How do we determine if our RA meds are working well?
Is it considered a good outcome if regular paracetamol and ibuprofen (in addition to the prescribed Mtx) keep pain in check or should we expect the RA specific meds (Dmards et al) to give a pain free result on their own?
My blood tests have not shown inflammatory markers for many years but pain and inflammation clearly indicate RA along with many connected conditions (carpal tunnel, rotator cuff and lupus like issues).
I am often offered steroid injections when the pain is more extreme but I struggle to understand when it is appropriate to question the long term medication regime.
Thank you for any guidance.
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Horse_and_hound
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First off, it depends what’s causing the pain. Our drugs can’t touch permanent damage and osteoarthritis, which for me is actually the bigger pain problem now….and have just has a steroid injection into my elbow because of calcified tendons.
So if you can sort out which of you pain comes from what, and the RA is responsible then question away!
My RA is actually very well controlled, but I still have moments where I need anti-inflammatories. However, not regularly, most often when I am tired and have overdone things. Were it more regular I would be raising this with my rheumy and discussing a change of drugs, or adding in an extra drug.
I'm very lucky in that I have no other issues (OA, joint damage etc) and my current regime (Methotrexate, Hydroxychloroquin and Sulphasalzine) is controlling my RA so that I no longer need any pain relief. I have some morning stiffness and the occasional twinge but otherwise so far so good 🤞I'd suggest that it's worth a chat with your team to ask what they think the cause of your pain is and whether it's worth a medication review.
Thank you. I have requested a transfer to another hospital and have an appointment at the new rheumatology department in two weeks time. I am keen to understand better how all the different aches and pains fit into the overall picture.
Similar to helixhelix for me. I was really struggling with what I thought was a flare, but bloods were showing nothing to be concerned about for RA. Consultant sent for X-rays and US of hands and feet (where my pain, swelling and deformity is) and it’s osteoarthritis. Got a lot worse since last xrayed/scans 36 months ago. Saw GP for pain management which is basically paracetamol and codiene as required. Also waiting for a bone density scan as was on steroids for 15yrs+ plus nearing 50 now.
My bloods have not shown any RA markers for some years now but I gather that they are not an essential symptom even when you are in the midst of a flare.
Agree with others that the meds we take can’t deal with damage already done, and that they need managed separately. It sounds like your RA us under control. Even when my AS us g flaring I need pain meds, as it’s caused subluxations of toes and knee caps from the tendons shortening and calcifying, and rib and pelvis from fusion. I managed last Tuesday to re fracture my bottom rib due to its stiffness and pushing it slightly further than it wanted to go. Did this just bending into a food crate on the floor that had been delivered. Thankfully it hasn’t resulted in a flare, so that’s a bonus.
For me, I would only contemplate a change if I had swelling and inflammation that lasted for more than a few days, or my body could not tolerate the meds any longer. I do take additional anti-inflammatory meds occasionally and do suffer pain and fatigue, but it’s not constant or even regular enough to consider forgoing the benefit of ‘reasonable’ control of RA.Finding the drug that suppresses your RA is not an easy process, as we know.
Thank you. I was originally prescribed Sulfasalazine then Mtx was added but following a break from both meds (shingles and oral thrush which would not clear up whilst on the RA meds), I had a period of remission.
I was restarted on just Mtx following a flare up and continue with this alone. The flare has receded but I am left with ongoing issues which mean I am taking regular analgesia for various joint pains.
Apparently I’m in remission. Very little pain except where the damage has been done, so rubbish knees and one ankle. My inflammation levels have been within expected normal range for two years now. I do continue to take benepali but the methotrexate has been reduced drastically and I often forget to take it for weeks with no adverse effects. Used to take sulfa too but dropped that a year ago. Never take pain meds or anti inflammatory meds.
I’ve not done anything else to get to this. My diet is as appalling as ever and I drink alcohol (not to the point of being comatose😂).
I take vit D, vit C, MSN organic sulfur, omega 3 and something else I’ve forgotten about daily.
Must admit, I am surprised as 6 years ago I couldn’t function at all as it came on very quickly and dramatically whilst I was away. Went on BA flight slurping champagne, came off in a wheelchair. Couldn’t walk, couldn’t hold a cup or anything and as for a step,-wasn’t happening.
For me, benepali changed everything and I do take that like clockwork. For me, whether it was the meds or pure luck, I’ll never know. I’m grateful to whatever it is though.
Hi Wilbertjellyfish (great name), horrified to hear you've been that long without control of the RA and failing on Bios. Nothing's worked for me this year, with so much pain & debilitation, can't contemplate carrying on like this indefinitely, so really feel for you! Let's hope the New Year brings New Energy and Relief and more. Take care X
Thanks for your interesting post. I was on DMARDS for many years and although sometimes having proper flare-ups, many other times when not, I'd have a chronic deep painful aching, especially in hands and wrists that was horrid and would last months then ease off for a while and painkillers would only sometimes help. I generally otherwise didn't really need painkillers or anti-inflamms (on MTX, nor Leflunamide).
This year though, with very active RA & the drugs stopped working, I seem to have at least 2 different domains of pain going on. One is the typical, very painful inflammation of a range of joints; the other is pain ranging up to agony in connective tissue/ muscles/ tendons etc, especially shoulders, upper arms, hands & torso, that I never used to have - but which I'm finding very hard to live with as it's so painful & stopping me doing do much. When I enquired about it in an appt the other week with the Rheumy & said that the steroids & oramorph & codeine don't seem to help, I was told that is just 'chronic pain' and nothing can be done about it! I couldn't get a proper answer as to the source of this pain, whether an offshoot of the RA, associated with it, or another condition altogether - and whether it's from damage already done.
I hear what you're saying, but not sure myself what is going on either! We'll keep fighting for answers and remedies! Good luck in the New Year, Horse&Hound X
I am so sorry to read of your ongoing issues. Your story does sound similar to my own.My GP has referred me to a different hospital and I am hopeful that I may get some answers to the many questions I have. Whilst being offered steroid injections has been helpful, I would very much like to understand my condition better - even though it can't be cured.
Wish you all the very best obtaining the important answers. Totally agree, the more we can understand about and deal with our own conditions, the better. Take care X
For me it’s difficult to tell what’s what 🤷♀️Back in May, after 3 years of being pain free, my shoulder suddenly became very stiff and painful for which I was given Prednisone. It worked for a few weeks, then the pain was back - so after an Ultrasound, it now turns out to be a rotator cuff injury (not my RA).
Then 6 months ago, RA then took a turn for the worst, but no visible swelling as it was mainly in my hips, knees and shoulders. Despite having two Depo Medrone steroid jabs in my bum, which did the trick for the pain, my ESR still remains in the 100’s, for which my consultant has now tested me for Lupus and sent me for a Nuclear Bone Scan. Now the latest steroid jab has worn off, I’m ok, but I still don’t feel 💯 right, but she is treating it as my RA, and upped my Methotrexate. So, I think it’s difficult to pinpoint what actually causes the pain sometimes. 🤷♀️
You have my sympathy. I also suffer with rotator cuff pain (and also carpal tunnel syndrome) - both of which, I understand, are 'linked' in some way to RA.My blood has been checked for Lupus antibodies - came back negative but I have at least 6 symptoms pointing to a Lupus diagnosis.
I am curious about the nuclear bone scan, have you had the results?
I don't mind you asking at all.In addition to the joint and muscle pains and stiffness, I have dry eyes, inflamed and dry nasal lining, dry mouth, rosacea with the typical butterfly pattern and extreme tiredness (but this could just be down to difficulty with sleeping due to bursitis in both hips stopping me from sleeping on my sides and snoring when lying on my back).
Those are the main symptoms which can point towards lupus but, of course, are also Sjogren's related.
The problem as I see it is that auto-immune disease symptoms can indicate quite a few different diagnoses - with overlapping issues blurring the actual picture.
I do hope that your friend gets some help and feels better soon.
My friend has the rash on her face.Will you get it looked into?
She has Reynalds as well (think that’s how you spell it).
My Consultant phoned me this week, the NBS showed inflammation in my right hip, which is where I get the most pain. As my CRP is now normal, my ESR has only gone down to 104 from 125 in 3 months! This is what she is most worried about, very high ESR only has a few causes, none of them are pretty reading (I must stop Googling 😔).
So she is now sending me for an MRI with contrast. I’m beginning to get a bit worried now the hip pain might be something more sinister than just my RA. 😔 which I’ve been trying to ignore, but I’m getting a little bit of butterflies in my tummy now.
I must say though, I am so lucky to have such a good Rheumatologist, she is tenacious about finding the cause of the consistently high ESR, and is determined to get to the bottom of it.
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