newly diagnosed and really started on fingers and hands, now have upper arm pain... i have been eating "healthier" and "cleaner"..
still have no courage to take Prednisolone and Hydroxy as all the side effects i have seen and heard.. can I wait for the fare to calm down itself ?
once on drug, does it mean for life ?
So confused.
Please help
Hi Bamboo.....Joints can already be damaged prior to diagnosis & sadly the damage is likely to continue unless you take a Disease Modifying Anti Rheumatic Drug like Hydroxy.
I’m no fan of Prednisolone ....although it does have it’s place controlling the inflammation until the Dmards kick in....but most people try to get off it as soon as possible.
You must remember all the people on here who write describing what terrible side-effects they have are in the minority , & most of them are likely to have other health conditions that contribute to their side effects.
The majority of us progress through the various grades of treatment with just the odd hiccup.
After 20+ years , I am well controlled with the odd hiccup...but I don’t rush to this forum saying how well I’m doing...neither do most who are coping well.
As you obviously know - without taking any RA drugs the progression of your disease is unlikely to stop.
It is likely you will need to take some sort of drug for life...but surely that is preferable to constant pain, joint damage & possible joint surgeries?
Your flare could well settle on it’s own, but do you talk to your rheumatology nurse, who will explain just because you haven’t got any pain doesn’t mean the rheumatoid arthritis isn’t progressing in your joints.
So start those meds & tell us how much better you feel.... and start to believe not everybody has horrible side-effects.
It is very scary being diagnosed, and being faced with all these drugs - especially if like most of us you were generally healthy before. So you are not alone in being worried and confused. We’ve all been there!
Everyone is affected a little bit differently, and we can’t tell how aggressive yours is. But basically it is a progressive disease, so the current recommendations are to treat it strongly from the start. So do listen to your doctors. I’m presuming that they’ve only given you a short course of prednisone anyway.
Generally if you explain to your doctor that you are worried about long term affects they will be happy that once you reach a stable remission you can try to taper off the drugs. What is not a good idea is to have the prescription and not do anything with it without telling the doctor and explaining why. People who have done that find that they have been discharged from the rheumatologists’ list, and then can’t get an appointment when they really need one. Always better to keep the doctor on your side.
Improving your lifestyle can only help, if only for your general health. And for a few lucky people who stick rigidly to what they have found works for them have been able to stay in remission without drugs. But it’s quite rare it seems. So best thing to me is to do things in parallel - follow your doctors advice and also work on self-help measures. And then review where you are in 6 month or a year’s time.
(As a cautionary tale, I was stable and started to taper off drugs. Within 3 weeks I had a permanently damaged toe. My disease is pretty aggressive tho’.)
I think it’s very individual.Some have none. And some just very little and say , 10% have fast progression of the disease. I had progression that progression relatively slowly with out Meds. The more I understood my illness it slowed down. Now it’s no lolonger advancing, still without meds.
How do you know your disease is not advancing without drugs? Do you mean by that you think you are cured?
You don’t need to be in pain for your joints to be degenerating.
I have taken RA drugs for many years & have needed no joint surgery.
But just because I am not in pain...I wouldn’t dream of stopping the drugs.... Although I would be thrilled to be the first person in the world to be cured of RA.
So agree with you AC. Damage can indeed be silent, only imaging & maybe bloods can reveal what's going on before it's too late & damage is done. I'll be right behind you too, wouldn’t that be something, to be cured?! 🥳
You can have second place nmh & the Silver🥈after my Gold 🏅 if we ever make that cure!
But I am not holding my breath!
Don’t leave me out, 3rd please😂
Well.. we can all dream!
I have less of the typical symptoms of RA.My erosion has decreased.My pain meds are decreasing, no more brain fog or fatigue My overall feeling for a Agoodlife life has increased.I see a process going in the right direction.
How does erosion decrease Agoodlife? Surely once it’s there then it’s there for good, mine has never decreased 😕
Sorry the process of new erosion decreases. Was what I mean. Didn’t mean the old ones went anywhere
Neither has mine. All my toes have been getting steadily worse and are now completely deformed. I can't even get a comfy pair of slippers, let alone shoes and socks feel too tight - even a pair of my husbands which are size 9 to my size 6!
Hiya bambooinlondon. Well, all I can advise is Rheumy's don't prescribe DMARDs without good reason so yours will be expecting you to take them, as well as looking out for your blood test results to see how you're responding. You should be having them every fortnight I would think? This will include your inflammation (ESR & CRP) is reducing particularly but also if you're showing any signs of problems with you taking them.
Damage can happen before we're diagnosed, erosions may have been mentioned? It all depends on how advanced it was considered at diagnosis or how quickly you reacted in seeing your GP. If it was soon after you were first symptomatic & not too long before you saw a Rheumy for diagnosis as well as how soon you were able to start meds to start controlling the disease, they can all be telling. As it is you're not doing anything to help yourself. Some side effects are easy to live with, others not so but think positively, you may not have any but it's a bit silly to not take anything when you're experiencing something that can be helped don't you think? I can't say ignore everything you've read about HCQ & pred because most of it will be good, you’ve just focussed on the bad. Forums aren’t the best places to look for positive stories because most of the people using them are experiencing difficulties & looking for answers not living life. Neither are unreputable sites so keep to ones such as NRAS or Versus Arthritis. There are also others out there, Creaky Joints is one, RA Warrior is another, both those are US sites though so be aware treatments/brand names may differ from those used in the UK.
There's no guarantee you'll experience any of the side effects you've scared yourself reading about but one thing’s for sure you will never know if you don't try taking them. If HCQ doesn’t help or you are unfortunate enough to have intolerable side effects there are options for your Rheumy to prescribe. One thing's for sure, when having flares that is is when damage occurs & it can be silent, you don't have to have pain to know damage is happening though swelling & redness is a giveaway sign.
I can only be honest & say you may be on meds the rest of your life but you may not be. It depends on how well you're controlled on them, you may reach clinical remission, which means that your DAS score is low enough to be in remission thanks to your meds. Some people can come off their meds because the disease has burned itself out but that's less likely.
Did your Rheumy take time explain how important it is to take the meds he's prescribed? It does sound as if maybe he hasn’t & you need professional assurance.
Hydroxychloroquine was my first DMARD & it worked well for the first year. I've now been on methotrexate 10 years & it keep me quite well controlled along with my add on meds, prednisolone, NSAID etoricoxib etc. I have had no joint replacements so I see that as a huge positive that my meds have helped. So, rather than sitting looking at your meds do try them, you're not the first to be concerned about meds but I can't think on anyone who didn’t take them to at least give them a try. We've all been where you are just now, you're not the first, it can be a big decision but it's one only you can make. 😌
Hi bamboo you have had some great advice there from some very knowledgeable people , I was diagnosed a year ago and like you pain in hands and upper arms which just got worse each day , I was put on hydroxy and given a steroid injection , now apart from the odd blip I have been ok and generally pain free (touchwood long may it last) , I like everyone else didn’t want to go on meds and was petrified but I also don’t want to end up with joint damage and more pain , stick with your healthy diet and read up on the NRAS sight about RD and if where you I would try the meds they usually take around 12 weeks to kick in and see how you feel in a few months, it may be that you are one of the lucky ones who gets into a quick remission and you may then be in a position to reduce the meds , we all know how you feel it is very scarey at first , all the best
Jayne....
Hi Jayne.....Great to hear from another successful Druggy!
Long may we continue to get our Fix!
Yes that made me smile , 🤭👍
Agree with everything said here by some very knowledgeable people - they've been there, seen it and their advice is always spot on. I was like you - I was so reluctant to take methotrexate and, yes, I'm still experiencing side effects, but they are doable and preferable both to the pain and lack of mobility I had before and possible joint damage.
Hi bambooinlondon,
I've been on hydroxychloroquine for 6 months now, it's been slow to work for me but it does seem to be working.
It's the mildest of the dmard's and hasn't given me any problems. Just make sure to get your eyes checked yearly, although I think eye problems caused by it are quite rare. All the best!
as above to all the wise wisdom on here. You need something and work with your rheumy team rather than fight them. Only since Sept taking drugs and though ups and downs I am glad I am on something MTX and reduced other pills.
Welcome, I would just like to add that I have experienced some side effects from DMARDs, but I am much better on than off them RD wise. The side effects go quickly when you stop the drugs, but you may not experience any side effects.
So don't be scared give your DMARDs a go, would be my advice, most people do just fine on them. Best wishes.
I have been on Mtx and Hydroxy etc for the last 7 years and during that time the degeneration in my joints has got worse.
When I started on these drugs I had some bending of the top joints of two of my fingers. However during the last 7 years, I now have bending in most of my fingers and have had a big toe joint replaced five years ago, and last year I had my shoulder joint replaced. I now need both my knees replacing. So I really don't know whether the drugs work for everyone or not.
How long before medication works for RA
Bursitis, degeneration in the joints
How can I protect my joints?
How long before my RA is under control??
How long is too long?
