Information & encouragement to fight RA
Thank you for all that you do Kelly. Today you have reminded me how truly lucky I am to have gotten the right doctor the first time. She has answered all these questions and takes as much time with me as I need.
For those of you who are not so lucky, I’ve found that it is helpful to bring in all of my questions written down so that the doctor can deal with them quickly and efficiently. I find that with my brain fog, it sometimes takes too long for me to formulate a question otherwise.
Kate, that is amazing – I can hardly believe it. I’m pretty sure most docs I’ve met would fire a patient who tried to ask all of those questions. I wouldn’t dare – but I do chip away at them bit by bit.
Halfway through the list my 15 minute appointment would be over, he wouldn’t even have time to fire me,lol! You are right,chipping away over time may work. I would love to ask many of these questions. I’m gonna try a few out on my next appointment, I’ll let you know.
Lol, Ronda. Yeah, even with a “good” doctor, I can’t imagine any of them I’ve met subjecting themselves to more than one or two. 😕 But I think there is a middle ground and we should try to move them there along the way…
Those are all very good questions and I admit I haven’t asked most of them. I do know she will treat me to the best of her ability and knowledge, she has RA herself…ciao
Rositta, Can you ask her if you can email me her name? If she has RA, I’d like to ask her if I can interview her. kelly@ rawarrior.com
Rositta, are you from the Boston area? I’m wondering because I know there is a rheumatologist in a Boston hospital who has rheumatoid arthritis herself–and I wondered if you have her as a doctor. If you do, that would be great, and I’d like to ask you some questions by e-mail. Thanks!
What a great site you have! I am following you now (RSS-Yahoo). There is such a wealth of info here! Fortunately for me, I have a Rheumy now who ACTUALLY listens to me:) I was diagnosed with RA 17 years ago and Fibro last year. So glad I stumbled upon You!!
Let me start by saying I have worked for different docs over the years.
I would be cautious in the wording of # 10/He/She may think you are looking for drugs. I know–but it does happen.
I would word it more towards: When my pain gets severe what do you suggest I take to ease the pain, is there something that you normally prescribe?
#11 I would leave mom out of it.
#13 I wouldn’t start off seeing a doctor and ask him what you could do if you have a problem with a staff member. That could set off an alarm that you may have had trouble in the past with staff members of other doctors.
Just thought I would throw it out that.
Highly recommend booking an “extended” appointment for such questions. That will give more time for the doctor; he/she will likely be glad not to be rushed to answer your concerns.
I am starting to realize how fortunate I am to have been referred to this particular rheumatologist.
I did already ask my doctor why she got into the field. She told me that initially she chose the field because she was interested in it, but also because it would allow her to control her work hours. At least she was honest with me.
She made it clear to me when the diagnosis was first made that it needed to be treated very agressively.
With regard to pain meds, she doesn’t generally prescribe them. My familly doctor handles that (and quite well).
If I have a flare I can get into see her within a reasonable period of time. She prescribed prednisone in the event that it was a long weekend or something and I couldn’t get in to see her. *Unfortunately we’ve since found out that I have a bad reaction to oral prednisone ~ fortunately I haven’t had a flare when she hasn’t been available* She told me not to hesitate to seek treatment at the hospital. There is always a rheumy on call.
She certainly allows me to particpate in decisions about my own treatment. She never tells me ~ she asks me and mentions alternatives.
Okay ~ while having RA has changed my life drastically, I think I’ve been blessed with good doctors. It really does make a difference.
And don’t hesitate to ask your doctor those questions ~ even if you have to do it bit by bit. You are your best advocate. ( And Kelly too!)
No, I’m not in the US. I am in Toronto, Canada. There is a severe shortage of doctors here and I’m lucky to have her even though it’s hard to get appt. I’m
In a really bad flare right now. My email is on my blog if anyone wants to talk. I can’t even blog right now as I’m vert depressed with my situation. There are days when I just want to give up and there have been more of those lately…ciao
I am so sorry that you are having such a bad time now, but I ‘m glad you have a doctor who seem to be better than many we have been hearing about from others. I know these flare-up times are not easy, but please try to remember that tomorrow may be the “better” day for you. We all keep hoping that if RA patients can just “maintain,” that some super med will get discovered that will give all RA sufferers more relief than they are getting at the present time. Don’t give up….the spring and summer sunshine–even in Canada–will give you hope for better days ahead. We’ll be thinking of you!
thank you for the questions! I’m wondering, however, if anyone could help me determine what the answers should be on many of them. For example answers to #3, 5, 6, 7, 8, 10, 12, 13, 15, 17, 19. I’m not sure what I should expect the answers to be. I also asked my doctor about #19 (would she help me with disability) and she said we are trying to avoid that. And that was that. I didn’t know what else to say…What else could I have said?
Also, is it customary for doctors to just stick to treating with drugs? Are there doctors that recommend preventative care for other problems that arise from all the medication? Maybe I’m expecting too much from my doctor, or any doctor. Although I do all the research myself as to how to take care of myself, sometimes I expect my doctor to know how to avoid side effects and making recommendations other than just checking my blood work every month to see if something is not already damaged. I would really appreciate any comments.
I live in the UK where we have the truly wonderful National Health Service. The down side to this is you go where you are told to go – though we are changing to keep up with the times. My story now
I am one of those unfortunate few who is seronegetive and symptomatic. I have a wonderful GP but a really sad Rheumy the first time round. The Rheumy – I went to him (privately) as I was unable to walk any distance without back pain. I have Osteoporosis in the Lumbar Spine (C1-C2 are frozen). Was given a steroid in the left sacriolic joint at the very first meeting. Then two more over the month. This was early February. He then said that he would not diagonise me as I was seronegative and did not show any deformities in my bones. He said he was going to treat me symptomatically but was quite sure that I has some kind of inflammatory Arthritis. I have been in and out of hospital so many times, I sincerely believe they are going to charge me rent the next time I go to A&E
I am now so bad that I am on anti-depressants (work is just horrible) and have to travel about 160 miles round trip every day. I need a stick (keep falling) am highly techycardic and have swollen feet and knees the size of golf balls. Breathing is difficult and am in so much pain – ugh!
I have now been refered to another Rheumy because my GP (god bless the man) has decided that he wants a second opinion – and has told me that people who are seronegative can have RA as well. I am just so glad that I do not have to pay for my treatment, but it is very depressing when people cannot “see” your pain and think its all in your head”.
I am so very glad I got to this web site, and so very sorry for this long drawn out mail. I just feel so lonley and scared. I have 10 year old who is an absolute STAR – thank god for daughters.
Loads of blessing for all
I am also in the UK; what an idiot that first rheumatologist sounds! I am pretty sure that NICE guidelines (recommendations for NHS doctors on treatments and therapies) plus general up to date knowledge in the field indicate that treatment for RA should be starting before any bone erosions occur if at all possible and seronegativity is irrelevant.
I was diagnosed on Thursday and have no joint damage yet. I will be taking three DMARDS to try and make sure it stays that way. Best of luck with getting a second opinion. Talk to your local Patient Liaison Service if you are not happy with any decisions about your care and point them in the directon of the NICE website or the professional pages on patient.co.uk. Good luck
I hope your second try for a rheumy turns out much better! And yes indeed, thank God for daughters!
I am new to this site, but not to RA. I ewas diagnosed in 1996. I have a ?, I am on Remicade, and it is beginning to not last to my next infusion, I cannot take methotrexate. Do you know why my treatment would be doing this. I start to feel a lot of pain in about the fourth week. I am going to see a new rheumy,just felt I was not getting answers or blood as I should.
Thanks for the site.
Mail (will not be published) (required)
Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.