Recently I took a blood test which came back with an RA factor of 110. If I'm not willing to take any perscription medication, is it worth going to a rheumatologist? I don't feel I have RA since I have no symptoms currently...no fatigue, no bilateral swelling, only painful joint is elbow which I broke falling off a horse, etc. On top of that I never get sick and don't want to risk messing up my immune system. I'm wishing I'd refused the test now. 20 years ago I had painful swollen fingers and was referred to a rheumatologist but cancelled the appointment because I didn't see a point. They are fine now that I have an office job.I wish now I hadn't taken the test, but kind of felt pressured. I put off doing the lab work but was constantly reminded. So is it worth seeing a rheumatologist if I'm not willing to do any treatment?
BTW I'm in the US so money is also a factor.
Written by
PonyGirl13
To view profiles and participate in discussions please or .
Yes As RA is systematic so can affect blood, lungs the list goes on. I’ve had RA related but unprovoked clots and it’s not fun. So the choice is yours you might be lucky and it never develops into a debilitating disease or you might leave it to the stage your begging for medications as your in pain with swollen joints and by then no drug is going to repair the damage. I think you should perhaps be asking what are the risks of no medication and only a medical professional can give you that advice knowing all the facts. I’m sorry if that sounds hard and obviously it’s up to you but I’d not risk my health without getting proper advice.
it’s funny but one of the reasons we returned from living in the US was my concerns regarding healthcare and costs and 18months on our return I was diagnosed with RA. My hubby who is American said this would have knocked us for 6 if we still lived there ie costs!
Since you have had the tests and now worried why not get the view of the consultant and discuss your views and be packed with information and then make a decision? If you keep worrying it’s best to surely face it head on and talk it out.
I guess I'm the type who would experience so much stress and anxiety for side effects of medication, that it would be unhealthy for me mentally so am better off not knowing. That's why I wish I had never done the blood test.
All medications can have side effects and paracetamol kills some every year. After all you may not get any side effects, try to be objective if 10% get side effects then 90% don’t. I’m afraid putting your head in the sand is really unhealthy as fear breeds in a vacuum, the more you fear something the bigger the fear gets. I’d urge you to be positive the consultant may say it’s a watching brief or offer you a medication either way you’ll have the knowledge to go forward but don’t risk your health because of unfounded fears.
Yes. After reading some of the side effects of ibuprofen, I'm trying not to take that either unless my elbow is bad at night. I'll talk to my DO on Tuesday to see how he sees the results, as most everything else was in the good category. Even glucose that has been on the border of high in the past. I'm wondering if it is a response of coming off of long term stress?
Did you know for most painkilllers to work they have to taken regularly not as and when. I never knew that until a broken leg and ankle took me to A&E. I think just have an open mind, you can say no but listen to the risks. I’m totally forbidden ibuprofen, so I don’t know but its perspective. If you don’t see anyone you’ll probably worry more, knowledge is your ally so as others have said read from reputable source like the NHS or NRAS website and at the least it’ll help you to work out the questions you might want to ask. I can only say look at UK websites as I don’t know any American ones and things might be different there but RA is RA be you American, French, Australian or British etc. I hope you get some answers tomorrow.
Thank you. They don't recommend taking OTCs for more than 10 days to avoid issues, but that could just be them covering their hind ends. I used to take aspirin for pain, but it gave me ringing in the ears after a while. My biggest concern is not trusting Doctors in the US not to be promoting certain drugs because of pharmaceutical reps. My mother was on synthroid for thyroid which worked well, but they changed it to one that now shows that it diminishes bone density. About a year later she fell and broke her hip or her hip broke and she fell---no one knows for sure. She was 95 so won't know for certain, but there is now a warning for it's use.
My DO is really nice, so I don't think he would pressure me, but I've heard some bad things about some of the specialists in town.
well, this is an interesting thread. I did not know you could test positive for rheumatoid factor and not have RA. It is hard to diagnose these diseases and if you don’t think you have it then you probably won’t get much out of your appointment. I am curious as to why you were even tested. Are you perhaps minimizing symptoms in your post because you don’t want to admit you might have it. I don’t mean that as a criticism. I was diagnosed with fibromyalgia first and later inflammatory arthritis and I did not want to believe I had it at all. Not one bit. All the best. Take care.❤️
It’s odd as I was told at the beginning so many years ago that a lot of people test positive but never get the diseases they are positive for, and others develop them but test negative. And when I had the AKI and had a lot of tests they told me a lot of people die at an advanced age but only have one kidney. It appears we humans are odd ! my kidneys were normal but got damaged but they said I had pANCA so antibodies they can see. Fascinating how one doctor said we just don’t know with RA and that’s why it’s hard to treat sometimes. I was lucky in nearly 30 years all the 4 medications worked, one stopped as side effects, one due to AKI but it didn’t cause it and AZA works well now with Etanercept as I’ve no damage to my joints and life is normal apart from the CKD I think not only was I lucky and treated early but early diagnosis was the key enabling treatment.
My ortho noticed some stiffness in my wrists but I put it down to carpel tunnel since I work an office job. I just turned sixty so I do have some injuries from a misspent youth that bother me from time to time, but nothing I can't exercise through. None of my joint stiffness is bilateral except for wrists and they don't hurt or ache.
Your choice, of course, but as mentioned above, RA as a systemic disease can cause damage to kidneys, heart, etc, lead to blood clots and other serious issues. I ignored my RA (which I had from childhood) for more than 20 years because I didn’t want risky treatments, plus I was also dealing with severe hip dysplasia and just couldn’t take any more medical interventions. My joints, though painful, are not particularly damaged, which is just random good luck. Have not been as lucky with RA related damage to kidneys and heart, plus blood clots.
I think you should read up on RA…NRAS has some excellent literature RA is not just a little finger ache. Can you speak speak to someone you know who hasRA? They will explain how by not taking DMARDS…Disease Modifying Anti Rheumatic Drugs …..you are chancing having a very painful disease that gets worse & damaged joints don’t get better or less painful.
Hi many years ago I had been part of a group donating blood for testing for someone doing a study, he told me I had positive rheumatoid factor, I was still under 30. I asked him if I would develop rheumatoid, he said you might, you might not! Fast forward 20 years with no issues my hands started swelling I couldn't fasten my bra, brush my hair I was disabled almost unable to do anything for myself almost. It didn't last but did happen again. I seen the wee old ladies in rheumatology bent over unable to care for themselves and the pain they had due to joint destruction, I wouldn't allow that for me especially now the drugs stop the halt of disease. Yes it can take time to find the right one and yes they can fail but so worth not being able to self care. I had a nurse specialist who told me don't leave this till your in agony because the destruction of your joints is not repairable I've seen that so know it's true but it's up to you!
But least now you've had the test you know you have a red flag for RA, so if you do develop symptoms you can get the treatment you might need. There are often other associated AI diseases too, so you can be aware of these too.
If you have RA nobody knows how it will progress, but the outcome tends to be more favourable the earlier you start treatment. Nobody wants to take drugs but there might be a time when you need them in order to function.
For the time being, try to live as well as you can, reducing stress, and eating a healthy mediterranean diet with lots of fresh veg and little sugar. This won't reverse your +ve RF factor but it will give your body a good start.
If the time comes that you develop symptoms of RA please don't let your reluctance to take medication preclude seeing a Dr.
Be informed. Only then can you make the right choice for you 🙂
Thank you. The last few years have been rough and stressful for me. I've gained weight, quit exercising, and ate a horrible diet (gummy bears and beef jerky for dinner). My mother who had dementia recently passed, and I know it sounds terrible, but I now feel better than I have in years. I guess I'm afraid if I see rheumatologist, even to establish a relationship, they'll put pressure on me to take medication and not try diet/exercise first.
That sounds pretty tough. I understand your fear, and there’s no reason you can’t try diet and gentle exercise anyway. It will stand you in good stead, however the disease progresses. Good luck with it all X
Thank you. I just need to try to be more gentle with my exercise. I tend to go all out. (Used to be a high impact aerobic instructor in the 80s)The other day I could barely walk due to all the squats ang lunges I did. Absolutely hate Yoga or anything slow.
Do you feel unwell? Do you have night sweats? Have a deep ache? Joint swelling. Stiffness in the morning? Unexplained fatigue. Do you feel lousy? It sounds like you are feeling well except for your elbow so maybe just see how you are over time. Your finger episode resolved itself which is amazing. I wonder what that was. Little flare that went dorment? Jeez I feel your conflict. Getting a diagnosis that you’ll trust will be tricky if you feel well and are working and not having lots of discomfort or generalized unwellness. Now that your Mom is gone you can focus on you and see if you can figure things out abit more before you invest in medical attention you don’t even feel you need. Oh, I wasn’t sure what ortho is and why they were examining your wrists.
There are false positives, where someone has a positive blood test but doesn't have the disease. It happens with many tests. However, if someone has symptoms, and has a positive test, then it is more likely that they have the disease.
And with the RA test there is some evidence that people may get symptoms in the future even if they don't have them now, but that isn't everyone. And when you think about it, we may have no idea how many people are RA positive who never develop rheumatoid arthritis, because most people won't have the blood tests if they haven't got symptoms.
So if you haven't got any symptoms at the moment, this could be a false positive, but if you start getting symptoms they it is likely to be a true positive.
Clinicians should really explain this to patients when giving test results. The more tests we can give people the more false positives there are, and that costs money either for the health system or the patient. There is a lot of over diagnosis and treatment going on.
It doesn't make it any easier to make these decisions though. You will have to balance the benefits and costs of not following this up.
Spot on. Many tests doctors do are unnecessary and create anxiety in patients, and unnecessary referrals to see a specialist. This is a consequence of poor teaching in medical schools about positive predictive value of tests, doctors practicing "defensive medicine", and patients "demanding" to have tests because their "Great Aunt Mildred had lupus, and now i'm feeling tired, so i need to test for lupus as well....."
I've tried Turmeric for arthritis in elbow but don't find it makes much difference . Maybe it doesn't work on osteo. I've been talking a microdose THC gummy to help me sleep, which seems work well. My brain not pain can keep me up at night. I also use CBD drops if I'm feeling stressed in the morning.
if it was a measure of level of inflammation, for example CRP, it can be caused by other factors. My nurse was really shocked when mine went up to 67 from usual low twenties and it turned out that I had had when the blood was taken. This was the reason for the high reading.
You can try and go 'the natural way', PonyGirl: Turmeric (Kurkuma) .. helps many people with RA .. it's wurth to check up on. This is just one link: healthline.com/health/rheum...
I would say my GP and consultant both said if I ate a tonne a week of turmeric they would not see it halting this type of disease. It might help some with joints but won’t stop the disease if in full flare etc.
Medical . journal says
However, people with symptoms of RA should always see a doctor for evaluation and treatment.
Although turmeric may help alleviate symptoms of arthritis, there is not enough evidence to suggest that it can replace standard medical treatment. Early diagnosis and treatment of RA are important to reduce or prevent irreversible joint damage.
I have, my body hates the medication but only thing that will stop progression, however I tried for the first year turmeric and did nothing for me. But I understand the need to try anything to make you feel better too.
Please stop advocating Tumeric. I have had RA for at least 10 years and been on nearly all the treatments and injections and Infusions . Not 1 nurse or Specialist has said try Tumeric In fact my team said when I started injections for ABATACEPT I was told to check ingredients for Tumeric and stay away from all things TUMERIC.
If you have no symptoms of RA-What made your doctor order the test ? Around 5-10 % of the population have a positive rheumatoid factor, but only 1% of the population have RA, so there's a high chance you don't have RA at all, especially if you have no joint pain / swelling. Just wondered....
My husband's cousin, Bonnie, died from complications from RA. For some reason she could not do the biologics. She was a wonderful person. As many others have said, RA just does not affect joints, it is systemic. I have Giant Cell Arteritis, and Polymyalgia Rheumatica. I have been on prednisone for 20 years. At one time I tested positive for RA, then later tested negative. It is my experience that this auto-immune illness can bounce around. I ended up testing positive then negative for quite a few illnesses. I had MAS , Multipe auto-immune Syndrome, then it settled into GCA, which was shown with a biopsy. Confirmed at Mayo Clinic.
There are a lot of ways to get help with the money part in the US. I now have Multiple Myeloma. Yea, I'm a mess. I ended up having 3 bad chromosomes that I was born with Fortunately, I have very good health insurance. I had a stem cell transplant last year resulting in an expensive year. I know it is scary, but there are a lot of assistance programs. Please check into it. Sorry if this frightens you, but RA is not to be ignored. I was put on Actemra, a biologic, for the GCA. It was the only thing that got my SED rate down to normal. I can't do Actemra now because I am on chemo for cancer, but the biologic gave me back my life. I am on a biologic for the cancer. It is called Darzalex. Prior to Darzalex the prognosis was poor for Myeloma, now it has a much longer life expectancy. Do not let the money part scare you away. Do not let the fear of cancer scare you away from treatment. I was always concerned Actemra might cause cancer. Ended up my chromosomes caused my cancer. I did not go blind with GCA as I might have, nor did I have a stroke. If you test positive for RA have them keep looking and keep an eye on it. Have you taken any prednisone? What is your SED rate, a blood test for inflammation? What is your CRP? Both are tests indicating inflammation. A trial of prednisone might prove worthwhile. If you immediately feel better on a low dose of pred, then you know you are dealing with an inflammatory process.
Thank you. Currently, I don't have anything that is painful except for an elbow that I broke falling of a horse when young. My opposite shoulder sometimes bothers me because of the twisting I do to compensate so don't know if I'd notice much difference.
Probably not if you don't want to take drugs. In the UK treatment is drug based. I no longer see one as I gave up on drug treatment after trying many and experienced awful side effects. There was nothing else on offer so gave up my place to someone else. I can still get an intramuscular steroid shot from my GP. I had one last week. It was 3yrs since my last one.
Treatment is up to you. In my case I tried many conventional drugs unsuccessfully. Drugs work well for some people, but not others. The decision us yours to make.
I can understand your hesitancy, sometimes it just feels like one doctor too many. And I also hate the idea of adding more drugs to my life. But when my all my fingers swelled up and were painful, I went to my GP and the RA tests came back positive. By the time I was able to get in to see a rheumatologist, I’d had some mild, intermittent pain. But one single bout of astonishing pain in my wrist convinced me that I wanted meds. That was 20 years ago. I’ve been in biological since then, nothing that I can identify as side effects at all, except free from pain.
Just my experience. And obviously you need to make your own decisions. But I’d advise making the rheumatology appt, tell the dr you’d rather wait on the meds, but that way you have an established connection with a rheumatologist and can check back in with the Dr once a year.
If you can carry on living a normal life without much pain or treatment do. If the time comes that this changes then reconsider your decision. Good luck. 👍
I think I should point out, that drug free does not mean no risks ahead. Uncontrolled inflammation has its own risks, and can cause damage to organs. I went 25yrs undiagnosed with ankylosing spondylitis, and in that time my rib cage fused, which had resulted in lung complications. Uncontrolled inflammation also increases your risk of cancer. So I think if I were you I’d see a rheumatologist and get their opinion, on whether you have inflammation lurking, that needs controlling. If I’d been offered medication sooner, it wouldn’t have progressed as badly as it has, unfortunately once damage occurs it can’t be undone. Only you can decide if that’s a risk worth taking.
I was undiagnosed for years (with a high RA factor like you have). I knew what I had but no one else seemed to know I did! I took all manner of supplements etc until one day they DID actually say I had RA which I'd known all along. Even then I continued with the supplements, thinking that all would be fine, until one day, out of the blue, during covid lockdown here in the UK whammmm I woke up in such agony I couldn't move. It took several months due to difficulties seeing anyone because of lockdown issues with the NHS & a zillion phone calls to get any proper help. Eventually, I got there in the end & was prescribed meds taking two DMARDs. But the damage was done. Now, I struggle. A cautionary tale, backed up by other comments on here, that it's always best to be safe than sorry. Go see that expert. Discuss. Read the literature. And make that decision. And good luck. x J x
Update: Saw my DO (Dr. of Osteopathic) today for my guided injection and he went over labs. The only bad marker was the RF Factor. There was another high market, but that off ser by something else which was really good.He's referring me to a rheumatologist in a town 90 miles north of me. The local rheumatologists are so over burdened right now they wouldn't see me because I don't have "active symptoms". At the very least I'll be a patient of record if (hopefully not when) symptoms arise if they decide just to keep an eye on things.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Just want to know what it is!
Feeling pressured to start taking methotrexate. Is it worth it? How have others found it?
New to RA
PIP appointment with Atos, is there any point in going?
