Bit confused: Only just been diagnosed with RA RA... - NRAS

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Bit confused

Tomlinson profile image
11 Replies

Only just been diagnosed with RA RA negative. On hydroxycloriquine, and steroids. When reduced steroids symptoms returned. Feeling very frustrated and quiet incapacitated.

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Tomlinson profile image
Tomlinson
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11 Replies
Fruitandnutcase profile image
Fruitandnutcase

I started on a three month course of steroids and after a month or so started taking 200mcg hydroxychloroquine. It took a few weeks after I stopped the steroids for the hydroxychloroquine to kick in but I've been in hydroxy only for about a year now and things are fine, I know it can take some time for hydroxy to work.

oldtimer profile image
oldtimer

It takes often several months for a Disease Modifying Anti-arthritis Drug (DMARD) to work.

Keep a record of what is happening and let the rheumatology team know.

Kate23 profile image
Kate23

Hi I had a six week course of Prednisalone while waiting for Hydroxychloroquine to kick in, when the symptoms came back they added Sulphasalazine to my meds...that was beginning of the year and now the pain and stiffness is coming back..I will be calling the Rheumy nurse to ask for advice, which is what I suggest you should do...they are so helpful and will help sort you out. Good luck

dtech profile image
dtech

It is interesting how different rheumy consultants work. As I've said on this site before on posts like this, some start with one nsaid then increase. Others, like mine, start with several and then reduce. Looking at the history, and I'm sure people will correct me if I'm wrong😉, we seem to have more people on here telling this story, i.e. They have been given say hydro chloroquine and finding that once the immediate steroid jab has worn off their symptoms come back, than we do when others have been given multi doses of nsaid's. Then , as I am sure you will agree and we know, the additional drugs sometimes take several months to kick in. Comments? Observations?

Simba1992 profile image
Simba1992 in reply todtech

To me again it seems that most posts talk about early aggressive treatment with Mtx + some other Dmard, nasids and pred are given when waiting for Mtx to kick in ( if it does). Often even before clear evidence for RA exists.

nomoreheels profile image
nomoreheels in reply toSimba1992

It's the proper pathway because as dtech rightly says most of us would prefer the chance to lessen the pain & have a chance of starting to stop degeneration & the only way the guidelines state that can happen is to medicate. The first aim is to halt any further attack on the joints as it's damned hard to do so further down the line, even impossible. It saves the patients the pain & the NHS tons of money replacing the affected joints the earlier treatment is started. And in actual fact in this case MTX hasn't been the first DMARD & HCQ isn't considered aggressive treatment. I'm not sure how often treatment is commenced before clear evidence exists as most Rheumys I'm sure need to have evidence to justify prescribing specialist meds.

dtech profile image
dtech

But if the alternative is 'wait and see' and months go by, allowing pain and further degeneration of joints. I know which I would prefer. And had myself in starting aggressive treatment, allowing me now to be in remission.

nomoreheels profile image
nomoreheels

We've had similar posts from newly diagnosed before so don't worry. I'm seronegative, diagnosed in 2008 & was also started on HCQ & steroids but also a couple of NSAIDs, one to take daily & one when I felt I needed it, & I did! The steroids & NSAIDs dealt with the inflammation & in turn pain pretty much straight away & the NSAIDs were enough to keep it in check until he HCQ started working so the one less regular NSAID was stopped. Now, we all react differently to meds, you'll see that mentioned here regularly, but it might be worth asking either your Rheumy if you're seeing him/her soon, or your GP if not if an said could be prescribed, it may be enough help until your HCQ reaches it's full potential.

Oh & welcome & I hope you find being here helpful, hang around, you'll learn lots about RD!

Simba1992 profile image
Simba1992

I have understood that diagnosing RA is quite tricky often times. There are still doctors who feel reluctant to start toxic meds before they are sure of the diagnosis. Lots of new research on AI diseases and RA of different severity and conditions that mimic RA that last only for a limited time and do not need an aggressive approach. But perhaps the safest treatment route to take is bringing out the big guns even if it may mean unnecessary suffering. There is so much still that is not known about the disease or of the longterm effects and safty of the meds used today that no one can really say that there is a treatment route that is the best for everyone.

nomoreheels profile image
nomoreheels in reply toSimba1992

I think there are many in the field would disagree & even more who would not recommend delaying treatment & suggest their patients opt to try to heal themselves with diet. Sorry but I think it's a long way off, not least because of the need for multiple scientifically controlled trials before it's taken seriously by the medical profession. arthritis.org/about-arthrit...

dtech profile image
dtech

The first studies on the use of methotrexate for RA were done in 1985. Before that it was used as a cancer drug from the 40s. So I think there has been 'long term use and effects' of the drug. As for no one can really say what the best treatment use is for everyone. Quite right. It's like any illness, research is an ongoing thing to find best treatment and one day (hopefully) find a cure. But, like I said in my original post, I'll carry on taking those 'nasty toxic' drugs if it keeps my RA at bay 😉

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