Methotrexate and waiting : Hi all, Started taking... - NRAS

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Methotrexate and waiting

Hi all,

Started taking methotrexate 3 weeks ago (15mg) the Rheumy specialists have told me it's 12 weeks until you feel a difference but how do you cope in the meantime? I'm the worst I've ever been, struggling to walk because my RA effects my knees and feet, I'm stressing about work and living off painkillers which barely touch the pain. It's frustrating putting up with pain and methotrexate side effects when there's no benefit.

Thanks

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Didn't they suggest giving you either a short course of steroids or a steroid injection in your knees to tide you over? Perhaps you could ring and ask about one?

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They didn't suggest it no but will definitely be calling them, thank you for your advice

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I was the same. Knees 5 times normal size. ..red.hit. Ankle rhe same. Couldn't bend my knees. Agonising pain. Had to sleep sittibg up and lucky to get 2 hours at a time. This webt on for 2 months. Finally hospital fir 3 weeks. Steroid injections didnt stip pain and aspirations only lasted about 4 days. I too was on high doses of opoids that barely touched the pain. Only thing that finally gave me relief was prednisone tablets 50mg then gradually dropped. They also added 20mg methotrexate. Made me sooo sick..hair fell out and it didn't do a thing. I stopped it after 6 weeks. Then leftluromide arava..didn't help.

I did stop smoking. .thatvhas helped heaps. Now taking 5mg prednisone. Got down to 3.5 but wasn't enough. Just had an ankle replacement. No flares. Im sero negative RA. Thats my story. I really feel for you cos the pain from my knees was unbearable oh and shocking brain fog. Me personally im staying away from what my gut tells me. I'll drop predcafain soon and see what happens. From what i learned over the past 12 months of hell is prednisone works and pretty quick. Like i said high dose for 5 days then tapered down gradually.

I hope you get some relief soon. Blessings xx

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Sorry about the typos

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Hi, I remember having a depot steroid injection when I was having difficulty with inflammation at the beginning. Do you have a Rheumatology appointment soon or a nurse contact number to let them know about the difficulties you’re having at present? They may then offer something that could help. Although my nurse team at rheumatology may not make contact the same day, they do get back to me. Hope you get some relief soon. Take care. Candy

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Thanks Candy, I'm going to call them first thing Monday morning as my appt isn't until July now, did the depot steroid work for you in the interim?

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The first one did a little, and the way she explained it to me was: “think of the depot as a sponge and the inflammation as water. A sponge can only absorb a certain amount of water”. I can’t remember how long I had to wait for my next one, and that worked really well. Hope you get some resolve soon. Candy

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Yes, I had steroid injections too for that first period until the drugs really started working.

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Did they relieve your symptoms helixhelix?

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Absolutely! Turned into superwoman overnight......that’s the downside of steroids in that you can overdo things hugely!

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Do telephone your Rheumatology department helpline and ask for steroid injections and or oral steroids to be given to you as soon as possible, while you wait for the MTX to work.

I could not have managed without them; they have made it possible for me to continue to live independently whilst having very aggressive and active RA. I hope you will find they make a huge difference to you, as they have to me.

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Certainly ask for the steroid injections as they do help. I've had 3 from January to tide me over until methotrexate kicks in. On it now 3 months but still having joint pain so my dose has been increased so hopefully the higher dose works soon. It is frustrating having to wait for this medication to work but hopefully worth it in the end! Do make the call on Monday as July is just too far away, I get about 4-6 weeks out of my injections. Good luck.

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It’s steroids all the way!!

Ali

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Hi - sorry to hear of your pain. I too am in excruciating pain and been off work due to this. My Rheumy told me to take Ibuprofen whilst I waited 8 weeks for new biologic. Prior I was on high prednisone but he didn't want me to go back on it hence he said Paracetamol and Ibuprofen. The way I feel though I may just have too opt for prednisone. I have to get back to work Monday 😏 I pray your pain subdides swiftly.

I should add I am going to try acupuncture.

Take care.

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Have you thought if asking for a one off long lasting Depomedrone or Kenalog steroid injection rather than getting hooked on Pred?

Talk to your rheumy nurse & get her to ask you rheumy.

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Hi AgedCrone - I am due to see a private rheumatologist next week, shall see what he recommends - I shall ask about these too. Hope you are doing well. Thanks for advice. Hessie

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I’m doing well on Rtx thank you...in fact had last infusion in December & rheumy has said I can wait until I feel I need the next infusion instead of having it every 6 months....so sort of in remission....a few aches & pains which I hope will settle soon.

I’m a bit apprehensive as I know I will have to wait at least a month to get an infusion prepared & get an appointment in the clinic if I do need it, but I guess a Depo injection will tide me over......I’m grateful I can’t take Pred as it is so effective, but so really difficult to get off.

Hope the rheumy you see next week will give you the long lasting jab...I find they can last up to 10/12 weeks.

Good luck.

AC

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I hope you get better soon Hessie5 thank you for your reply. I've also thought about acupuncture (I'm big into alternative healing alongside medicine) I'd be really interested to see how you get along, if you get chance to write a post about your results please do x

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I had acupuncture and Chinese massage before I was diagnosed with RA. It did help, but you have to keep having it regularly and it was running too expensive for me. It was nice to have some 'me time' and it had a relaxing effect. I would have it again if I could afford to.

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I am in my 12th week of methotrexate injections. I've been on low dose prednisone (10 mg per day) the whole time, though lately I'm down to 5 mg per day because the methotrexate is finally building up enough to provide relief.

I definitely felt like I got worse before feeling better, sometime between the 10th and 12th weeks. I'm not pain free but am hopeful. I don't take any painkillers and needed the prednisone to cope with the sudden worsening of inflammation in my knees and then in my hands, wrists, elbows, and shoulders. At this time I feel like I may be able to wean off of the prednisone, finally.

I hope this information helps.

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Thanks for your reply, this has given me hope 🤞🏻 I hope you're pain free soon

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I'm on 15mg weekly oral mtx and 10mg daily Prednisone. I go down to 5mg pred in a week. Thanks for sharing your experience. Creaky fingers crossed!

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Hi. Firstly I sympathize with pain. It actually took 22 weeks for it to work for me. I did have to keep at the steroids. I stayed in methotrexate for two years. Now have tried Enbrel which did nothing and now on Humira. I’m getting relief from Humira but not as much as I’d like still on 50 mg of steroids hopefully I can wean off steroids. It’s a long long battle. Good luck. 🤞

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Hi Ninassven - is that 50mg of Pred? Is is not being tapered if so? Thanks

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Yes I’m tapering off about 5mg a week. It’s a long battle to get the correct dose and medication together. Good luck 🍀

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That is correct Sarah it will take 12 weeks approximately. But they gave me a steroid injection n the beginning to control the pain.

Hope your pain goescdown sooner

Joya

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Ask for a steroid injection to see you through.

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Ring yr rheum team.and ask for a steroid injection. They sometimes give one whilst the drug is building in ur system

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I was given a steroid injection in my bum until my mxt took hold but as others have said I’d be ringing or email my Rheumy my nurse. They will be someone who will get back to you on it. Mine are brilliant at that.

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Forgot to say hospital have even asked my doctors to give me one🙂

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Hi I had steroid injection before starting MTX worked wonders . Getting headaches weekly with the MTX now awaiting injections instead tablets x ask for steroid x

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Hello - I’m in exactly the same position and they’ve given me a systemic steroid injection to tide me over until the methotrexate takes effect. Hope you feel better soon 🌸x

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I've been taking it for 6 weeks with steroids it's the best I have felt in years x

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Me too! I've never felt better!

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years after diagnose flared then got taught to inject legs - love - online research says gets into body 70 % better than pills - love

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I was started on 25 mgms Methotrexate once a week. But totally relate. It was 3 months until I noticed any benefits and the pain was terrible. Trying to hold down a job was so hard because you didn’t know from one day to the next if you’d have to phone in sick or not. I had changed my diet also at that time(out of desperation) by cutting out milk/ milk products and sugar which was suggested to me. Also started on CBD oil. This combination threw me into remission for a year. Good luck with your journey 🙏.

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Maybe a prednisone taper would help boost the methotrexate? I have been on 15mg of methotrexate once a week for 4 weeks. I just had labs done and am waiting for the results to see if I can go to 20 mg once per week. I have not really had any side effects from the methotrexate, which I take on Thursdays with food (sardines and arugula). I have taken it at night before bed and other times in the morning before leaving for the gym and work. Other than being a little fatigued for a few hours, which I don’t notice if I go to the gym, I have not noticed any side effects from the methotrexate. I contacted my rheumatologist this week because my left ring finger has been inflamed for 4 weeks and sometimes bends painfully. It gets worse than subsides, on an off, day in and out. She thinks the methotrexate needs a boost and prescribed a prednisone taper of 20mg for 3 days, 15mg for 3 days, 10mg for 3 days, then back to 5 mg daily, which is working already on day 2! I am really hoping the methotrexate/ prednisone works. If not, they plan to add enbrel after I am on the methotrexate for 3 months. I have multi-site aggressive RA with erosions on the right foot tailors bunion. I occasionally have mild pain along the edges of my hands and feet, and in my right thumb base. I was diagnosed on February 13 and put on a course of prednisone right away, which relieved my symptoms in their entirety after about 10 days! I took 20 mg daily for 1 week, then 15 mg for 1 week, then 10mg, then 5mg daily. Prior to prednisone, I had terrible pain in my feet, like the bones were coming through the soles, and I had swelling in my hands and feet such that my rings were too tight to wear and I had to go up a half size in shoes. At 5 mg, some symptoms began again, such as the swelling in my left ring finger and occasional minor pain in my right thumb base and edges of my feet. Other than that, on methotrexate I remain symptom free, I can wear my rings easily, and my shoes are comfortable again. I am from the U.S. and this is my first post.

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Thanks so much for sharing. I get the exact same pain in my feet that you describe, it feels like my skin is going to split and the bone pop out, it's awful. Best news is that they put me on the steroids and they worked instantly, best I have felt since 2017 - I'm going to update everyone as their advice has really helped x

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I did yoga althought even sitting on my heels was so painful that I almost cried. I also went on this type of stepping machines where no joins are involved but only your muscles and also swimming. I think exercising helped me a lot. When Mextrax finally kicked in it was amazing - no more pain! I took it for two years and I'm cutting down now, I'm on the minimum dose and I only take two tables of 2.5 mg

Good luck!

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I've been on MTX 15mg for 16 weeks now and it's still not working as well as I hoped it would, just a slight improvement so far. I've also had a lot of nausea and gut issues with it so I'm not a happy bunny ☹️ Will be seeing rheumy again in August as I wanted to give taking the tablets a good try, she said if still not good then to try the injections or another DMARD. I had a Depot steroid at the beginning, I felt the best I had been for ages but when it wore off all the aches and pains crept back again. I hope it all works out better for you!

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I have been on MTX since last August and I can say that it's only been since Christmas that I have felt it has been working well. Steroids are a good short term solution in the interim.

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I was given 2 injections one on each bum during my first treatment. Thereafter, I was given mtx 15 mg and Prednisolone 2.5 mg. When mtx started to work on me after about 6 months of treatment, my rheumy wanted me to cut down prednisolone slowly.

I am seronegative RA, I was declared remission after about 1 1/2 of treatment. Yes, the process was very painful and all kinds of side effects that I was told to tolerate for so long, which I did and I was/am back to my normal life after that. My joints are in good order so far, I hope I will continue the same.

Exercises were painful, but I did them twice a day consistently as instructed by my physiotherapists.

Above are my own experience, I hope it helps.

Amy

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Update- I want to thank everyone for their advice and hope they've given me!

I was given Prednisolone 3 weeks ago and oh my, it worked instantly and it's the best I've felt since August 2017! I feel normal as normal gets!

Despite being on the steroids I still had inflamed joints and my MTX has been increased to 25mg which I'm upping gradually over the next couple of weeks. Fingers crossed, the is the beginning of feeling better!

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I have been on methotrexate now for over 3 years and never had any symptoms. How are you doing now?

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My main symptoms are nausea and fatigue but these are beginning to ease, fingers crossed it goes completely 🤞🏻

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How are you doing SarahJane? notice anything yet? For me it is very very slow acting. Some days I think it's working and others I am not so sure. my Rheumy told me it was actually 3 months for full effect.

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I am still nausea inflicted and really tired and then suddenly although I feel like I could drop into a coma of fatigue I find myself unable to fall asleep. I am coming up on my third month in July.

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