Oh where to start. Feet have been bad for a few years. Reached crisis point a few weeks ago. Agreed with GP after asking about crutches to take short course of steroids as instructed by rheumatology. They worked within a day.
Had rheumatology appointment, referred to cMATS again, appointment tomorrow, and because I respond so well to steroids she prescribed methotrexate again.
So, I started tapering, started methotrexate within a couple if days and took my final one prednisolone on the third methotrexate dose. Within days the pain started to return. I'm in 3rd week into a new job and because methotrexate needs about 3 months to start to take effect I caved in, in desperation and yesterday re started prednisolone. Took 4and what was becoming unbearable pain in both feet and all the way up to my hips disappeared within about an hour. I just can't take the risk of not being able to walk 😕
My big worry is: given my vague diagnosis what if methotrexate doesn't work at all, after 3 months? What if my feet pain is caused by something else that methotrexate can't help with? 🤔
I think you’ve got to stop trying to second guess what’ll happen if MTX doesn’t work. You say you’ve only had three doses and also been tapering on Pred so your body hasn’t a clue what’s going on and hasn’t had any kind of length of time on either drug. Hydroxychloroquine may or may not be being effective.
You’ve obviously got inflammation of some kind going on and needs addressing and of course you need to be able to walk. If MTX doesn’t help your feet pain once you’ve been on it for a while ( and it can take months to take effect) then your feet may need attention by a different speciality as things go wrong with feet which have nothing to do with autoimmune diagnoses.
Keep in touch with your rheumatologist and GP and if you have continuing problems your doctor can refer you to maybe a neurologist or orthopaedic specialist to address your foot problems independently.
Best of luck and hope you get some answers before too long. Keep pushing for them!
6 years ago I was at the same spot as you are & could barely walk at all!! with pain in my feet just getting worse & had tried every medication offered. My Consultant then arranged an Ultrasound Scan on my feet & the Technician was astonished & called people in to see how much inflammation was showing up in the soles of my feet! I was then immediately offered a 6 monthly Biologic Infusion of Rituximab, along with Methotrexate injections & it was a game changer! I no longer need any pain killers, I do 2 exercise classes in the local pool each week & can now honestly say I have my life back. I really hope this information is a help to you & others.
we’ll the Methotrexate injections started working after about a month but didn’t get rid of the serious inflammation pain in the soles of my feet so I was then given a 7 hour Infusion (at the local hospital) of the Biologic Rituximab which is effective for about 9 months & when the pain starts to return I request another one . Which works immediately. I had to have tried all the other available medications before the Biologic Rituximab was offered though , as it is much more expensive for the NHS. You could Google Rituximab infusions for a little more information.
Hi - sounds like you have a lot going on. Hoping that MXT will be the answer for you. In the meantime if you respond well to steroids is it worth asking for an injection rather than tablets? A steroid shot in the bum has worked well for me and seems to have less side effects than prednisolone.
Oh yes of course - sorry that would no doubt have been useful. I was diagnosed with RA and symptoms, lots of inflammation and high pain levels in feet, ankles, knees, hands. Shot helped to dampen down the inflammation and most of the pain whilst I wait for the meds to start working
I empathise completely. Steroids worked really well for me too and I took them for almost three years as every time I stopped, I’d end up back at square one only able to stare at the four walls because of the burning pain and I wasn’t having it. I used to do quite a bit of public speaking and I wasn’t going to risk losing that income. Eventually, I was given biologics as the rheumatologist finally agreed they were needed and then could ditch the steroids for good. Some people take low dose steroids permanently as they just work.
At the end of the day, you need to do what works for you and what you’re happy with. It’s your life and no one else, not even doctors, can possibly know how you feel day to day. I hope you get some relief as you must be feeling miserable
Did the RA show seropositive on that blood test ? And how was lupus diagnosed, sorry for all questions but Im grasping at straws , not convinced I have just osteo, with such chronic pain every day all over, want to bring up this conversation again with rheumy on Monday,
Honestly? I don't know the answers to your questions. Lupus was diagnosed by blood test and other symptoms. When I was first diagnosed, I went to Portugal for a month. All fine going, wheelchair off the plane when I returned. Pain in knees, ankles, shoulder, wrists and hands. Couldn't stand, and my hands and wrists felt as of they were on the gas hob and couldn't hold anything or do up my clothes. It was zero to severe in 4 weeks flat.
I'm seven years down this road and steroids are still the only thing that really works for me. I've tried seven biologics. I take the mtx it is definitely doing something because I'm worse on the day it's due but TBH I've only been able to say that recently. If you're not having side effects stick with it.
Don't worry about taking steroids, I don't think I put on weight with them and I'm not drinking like a fish. In not a skinny person to Start with ( size 16/18).
I have over the years Been on a constant hamster wheel of trying to cut them down but this week I increased them because I'm so sore, stiff and miserable.
Hopefully you only need them for a short time but in rheumatology short is months, nothing happens quickly.
Like Happy kindagal said it's your life you have to be able to function.
the thing with any drug you do get dependent on them.I have been on steroids for twelve years and any teeny weeny tapering sends me in to drug withdrawal symptoms where I end up in hospital.Can the rheumatologist try you on a biologic along with other RA drugs
Sorry to hear about the pain in your feet Brychni, I know well how difficult it makes everything seem, and how miserable you feel. Methotrexate did eventually help my feet a little, but took quite some time to notice a difference, and to be honest they didn’t settle until I was started on biologics. I still have some issues with them now but nothing like at the start of the process. I think in the meantime as others have said, the key thing is what your Rheumy team can use to support you, perhaps a steroid injection, or if you can take them some anti-inflammatories? I found an improvement with Naproxen. Hope things begins to settle for you soon, sending a big hug 🤗
Hi Brychni! So sorry to hear you’re going through all this. I just wanted to say that I found the higher dose injection of steroid ( into buttock) worked for me and lasted months . I’ve not been able to find meds that work for me yet , but I’ve managed to get through these years with roughly two shots a year . I know everyone is very different and I wish you good luck with the MTX 🙏
Please continue with the methotrexate but ask if you could have the retuximab infusion as well
This combination has help me when nothing else had apart from Steroids, but please be aware how dangerous steroids can be, I ended up in hospital with a ruptured bowl after restarting steroids whilst waiting for my infusion
This now means at this moment I can’t have anything for my RA due to all our meds reduce our immune system
Thank you so much for all your replies. I'm going to post the same on the lupus site as that is part of my diagnosis (apparently).
Today I had a really positive and fruitful appointment with CMATS - wasn't sure what that was exactly but was referred by rheumatology. Turns out that it was mainly about assessing surgery for the fibroma on my left plantar fascia. However, it was the same podiatrist who sees my daughter about her serious hypermobility.
Unlike my appointments with rheumatology where I look like a rabbit in the headlights and forget all the questions I have, I gave a full description with time line and asked a zillion questions.
Turns out that I have some inflammation and bumps on both achilles tendons, the fibroma and bursitis on both soles of feet especially the heels. He was very thorough and patient and answered all of my questions. I explained I was worried about the methotrexate not working and I that it could be overkill in the absence of even knowing what was wrong with my feet. He said the tendons can be an age related thing - I'm nearly 54 - and anything to do with achilles will travel all along the plantar fascia which is now believed to be one and the same thing. I have awful pain where the tendons join the base of the big toes and this and the bursitis are associated with things like RA (he didn't mention lupus but I assume it's also the case). So this has given me some peace of mind that the methotrexate is worth trying at least.
For anyone interested in the treatment: it is going to be Shock Wave Therapy which is, apparently, very effective but quite painful but I signed the piece of paper as anything is worth a go. This will be used on the fibroma and on the bumps on my achilles tendons. I'll have some more imaging first and then the procedure will probably be in January.
Would love to hear from anyone else who has had this done - even negative! Don't worry I can't be put off 😀
I do not have serious problem as you seem to hv. I. take omnacortil 5mcg. Per day. Not injections. When I started tapering the pain started back and my doctor advised me to go to 5mcg again. So far it seems to be working .
When you take prednisone your sugar levels go very high and need to be controlled. I assume you are doing it.
I am not on methotrexate as I cannot take it due to some other issue. I have lefra 20.
I can’t advise you much on this.
Test your sugar levels and keep them in control. How much of prednisone is ok depends on docs advise.
Well….methotrexate can take up to 6 months to start working ….so I would have a word with your rheumy nurse rather than self prescribing more Pred.
Whatever symptoms in your feet made you think you needed crutches? Ask your medical team what is wrong with them, …& let them prescribe some treatment.
Yes we all know that feeling…….what do your rheumy team tell you is the problem…they surely aren’t expecting you to just “wait & see” if the Mtx will suit you….without explaining the Pred dose you should take…or adding something else?
Have you seen a physio or tried different pain killers? These days of course rheumy consults are so brief……..it is very difficult to be heard.
Because I respond so well and quickly to prednisolone she said. I suppose that all my disparate antibodies amount to something that can be tackled by methotrexate. The foot person confirmed this yesterday saying that the bursitis was typical in RA and inflammatory arthritis, and I suppose lupus, by extension. The rest of it, fairly typical of my age - but aggravated by the 'underlying condition'. The bursitis is the most painful and debillitating and painkillers don't touch it. Not even etoricoxib.
when I started on methotrexate there was some improvement in 3 weeks even as the dose went up, I think it is just much longer before its full effect is seen.
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