I'm not a RA test dummy

I was diagnosed with RA in 2013 at age 49 I had a wonderful caring doctor but he retired and now ive been to 2 doctors because I feel their not answering my questions that I feel are important to me,like why do they insist on uping my methotrexate to ten pills because he likes that number, when they said "Author's" asleep or they want to try a new drug because I said I hurt first thing in the morning or in the winter,they never give me a good reason or they act like I have no right to ask that question because I'm stupid and their the doctor but, I'm losing a lot of hair and I feel tired or my hands feel weak after I use my hands for to long but they said the xrays of my hands look good for now and I need answers before they make me their test dummy I don't want to die sooner then I should have to because of the medicine (methotrexate and prednisone) or because of my RA

11 Replies

  • Does your rheumy department have rheumy nurses as they may be best placed to help you. If you have a letter from the hospital the helpline number and times available should be on there. Many consultants see methotrexate as the gold plated treatment but if you still need prednisolone as well this possibly needs reviewing as it is not ideal to be on long term pred. Many people take a combination of drugs to control this disease and there is no easy way to work out which treatment will work the best for you. NRAS or arthritis research websites have information on drugs. Farm

  • No,just the one doctor but my last doctor said the same thing but I just didn't understand if my xrays were fine and prednisone 10mg everyday & methotrexate 6 tablets every Saturday is working then why up the methtrexate? He said he likes 10 tablets for his patients,my doctor that retired wanted me to get a break from prednisone so he was going to wing me off but he never got the chance so both of my last doctors want me to stay on them together first I was only on prednisone though,thank you for telling me about the other tests to have I'm going to insist on those tests

  • When I was diagnosed I hadn't had much contact with doctors as an adult, maybe visiting my GP once every few years. So it was all very new, and I found it hard to build a relationship with my rheumy. However, over time I've learnt how to push politely to get my questions answered. I've found that asking broad questions help - like "is there an alternative?" as well as specific things. Learning more about the disease helped too, as then could have more of a conversation with the the doctor. And my favourite question was constantly asking whether this was as good as it gets and whether there was a way to get more improvements.

    But despite that, unless you're very lucky and the first drug choice & dose suits you perfectly, we all have to be test dummies. Sadly there's no way yet to know in advance what will work best for you, so the doctor's experience and trial and error is what you're left with. But these days the lifespan of people with RA isn't much different from everyone else - make sure you have cardiovascular checks from your GP every year, keep an eye on your blood pressure, cholesterol and weight and chances are you'll be fine. Recently I was cheered up to read that people on methotrexate may have slightly lower risk of breast cancer - so it's not all bad news.

  • Thank you I'm still learning about RA my mom has it and my grandma had it too but when my grandma had it there was no treatment for her and she died at 57 so I was worried

    Thanks again!!

  • Instead of trying to find new doctors, can you try taking someone else along to your next appointment with you? I always find that doctors put a whole lot more effort into answering your questions properly when there is someone else in the room on your side. It also means you have another set of ears there to help remember what was said, or to jog your memory about things you wanted to ask.

  • Like you I was happier on 20mg but doc wanted upto 25mg n then it was damaging my liver.he promised to get me off prednisolone too but still on it 4 years down the line.I just feel they throw everything at you first of all then don't bother.have tried 3 biologics too.

    I think you need to ask if you can try somthing else instead love

  • It's awful. I don't think the doctors no the answers really. Every person is,so different. Just keep looking. I am to

  • You might find it helpful to contact the helpline at NRAS. They can put you in touch with someone who understands your problems and can help you find the right questions to ask when you go for your appointments. I take a list.

    Strangely, since I've mentioned NRAS at my appointments, my rheumatologist seems much more inclined to explain things. I don't know if it just that I can put the questions better, or if he thinks I'm going to check up on what he says!!!

  • We're definitely guinea pigs. If you did a survey of what people with RA are taking, you would get a huge variety of responses. There are drugs that work well for a lot of people - and are cheaper - so they start with those (i.e. MTX). Triple therapy (sulfasalazine, hydroxychloroquine, and methotrexate) has also been proven effective for many and it's a lot cheaper than biologics, so many doctors will try that, especially if you don't have a good drug plan. Biologics are incredibly expensive, new, and by virtue of their composition they don't have cheap generics. While they can be the most effective, they are often seen as a last resort because of the expense. In addition, which one works for you may not work for another. It's really a crap shoot.

    I don't like to be a guinea pig either and I certainly don't like a lot of the side effects of the drugs (whether actual or potential). I would say that if you are experiencing side effects from MTX that you find intolerable (he might think the hair loss not a big deal), then you should tell your doctor that you want an alternative, rather than upping the dose as he is currently recommending.

    I'm on my 3rd rheumy too, and I waited over 1 1/2 years to get to him! It's so difficult to establish a good trust-based relationship with your rheumy. The other advice of bringing someone to your appointments, etc, are good advice and worth trying before you look for rheumy #4. Good luck to you!

  • Ok,thank you I'm finding out that each of my doctors either joke a lot about RA or have a certain dosage that they aim for in their patients which I hate because I'm doing fine with the dosage I'm on but he had a number for methotrexate that he likes his patients on and I'm worried about taking more when I don't feel like I need to up my medicine yet so it scared me because I feel like if I don't take what he wants me to he won't see me anymore and I am running out of RA doctors in my area

  • yeah, it's important to feel like you are an individual human being and not get the same standard treatment that they give to everyone, regardless of individual circumstances. Maybe bringing a friend/spouse to your appointments for moral support will help, as others have suggested. I feel for you.

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