I know there are a lot of people with experience on here, so hoping for some insight. I'm relatively new. Diagnosed RA in April - DAS-28, 9 swollen, 10 tender at the time. Steroid IM gave relief for two weeks of all symptoms. Started methotrexate in May, now 12 weeks in. No side effects. Generally good response, apart from mobility (knees and feet) when waking up - between 15 and 75 minutes to get going.
However, chronic (tendon?) pain to one heel - constant and doesn't seem to improving. Pain from 1/10 to 7/10 depending on day. There is an ultrasound booked as seems to be some deformation.
Also, knuckles and wrists intermittent - from 1 - 5/10 dependent on day, and, weirdly, whether I had red wine the night before! No wine = bad, some wine = good.
Q1 therefore is 'What is reasonable to expect in terms of pain relief in early days of methotrexate?" Complete relief or just grin and bear it? I suppose I'd like to know if I should be querying medication at next review, due at the end of August.
Q2 - does red wine offer day after relief to anyone else? Liver function is good, so I'm not currently too concerned about methotrexate/alcohol mix.
Thanks in advance
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JohnOldPunk
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MTX takes time to work often increasing in dose over a period of months. 75 mins of stiffness and pain shows active RA and meds not quite cutting it . I’m really pleased they are scanning your heel/foot so early. Took me years to get a scan and ended up with tears in Achilles. Each rheumatologist often follows a different approach . Keep a diary with photos so your rheumatologist can see what’s going on . We often forget something or then go off on a tangent and your well prepared spiel goes out the window. Don’t hold back I have a high threshold for pain and because I’m not suffering as such things get overlooked ( lesson learnt there) . The aim is to be pain free
Q1. Hang on there….12 weeks on Mtx is still baby steps. ….so Yep grin & bear it - then one day - hopefully very soon ….you suddenly realise things are improving. Very good sign is no side effects….24 weeks is kind of the time the MTX improvement really kicks in.
Q2.As your LFTs are good…obviously run it by your rheumy…but when I asked my rheumy about my daily glass of red 20+ years ago……he answered “as long as you don’t always finish the bottle”…..I continued with my daily tipple all the time I was on Mtx. Now on Rtx & same old, same old.
I have a little red wine about twice weekly, never noticed any effect on pain , but will pay attention now!It can take some time to get your medication right. Hope it happens soon
Methotrexate didn’t conquer my pain until they upped the dose to 25ml, top possible dose, then it worked. After 3 months you would probably see better control if on the right dose. Don’t give up on methotrexate as it might just be that the dose needs tweaking. I still have no side effects on the high dose. Definitely report pain and discomfort, though I would maybe wait another month so you don’t get further delayed with give-it-time-to-work. It’s a lengthy process to get the medication right but don’t lose hope as things improve so much when it happens.
I’m 4 years in to RA, came on suddenly at age 57. As everyone else has said it’s a slow road to getting the dose and combination of drugs that’s right for you, and methotrexate (MTX) takes a while to work most effectively- so give it a few more weeks and meanwhile maybe ask your GP or consultant for painkillers to help you through.
My journey.
Over a period of 12 months I got up to the max dose of MTX (20mg combined with Hydroxychloroquin and naproxen) but it wasn’t enough and I still had pain and stiffness in my knees and ankles. Tried steroid injections to specific joints with some temporary (but not lasting) success. So was switched from MTX pills to metrojet pen injections. It was explained to me that when you swallow a pill some of this will be excreted by your body whereas an injection is absorbed in full. The metrojet pens worked better but still not quite enough to fully control RA.
It took 2 years of trying different combinations for my consultant to say we should consider a biologic drug (in addition to the MTX and hydroxychloroquin). The biologic changed everything after 2-4 weeks. Now have no real pain in my joints … still some stiffness in a morning (or if I sit still for too long) and occasional fatigue that I’ve learnt to live with. Have been able to reduce MTX to 10mg. I’m not the person I was and my ankles are weaker than they were but I’m pain free and just get on with life normally.
I also enjoy a glass of wine most nights (or G&T sometimes) 🍷 . Stick with the journey John , you will get there. Give drugs the time needed to work for you but also shout up for what you need and don’t just settle. Good luck 👍
I would have to stop drinking red wine to find out. When first put onto mtx I asked my specialist if I had to stop alcohol completely or could I have a glass of red wine with an evening meal. Answer was yes. Blood tests regularly, long may that continue. Good luck.
I found I had noticeable improvement after about 10 weeks when methotrexate was added to sulfasalazine. It wasn't perfect, but better. Then, at 11 months on mtx I had a quite sudden major improvement. Not only did almost all the pain and swelling go (except for a bit of osteo if I overdo things) but I also suddenly had loads more energy. I hadn't even realised I was tired before because it had gone on so long. No idea if the improvement was down to the mtx or just my body decided to behave for a while. (18 months of bliss but now starting to have a few probs again.)
I never noticed any pain relief after red wine, sadly. Just found that my alcohol tolerance is severely reduced. Feel quite unwell (but not like a hangover) if I drink even half a glass extra.
Similar experience to you consultant gave me steroids injections in my ankle two worked well no issues since. As for the wine, I know cherries help with gout so who knows?
Red wine definitely seems to help ease the stiffness the following morning.
One time I was away visiting friends for 4 days and although we didn't drink to excess, we did drink a bit every night - the next week my liver enzymes were up. My tests are normal as long as I stick to guidelines and only drink one or two nights a week.
Sounds very similar to me when first diagnosed. After the steroid IM wore add after 10 days I had a course of steroids 20mgs daily for a month then tapered off 1 tablet every 2 weeks to eventually none..
I started on 15mgs of MTX when diagnosed and went up to 17.5 then 20, then eventually 20 sub cut (injections) at 9 months post diagnosis. My folic acid has also been increased from 1 day to 3 and recently to 6 days due to mouth ulcers. Other than that no side effects.
A Month later I got put on hydroxy too following a consultant f2f review. He did say if he had see. Me in my first appointment I would have been put to MTX and then Hydroxy a couple of weeks later. Given my numbers he does expect me to end up on biologics.
Each medication change made the pain slightly less, either less painful or fewer joints affected. My heel / feet we there worst for the longest. I didn’t even know a sub talar joint existed before all this.
3 months after being on the MTX injections and hydroxy it was like a switch was flicked and all round so very nearly back to before it all started. I am now in low disease activity and within touching distance of remission. The only time I was better than this was when on 20mgs of steroids. So I feel am in a very good place.
I’m now 16 months post diagnosis and apart from short bursts of pain limited to one or two joints at a time I’m good. I can do gardening, decorating without triggering any significant flares.
One thing I have never experienced, which makes me very lucky, is the fatigue for RA in the MTX fog. Long may that continue!
Wish I would have seen this sooner.....the mention of heel pain is an issue for me. I too am on methotrexate. At 25 mgs injection, most things were under control. For a flare, I would do a prednisone 15 day course. I have five different autoimmune disorders and MTX the most broad. After monitoring my blood work, my liver enzymes were through the roof. We dropped to 15 mgs injection but added LDN 5mgs to the mix. LDN changed my entire outlook. In regards to your heels, it may be something different than RA. My Rheumatologist explained that it is more likely due to hypermobility or more specifically for me, Ehlers-Danlos. My father has it and he can only wear backless shoes. I am the same. Eventually he grew bone spurs as well. It is worth asking your doc if the heels might have a totally different ddx. I am to see an orthopedic specialist for my heel issues only. I too mostly need to wear Birkenstocks to get support for arches and no pressure on my heels. My Dad take 600mgs of Gabapentin twice daily for his heels and has had steroid injections with limited success. I am allergic to all pain meds except tyelonol so am always looking for off label support. There is where LDN came in and truly saved my daily sanity of pain.
I don't know if this reply reaches everyone who has commented, but I just want to say a huge thank you to everybody. The insights and experiences are so useful.
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