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I need advise please!! At the end of my rope

  • By HeyJude

    I am 60 yrs old and was dx’ed with RA probably about two years ago although I know its been going on for decades, literally. I see a RA doc probably about every three months or so and this guy is a quack. He tells me that the deformities in my hands are not from RA. He says the intense pain I live with every single day of my life is not from RA. I take Enbrel once a week and that is it. He will not prescribe anything else. This last visit, probably about two weeks ago he did put me on a prednisone taper and for the first time in literally years I was actually almost pain free. Well, now I’m at the end of the taper and I hurt worse than ever now. So much so that I made the comment that I can’t imagine living any longer like this. The doctor is a DO type dr and I don ‘t know if that makes a difference or not.

    Someone please tell me, what kind of pain do you live with daily. What types of medications do you take? I’m in tears today because I had so many things I wanted to get accomplished this weekend and it isn’t going to happen. I hurt too bad. Even my guts hurt.

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  • By ktinflorida

    HeyJude, you are justified in feeling the way you do. I am not in the kind of pain you are describing on a daily basis. I have flares, but I have more good days than bad.
    My primary doctor is a DO and he is GREAT, so the fact that he isn’t an MD isn’t the problem. From what you have said, he seems unresponsive to your needs – and that is a HUGE problem.
    How did he determine your RA is well controlled? Bloodwork? Do you have copies? What was your SED rate? I haven’t used the Vectra test, but other people on here have, so if you have that score, maybe they can help.
    What I have seen in people over 50 (which I quickly will become) is that some Rheumatologists dismiss the pain as Osteoarthritis and almost dismiss the RA. My rheumatologist has told me that a good way to tell which is which in your hand is the first joint from the finger tip is typically not bothered so much by RA. Usually the pain and joint deformity is from Osteoarthritis. The other joints in the hand are the ones more aggressively attacked by RA. This isn’t foolproof, but it may give you some insight as to what may be going on.
    As far as meds, I am on Plaquenil, injectable methotrexate and Xeljanz. I’m not a doctor, but I thought these biologics were used in conjunction with other meds like imuran or methotrexate – not by themselves. Maybe there is a specific reason in your health background that he thinks it is not advisable. Even my mom’s rheumatologist has her on Plaquenil for her arthritis. I thought that was fairly standard, but again, maybe there is a reason.
    In all honesty, I would go get a second opinion. I didn’t start getting treated and get to this point until my 3rd Rheumatologist. I had my best luck with a doctor on staff at a university hospital. I have to travel to get there and stay in a hotel, but it has made a HUGE difference in my quality of life. There is a better life out there. You don’t have to stay in pain. You are your best advocate.
    I hope you get to a place where you can find relief. I remember those days.
    KT

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  • By HeyJude

    My SED rate was 150. I use Enbrel once a week but I really feel that I have had RA for so long, undiagnosed, that much of the damage has all ready been done. I live in Alabama and am seriously thinking of looking for a doctor at the University of Alabama, Birmingham (UAB). I have several things going on at the same time and sometimes it is just so hard.

    1. Sjögren’s Syndrome – I’ve had an extremely dry mouth to the point where I’ve lost all my teeth.
    2. CREST Syndrome of which I get
    A. Reynaud’s
    B. Esophageal Motility
    C. Heart pressures are off and a lung function test showed a decrease in function.
    3. Ulcerative Colitis – by biopsy – acute PAN Ulcerative Colitis
    4. Rheumatoid Arthritis
    5. Primary Biliary Cirrhosis – and let me tell you about this, I literally suffered for years while my bile duct died and was told it was GERD. This was a pain that would literally take my breath away. Dr. Law did not listen to me. If it was caught when I first started complaining about it I wouldn’t have a dead bile duct.
    6. Fibromyalgia
    7. And I believe I have Mixed connective tissue disease.

    Can a person take prednisone all the time, do you know?

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  • By ktinflorida

    Jude, I don’t know where you are, but, yes, go to UAB. They have a FABULOUS Rheumatology department. I’m not saying there won’t be a bad apple, but I really think you should try it. That SED rate does not indicate well controlled autoimmune to me. My last one was 32.
    I don’t know. I think I would make an appointment with a gastroenterologist too because it never hurts to get a second opinion. Bring all of your records and any imaging. The Rheumatologist should be able to address the Pulmonary function thing as it relates to maybe interstitial lung disease. They would at least evaluate you and refer you to a Pulmonologist there.
    Because of your liver issues, they may not be able to put you on a lot of this medication because a majority of it gets metabolized through the liver. This would be a good question to ask your doctor. The same thing with pain meds.
    Like you, I actually have Mixed Connective Tissue Disease and not straight RA. I was testing positive for lupus for a while, but for whatever reason, that one decided to hide for now. A few years later, RA came out fast and furious and I am showing signs of Sjogren’s. I also have gastroparesis and a neurological disease.
    I hope UAB isn’t too far from where you live. Please keep us updated. It may be your doctor is doing everything they can due to the limitations of your liver, but I would want to hear that from someone else. These autoimmune diseases are too dangerous to just sit back and hope.
    Best of luck.
    KT

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  • By sonial1t6

    HeyJude, I’m sorry that you’re in so much pain. I have an inkling of what you might be undergoing. I have RA and severe OA, and a host of other major maladies, any one of which the medical insurance companies foist special health counselors on me. The OA was diagnosed when I was a kid, and the RA a few years ago, but it was clear there was something terribly wrong with my body beyond OA decades ago.

    I thought my RA was killing my hands. My MD rheumatologist told me it was my OA, not my RA. My blood tests backed her up. I wanted my hands cut off (well, actually both arms) because the pain became unbearable, and my pain meds weren’t helping. I’m on mild stuff, diclofenac sodium and OTC acetomenophin(?!) because stronger pain killers wreak havoc with my liver and other organs. My rheumatologist offered a cortisone shot. Serenity ensued. Have you considered cortisone shots already?

    If you feel your doctor doesn’t listen to you, I suggest you run (not walk) to a different doctor! Anyone with major health problems like ours must feel comfortable with our doctor, and that s/he listens to us and has our best interests in the fore. One thing I keep in mind is the drive distance. The rheumatologists in the surrounding communities are all about 40-45 minutes from my home, and longer in traffic. With our diminished health, a long drive can be daunting. This week I’m considering using Uber.

    BTW, an OD has as much medical training and licensing as an MD, and perhaps more because s/he is also trained in osteopathic medicine (muscles, bones, joints). I’m part of the UCLA health network, and while I know first and secondhand that even the finest doctors are humans and make mistakes and have bad days just like the rest of us, UCLA has overall a sterling reputation. UAB, one of the highest nationally ranked hospitals, sounds like a good option for you. Let us know how you do!

    May you feel better sooner rather than later …

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  • By HeyJude

    Ladies- I am so grateful to hear from both of you. I don’t have anyone I can talk to about all this autoimmune stuff that I have going on. My oldest sister died at age 64 because of autoimmune diseases and I certainly don’t want to die.

    I am about 80 miles from UAB. I’m definitely going to make an appointment. I have had several cortisone shots all over my body. I’m one of those that they just don’t work well on.

    I know UCLA extremely well as I am from Southern Calif.

    So I am home from work again today. I miss a lot of work because when I am in this much pain I don’t sleep well and it is so difficult to get up and ready for work. I’m seriously considering going on disability. Yes, I do have OA in my hands and wrists and in my knees. I think in my feet too. I had no idea that OA could be this painful!! I just started taking Aleve and it seems to work a little better than ibuprophine . I have to be very careful about my liver though since I have PBC.

    I would have never imagined me getting to be this ill. I was always so healthy. I’m fighting tooth and nail though. I push through the pain most of the time. There are just times where I get so discouraged and hurting so bad.

    Thanks again for listening to me and providing some great feedback.

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  • By ktinflorida

    HeyJude, I’m so sorry to hear about your sister. These autoimmune diseases are brutal. I hope some day soon they find a cure.
    I’m glad to hear you aren’t too far from UAB. I have family in Huntsville, so I considered staying with them for a while and going there myself. It still may happen if I am ever up there and end up in a bad flare. I will either go there or to Vandy in Nashville.
    I take Aleve twice a day to control my pain. My doctor told me that naproxen sodium is the best non-narcotic pain reliever for RA. I don’t know if that is true or he just set me up to believe it, but it seems to work best for me.
    With as much pain as you are having, you may seriously need to look at going on disability. I’m on disability. There comes a time in this journey that you need to give yourself permission to stop fighting losing battles and focus on the important ones. It isn’t something that I wanted or ever saw myself doing, but I got to a point with all of my medical issues that I was just unemployable. If I had been my boss, I would have had to fire me. There are all kinds of rules about how to get disability and how long you have to win your case, so don’t wait too long or you could back yourself into a corner that you can’t get out of. I had to hire an attorney because I was in my 30s when my world collapsed. It was a hard fought battle and I almost ran out of time. At the time I thought of going on disability as failure, but it has enabled me to take care of myself and focus on finding help. I don’t have to put my body through the stress of trying to work, so I am able to stay healthier and be more functional. When I try to get back on a schedule like I had when I was working, things start to fall apart again. My body just can’t take it.
    Feel better and know that you aren’t alone.
    KT

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  • By Tamara Haag Moderator

    Thanks so much for reaching out, HeyJude! I commend you for taking steps to get the information and support you need.

    Thanks also to those of you who responded, providing so much helpful information. I love that our community members are so supportive of one another.

    I will second much of what was already said. It does sound as though a second opinion is very much in order. The longer drive can be daunting, but the value of a doctor who listens to you, will continue to push for the best possible outcome, and whom you trust is immense.

    While there may very well be OA at play that won’t respond to RA drugs, there are many treatment options other than Envrel. There are about 10 biologic drugs similar to Enbrel but slightly different. These have very different effects from patient to patient. My sister also has RA, and I’ve been amazed at how differently she and I have responded to the exact same drugs. What has worked great for her has done little to nothing for me and vice versa. So it may be that a different drug is more effective for you than Enbrel. As previously mentioned in the replies, it is common to pair a biologic with a traditional DMARD (disease modifying anti-rheumatic drug). The last time my disease activity was elevated my rheumatologist had me on Orencia infusions, plaquenil, and arava, as well as etodulac. So that is just a personal example of the range of RA meds an individual may be prescribed.

    Here is an overview of all the various treatments for RA: https://rheumatoidarthritis.net/treatment/. In addition, as you mentioned disability benefits, here is a link to some articles about that: https://rheumatoidarthritis.net/?s=disability+benefits&submit=Go.

    Please know that we are here to offer information and support, so please continue reaching out any time you feel inclined. In addition, we’d love an update of how things are going, what you find out at your second opinion visit, and/or any other experiences you’d like to share.

    Wishing you all the best,
    Tamara

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