after having a really difficult 6 weeks since coming off steroids, I've just had the best day ever: no pain, loads of energy and able to walk almost normally (although very slowly, on flat surfaces) as well as feeling stronger and more supple generally. The only things that have changed are stepping up to 20 mg of MTX from 15 mg (two weeks now) and starting Naproxen: 1000mg a day for the last 2 days.
Even if today was a complete fluke & tomorrow turns out grotty again, I'd still think today was an amazing change - I think I actually feel better in myself than I did on steroids. I've not been able to do normal stuff, all day, busily & mostly on my feet since early March.
My money's on Naproxen being the magic ingredient although I suppose it's possible that 20 mg of MTX was what I needed all along. If this lasts, I'll concentrate on enjoying it but what pitfalls, if any, should I be aware of? I looked back at past posts and saw that quite a few people recommend keeping Naproxen for when it's needed most. But my Rheumy diagnosed the 1000 mg and I do have quite high inflammation at the moment - ESR sticking at around 70 - so maybe I need to take it regularly to tackle inflammation??
I feel so well I almost can't handle it ... that sounds a bit weird I know but it's so sudden. So where's the catch? Or can I just carry on blissfully popping the pills without a care in the world?
You do however need to protect you stomach from the destructive effect of naproxen can have on you stomach. Taking a PPI will give you protection. Drugs omeprazole or lanzoprazole are both effective drugs.
Thanks Carole! I'm on Omeprazole ... I've been on it for a couple of weeks as I started taking Ibuprofen while waiting for Naproxen prescription (long story!). Have taken Omeprazole before without experiencing one of its notorious side effects but it did get me in the end .... boy o boy, bunged or what! But even that didn't burst my bubble!
HI Kirstie, if you suffer with constipation from taking Omeprazole then I can recommend a probiotic - I use Probio7 available at Boots or Amazon (cheaper) and I take after breakfast and after dinner and have no problems. xx
I think spondyloarthritis is what is being suggested for you? If thats the case then I'm not surprised that naproxen works. Good response to NSAIDs (in 24-48 hours) is one of the signs that indicates that it is likely to be a spondyloarthritis (and you have inflammatory back pain). If you have peripheral symptoms (i.e. anywhere other than the spine) then MTX is also quite likely to have a positive result in spondy, though not on the spine. So the combination is a good one, and your response does tend to confirm that its more likely spondyloarthritis than RA (even though both are forms of inflammatory arthritis).
I hope you can keep taking the naproxen and continue to get relief. If you do start getting stomach irritation, then try a PPI (any of the drugs ending in -prazole), and if that doesn't stop it, ask to try a different NSAID (there are loads of them) as they all affect folk differently. If you end up having tried more than 3 or 4 different ones and still can't tolerate them long term, then thats the time to push for anti-tnfs.
Thanks earthwitch, dead interesting information. I've been told I 'almost certainly' have PsA. I started worrying about my back ache but the last Rheumy I saw thought my back was in very good nick. I'm getting the impression that only an expertly interpreted MRI can really show whether the spine is or is not affected by inflammatory arthritis.
I was on Volsaid Retard and then Ibuprofen when I first got ill and they didn't seem to do much for me at all. Thinking back maybe they did control the pain but they didn't reduce the inflammation and made little impact on the half-dead feeling I had. Whereas now I feel like I'm on speed. (Will probably be catatonic tomorrow!).
You are right - its incredibly difficult to see signs on MRI or xray that prove spondyloarthritis until it gets to fairly severe permanent damage. NHS reports don't seem to spend much time looking for the tiny detail either. I ended up having to get my NHS MRI reported again by a private radiologist and it was amazing the difference in interpretation - NHS said no evidence of inflammation, and the private radiologist found several areas where he considered there was evidence. Even the NHS rheumatologist didn't seem to want to take time looking at the MRI in detail, but again a private one did, and confirmed what the radiologist said.
The naproxen should really help knock inflammation, that would be likely to cause damage, so you might be really lucky and never end up with bad back problems or permanent damage to the spine.
Thanks for asking about me. It took a while (till I got over the UTI and feeling bad with the antibiotics) before they really started kicking in, but its the beginning of week 3 now and finally I am getting some significant relief. I'm sure I will be like the energiser bunny very soon (but must try and rein myself in so I don't end up damaging something!)
So glad you are getting some relief - the word 'significant' sounds promising! I'm finding that the break from systemic symptoms (is that what insomnia, weakness & aching all over are called?) is the best thing that's happening. I realise now that I was getting quite depressed or at least rather dour - can't stop smiling at the moment!
There's a worrying tendency in the NHS not to investigate closely & it's just about money - not looking for costly problems - it's got to be. Very likely false economies but I expect savings have to be made on a departmental basis which removes any impetus for long-term thinking or planning. I'm like a broken record, I know!
So glad you've found something that works, that's half the battle with all the different forms of inflammatory arthritis and can take a long time to find the right mix.
Thank you Beth. I hope it is the right mix and not just a flash in the pan! I have learnt to expect either the unexpected or same old, same old (sounds like a contradiction but perhaps you know what I mean - I'm not anticipating a simple little happy ending just yet!). I've read about people finding what works for them & been pleased for them but couldn't see it happening for me just yet. This damn thing is such an education, though not necessarily the sort I want!
I've woken up this morning feeling just as full of beans as yesterday (no miracles though - I'm still sleeping my life away: 10 and a 1/2 half hours, and the whole performance of getting me, clothes, cups of tea, dog etc. up & down the stairs is still a lengthy comedy routine). But almost my first thought was: 'how come after 5 months of getting used to the idea of taking chemo drugs it now seems that I'm responding brilliantly to tablets I associate with hangover relief???'
Earthwitch your knowledge of spondyloarthritis is impressive. Unfortunately the same cannot, it seems, be said of some doctors. The private Rheumy I saw prescribed the Naproxen - he seemed to be very sure about how to proceed. But some of these people have a worrying air of vagueness - kind of 'wait & see' meets 'who cares?' mixed with 'God knows!'
Sometimes I make a half-hearted attempt to break the HU habit! Partly 'cos it is the thief of time but also because I get so frustrated hearing about people getting crap treatment.
That's really great if the bouncy feeling has carried on. Hope it's the start of a real roll and just keeps going. I really remember the magic bit when the pain etc actually started to recede rather than getting worse and worse. It was slow, and with a number of blips, but the sense of relief was overwhelming and a bit unbelievable. I still need the most incredible amounts of sleep, particularly for someone who thought 5 or 6 hours was plenty, and if I don't get it I go backwards. So really do listen to what your body says it wants, and if it's 10 hours well then that makes the effort to get yourself to bed worthwhile.... Off to bed with you! Polly
Thanks Polly. There have been so many twists and turns since the beginning of this thing. And I know from everyone's posts that that's how it is for most people so I'm just hoping to keep on bouncing.
Getting to bed will be easier this evening as my OH is back home after being away on a work thingy for a couple of days. Hence the possibly odd sounding earlier reference to getting the dog downstairs - the old boy sleeps on the bed (we vowed that would never happen!) - but he can't do stairs anymore so if I'm on my own I have to lug him up / down in a bag a step at a time. (I'm talking about my dog, not my OH).
Hi Christina, I was prescribed Naproxen while I was waiting for a diagnosis. The drug worked wonders for me and I found that it completely took away my pain. After a couple of weeks my fingers really swelled up badly and my feet and legs also. I thought it was the ra but when it got really bad I decided to stop the Naproxen just in case. My swelling then went down. Now if I have a lot of pain I take an ibuprofen tablet but I only do this very occasionally. Again I find they work wonders and I feel fab but I don't like to rely on them. Glad you're feeling so well and I hope it continues for you.
Paula x
in reply to
Thanks Paula.
I've heard that Naproxen can cause water retention. So far I seem to have had a fairly easy ride with drugs (not famous last words, I hope) - makes me think maybe I should have gone for more of a rock 'n roll lifestyle all these years, in between marking books etc. anyway.
But if the same thing does happen to me it's good to know that your swelling went down when you stopped taking the Naproxen. All the best to you.
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