I have only been confirmed with RA (positive RF and anti-ccp) in early June, and now been on 15 mg methotrexate for 12 weeks. I know when I was diagnosed I was in early stages as RA only showed up in my ultrasound, and according to the consultant hadn't "clinically presented" in spite of a lot of pain and swelling in my hands. I am on nothing else as hydroxychloro brought me out in a bad rash. All has been going well as I've gone from not being able to open car door on some days to being able to make a proper fist in both hands. My score last week at the rheumy clinic was 2 and my bloods are normal. All brilliant, so far so good, but this week the stiffness is creeping back into my hands and I've had some joint pain. If this continues, would this indicate a mono-dmard route isn't the best one, and I should be looking for some additional medication? Should I still expect some mild flare ups even when the medication is working well? Advice please.
I am also doubly auto-immune with hypothyroidism - had it for 20 years - and wondering if RA medication is a similar thing: the doctor tells you your bloods are fine and all is well, even if you never actually feel wonderful.
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MissyBear
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It's something to raise with your rheumy, but certainly my experience was that although MTX worked a fair bit, after a few months it didn't quite hold the RA at bay.
I had hydroxy added in next, and again all seemed to work but after a few months the niggles returned. So Sulpha was added too, and the combination of all three on top doses worked great for years.
Keep a diary, and if the niggles and aches continue with no let up it should tell your rheumy quite a bit. Blood tests aren't everything.
I couldn't & still can't get my head around adding,adding, adding more drugs until you don't know where you are.
I spent about the first five years saying "well can I try xyz instead" I had a very patient Rheumy & for me it has paid off . But from what I read on here it hasn't worked for many others....hope you might be one of the lucky ones.
Read about recent studies that show that Mtx+ low dose predisone has shown good results in early RA, with minimal side effects. Something you perhaps could ask your doctor about. Good luck. x Simba
Agree with AC. I've been on prednisolone for 5 years & really I believe they should only be used as a stop gap for controlling a flare, or as they were used initially for me to help reduce inflammation whilst you wait for your DMARD to reach full potential. Steroids come with their own set of downsides, even at low dose they can increase your fracture risk, retaining your bone density is imperative with RD. So not ideal to rely on steroids to control you, there's no guarantee you'll have minimum side effects. Through good management I've been fortunate & remain with osteopenia/borderline osteoporosis but it could have been very different.
Low dose steroid with Mtx really nothing to be afraid of. Side effects for limited time use together with Mtx give you minimal side effects and better control and less erosion. This is what new studies has shown.
This link is seen in full, the others are still only abstract so I've more info now, thanks. I think my overriding concern is the lengthy duration on prednisolone, but also concerning is that "tight control studies" require monthly reviews, not always feasible for the patient (time consuming) & I would think pretty difficult to ensure in the UK with Rheumatology units being so busy as well as understaffed.
Nowhere could I see the overall intended length of time prednisolone is taken, except that it was a 2 year study, some did appear to continue this protocol after the study though. Anyway, my guess is they're on steroids a considerable length of time given the participants were also prescribed a bisphosphonate & calcium/Vitamin D supplement, interestingly though no mention of DEXA scan to check on bone density/estimated fracture risk or the other issues long term steroids bring, not to mention the careful & lengthy tapering needed. It does state however "No study has evaluated the additional joint-protective effect of continuing glucocorticoids 2 years after a diagnosis of RA (19). Thus, it would make sense to taper and stop glucocorticoid therapy after this period, if possible, especially because some adverse events (such as osteoporosis) are associated with long-term use of glucocorticoids.".
As an aside interesting they were given a very low dose of folic acid, 0.5mg every day except MTX day.
As an example when I was first diagnosed I had a short course of a steroid (1 month, though not prednisolone I had deflazacort). It was explained to me that this was to reduce the inflammation to give the HCQ a better chance whilst I was waiting for the DMARD to work. This I can/did accept as good management of early diagnosis, or treat to target, & still retain bone density & not experience the moon face, additional weight gain, steroid induced diabetes, mood swings & other possible side effects of longer term steroids, though that hasn't quite worked out for me.
Longterm studies on the AE of low dose pred. do not exist but what the interesting facts with the new look on the use of steroids in early RA seems to show that Mtx+low dose pred instead of aggressive tripple therapy gives you better results on early remission as well as decreased erosion even after pred has been stopped.
There seems to be a window of opportunity for newly diagnosed RA patients. Starting with 10mg Mtx+10pred has been seen as a good starting treatment. Mtx then increased if neccessary. Finding the lowest effective dose for Mtx this way is often preferred. It has also been shown that this treatment protocol has infact increased the time on Mtx instead of moving on to biologics with more serious risks.
An interesting point in the discussion of early treatment of RA on this forum is in my view the fact that most advice concerning meds and treatment protocols come from forum members that have been diagnosed many years ago and whose treatment protocol has been from that time and thus may not take into consideration new findings and eventual changes that are taking place in treatment.
I don't think initiating treatment on MTX & pred is anything new especially, rather regularly adopted.
Yes, I've read what you detail re 10mg of both MTX & pred.
I'm not sure we agree with your last point, we discuss new treatments, not always those the longer diagnosed started on. Take yourself for example, you've been diagnosed some time. Maybe not the LDN as that's not recognised by NICE, FDA & other countries guidelines but that's not all you inform of or discuss here. We can only advise from experience, that can't include something we haven't tried or experienced. But we can discuss new treatments, often do & we've just been discussing newer (2012) protocols.
I would say, & I'm not medically trained but from experience, you'll not necessarily need other DMARDs adding. You could remain on MTX until the higher doses no longer control you in theory, then your Rheumy may start looking at options for you, double or triple therapy or maybe dropping MTX & considering a complete change in meds. There are so many variants depending on the specifics of each case.
But I wouldn't worry about this, it could be if your Rheumy thinks anything adding is needed it's just an NSAID, they specifically deal with pain & inflammation in conjuction with DMARDs. By score I take it you mean your DAS 28 score, if so 2 is very good, (less than 2.6 is considered as remission), as is normal bloods, the best you can expect, so I wouldn't think your Rheumy will be thinking of discussing med changes at the mo.
When I was first diagnosed I was started on my DMARD (HCQ), 2 NSAIDs (celecoxib to take daily & nabumetone to take when I still had inflammation & pain) plus a short course of steroids to work on inflammation whilst my meds started working properly. You didn't have the benefit of NSAIDs or steroids so the HCQ initially (but that wouldn't have reached it's potential I wouldn't think) & now the MTX is doing all the hard work if you understand? So, in my mind it wouldn't unusual given it can take up to or longer than 12 weeks to reach it's potential that you're still having breakthrough pain & inflammation, especially the joints with the most joints you use most, like the hands & feet (finger joints & toe joints). Take pics on any inflammation you notice between appointments then you can show your Rheumy rather than just explaining what will more than likely disappear the day before your next review.
Your other question is the million dollar one! Nobody knows. Some achieve remission & other than taking their meds hardly know they have RD. Others never go a day without problems but please don't worry about that just now.
So, enjoy a good doctor-patient relationship, be guided by him/her & make med decisions between the two of you & you'll not go too far wrong. You were probably given a nurse helpline? If you have any queries do call them, being newly diagnosed it's worrying if you have the slightest change, we all know because we've been there! For anything else we can try to help but we are just patients like you so can't give medical advice.
What an excellent reply, nomoreheels! So great to learn from the experience of others, but rubbish that you’ve had to deal with the disease. I guess it’s a case of just enjoy the fact that I am responding well so far, and deal with whatever happens down the road. Thank you!
Thank you! Well, yes really. I think that's a healthy way of dealing with the disease to be honest. No point in delving into the future trying to second guess what will happen when it may not. Similarly with meds. 😉
I should have added I'm currently on monotherapy with MTX (which I've been on now for 9 years) having tried double therapy with two different DMARDs which didn't work out for various reasons. We discussed increasing my MTX dose & decided to trial it. It seems to be working with the help of low dose steroids & an NSAID on alternate days. Just hope it can hold the disease once I start tapering the steroid! Thought it may help.
Your question really is an important one, I feel. Especially when you are newley diagnosed. In my view it is in all our interest to minimize toxic meds without jepordizing effective treatment. New studies and research are constantly popping up. Taking these results and findings into the discussion when planning your treatment with your doc should be in all patients intersest.
It has been shown that mtx+low dose pred as well as mtx+low dose doxymycine ( antibiotic) is superior to mtx alone in early RA treatment. Mtx is a cytotoxic immunosuppressive med whereas low dose pred and doxy do not have cytotoxic effects only immunomodulatory and low immunosuppression. Being innovative with existing med and treatment options is perhaps a growing trend (?).
This subject is very close to my heart since I have since my diagnosis 2015 tried my best to control my disease through supporting my immunsystem not suppressing it. I am constantly learning through research and trial and error hoping to find a treatment protocol that will put my RA in remission.
I have learned that in my situation:
LDN makes a difference. Not a magical bullet for me but decreases pain, cotrols flares, gives good restful sleep.
Diet matters!
Supplementation with certain vits and minerals essential
Low dose pred is not alltogether bad at times. Side effects and efficasy can be monitored by extended dosing and alternate day dosing, thus minimizing side effects and increasing symptom relief.
My new find is low dose doxy (20-40mg). So I will add tis to my protocol and see if any benefit from this. Here is a read on doxy+mtx.
Thank you Simba! I have my next consultant meeting in early October, so will certainly enquire about these early stage options. I totally get what you are saying about supporting your immune system not further suppressing it, so like the idea of the antibiotic. There has been a lot of discussion about leaky gut syndrome over the last five years or so, and connections to autoimmune diseases such as RA. As many consultants do not yet have the evidence to support this thinking, they tend to be dismissive of dietary influence. Certainly I find avoiding sugar, white bread/flour and red meat do make a difference to inflammation, and general health is particularly important given you are taking such toxic drugs. Here's to your future remission!
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need some advice about when to go back to work....
How do you know
Bloods came back negative but I have all the symptoms...
How often do you get sick (catch something)?
Back to methotrexate...which I'm allergic to?!?!
