Recent diagnosed with RA

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After the past 2 years of having pain that moved from joint to joint I decided I was either crazy or something was seriously wrong with me, so I went to my GP and he suggested we did blood work but he thought it was just in my head and that I need to take a break from working so hard and relax more. I am an electrician by trade and a hay farmer so I am accustom to being sore and in pain but this was different. So after the blood results came back I was referred to RA doctor, my GPA said that I shouldn't take any vitamins that that would only make my ra worse, (going to replace him). Having felt like I had stepped back in time and waiting over 4 hours at this doctors office I have been pleasantly pleased my doctor he is amazing, understands exactly what I'm talking about and doesnt think I'm crazy! Thus far anyways. He put me on methotrexate, folic acid, and ibuprofen the first visit, I was instructed to take for 6 weeks then my follow up visit which was 2 weeks ago and I've have no improvement if anything I'm hurting worse, so he set me up with enbrel. I am extremely nervous about this new drug, I don't even like taking Tylenol! So I'm super freaked out and I know the good outweighs the risk according to my doctor anyways. My family doesn't really understand the pain that I am in how constant and bearing it can be, nothing I take seems to reduce it, my hands ache constantly and only getting worse. I'm sorry to vent and ramble but I feel like someone on here might understand exactly how I feel. I understand that this drug has been out for 15 years and unfortunately I've read the side effects better to know I guess. I know attitude is key and I have tried my best to be as positive as I know how to be but it just sucks!

Rant from Tennessee.

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12 Replies

  • Posted

    Hi Tracy, sorry you are having a rough time. I have RA. Tried Methotrexate, plus a few other drugs and found the side effects awful. I was then put on Benepali, which is supposed to be the same as Embril. After 6 months, I have improved a lot, not perfect, but much better. To be fair, I don't work, but the side effects are a lot less than the previous drugs. I to was nervous and apprehensive about injecting myself. The easiest place is in my stomach. I think the thought is worse than doing it.

    I also read the side effects, unfortunately any drug has them. I've gone from walking with a stick and sometimes a wheel chair to managing to walk without help. Don't get me wrong, it still hurts a bit, but nothing like it did.

    I hope this helps, we all have to go through a process of different drugs until we find the one that helps the most.

    Good luck, hope this helps, sorry for going on a bit. 😊

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  • Posted

    I am so sorry you at experiencing such pain and limitation. I understand the frustration my pain was not as bad as yours but the limitations on you life I completely understand. I eventually started on biological and it changed my life I am nearly back to normal and I have returned to work. Some drugs work for some and some work for others I hope you find something that works for you. I think it's worth the try, don't this this disease win!

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    • Posted

      I live in Australia so I am on Actemra (tocilizumab) it is a biological drug. These drugs are man made by genetic engineering that are closely related to a protein that occurs naturally in the body that suppress the immune system in autoimmune disease. This one treats inflammation from harming the joints. Some have had no luck with this drug some have. I was lucky as it was the first drug of this kind I tried, there are several. All the best, I know how you feel by no one understanding I think most of my friends and relatives think it's all in my head!

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  • Posted

    I know your pain and im sorry to hear you have RA. Rheumatologist suggested the same medication for me. After reading and hearing about all the side effects, I didnt take the methorx. However, my RA gave me cortisone shot and it relieved some of my joint pain . I also take 600 ibuprofen and Tylenol 500 3x daily.

    I find that i have daily limitations so I listen to my body and just rest. I hope you feel better and get a treatment to help you. Thank you gor sharing.

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  • Posted

    Sorry your having so much pain. I have RA also. I'm on methotrexate also, not doing a thing for me. I take krill oil, vitamins D, advil, and take and just started taking CBD oil for pain. Had my first night of sleeping for 8 hours, no pain. I don't like All the side effects of the shares, and biologics. Hope things work out for you. Everyone is different, but I would rather take the CBD oil, with no side effects, then something with so many.I also only take 1 to 2 advil in the morning. That's it, sometimes none at all.Good luck to you Tracy..

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  • Posted

    I totally understand!  It defininately is not like regular arthritis!  It took me a year and several doctors to be properly diagnosed!  I have been on Enbrel injector pen for over a year and it works great for me.  Can't take methotrexate.  It stings but if you keep it out to warm up for an hour to hour and half it hardly stings!  Some people say they have to numb them before with ice but if you let it really warm up it's not bad!  The cost is awful and I found a foundation that pays totally for it!  Hope it works for you!  Keep us posted!

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  • Posted

    You better get used to taking meds or u won't be able to walk

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  • Posted

    Tracy, I too was told that my symptoms were all in my head. I then was referred to the school of medicine and a kind Dr. there found that I have R.A. I have taken Enbrel for a number of years and I have to say it gave me my life back. it has given me energy again and very little pain. Good luck!
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  • Posted

    Thank you all for sharing your experiences with me, believe it or not it helps.  I am sorry that each of you are in pain by this horrible dieases!  The last 2 days have been spent sitting up Enbrel support copay and getting my insurance adjusted and dealing with Accredo pharmacy, which up till recently I've never heard of. I have good days and bad days, like I am sure most of you do too.  I have to learn how to listen to my body, I haven't in the past and it causes me to be in more pain for longer, I have heard that certain foods can aggravate the RA more so than others, I've been trying to watch what I eat and trying to get more exercise, so I joined a local gym.  I am still working a 40+ hour week and barely keeping up with my chores at home, seems to be getting harder as each day goes by.  I have learned to ignore the pain throughout the day I try to stay busy and not think so much on it, but at night is when it gets to me and causes me to lose sleep/rest which counteracts and causes me more pain.  It's a lose lose situation, but I am still hopeful and hoping that Enbrel is my answer.  All things are possible and this diease will not own me, although it's winning at the moment! lol again thanks to all that replied, I was definitely in a low place last night and you all words of encouragement and stories of each of your experience helps.  Sincerely appreciate it. 

     

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  • Posted

    Hi Tracy, it's a horrible disease and unfortunately it's a bit trial and error as to what works for each of us with some pretty toxic drugs. That said, I have Psoriatic Arthritis, I can no longer take methotrexate because it was causing lung fibrosis and I had to stop my Benepali due to chest infection (which wouldn't clear while I was using Benepali) I used oral steroids in the interim and I've just restarted my injections. I can feel the benefit already. Wonderful. Hope you get sorted soon. I get so cross when docs say it's in your mind. "Another neurotic woman" - I have heard docs say this. I started with flitting joint pain but I was suspicious straight away as I could remember (vaguely!) from distant nurse training that it's a symptom that children get. Good luck. Carol (UK) x

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