I read up on the meds and was shocked at the amount of damage they can do.And how they can make you ill.
But,I listened to my heart,and decided to go ahead and take them.
After 1 week and taking them every 3 days I started to feel very queasy,no appetite.
Well,I am unable to function when I feel like that,so stopped taking them.
I've not seen my rheumatologist yet,so she's unaware that I am refusing to take them.
She also recommended that if I tolerated the meds,I would be put onto methotrexate.
I don't think so.
My symptoms have eased considerably.
And I am certain the only reason my joints flared is because of all the stress of losing a very dear friend at Christmas,and deciding to move home in Feb and moving in April,but not completing final sale of our property until July.the worry was relentless.
I never had the pains before all of the stress,ever.
That's my theory anyway.
Dawn
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Fantasy3
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What meds were you on? Odd to take something every third day...
Anyway, that's neither here nor there! it's always a personal choice as to whether you take the drugs or not. Just explain it carefully to the rheumatologist so they don't discharge you from their list as you may need them later.
For people with early (aka mild) RA you are in the best possible position to take it as an early warning and clean up your lifestyle to try to keep it at bay. Stress (as you've discovered!) is a big trigger. So is smoking, being overweight, poor sleep, lack of exercise and a bad diet. Tackle those if relevant to you and you could be fine.
But if symptoms return please don't delay in seeking help as permanent damage can occur very, very quickly.
For me it was a matter of weeks between having a few aches and pains and niggles, and being virtually bed bound and in huge pain. So I would have taken anything to get relief! But if you can manage as you are then you have time to look at gentler approaches.
That sounds like Hydroxychloroquine. I'm on that along with methotrexate. I too had a very sudden dramatic 'start' to my RA 18 months ago - I suspect triggered by stress - and a flu jab?? Disease has 'quietened down' massively since I started the drugs(few months of steroids too at the beginning) but still have regular twinges and swelling particularly in my hands and hip.
The other thing I would say is that X Ray's of both my knees and my left hand right at the beginning of the flare revealed damage in all three - so that had happened before I'd had any significant symptoms.
I cannot remember what my bloods were,but I do think they were very high readings at the time.but as I said,the stress in my life at the time was unbelievable.
I'm hoping that I can address the problems without having to resort to drugs.
Perhaps they wouldn't have called it mild if the readings were high (?). The thing is that even if this was just a warning you need to do something since in fact your body has been telling you that everything is not ok. I would like you in fact put aside the RA diagnosis and check my thyroid function and estrogen level, gluten metabolism and so on. Find a good endo and think about dietary modifications. There are many things that can be fixed without toxic meds that in fact decreases inflammation and the progression of RA. Hope everything goes well. xxSimba
Here's hoping it was just a very stressful time for you and you're all good from here on out!
If things do turn south I think it's worth letting you know that a lot of people feel crummy for awhile on the meds but find that it generally calms way down once your body gets used to them (Not sure if that's any consolation to you and, hey ho, you may never need to revisit them!)
I know for me I initially had mild symptoms in my feet and tendon issues in my hand but managed pretty well and was dismissed by my doctors without so much as a blood test for quite a long time--until it got worse. A lot worse.
I was never overweight, never smoked and lived a pretty comfortable life as a competitive athlete so unlucky me couldn't keep my RA at bay with a healthy lifestyle but researchers are saying that it may be possible so the advise you got from HH is a good one to heed.
I would suggest getting copies of all of your test results should you need them in the future and find out if you tested positive for anti CCP.
If it does get worse you don't want to delay getting back in treatment--if you wish to go that way--but I personally wouldn't mess with it.
Knowing what I know now, I would have done everything in my power to keep it at bay while my symptoms were mild as it's much easier to handle earlier, milder symptoms than bigger ones which can take much longer to get under control.
Best
Lucy.
I agree with others that it would be wise to get as many of the facts as possible and keep a record. And also to keep your rheumatologist in the loop and on your side, there could come a time when you will need his or her goodwill.
I have some sympathy with people who have mild disease and decide not to take meds. What I would guard against is doing a google search and basing decisions on what you find on the internet. The information about inflammatory arthritis drugs is hugely alarmist. Paracetamol is a dangerous drug if used inadvisedly, yet few would be overly concerned about taking it in low doses on the advice of a doctor. I bet there's a fair bit of scary stuff about it on the 'net that fails to provide sufficient context yet we don't fret because it's a household name.
Hiya Dawn. I wonder if why you've written is because you're not sure whether you're doing the right thing or surmising that mild disease doesn't need medicating. If it's the former it's an mmmm, only your Rheumy can answer that....if it's the latter then I'm afraid more often than not it doesn't follow that what starts out as mild stays that way, unless you're very fortunate.
I'm guessing the med you were prescribed was hydroxychloroquine, this is also used as a prophylactic for malaria & very rarely can cause retinopathy though usually after many years of use, hence why the guidelines recommend a baseline & annual eye exam. It was my first med too when I was diagnosed in 2008 & whilst I had high rheumatoid factor & anti-CCP the only symptoms were in my foot joints, pain & inflammation. HCQ is more usually the first DMARD to be offered first in such instances but as has already been said stress such as you've explained, the loss of a dear friend (I'm so sorry, that must have been awful) & house moves (I'm about to do the same at the mo so can empathise) can bring on flares. This is when damage occurs so it's really when you need something until it subsides. This should in normal circumstances be your DMARD but if it's a no go then a steroid injection or short course of steroids would help, your Rheumy nurse could administer either. I'm just a bit bothered if you flare that could exacerbate things & put you in a position where coping may no longer be an option.
I understand you've dipped your toe & it's not suited but often a reduction in dose helps, even if not taking it every day. HCQ is only prescribed in doses of 200mg is 400mg, if you were prescribed the latter do you think your Rheumy or nurse would sanction a half-dose? The queasiness is easily solved if your GP prescribed you an anti-emetic, even if only taken until you adjust to it, most often common side effects wear off the longer you take it. I had nausea when I first started HCQ (400mg daily taken in 2 doses, morning & evening) but it went within weeks. I know we're all different & respond differently but when HCQ wasn't holding the disease methotrexate was my next med & I took to it fine, in fact I'm still on it 8 years later, no joint replacements despite more joint involvement so starting treatment soon after first symptoms has helped me I'm convinced. You could also of course ask your Rheumy if any of the older DMARDs could be an option for you, it can't hurt asking if you really don't want to persevere with HCQ.
Eating well no doubt helps so if you think there's room for improvement the recommended eating plan for all things arthritis is the Mediterranean way which is what I've continued to eat since we returned to the UK. It's really varied so never gets boring!
If I can just say it's not always helpful to take to the Internet when starting a new med, as Postle says it's often alarmist at best & unreliable at worst so try to keep to sites such as ours, NRAS, Arthritis Research UK or Arthritis Care, any & all UK based ones are aimed at our specific guidelines.
Am I correct, have you been in contact before? Sorry if it's not you but you seem familiar, meds the same too. I hope if you are you'll stay around, if only for support. x
It's your right to decide whether you take the meds recommended by your rheumatologist....but there is proof positive that if you don't take the Dmards....... Disease Modifyint Anti Rheumatic Drugs....in the future you may suffere irreparable joint & possibly organ damage.
Look back over posts in here from people in that position.
It might take a couple of drugs, but I'm 18 years diagnosed & have taken lots of drugs, but I feel well, have no damaged joints & I don't remember the times I felt queasy.....I just took the drugs & hoped.
I am just happy to not have pain & be able to live as normally as I do.
Do hope your rheumy finds the right medication for you soon.
I was diagnosed with RA in Aug 2013. I had a steroid jab at that time (slow release which should last 6 Wk's - lasted for 4 months and I was pain & swelling free and like an energiser bunny for most of that!! Scary!!). I refused any further mess as I felt my symptoms minimal and wanted to look at alternatives.
I stopped eating beef, low red meat consumption and cut out tomatoes, all instinctive choices and borne out by worsening symptoms if andcwhen I did indulge!! Mostly fish and steamed veg. I was told my RA had all but gone with RF levels dropping dramatically in oct 2015.
Since then I have had high levels of stress, now have high blood pressure and have gone from being marginally underweight all my life to being overweight! ( Age so everyone tells me!! 55!!)
It has just been confirmed that my RA is back, though still minimal symptoms! For now I am still refusing DMARDs. I almost succumbed to the temptation of the steroid jab again, but, to be honest, was so patronised by the nurse I spoke to to request it (as the consultant had said I could if I changed my mind) that by the time they agreed I really didn't want it!!
So I have taken this as a wake up call!! I got complacent during my remission. I will change my diet again, increase my levels of exercise whilst listening to my body for signs of the disease internally (I am currently having my liver etc checked after some signs of a possible bile problem!) I have also recently read 'lLighten Our Arthritic Darkness' by Gwynne H Davies - a fascinating read and I am teetering on the verge of his advised diet! Watch this space!!
One last point: I did take one methotrexate 10mg tab in January 2014 after succumbing to the inevitable pressure we all feel to follow the experts advice. I took it st 9pm Monday! Woke up on Tuesday, got up, made a cup of tea, sat back in bed and started crying, well sobbing actually and didn't really stop for a week. My mental reasoning was impaired and I was a mess. Never again! Though I must say that this was apparently a very rare reaction! They have offered me an alternative should I decide to take up the DMARD therapy.
My Consultants now accept my decision and will do rheumatology nurse follow-ups to monitor my condition. (Hopefully not the one I spoke to regarding the steroid jab).
I wish you well in whatever you decide is right for you!!
It's a real eye opener on here when you read everybody's experiences...
I too have been given steroids(oral) for my first flare,which worked wonders for me,it's a miracle drug.
I've been advised by my local pharmacist to enquire about being put on a very low dose for my ra.which I'm quite happy to take.i have to take them as an emergency rescue pack for my lung disease as and when I need to.
I never ever realised that ra can affect your organs as well,so it's very scary to read about the consequences if you don't take the drugs🙁
Your diet sounds ideal,I myself don't eat meat,and haven't for 2 years,but I do eat an awful lot of fish,jacket potatoes,salad,rice etc.plus I love chocolate,which I don't eat too much of,normally at the weekend I treat myself😊
My steroid treatment was an injection in my thigh - as I say, slow release. Apparently though, not to be used to often as so potent.
When I was first diagnosed, steroids were on my intended drug list.
Methotrexate, Folic Acid to counteract the folate effect of that, steroids, naproxen and a fifth drug to line the stomach to cope with the naproxen! Is it any wonder I didn't go near!?
I find reading the serious cases scary because my symptoms are so mild, also makes me feel a bit of a fraud to be honest! It is also the reason for me not wanting the drugs - I suspect the effects of those would be worse than what I am suffering now and I want to stay feeling as well as possible for as long as possible. I also believe that these things are to deal with the symptoms of the disease and I would much rather go after the cause - hence the book I mentioned! A very restrictive diet (which I haven't started yet) but if it works then it is far better than any drug!
I'm thinking along the same lines as you....yes,we know that not taking drugs can have a negative effect on our bodies,but to be honest with you,I am really scared about how many drugs I take already(due to copd),let alone more for ra.
I also feel like a bit of a fraud,as my symptoms are so mild.
But reading stories on here,you can go from mild to bed ridden in a matter of days😢That's what scares me too.
I also take naproxen,plus omeprazole to protect my stomach,plus 3 different inhalers,endless antibiotics due to a very persistent cough,and steroids when I get a flare.
I'm going to read the book you have mentioned.
It's got to help enlighten us as to what foods are good,and we can benefit from.im all for it.
Funnily enough I've had a call from my rheumatologist secretary today,got to go see her on 10th August.
She probably wants to see how I'm getting on with the drugs she put me on.im a little bit nervous about telling her.
I was diagnosed 1,5years ago with seropositive RA with high inflammation markers fatigue and brainfog. After dietary modifications the symptoms were 80% gone after 3m.Then they started to creep back. After lots of research and experimenting have finally found the medless alternative therapy that is slowly making me feel almost normal. Was able to leave pain medication about a month ago and feel my energy being normal all day with no sleep problems. Still some stiffness in the morning that I'm hoping will go away eventually. Finding the right diet and supplements has helped me but it hasn't been an easy journey and everyone is different and RA has so many different ways to affect us that no special diet like no special med suits everyone.
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