Methotrexate not working

[HevJ]

I was diagnosed with RA almost 5 years ago. Put on methotrexate and hydoxychloroquine which I was taken off. Methotrexate worked well for a couple of years. I then started getting sporadic flare ups over the last 18mths, shoulder was the worst - it felt dislocated, hands and neck.

They then tried sulphasalazine with the methotrexate , which after 3 weeks had a bad reaction too. Then in Sept leflunomide which 2 weeks in sent my liver enzymes rocketing. I was then taken off all meds to let my liver recover.

In the meantime while off the meds I had an op to remove a Morton’s neuroma from my foot. This had been diagnosed 6 years ago and had grown really large.

Over the past two weeks I’ve been assessed for biologics and found out today from my RA nurse that I am good to go.

I also had an orthopaedic app to follow up my op. Histology determines I did not have a neuroma after all - it was a very large rheumatoid nodule. This has concerned my orthopaedic consultant. Why did it not get picked up before and then why did it not respond to meds? Also my other foot is showing similar symptoms.

My questions-

Has anyone has rheumatoid nodules removed surgically? Have they grown back?

Does anyone suffer with them at the base of their toes?

And I would love to hear from anyone on biologics. Do you still take methotrexate alongside?

I haven’t been on this site for many years. When I first joined I remember someone saying - we only appear when things are not going well....

I really would love to hear from fellow sufferers.

Heather

[SoulmanPaul]

Hi Heather

I've no experience of Rheumatoid nodules so can't comment. However I've just started a biologic (Humira) and am also taking a reduced dose of Mtx (7.5 mg). Ive only had one jab so far so too early to say if it's the answer but I'm very hopeful.

Paul

[HevJ in reply to SoulmanPaul]

Hi Paul

Like you I am trying to be very hopeful! I’ve been told I will start Benepali. I am currently back on 20mg injections of methotrexate (having been off for the past 7 weeks) and when I spoke to my nurse she said I will continue with it! This surprised me as when I saw the consultant the week before he led me to believe it would be just the new one... maybe they will reduce. I hate putting these drugs in my body - however if it can improve my quality of life bring them on! 😁

[Izzyowl]

Hi Heather. I wonder if I too have a nodule or neuroma between two toes on my left foot. After a while walking, they flare up and I have to remove my shoe, and rub my toes until they feel better. Sketchers shoe shop has done very well out of my shopping trips this year. They are sometimes the only shoes I can wear ! As for meds...I'm still trying to get on the right dose of Methotrexate that doesn't crash my lymphocytes. This RA is so complicated to treat isn't it.

[HevJ in reply to Izzyowl]

Hello Izzyowl

What you described certainly sounded the same as my symptoms. I live in sketchers as they give comfort to the feet.

Initially I kept getting pins and needles, which like you I would remove shoe and massage. This was indicative of a neuroma - my nodule had attached to the neuroma hence the similar symptoms. The scan showed it had grown so large that it had to be removed. My other foot has the pain just not the pins and needles.

Oh the RA and meds is so difficult. When the methotrexate works it’s fantastic- however when the disease starts modifying itself and not responding as it did it really is a long slow process to get it right!!!

[Hidden in reply to Izzyowl]

You are not alone. I too have turned to Sketchers. They seem to be all I can wear. I do have one pair of New Balance that are still comfortable, but that is it. My feet still swell up everyday and come bursting out at night, but at least I can still walk in them.

I started MTX this week. It made me tired for a while, only 10MG to start, but so thankful I did not have stomach upset. I was just diagnosed with Inflammatory two years ago September, and then DX'd with Sero-positive RA this past September. I was disappointed to learn it can take so long to work. I can hardly believe how much worse I got from September to now.

I just want to wish you the best and hope we both do well on our MTX.

[Izzyowl]

I've got a podiatry appointment in a few weeks so I'm hoping I will get sent for some diagnostic tests. If it can be removed by surgery...the sooner the better ! I want to get back out running !

[HevJ]

That’s exactly how I felt. I gave up running 2 years ago when it became too painful the following days. Then over the summer it was so painful when I went out on the bike I just wanted it out!!!

The ultrasound scan was very good - it clearly identified the shape and size, which when I saw th consultant had said it was pretty much as described!

He said in the new year I can try running - well until he discovered it wasn’t a neuroma! I am hoping meds will calm my other foot and running can commence - never distance again as that is when it started doing lots of long runs in training for a marathon!

Good luck with the scan. Keep me posted as I am interested to know how it goes.

[wishbone]

I have a few nodules scattered here and there, the largest on my left elbow, which was the size of a grape for many years but has recently shrunk to about half the size. Apparently I have a couple on the soles of my feet near my toe joints, which along with deformity to the joints cause corns to form so I need to go to podiatry on a regular basis to have them shaved. I once asked my rheumy about having the one on my elbow removed but she said it was best left alone unless it was troubling me a lot. Think I recall her saying that the wound can take a long time to heal if I have it removed.

[HevJ in reply to wishbone]

Oh my... are you in agony with your feet? Mine was so uncomfortable and certainly gave all the signs of a neuroma due to attaching to the nerve. My orthopaedic surgeon did say he would now monitor healing and I see him again in 3 mths. My other foot I am now sure has a nodule, I can feel a lump forming under the skin.

The one on your elbow - was it external?

I’ve read not everyone with Ra gets them. Until yesterday I was oblivious of them...

[wishbone in reply to HevJ]

Am I in agony?...well not quite, but yes my feet can be very painful hence I have problems walking any distance.

For whatever reasons my rheumy has never shown a great interest in my feet even though they have given me a lot of trouble over the years. Apparently she's not on her own as a lot of rheumies seem the same when it comes to feet. One thing she did do was send me to podiatry to have custom made insoles fitted and they have helped a little.

If what you mean by an external nodule is one that's just covered by skin, then yes that is the case with the one on my elbow. Funny things are nodules, most of mine formed when my arthritis was under relatively good control with RA meds..ie..enbrel and methotrexate. Since stopping all immune suppressing meds more than two years ago the one on my elbow has shrunk significantly.

I can understand your concerns about taking benapali and methotrexate together. I was like you..the less meds I could take the better! When I started enbrel I was already on methotrexate which my rheumy wanted to continue. With enbrel working wonders for my RA from the off, after a month or so I asked about stopping the methotrexate. Unfortunately I never got to find out what would have happened if they had stopped it as I got hit for six with a nasty infection and have not taken any immune suppressing meds since. Anyway, back to the point - I think a lot of rheumies like to back up certain biologic meds with methotrexate, at least that seems to be the case with folk on enbrel. If you are really not happy taking both meds together then it might be a good idea to do as I did, and if you see a significant improvement to your condition after starting benepali, then there's no harm in asking about stopping the methotrexate. You can always go back on it if things start to go downhill.

Apologies for the long post...I do tend to hit ramble mode once I get going. Just hope you find something of interest.

[HevJ in reply to wishbone]

Thank you so much for your input. Certainly has given me more questions to ask my consultant. Interesting what you say about the feet. When I see my orthopaedic consultant in March I am going to ask if I can stay under his care!

Am sorry to hear that you had to stop your meds. Any chance of re starting them? And really fascinating that your nodules decreased when off meds! That was a question orthopaedics queried - why the nodule continued to grow while I was on meds!

I now hear from a couple of folks who have managed to reduce the mtx- I know when I was off it for a few weeks my head was certainly much clearer. I keep being reminded by a friend who works with teenage cancer patients - it’s a strong drug, of course it will make you feel tougher at times!!!

I do wonder if I was to follow a strict diet (I’ve been reading up on a clinic further north that claims to reduce RA) if it would make a difference... I’ve tried the apple cider vinegar!! Yeuk!!!

All the best with your current situation. Here’s to a happy 2018 for us all.

H x

[wishbone in reply to HevJ]

Unless the drug companies come up with something new that doesn't lower the immune system then there's no chance of re-starting meds as the increased risk of getting another serious infection will be too high.

Should have mentioned in my previous post that although the nodule on my elbow reduced in size while off meds, I did have a new one form on my lung which has been monitored in case of any change. Back in June my chest consultant said that he's quite happy with it and said that no further scans are needed....thankfully!!

All the best with your situation to.

Take care

[Beviejon1]

I had a large RA nodule removed from my Achilles tendon17 years ago.It was done at the same time I was having foot surgery.,It was so large surgeon was afraid the Achilles would rupture.Never grew back.

[HevJ in reply to Beviejon1]

Wow that’s fabulous to know. I think maybe I am honing in too much on the negatives...

thank you.

[amanda-dunmow]

Oh how relieved that I am not on my own with foot trouble!

For the last six months I have felt that I had a smooth pebble in my shoe when walking. And a thickening of the sole when walking about the house without shoes. The middle toe is also visibly swollen, but when explaining this to the rheumy nurse she wasn't very interested at all.

I am very inspired by the way you talk of running and cycling. Will I ever be able to run or cycle again - should I be expecting the medication will get me back to that level of movement?

[HevJ in reply to amanda-dunmow]

Hi Amanda

Yep you are describing exactly how mine started off. As it was attached to the nerve and before RA diagnosis it fooled everyone. As you say mine felt like a small pea, then marble and the past 6 months a golf ball in my shoe! I could never go without shoes. Summer was great as I wear Birkenstocks which gave good support. My heels were banished to the back of the wardrobe.

Saying that, after RA diagnosis almost 5 years ago and meds introduced I went back to running, cycling and swimming. Running I stopped over a year ago. It was only this year that my foot got painful in my bike shoes after about 8 Miles - that’s what spurred me on to have it removed.

Am sure once your meds are sorted you will be back to doing what you enjoy. I am still hopeful I’ll be back on the bike and in the pool sooner rather than later!

[James53]

Hi

Previously on Sulfasalazine and methotrexate but now only on Benepali a biological biosimilar drug. Meds are injected weekly. Works a treat. Best med I have had for my PA. transformational in fact

[HevJ in reply to James53]

James that has filed me with great hope. I look forward to starting mine.

Thanks

[nomoreheels]

Hiya Hev, long time no see! Pleased you've been doing ok'ish, you're proof if it were needed that those doing well don't use the site but we're here when they're not.

Your med journey mirrors mine, MTX added to HCQ then HCQ stopped. SSZ added & stopped then LEF added & stopped, all the while continuing on MTX. But that's where our similarities end, you're to start biologics & I'm to stay on MTX & had to stop tapering steroids until my next appointment in May but I don't think I'll ever be considered for biologics unless or until I re-start tapering steroids & (hopefully) start flaring as I have before. It's daft we have to get worse before being considered for them isn't it but as I can't go above my current MTX dose (similarity again, liver levels rocket) I'm not sure where we'll go from there as biologics have never been discussed.

Sorry to hear about the nodule, I have problematic feet but thankfully no ops. I hope it doesn't grow back though I have heard if them doing so unfortunately.

Anyway, I was only popping by to say hello! I hope you see improvements quickly with your new med, you'll have to post again when you know which one & receive more help & advice. It seems more are starting on biosimilars as patents run out on the original anti-TNF's. I think they can be coprescribed with MTX but your team will discuss whether it's necessary or not. It might be useful to bone up on Benepali (biosimilar of Enbrel or entenercept) or Remsima or Inflectra (biosimilars of Remicade or infliximab), I think there's another but can't remember which it is. There are also the JAK inhibitors too, they are a completely new class of med & I think it's Xeljanz (tofacitinib) & Jakavi (ruxolitinib) that are currently licensed for RD in the UK.

I hope whatever your Rheumy thinks suitable does work for you & them maybe you'll be able to get in with life & not need us here, though it would be nice if you could pop by to tell us how you're doing, it's gives hope to newbies & those struggling.

Take care. x

[HevJ in reply to nomoreheels]

Greetings NoMoreHeels... lovely to hear from you...

Life had been very good on the MTX until jan of this year. I kept getting mini flare ups and my shoulder was the main issue. I also managed to tear my rotor cuff during a bad flare up. They tried me on the SSZ and LFL and I had really bad reactions. It was then they mentioned I would be considered for biologic meds if I had more flares. Needless to say they did and luckily I saw the consultant rather than nurse. Despite it not showing in my bloods he could see the physical signs on my body. He made a case for the meds and started assessment just before Christmas.

For you how come me the biologic meds have not been discussed? They were first mentioned to me when they started me on LFM - reassuring me if that didn’t work there was other stuff out there. Dumb question - but what do you mean tapering steroids? I’ve only ever had a steroid jab (and the last one a month ago hasn’t made much difference). Are you meaning the tablets?

You know I’ve just been gettin on with life, good and bad days. Coping on my own. It’s not til I came back on here it was such an amazing relief to talk to others in the same boat.

Keep in touch xx

[nomoreheels in reply to HevJ]

I don't know to be truthful, it's an odd one. I'm not sure but it could be because I respond well to low dose oral steroids & my DEXA scans show I remain borderline for osteoporosis (I'm also prescribed a daily calcium/vitamin) so she sees no great risk me staying on them. Long story but when I returned to the UK & signed up with my Rheumy on my list of repeat meds I had from Spain was oral steroids as I'd been having a flare. This was how they used them, a month's course when flaring then stop, not be on them long term. She's kept me on them because those & MTX was keeping me reasonably well controlled. A couple of years in & I was starting to get concerned when I had my second bisphosphonate stopped because of side effects, my thinking was if I wasn't taking those I had a higher risk of my bone density being compromised, but she didn't think my GP's suggestion of infusions was the answer. Then she went on extended leave & a registrar thought I wasn't well controlled so prescribed SSZ. I thought it reasonable to ask to taper the steroids as I was on double therapy but he wouldn't ok it without her say so. Then the SSZ was stopped & I started LEF, same thing, asked to stop steroids & refused without my Rheumy's say so. Since she's returned so I asked her & she said yes so I started to taper them but started having neurological issues which I didn't have before the LEF. I had nerve conduction tests which proved the nerve problems so she agreed I could stop the LEF but to stop tapering the steroids. I've since had more nerve conduction tests plus electromyography which showed improvements so I'm staying off the LEF & she'll review the steroids again at my next appointment in May. So, even though I've tried 4 DMARDs because of the steroids I'm kept sort of controlled with those & MTX so she's never mentioned where we go when I next start tapering if I flare before the end of the taper. It remains to be seen what happens as I can't increase my MTX dose due to liver issues. Bet you're sorry you asked!

Tapering means reducing the dose, if you've been on steroids for a long time or at higher dose or for longer than 3 weeks we need to reduce the dose slowly over a period of time. In some cases it may be a shorter length of time, we should follow our Rheumy's if GP's recommendations. This is because if we don't we risk adrenal insufficiency/shock. When you have been taking steroids for a longer time your adrenal glands no longer produce cortisol, the steroids have taken over the body's natural way of producing it.

[HevJ in reply to nomoreheels]

Happy New Year.

Oh my that sounds very complicated for you. The registrar suggested oral steroids to my consultant and he refused straight away, so I’ve only ever had the injections. Over the past years they’ve given me 3 months amazing relief, however this time my flare up got worse. I don’t know if it worked or if it has stopped it from getting much worse than it is!!!

When you taper do you notice the difference? I don’t know if you feel the same but changing and trying the meds over months is really tough going. Our body goes through a lot. On SSZ and LEF I was so ill. My poor liver really went into over drive with the LEF hence why they took me off - only being on it 3 weeks with the MTX I felt a difference, however due to the reaction my consultant wouldn’t even go back there.

As much praise I have for the NHS (and I work within it) I do feel it’s a postcode lottery!

Have you asked about next steps and meds ? Especially as you can’t take the higher dose of MTX. I had to go on to injections as orally anything above 15mg made me so ill. However they have kept me at 20mg and my consultant says no point in upping it.

Do you have regular flare ups? Do you think anything specific starts it off?

When on the MTX was would get small flare ups which when I look back were nothing compared to this! But then I have been only been back in MTX 2 weeks after being taken off all meds for 7! I just hope healthcare at home make contact soon!

X

[Mimi21]

I have been on the biological drug Cimzia for 2 years with methotrexate which was at 20mg but has slowly reduced and earlier this month put to 15mg as I've been doing so well. However, I'm currently having a flare in my hand and wrist, more than one joint and it's been going on for 3 days which is unusual. I'm putting it down to possibly some spicy curried soup I made together with the calm after the Christmas rush, and hoping that it will calm down. Good luck with the biologics :- I did ask the consultant whether I would ever get off methotrexate altogether whilst on cimzia and she said it was unlikely .

[HevJ in reply to Mimi21]

Hi Mimi21

Thanks for that. I am sorry to hear about your flare up. I do think food and stress play a part in my flare ups. I hope it eases sooner rather than later!

I think most folks are saying they have stayed on the MTX with the biologic.... it would be lovely to reduce but if it gets me a better quality of life I’ll take it 😁

[medway-lady]

I don't suffer with RA its in remission but have had Morton's removed twice as it regrew. That is rare but happened to me and had MRI's to prove that was the case. I've also had a few injections in them to kill pain but recently had an operation to remove a bony outgrowth and straighten my foot with ligament release so now have 2 beautiful straight feet and both are painfree. I have only had a problem with the left foot as my right is unaffected. I also take Lefludamide which works well but do have some RA lung and blood problems. So can't win them all and so I hope that helps.

[HevJ in reply to medway-lady]

Am glad to hear your RA is in remission. Thanks for your input.

Did they send your neuroma away for testing? By all accounts until yesterday mine was a neuroma. The consultant said it looked and felt like one, given that it was quite large. The histology report really surprised him.

Oh I bet you are so happy now with your feet! That’s great. I do look forward to that day I can say that!!!

[medway-lady in reply to HevJ]

Yes they did both times it was operated on. Have you been offered the injections to relieve pain, they do work for a while and in my case iinsoles made mine worse because the RA had started to turn my foot. I was in agony. x

[HevJ]

Yes I had an injection a few years back. It didn’t really make any difference. However will ask again for my other foot.

The orthopaedic surgeon suggested I wear my insoles again. I thought the I had said goodbye to them with this op!

X