Since I had a fall resulting in a minor head wound have been diagnosed with RA and have been put on Methotrexate and Folic Acid tablets. I am very active for a 91 year old and as far as I can tell have no RA symptoms apart from slightly swollen hands and feet. My fortnightly blood tests are apparently all right, and I have no pain at all. Am I right i querying this diagnosis?
I should add that I do sometimes have restless feet, especially when in bed.
I am glad you have asked this, I am happy to tell you my story.
I am 69. I went to a new GP and thus a new rheumatologist as I had had polymyalgia rheumatica and was not feeling great at the time (jaw pain (dental work), general malaise, aches and pains, low grade fever (right, these could be anything, including RA??? - keeping in mind I had had shingles 6 months before). The new rheumatologist did the new blood test (approx 5 years old) and discovered I do not have elevated levels of the rhematoid factor (which what was found when I was living in England), but I do have elevated levels of the Anti-CCP (hovering around 80).
She immediately put me on methotrexate and said every doctor in the USA would do the same (this certainty got my hackles up!!!). My GP told me to get a second opinion. In the meantime, I could not think at all on that drug and felt like I was being hit by a huge truck when I took it, but I pulled myself together and read the scientific literature - I discovered that the level of Anti-CCP factor is NOT correlated with tissue damage, so I thought - OMG, if they didn't have this new test, they would not think I had RA, as I have NO SYMPTOMS, everything I presented to the doctor with could be another illness entirely, could be stress, too (I had recently moved countries, and just returned from RSA, too).
I went to the 2nd opinion doctor after about 7 weeks (in the meantime, I had stayed on methotrexate for 5 weeks until I had an auto accident, and then they threatened me with Embrel - which is another heavy hitting drug)... The second rheumatologist, who is at a well respected teaching hospital in the Boston area, said to me, and I quote "we treat people, not numbers, you have no symptoms, get off all drugs, come back in 3 months" - I did this - at the 3 month review, she said again "you have no symptoms and do not need drugs, I don't need to see you again" - I was so grateful. I feel fantastic. I told my GP, and she said - hmmmmm, that first Rheumatoligist is new in our area, and I have had other patients switch from that doctor, saying she has been too aggressive.
My own thought for myself was this - if I have no symptoms, and I am 69 and my life will not go on forever, why would I take a drug that compromises my immune system? I will be dead of something else entirely before RA gets me, so I was very glad to have a top rheumatology consultant who has been in the business for 30 years at a famous clinic tell me to get off the drugs. She even said that if I ever develop symptoms, there are other less drastic drugs she could start me on, if needs be.
Yes, recently I fell hard on my stairs (oak stair treads) hitting just below the knee and on my right hip and shoulder - well, finally it has dawned on me to go to the chiropractor to get that sorted out, even though I feared it was RA - all xrays showed my joints are perfectly fine. My own view (and who am I to say this, I ask myself, though I was raised by doctors, and do have an MBA in Health Care Mgmt, I am not a doctor): loads of people go to their graves with elevated Anti-CCP as the test was never done and the disease never became symptomatic. Just because the elevated Anti-CCP is found, does not mean the disease is active, in my view. Human beings are very new into this new test, and I do not want to be anyone's experiment.
By the way, tomorrow I am going for training to get my motorcycle license, and I work on the building sites of Habitat for Humanity - there is no way that I have symptoms of RA - forget about the blood test,there is not have enough knowledge out there for me to be willing to be the drug companies' or the doctor's experiments, in my own experience.
Hi Gryff,
I hope I can be as fit and active as you at your age, i have trouble now at 52!
I think you sound as though you are not sure if you have RA. Have you thought of getting a second opinion from a specialist rheumatologist? In general the symptoms I get are very painful swollen joints, fatigue, and the pain is particularly bad in my hands and feet making walking difficult so it fits the RA picture.
I have obvious symptoms of RA and a large family history of RA but am sero negative and anti ccp. But for me the reason I take the drugs is to prevent further deterioration in my joints and to ease the pain and swelling. But you dont seem to have many of the symptoms and you dont appear to feel that this RA is troublesome, so you need to ask them why!
Just thinking are the fortnightly blood tests to make sure the medications were not causing problems (ie not to check for inflammation) as if your body is coping with the meds they will be normal.
Also our Rheumy always does scans of your hands and feet and a DAS score and I wonder if these showed signs of RA as these tests are more usefull to my Rheumy than blood tests, he dismissed that i dont have sero psoitive RA with "well look at your DAS score and hands and feet!." As for restless feet I only know its more common as you get older and tends to be worse in times of stress or tiredness, is that what you find?
But I think you have to be willing partner with the specialist in your own care, and ask more questions about your diagnosis. You could ring the Doctor and ask for another visit to talk about it more or the Rheumy nurses generally have a helpline which is usually good. NRAS also have a brilliant helpline and could give you support and advice. So good luck.
And I wish my mum would use the internet!
Axx
Hi Gryff - if I had made it to a healthy 91 and had no symptoms of RA beyond mildly swollen hands then I wouldn't worry too much about RA but I certainly wouldn't want to take Methotrexate or any other immunosuppressant drugs.
It's only the fear of a long-ish future (I'm 49) that keeps me on them to be honest - and also because I'm an artist and RA is first and foremost a disease that affects the hands. MTX is quite a powerful and potentially toxic drug and I would probably tell my GP or rheumatologist that they should keep it for the young and leave me to spring about some more thank you very much. If it starts to really hurt then it does work and it might be worth compromising your immune system for but there are other less aggressive medications such as Hydroxichloraquine and Sulphasalazine to be tried in that event. Tilda x
Hi Gryff - I am also amazed that, as well as being physically active at 91yrs, you are also obviously very mentally active too!! My father is 89 and similarly so, still driving, using the computer and even gentle jogging up to the paper shop to get his Sunday paper!! (he has restless feet at night too, but doesn't know what causes it) I admire you both so much, you're an inspiration and I hope your relative good health continues for years to come!
Unless you start getting lots of pain, I can't see why you've been put on MTX, as Tilda is right that the toxic effects of the drugs could cause more problems than you experience without them!
Trish x
My sincere thanks to all the lovely ladies who have responded in such depth and with such enthusiasm to my query. My expectations have been massively exceeded. Thank you all.
Te general consensus seems to be "no pain - no drugs" - I don't see my consultant for six months but my GP will see me in his surgery in two weeks, so I shall take up the question with him.
I cannot tell you how grateful I am for your advice -I could have gone on swallowing 6 MTX every Sunday, and a 2.5mg Folic Acid tablet every other day, keeping my concerns to myself, if I hadn't found the RA blog.
I've begun to itch in various places, and from what I read this as an effect of MTX.
I'm pleased to learn that there are other octo- and perhaps nono-genarians "pressing the buttons, but maybe Allanah's better off with a mother who doesn't. My better half is always on to me about the length of time I spend in this room with the computer.
Thank you all once more. Mind how you go!
Dear Gryff, You certainly are an inspiration! I am only 20 years younger than you, I find you so very articulate, that is a beautiful mind you have! Can you tell us, did you have a career, or profession, how did you keep your mind so strong and active?
We would love to have some advice in that regard from you. God Bless! Loret xx
Hi Loret. I am embarrassed! Nothing special about me - guess I'm just lucky. I was a qualified standards engineer but was transformed in my later work years into a personnel and finance manager as well. I have always been an avid reader. especially historical stuff and since retirement took an active part in the village activities where I live. No more though - I gave it up five years ago, and am now a carer for my invalid wife.
I'm not proud - as I say, just lucky. I think my mother bequeathed me my longevity and good health and strength genes.
Mind how you go Gryff
Hi Gryff
This isn't an easy condition to diagnose, so perhaps you could ask your rheumatologist for more information on why they diagnosed RA/what makes them think that this is the condition you have.
If you're not satisfied with the answer, then getting a second opinion is a valid option, and you could do this by asking your GP to refer you to another consultant and see what they think.
As others have said, you are welcome to speak to our helpline about this in more detail if you would like. Our number is 0800 298 7650 and we are available Mon-Fri 9.30-4.30.
Kind regards
Victoria
(NRAS Helpline)
Thanks Victoria. I shall be seeing my consultant and specialist nurse about this as soon as I can get an appointment after "her indoors" comes out of hospital. Right now, I am so busy with her stand-in. Oooh. gorgeousred hair . Gotta close down folks. .
Hi Gryff,
I had restless legs at night, and cramps. I decided to stop all supplements, including vitamins and minerals, and hey presto my own body stopped the restless legs and cramps.
Best wishes,
ADB
PS. I passed the motorcycle driving test, I am 69, I was the only woman on the course, and came in 2nd!!! Of course it was in the USA and I only got to 3rd gear running around cones in the parking lot for 10 hours of training. Now I know my limits and will do more riding in parking lots and then get a permit in the UK and more riding in parking lots before I take off on my own.
Thanks AliceDianaB I am only on prescribed meds. so its not easy to discontinue. Admire the motorcycling - I'm scared of two wheels. Rode pillion on one years ago and three days later the driver was killed on his machine.
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