here to support each other, offer advice or simply a shoulder. What you are dealing with is of concern to you and your DH, but it's also important to us as well.  I'm not trying to pry, only to offer the thought that whatever you are going through, it's not trivial.  We all have stuff.  Hang in there.

    Amy

  • shoppygirl
    shoppygirl Member Posts: 694
    edited April 2014

    Well said AmyQ!!

  • ByFaith
    ByFaith Member Posts: 270
    edited April 2014

    Thanks, AmyQ ..... and all of you! I promise not to delete my post in the future. :)

    In this case, I got what I now can see I was *really* looking for .... kind, thoughtful, understanding suggestions and words of encouragement from my fellow sisters during this worrisome time with my DH's progressive psoriatic arthritis. Thank you {{ ALL }} for that. 

    Group hug! xoxoxo

  • Ariom
    Ariom Member Posts: 6,197
    edited April 2014

    Hello ByFaith, I didn't see your original post, but think i understand your Husband is suffering with a form of Rheumatoid Arthritis from Psoriasis. If the concern is about Methotrexate, I can vouch for it. I was on it for 7 years for Rheumatoid. I couldn't tolerate the tablets, so I was taught to inject it and did it once a week myself I tolerated it in that form much better. I have known others with Psoriasis/ Arthritis who had good results from it too.

    I wish you both all the very best!

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