Information & encouragement to fight RA
I’ve seen 3 rheumy’s My current one is the one who diagnosed me. The 1st one examined me and said i looked fine, no need for blood tests or anything, the 2nd one told me to see a neuro. Which I’ve seen 4 because they thought i had MS or Myasthenia gravis. I don’t really “love” the one i have right now. But she did give me a diagnosis. She did not really examine me though which i found strange. She diagnosed me based on my labs, my symptoms and my xrays. I would’ve thought they should examine you.
They certainly should Meghan. It’s the only way to document your disease progress and learn about what interventions might help you. Thanks for sharing your experiences.
I wonder why there are such discrepancies in the recommended fundamentals of care vs. delivery of care? Having this knowledge is helpful in knowing if we as patients are getting the care we deserve; however, I’m afraid most physicians in this era of healthcare managed by insurance companies can’t measure up to these basic standards and that is sad.
Thank you for the excellent links. The Mayo Clinic Current Understanding…has me thinking about my next conversation with my Dr next week. My RA is quite mild compared to what i read here. I’m hitting the 6 month point on MTX. No remission, mild improvement but more joints are getting involved. Since I am not in unbearable pain I probably would have accepted this as status quo. Now I am thinking it is still smart to start the conversation on biologics based on the monotherapy vs dual remission and joint involvement data. Might not be the right course of action, but it is the right conversation to have.
It would have taken me weeks to ferret out all the data. Thank you so much for providing this valuable resource. I’ll be making a contribution to your outstanding site. You have definitely made a difference in my life.
Thank you for this interesting article Kelly. I currently feel that I am not receiving any fundamental care as after being told that my nucular bone scan came back ” unremarkable” and that my lung function test was ” satisfactory” To whom I would like to know! I was taken off mtx after 7 mths after no improvement – I feel that as I “failed” with mtx I am being overlooked ( being treated by N.H.S in the U.K). My local Dr. is to treat my symptoms for the time being. I have an appointment to see the R.A nurse at the end of September – but that feels so long away I am not sure some days if I will make it to the end of the day what with joint pain, wrists, fingers, ankles, toes, knees and rib pain is so bad I don’t sleep well and it effects my lungs and breathing, then there is the “fever” really cold and shivering followed by really hot sweats. Oh, and let’s not forget the extreme tiredness – which has ruined many a day. I am sorry to have ranted so – but family and friends can only take so much of it! I know they say they understand but how can anyone unless they are going through it? Thank you so much for this site – I really don’t feel I’d could cope with R.A.D without the love and sopport of you and all the other Warriors
I’m sorry Jacqui. I’m glad we can love & support each other but I’m sorry your meds have failed you. You didn’t fail of course..
Unremarkable tests are sometimes different with a 2nd opinion – I’m not sure if you’re able to have that. It was a shock to me as a patient to learn how often things are different if re-examined. Of course that means asking the patient is the most reliable method!
September is too long to wait. I’mm surprised they took you off mtx instead of just raised the dose or added an additional med with it – that’s unusual unless there was a bad liver or lung reaction. MANY patients find mtx inadequate – they know this – they still have RA & need to be treated.
Your treatment doesn’t fit with the treatment required by the UK’s NICE standards – I don’t know how it works over there but I think you ought to raise a fuss with your GP. RA has a required protocol under their standards that they are to follow that requires that you get a certain level of care. It doesn’t make sense to withdraw MTX without offering another DMARD or a biologic.
Thanks for your support and comments Leslie. I have been to see my GP today and he is going to write to my consulant. He also thinks I should not be waiting until September to be seen by anyone.I think he also agrees that I should be on some meds to slow down the progression of the R.A, so now I just have to wait and see. I am sorry to say that things do not move too fast in the UK under the N.H.S !
I think #10 is *extremely* important.
My dr. never mentioned I was eligible for a disabled parking pass. Never mentioned getting splints or surgery for 2 fingers, physical therapy for some other things, etc. For these things and more I had to research on my own and then request them, and got help once I asked. But I had to be proactive about it. I wonder how many people are missing out on helps like that?
I have a very good dr. who listens, works with me on medications, really understands the disease and its miriad symptoms. But in terms of other helps, like suggesting some of things above, he won’t think to suggest any until I explicitly ask for one of them.
I have never, repeat never had any type of scan (other than an x-ray on an extremely swollen left hand) for RA locations and am treated solely on blood work & symptoms.
I also have symptoms that have been summarily dismissed – by my rheumatologist, family m.d. and and ENT. Symptoms that were not there prior to the RA Dx and initial treatment.
Kelly and RA friends
My RA is going pretty well. No finger nor joint has demormation. So I need to prevent deformation. Do you know good way to prevent my finger (hand) change shape. Do you know good brace, gear or taping?
I was wondering if anyone has had a similar thought – with all of the microscopic parasites in sea water, what is the risk of swimming in the ocean, gulf, etc to folks with RA? I do have skin irritations and some broken skin and wonder about this whenever I think of a vacation or my love of diving, something I haven’t done in a while, but still have the passion for.
good question. fungal infections are one danger in some regions that is little known but really important. Although I do also see articles about curing immune system diseases with parasites… so who knows? Just kidding. I think you could probably still do it with caution of seeing a dr about anything that concerns you such as an open sore.
Hi everyone! I was diagnosed via blood work a year ago that I have RA. I have herniated discs and sciatica (pins/needles, numbness and occasional limping of left leg), and I see my cardiologist about 4X yearly due to mitral valve prolapse, nothing more heart related. But I do have high cholesterol/triglycerides and blood pressure which I’m being medicated for as well. He asked about my pains, I stressed it was only my back, but he felt the need to do a RA blood test which showed positive. Went to Rheumatologist who I think is great. Though she only x-rayed my shoulder once, no other x-rays were taken. Should they have been? (At least the first visit she checked me out for osteoporosis and my bones seem good right now! yay!!!) She seems to rely purely on blood work and what I tell her I feel. I was on Methotrexate for a year, it seemed to help a wee bit, but then like every weekend the past month or two, my fingers would severely hurt, couldn’t hold a dish in my hands, and the palm of my hands would swell up. (I’ve been having this stuff happening to me though since 2007 and my primary doctor tested for carpal tunnel which I didn’t have, and nothing more. Nobody thought of RA.) I say good call on my cardiologist’s behalf!! The funny thing is, over the past 6 months when I had blood tests, it seemed the Metho was working in the sense that blood-wise anyway, my reading was showing improvements! Go figure, blood says I’m getting better but the blood neglected to tell my fingers…Oh also my toes feel like they’re made of cement as well as pain, and my Rheumy upon hearing about my painful left ankle suggested Remicade. With my ankle I can turn the foot inwards, but in turning it back to normal position it gets ‘stuck’ and I feel like if I force it, I’ll break it! Sighhhh. Last week I started Remicade, next Thursday I go for my 2nd IV infusion. I’m praying this works. I’m worried about the bad side effects I’ve read about it, and also being a smoker and the chance of lung cancer added atop to my smoking via Remicade doesn’t do my anxiety any better, LOL.
I’m so glad there is a website such as this and I will make frequent visits to it to read up on items that may help me.
Oh by the way, although it is too early for anything, I do believe maybe the Remicade has sort of helped my sciatica a little bit, well that, and the recent trips to go bowling I’ve done with my son. I know exercise helps and I’m not really one for it, but perhaps bowling, with the bending of the body and throwing the ball, is good starting exercise for me. I hope so, this way I can discontinue the roxicodone and muscle relaxant, and lumbar epidural shots I’ve been having for almost a year for my back pain by my pain mgmt. neurologist.
I wish everyone luck and to gain better insights besides what I get from my Rheumy. Oh by the way, NO DOCTOR has ever ever told me it’s in my head, if they did that would be the last they saw of me!
I think I get pretty good care from my rheumatologist but no one has said a thing to me about increased cardiac risk, and my family doctor was unconcerned about my palipatations – but maybe I sould be more concerned. MTX is also not doing the job for me – helping but not enough – and my rheumy has suggested a biologic but didn’t suggest the vaccinations listed in the recommendations, though I have had a TB test. Wondering if I should request updated vaccinations before I go on a biologic to try and protect myself. Shingles is one you can’t get afterwards but would be good to have before.
Hello, I have been diagnosed with “severe” (is there any other kind!?) RA for 12 years now, I am currently 62. The disease caused me to take an early retirement from a very stressful, physical job, service manager for a major luxory car company.
Over the years, I have had several rheumatologists, none of them would give me pain medication, acting as if I was a “crybaby” when I complained. I have had some heart issues, a very high heart rate, and I Finally found a cardiologist who took into consideration that my RA was a major factor. After echocardiograms, wearing a holter heart monitor, he addressed inflamation and disease activity. Unfortunately my current rheumatologist doesn’t seem to think that a cardiologist should have a say in my RA condition or meds.
I DO NOT understand why these specialists feel so intimidated if another Dr in a different specialty could possibly add to or want to work together and treat me as ONE peron…..not two or three people, one with RA, one with Heart issues, and one with Hep C … geesh. What if I had told them when they brought their cars in that I couldn’t repair more than one system, I guarantee the Drs. who were My customers would have been the first ones to scream complaints!
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