I need advice

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My rhuematologist and I both believe that I have rheumatoid arthritis that is affecting my hands. We both know I have osteoarthritis in both of my thumbs but after a MRI of my right hand it indicated inflammatory arthritis. Anyway I broke my ankle in February and was not allowed to put any weight on it at all until a week and a half ago. Lifting my body to transfer from one seat to another put a lot of pressure on my hands and my hand started hurting worse than they ever hurt. I've been using leflunomide and recently added Gabapentin as well. My rheumatologist wants me on Humira but my copay is $1,050 a month. I am not considered low-income so I don't qualify for any of those kinds of programs and I'm on Medicare so the discount cards are not allowed to be used with Medicare. But I have recently found an organization that thinks they can find me some help with it. In the meantime I was wondering if anyone had any ideas because my hands hurts so much I can barely use them. I use a prescription gel and compression gloves and thumb braces and that's the only thing that keeps me from going crazy.

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  • Posted

    Ohhhhhh, I can sympathize with you, my hands are affected too, and it is a really big problem.  I don't even think the Dr understands just how much.

    ?I have changed over all my kitchen tools for arthirits tools, big handles, I have a bottle opener that looks like a big V, with teeth, you push onto the bottle, jar, hook the teeth in by pushing just a little harder, and then you can turn the lid.

    ?There are many specialist shops that stock tools for arthritis patients, and like you with limited funds, am only slowly replaceing items as old items wear out or break.

    ?I don't know if you have tried diet, but I decided after 15 years, took me that long, to try cutting out ALL WHEAT, every thing I ate I checked labels, and my inflammation is as low as it has ever been, Dr specialist said to me whatever you are doing keep it up, because your ESR & CRP are as low as I have ever seen them, and no I am not celieac, have been tested for that as well as everything else.

    ?has your Dr tried methtrextrate, old remedy but working well for me, and if you can tolerate it good med.

    ?Also if you are getting no reponse to MTX you may not be taking it up across stomach, or a very low dose compared to tablets you are taking, that happened to me, Dr could not understand why it wasn't working, and said I am going to test your blood day after dose, almost nothing in bloodstream, no wonder it wasn't working, changed me over to injection and worked wonders, and liver results happy Dr.

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  • Posted

    So sorry to hear you are struggling, putting all the body weight on your hands would not have helped. Compression gloves only made things worse for me so now I keep a pair of gloves near at all times  and keeping my hands warm makes a big difference. Also I have a paraffin bath for my hands which I use in really cold weather and have found relief with that too. I also use various pain relieving gels that I rub in so that I am not taking any more meds into the body. I am on Benepali injections and that is better for me that other things I've tried. Good luck and keep well.

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  • Posted

    Hi, sorry to hear you are suffering so much, it must be curtailing so much of what you can do.

    immflamatory arthritis responds well to minocycline, may I suggest you check out the roadback foundation website. I have been in remission for 18 months now using this method. It is a slow process and you wil need patience, but a lot of people have got there in the end. Even if you decide to stick to conventional medications there are some interesting research articles on the website. All the best.

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    • Posted

      The minocycline that you mentioned is an antibiotic that they use frequently for bad cases of acne. Now I know some drugs are used for a different reason than what their purpose was. Do you think that is the case here or are you getting your medicines mixed up? And thank you for the referral to the Roadback Foundation I am definitely going to give them a try

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    • Posted

        Yes, minocycline is an antibiotic and has been used in treatment of RA.   I have a book Living with RA and there are a few pages discussing it's use.  The book was written in '03 and since newer drugs have come along it is not as widely used.   Book says not approved by FDA for use in RA but i know I have seen on this site some people have said they were on it and live in US.   Since you mentioned medicare I assumed you live in USA like me.    My next question to my rheum. MD will be if he will let me try it.    Says it has very few side effects compared to other DMARDS   4 drugs I have not been able to tolerate so I don't know the next step either.      

      Hope your hands are slowly improving and try the wax treatments.  My sister said they are wonderful-she doesn't have RA but still said very soothing

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  • Posted

    So sorry you are suffering such pain in your hands.  The pressure on your hands to get up surely caused pain to worsen   If you can get the help from an organization to help with Humira it's  worth a try.   It is sad these drugs are so costly    I couldn't tolerate Humira--my spouse is still employed so we were able to use the card thru drug company for very low cost.   Then I went to another biologic which was also paid thru his private insurance and it worked well for 11 months until I had side effects and had to stop it.  Since you can barely use your hands it is definitely worth a try.   Good luck and let us know how you are managing 

    Gloria

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  • Posted

    Everyone of you and have given me good information for me to check it out. And the answer to some of your questions:

    lyn1951 I have tried methotrexate and after a few weeks I had so muchmany sores in my mouth and it made me feel bad. Then my rheumatologist tested my liver enzymes and they were high. So we both knew I needed to get off of them. And then a few months later I found out I have a fatty liver.

    Chris65956 I heard of those paraffin dips. Right now it sounds like something that would feel really good. I think I'm going to look somewhere to have that done.

    GrannyD I'm definitely going to look into minocycline. If the co-pay is doable then I will definitely ask my rheumatologist if I can try it.

    Gloria814 I never even considered the side effects or the possibility of a bad reaction.

    To all of you thank you for your support.

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