Hi, I am hoping someone out there will be able to PLEASE give me their advice. I am going CRAZY second guessing myself. My question is...should start on meds? I don’t want to take meds (who does) if it’s not ABSOLUTELY necessary.
I have a high RF factor 260, but no inflammation seen with CCP or Sed test. I have a little pain but it doesn’t really affect me day to day (VERY Thankful) but I feel aware that ‘something’ is going on in my joints. I have kinda stiff hips when I wake up, but not for too long, & I do have some tweaks of pain at certain angles in my hands, elbows, shoulders. Creaky fingers too, lately. My rheumy ‘recommends’ I go on Plaquenil as a ‘precaution’ because of my high RF factor (I can’t take methotrexate) but who wants to do that as a ‘precaution’? I believe my low inflammation blood work is a big question mark to her BUT I have the high RF.
Am I being stupid? I guess I’m hoping it won’t progress. Is it possible it’ll stay the same if I keep inflammation away with CBD oil, fish oil, no gluten, lots of excercise? If there’s anyone with ANY advice that may have been in a similar situation I would be SO grateful.
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Can't tell you what to do n hate meds myself but suppose you could always try it if rheumy recommends and come off later if no effect/help or bad side effects? Doesn't mean you can't change your mind whatever you decide. Good luck x
It is understandable not wanting too many medications but the disease is potentially serious if allowed to progress! I would be surprised if avoiding gluten made any difference. RA can be controlled relatively safely and the meds are far better than the pain and complications.
Yes, thank you hawker... that makes good sense and is simply put. The insidious progression going on unbeknownst to me is what terrifies me. BUT, that’s the thing....CAN it progress without inflammation??
No I do not see how it can. If the log-term inflammation is under control then some of the complications of RA should be unlikely. Some effects are caused by all of the inflammatory products floating around the blood-stream so reducing those is a good thing. I think by definition if there is less or even no inflammation then the disease itself is not progressing.
My inflammation levels are always normal on the blood tests and I’m seronegative. However the Vectra DA test showed my disease is very active. So I would say yes, it could be progressing without showing in the usual blood work they do. I was told treating early prevents damage and deformed joints later.
I’m exactly the same. No inflammation on blood work but my VECTRA was 41. My rheumy says, though, that she places little stock on the VECTRA results as she finds people with high VECTRA numbers can have no symptoms and people with very low single digit results have serious symptoms ....so she says they’re very unreliable. This is where I am in such flux because I don’t want to go on the meds and I CANT understand HOW I can have active disease with no inflammation or symptoms. Isn’t that what RA is all about? Inflammation?
My Vectra is 64 and besides stiffness, a little pain, and major fatigue, my liver enzyme numbers were constantly elevated. On medication they are not. My rheumatologist put enough stock in Vectra to change my treatment to a biologic. Interesting how very different the doctors are.
Yes, my rheumy chuckled when I told her that I’d done my research and found the plaquinol can cause irreversible eye damage .....she said ‘do you realize how rare that is?, one and 500,000? I said to her, ‘yeah, but what if i’m that one in 500,000??? I’m not losing my eyesight! I’d rather be in pain than blind!
When questioned about the medication risks, my doctor said that untreated inflammation caused by RA is also a big cancer risk. We all must choose what we think is best for ourselves.
Rheumatologists are the specialist lovely x I have had RA very aggressive was diagnosed 2 years ago x It took a year to get it under control !!! I don’t want to scare you in anyway but remember RA affects your heart and lungs as well x Good luck only you can decide x 😘
Have you had any hand, feet and any major joint X-rays/scans to see if any erosion is taking place as that could be the clincher for you.
Also you may want to try and track if certain things stress your RA symptoms (different foods, worry, late nights, work demands etc) so that you can keep things on an even keel there.
The meds question is a tricky one because early intervention is the key to quality of future life so you’ve got to weigh up the pros and cons regarding quality of life now on meds or not on meds and the predicted quality of life in the future if no meds or with meds.
Very interesting. Thank you, Ali. I am going to get in touch with my doctor now to ask for x-rays. That could absolutely give me the answer. I’m grateful for that. Thanks so much.😊
You are not being stupid to question and research any treatment or medication you are recommended to receive!! The medications all have many side effects that you should be completely aware of. It has been my experience that health care professionals either don’t tell you about the seriousness of some of them or it is very “down played”, like not a big deal. The decision should be yours after you have educated yourself on as many reliable sources as you can. Only you know your body and symptoms and can use how you’re feeling as a barometer to find the best treatment and care that you can. I wish you all the best!! xxx
Hi Nantobryce, yes, that is SO true. MY first rheumatologist, a young Doctor (30) immediately put me on methotrexate, even though I have no bloodwork symptoms of inflammation nor have ever had swelling or pain. I came home n googled MTX and said ‘WOAH, on that one!’ It woulda been different if I felt pain n had symptoms. I requested a second opinion n was sent to a more senior Doctor who said, “No, I think you should wait and watch if your symptoms develop or anything changes as you can never tell with RA what it’s gonna do exactly from person to person”, she also said, “MTX is not the drug for you because your liver readings are slightly elevated!”. SO, there you have it. When I saw the first doctor again she said, Who prescribed methotrexate? (After I’d pointed out liver test results) So, yes, you REALLY have to manage your own health is what I’ve learned.... that’s why I came to this forum ... there’s nothing better than people’s experience. I am really inclined to hold off as, like u say, side effects of all the drug options could cause more problems. I’ll see if things change at all but I think I will go for the x-rays which one member here recommended.
I think that’s a very good idea. RA is such a strange and complicated disease. I know you want to do everything you possibly can so it doesn’t progress (as any damage is irreversible) but is it too much? Or not enough? An X-ray of your hands and feet should be able to give you an idea of what’s going on and then you can go from there. I had to find out the hard way that we have to be our own best advocates for our healthcare decisions. What may work for one could be detrimental to another. It’s so important to remember that we are all individuals!
Hi, just a quick one. I was just like you, got diagnosed, hated it and thought, well I feel ok, I'm not taking meds!!! I went from being a Prison Officer working 13 hour days to not being able to walk to the toilet! Long story short, it took ages to find what medication works but, I still work full time, I walk at least 10 miles per day and now exercise more than I ever had. Someone on this site once told me " it's your disease, it's up to you how to treat it" I would say,do research, get advice, it's absolutely only a decision you can make but good luck with it and I'm sure you will do what's right for you. 🤞🤞🤞
Hey Woodstar...that’s what scares me. How long did it take to progress from not much of anything to not being able to walk to the toilet?? Was it gradual or did you wake up with crippling pain? Did it all come on at once? Or, was is gradual stiffness, gradual pain that kept slowly getting worse? Thanks😊
I was scared to death of the meds and I felt "ok" so thought I didn't really need them but it slowly crept up on me (around 4 months)to a point that I couldn't hide it no more and went back with my tail between my legs back to the rheumatologist and started the meds again. Since then I have seen this disease absolutely wreck my uncle, he refused meds for 20 years, he couldn't walk, get upstairs and it was responsible for his death 6 months ago as it affected his organ's. Once I got it in my head I needed the drug's, I just got on with it and for me its working ok. No one wants to take drug's, I'm 48 and took absolutely nothing until 4 years ago when I got this bloody thing but without them who knows what damage would have been done and I have 4 beautiful daughter's and I don't want to end up like my uncle so, I do what's best for me and so should you, whatever that is.👍👍🤞🤞
Plaquenil is the least nasty dmard. My rheumy wanted me to take mtx but i was not happy to take that as a first step so asked if i could start plaquenil instead. It has decreased inflammation for me and i am more mobile.
If you do decide to start medication then plaquinel seems like a sensible choice. I've been on it for the last couple of years with no noticeable side effects. My rheumy said it's a mild med, which won't improve my RA like the stronger meds, but with luck will halt or at least slow up the disease, which is the sort of thing you seem to be looking for.
Until recently, plaquinel, or hydroxychloroquine as I know it, does seem to have slowed up the progress of my RA. Unfortunately it's beginning to loose it's effect and I need to start taking something stronger....that wasn't an easy decision for me to make either!
Given you have no inflammation and very mild pain, and your rheumy didn't even order x-rays, I'd say he's not even sure you have RA. Many people have a high RF and are perfectly healthy, a positive RF is not enough to diagnose RA. Plaquenil is the mildest RA treatment there is, and it does very little on its own. I know my rheumy very well, we're friends, and she prescribes it almost to make people happy when she feels people need her to do something, but she's really just watching and waiting. And rheumies always order baseline x-rays if they suspect RA, so if your rheumy didn't, you can be reassured then he's not concerned at all. But there are lots of studies going on in trying to catch RA in the pre-RA stage, which sounds like where you might be. Equally you might never develop serious disease at all. Right now you wouldn't meet the clinical criteria for RA (based on the info you've given) so its really up to you. If things get worse, you can always start meds then. The kinds of aches and pains you're describing don't sound very typical for RA, and could be anything else. And remember most people never have extra articular manifestations...in 70% of people with RA it only ever affects their joints, so you really don't need to worry about it smouldering away and attacking your heart or lungs or something. Particularly with no inflammation markers or signs of inflammation, and just a positive RA. Did he do an anti-ccp? Its a more specific test, if he hasn't done that maybe you should request that. Sorry if this sounds blunt, its meant to be reassuring. Given that you don't want to be on meds, (its pretty amazing how many people do want meds) if I were in your shoes I would just watch and wait. Just tell your rheumy that you don't want the meds, he'd push the issue if he really thought you needed them. And if things get worse, you'll need more than plaquenil anyway.
Thank you SO MUCH, Lilyak for your incredibly detailed answer it covered so much for me. Yes, you’re right, My young rheumatologist immediately put on me on methotrexate as she believes in early and aggressive treatment but my older, second opinion rheumatologist said no, absolutely not, it may never come out in you or it may start presenting itself two months down the line....who knows, but no medications, just exercise and healthy lifestyle.... that’s what she said so it’s exactly what you’re saying ....she said we could do some x-rays, just out of curiousity BUT, based on my lack of any swelling and good joint mobility etc she didn’t feel the need right now! That’s is what she said😊
I can’t tell you how much your answer means to me so thank you very much for your time.
Lilyak, just one more thing....I forgot to mention that I had a Vectra test which indicated a high score (41), in the danger zone! which was VERY alarming to me ....that means that over the next year (Vectra’s prediction) I will have serious progress of joint damage! This result is what’s really throwing me off, mentally, as I am terrified of that. I can’t quiet get over that prediction. BUT with no swelling or inflammation I just don’t get my head around it.
My senior rheumy says they’re unreliable but why would a pharma company spend the $$$$ creating a test that doesn’t work. They wouldn’t. So....do I put stick in that??
I completely understand and echo your sentiments. I have been diagnosed as having seronegative RA, meaning my RF and CCP were both negative, but I have the symptoms and inflammation. Out of curiosity, I was tested for the gene, also negative.
My onset seemed random to me but it's all starting to make more and more sense. This is what I think....
I was exposed to a ton of toxins during a natural gas leak a few blocks away from my home in 2015. I had to be relocated, living out of a tiny hotel room for the next 6 months, one of the most stressful events in my life. Simultaneously, my mother in law became very I'll (extreme anxiety disorder) and really took a toll on my husband and I. So non stop instense stress for about 2 year straight. Also dealing with a herniated disc so couldn't really exercise like i used to, was taking a break. Then all of a sudden last summer, BAM! My onset was intense and seemingly came out of nowhere! I forgot to mention I had also developed food and scent allergies.
I truly believe that my RA condition was caused by the perfect combination of too many toxins, extreme stress, less and less exercise (not sweating out any toxins regularly, like I was before), and leaky gut.
I was an athlete before...no one in my family has a history of autoimmune disease and I was so healthy. Plus, not having a positive RF and gene really has me convinced that I am not supposed to be going through this. I think my circumstances brought it on. Even had my blood and hair extensively tested for heavy metals, etc and it was so shocking that my natural doctor told me I had to move my residence.
Ive tried all the3 of the 4 DMARDs. All incurred side effects that made me say nope, I'm not doing this. I've been on Prednisone...which is why I have been tolerating all my pain. I went from being completely crippled to being active again this year. I've tapered my pred from 40 to 4 mgs. And working my way down. I am on no other drugs. But have noticed that what I eat plays a huge role in the amount of pain, numbness, etc I feel. That's how I plan on treating myself.. at least for now since I feel like it's very manageable.
I went against 2 of my rheumies. They wanted me to move on to biologics. I decided that I'd rather stay pred then take DMARDs. But pred has been good to me and I certainly am not suggesting it as a permanent med. But that's how I felt at a time where I was crying every single hour of every day so scared of what the next treatment would bring.
There are many natural altnernatives out there that may work for you. Why not give them a fair shot, especially since it's not "that bad" right now for you. Wish I had a clue before i started all the meds, and wish I knew that there are so many options.
And here's the thing, every single person is different.
Wishing you all the best. No matter what you chose, we are all here for you!!
Just to say that I probably have RA and definetly PMR and taking Prednisone, MTX and sulphasalazine and hydroxychloriquine with no side effects. I was very dubious as I am a nurse of 50 years and know what meds can do but chuffed to be ok with these. Hope they halt RA disease.
Your rheumy has years of experience .....he presumably is advising you to take plaquenil because in his clinical opinion it will help you.
Believe me,after nearly 20 years of RA I am very grateful I took my rheumatologist's advice all those years ago. I am almost painfreecwith hardly any joint damage.
But it is your decision,& I'm surecyounwill get many opinions on this site.
I 100% wouldn't take them. I'm debating whether or not it's the best thing for me right now because the side effect's are not pleasant and they're not even working.
But RA is affecting my day to day, a lot. So I don't have much of a choice.
Oh it worked brilliantly SSC1. I was also taking Diclofenac and I had a stomach bleed. GP stopped all my meds, and I got lost in the system for a year. Got referred back to a new rheumy and was started on MTX.
How did you get on at the start with MTX? Rheumy won't put me on them until I'm not planning on having more kids. Although he is reviewing sulfa after another 8 weeks, if I'm still not responding he's going to try something else.
My bloods are also normal my ear is 5 but it's not showing a true picture either I'm seronegative but my disease is far from under control as I've started sulfazalasine again to go along with the Methetrexate and Benepali so I wouldn't always rely on the blood count
I would absolutely not take Plaquenil or other meds. They really do more harm than good. If you are doing well with just a few aches and pains I would not. I have done well for over 30 years with no rheumy drugs other than ibuprofen. I still get stiff when I first get out of bed or sit for a spell and I have occasional pains and swellings but I still can do most things I want to do and just ride them out.
Kbspots...THAT is what I needed to hear😘 Thank you....primarily that you have done well without for 30 years!! AND that you and I have exactly the same symptoms. I know that we all present RA differently BUT I think that is the way to go because if I’m not suffering right now, and I have no inflammation, it makes no sense to be taking drugs that cause horrendous side effects ...potentially bringing on other problems . IF my RA develops I’m going to have to rethink it. Its about being as healthy as I can be now...keeping inflammation down & excercise. Thank you again kb.
No responsable doctor is ging to prescribe medications you don't need so your question then should be do you trust your doctor? I'd say that as we are not medically qualified and can't interprept anything so its all simply speculation. Why not just ask your doctor about the risks of RA and think about risk v benefits in the long term.
Yes so-called responsible doctors do prescribe meds you don't need. Too many doctors get kickbacks from drug companies to prescribe their drugs. There are just too many dishonest doctors out there and I really trust none of them. We had a doctor from a prestigious university telling people they had cancer and showing people xrays that showed cancer. However because names were written so small on the xrays no one questioned it. He would show xrays of people who actually had cancer to the patients who did not and point out the cancer. He would order all the expensive chemos and these people didn't even have cancer. Eventually he was caught and sentenced to life. But this is just one case out of thousands of doctors who are dishonest.
Then we agree to differ I simply do not believe that is the case, there are always the odd bad apple in a cart but few and I mean very few and very far between. I take it you don't have a doctor then not one whose studied for at least seven years and has worked hard and honestly to get qualified?
Trouble and bad news makes headlines so you know about one in the how many in the NHS 5000+ ?
Just because a doctor has years and years of education does not mean they don't get greedy. I can honestly say I have never met a doctor that I had complete trust in and I would be foolish to blindly follow what any doctor says.
Here in the states, and I don’t know if you’re in the states, or in the UK, kickbacks from big Pharma companies are very, very common, especially in the young doctors who are very eager to try out these new drugs, and to prescribe...and in a lot of cases overprescribe. Perfect example was my young rheumy who put me on methotrexate immediately without even double checking my liver tests which indicate that I shouldn’t be going on methotrexate... it was my older rheumatologist, that I went to for second opinion that caught that. (Interestingly, My older rheumatologist also said that tests were conducted been by a group of ‘creative’ rheumatologists who put patients on drugs early, when they were pre-symptom for RA and it found, across the board, that the side effects outweighed the benefits of getting on the drugs very early.
I'm late to this, been wrapped up in my PIP renewal & have only skimmed through the replies you've received I'm afraid. That said I concur with those who've said it's your decision & only you can make it but I would say if you're still unsure you can always discuss your concerns with your Rheumy, I would think as he's given you some time to think his recommendation over you are booked in to see him to give him your decision? You see we don't know your likely prognosis save for your RF score & no inflammation & anyway we're not medical professionals remember, we can only give our thoughts from personal experience. So, my experience if it's of any consequence was of very painful feet, so quite different to your more extensive indicative symptoms, & although I did have inflammation I had no other joint involvement, but I was so pleased to have a name for something that felt like very heavy & hot bricks at the end of my legs! I had to walk on the outer edges of my feet to get anywhere, still quite painful but at least a little less so. My first DMARD was hydroxychloroquine, considered appropriate because of the low joint involvement, but I was also given a couple of NSAIDs, one to take each night the other for when the first wasn't enough, plus a short course of steroids. The relief I had was soooo appreciated, within days I could get my normal sandals on & could walk pretty much normally, well, with less of a waddle anyhow.
I'd talk things through with your Rheumy, he's the one who's examined you & given his recommendations, if you didn't have time or didn't think to at the time do ask just how precautionary he thinks the HCQ is. If you want to is there the option to defer starting it? Or, if he's recommended 200mg twice daily maybe ask if usually can start on just the one 200mg dose, see how you fare on that, meet him halfway sort of thing. Do remember though they don't prescribe unnecessarily, no point giving you something for no reason at all. In the end it's your body, whatever you put in it you've to have confidence it's for good reason. Make the right decision for you, but ask all the advice you need, possible prognosis, options the lot, & don't be rushed. x
I completely understand your concerns about taking medicine. I was Dx 2 years ago and I swore I would alter my lifestyle so that I would never experience symptoms (at that time my x-rays showed no activity).
I did make a few changes but wasn't consistent (not sure if that would have stopped activity or not) and about 2 years after my Dx, I started experiencing some activity. One toe swelled up a bit and then different toes or parts of my feet would feel bruised. When I visited my doctor she examined me and said there was swelling in about 5 places. The pain was totally manageable-I wasn't taking anything for the "pain"- and I wasn't overly tired. BUT, my doctor recommended starting on Placinol and I visit her every 2 months so she can make sure the inflammation is not getting worse or spreading.
From my understanding, Placinol can reduce inflammation but does not halt joint damage. So, theoretically it should decrease inflammation therefore reducing the opportunity for damage.
Now, I hate, hate, hate taking meds and fear that the side effects would be worse than taking the meds. Especially when I am not uncomfortable. BUT...
1. I realize that I may not be uncomfortable now but if the inflammation continues, it may really affect the quality of my life.
2. I know 2 people who have been on meds for years and years and they have not had issues with the medicines (and they take strong stuff).
3. I have made peace with the fact that my aversion to drugs may sometimes be unfounded. There are people who take crazy stuff for years for very serious conditions and go on to live healthy lives. And then, yes, there are people who have issues but I think that those stories stay in my head more than the other cases where people have not issues!
That being said, I am continuing to improve my lifestyle and hope that this medicine works and that I can eventually try going off it. My doc said that it is rare that people can go off medicine without activity occurring again but you just never know.
As a last note, my understanding is that a person can have eye damage with this med, but as long as you get your regular eye check-ups, this issue will be noted before it becomes serious and then you will stop taking that medicine.
I know how difficult this decision can be. I am thinking of you and keep in mind that you are certainly not alone.
I am not certain if I responded earlier or not but thought I should add my suggestion.
I understand your reluctance to take meds, particularly the more intense drugs , however, you must also consider the risk of not treating RA. First it is important to treat as early and as aggressively as one can. Not treating RA is likened to the same risks as stage four Lymphoma.
Having said that also keep in mind that a high RF can point to other conditions. If you are unsure I would recommend a second opinion. Otherwise , please follow your doctors advise. I have not had any success with drugs but have continued trying for three years. I have decided to discontinue but only after trying eight different drugs.
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