Next stage

[Buckybri]

Been on mtx for over 20 weeks and it has got a little better but still having major probs walking and standing up etc , just wondering if the meds work successfully will most of the pain completely go and what happens if mtx does not work . It’s annoying that the meds take so long to work as a year can go by and u have only gone through two sorts of medication

[Pinkypie2018]

It's very frustrating how long these meds take to work. I was diagnosed in February and my rheumatologist told me to give the methotrexate a good 3-6 months to work. However after 7 months I saw little improvement so sulfasalazine was added to take along with the methotrexate. Have you discussed with your consultant if a steroid injection was possible to help you until the methotrexate kicks in? I've had 4 this year and a month of oral steroids when pain was bad. Its very trial and error with these drugs, if you feel your treatment isn't working there is other dmards to try that you need to discuss with your rheumatologist. I always wonder the same if I'll ever be pain free and my rheumy said that's what we're aiming for.

[Buckybri in reply to Pinkypie2018]

I’m on sulfozine and mtx been over a year now and not really much change . I can walk now but I struggle , I’ve had three lots of steroid injections which work for about three weeks but then back to normal . Mtx makes me sick the day after so I’m now on folic acid every day I just can’t see the end to all of it

[KittyJ in reply to Buckybri]

Buckybri in a previous post a month ago you said you’d been on mtx 7 weeks so you are only just coming to the 3 month mark? It’s good you are getting some improvement now, let’s hope it carries on over the following months. It’s hard to say whether you will be pain free, it’s everyone’s aim but it can depend on how damaged your joints are. Inflammation pain should go once your RA is under control so that’s good. If mtx doesn’t work for you there are lots of other meds you can try or add to the mtx. It does sometimes take quite a while to find the right combination but you will get there 😊

[Buckybri in reply to KittyJ]

Thanks , hope so it’s been 14 weeks now , and off to see my consultant in December , You just seem to see a end to all of this it gets u down .

[KittyJ in reply to Buckybri]

It does get you down but take hope from the fact you have seen some improvement. I’m glad you have a review in December, you should know if it’s right for you by then.

[Pinkypie2018 in reply to Buckybri]

I'm the same they don't last for long but a few weeks relief is better than nothing. I guess it would be best to ring and try to get an appointment with your rheumatologist to see what you can try next. I'm grand on the methotrexate but it's the Sulfasalazine I'm finding hard to cope with, but I'm only on it now 5 weeks so I'm hoping side effects ease off soon.

[Buckybri in reply to Pinkypie2018]

Its mad in it , the sulfazine I had no problems with at all but the mtx is horrible to the point that when I take 8 from the bottle I look at them and say to myself” do I have to really take these “.

[nomoreheels in reply to Buckybri]

Do you take your MTX in one dose per week? If so have you considered taking your tablets throughout the day with meals, often helpful if nausea or vomiting is common. When I started tablets my Consultant recommended I did this for two reasons, it's not such a big hit on your body & more of the MTX is retained, so effectively you're getting closer to your full dose. So your 20mg dose could be taken as 5mg with breakfast, another with lunch, evening meal & a light snack sometime before bedtime. That way you're only taking two tablets, it may feel more acceptable than sitting looking at taking 8 tablets at once, with the bonus it could well work better for you. It worked well for me. Do you have a helpline you could ring just to make sure there's no reason you may not do the same, if you prefer of course.

I don't respond to general steroid injections, I've only had two in 11 years, one didn't work at all & the other I had one days relief. Oddly I respond well to targeted ones, had quite a few of those!

Please don't think you’re alone in this, many of us had the struggle you're having in the first months, even years, following diagnosis. If only there was one med that suited all of us & brought it under control quickly. We're not there yet but I do hope for it for those diagnosed in the future. 😏

[Buckybri in reply to nomoreheels]

I’d never thought of doing it that way , I’m off to see my consultant soon so I will ask her . Are you pain free now ?

[nomoreheels in reply to Buckybri]

I can’t say pain free but reasonably well controlled. We're never satisfied, especially if you feel you could be better. Having one day of steroid response showed me the me I was before diagnosis, it was quite a revelation but not really helpful in it made me acutely aware I could feel better than I do, you forget what it was like to be 'normal'! I also have OA & I think if I'm honest that's what the pain should be attributed to even though I take strong pain relief for it.

When you see your Rheumy it might be worth asking if there's anything else she can prescribe, or recommend your GP prescribes. It could be you could find an NSAID helpful, or pain relief, even if it's just until the MTX is working fully. They each have their own way of treating but when I was diagnosed I was prescribed a DMARD, two NSAIDs (one to take regularly & another if I still had pain & inflammation) & a short course or oral steroids to help until my DMARD worked fully.

Maybe start writing a bullet point list of all you wish to discuss with her, the appointments fly by & you’ve a long time between them if there's something you remember you wanted to ask whilst you're on the way home.

[Buckybri in reply to nomoreheels]

I have started to take tramadol but only when I’m at work , it’s awful how much I worry about being able to go to work to provide .

[nomoreheels in reply to Buckybri]

Ah, that's your male psyche going into overdrive! Seriously, you'll probably be at the worst stage, other than pre diagnosis. You've still to become controlled, it's a place we all know about & it's blinkin hard. Patience can be a hard thing to accept when you're as you are but your Rheumy is the one you need to get this across to, she’s the one holding the key to you getting to a point of RD not reminding it's there day in day out. Be honest with her, not that she won’t be aware how you are but still she needs to know, you need to tell her how it's affecting you. You'll get there, even if it means an increase in dose or med change, or an additional med to get you through. Again, you're not alone in this, we’ve all been there, you don’t know how bad RD can be until you have it. 😵

[Buckybri in reply to nomoreheels]

Exactly , I had heard of it before but never took any notice of it , I just thought it was a bit of pain in the joints but like u said it’s a lot more than that . It controls everything. But I do worry about work I’m 49 so a few years left till I retire , I still have a mortgage and it does worry u because at times of this I have been unable to walk and because of that been unable to work it’s a good job that I had a supportive family . Thanks for yr advice .

[nomoreheels in reply to Buckybri]

You're welcome.

[Twitty999 in reply to Buckybri]

When I got to 8 MTX tablets I asked for the Medipen injection instead & it’s brilliant! I’ve been on it at 25mg for 2 years now with no sickness or side effects at all. So glad I tried it 😊 xx

[CagneysMum]

I had to steadily increase my dose of mtx over 6 months and then switch to injections before I felt the full benefit of mtx. But even then it only partially helped. Things didn’t properly get better for me until they added hydroxychloroquin in as well. After about 3 months on both drugs I was almost pain free apart from my shoulders and knees. I had steroid injections in Both of these over the following 3 months...but was then fully pain free and able to use my joints normally. That was 8 months ago during which time I’ve had a mini flare up in my ankles, but that’s back under control now. All good.

[Thewhim]

Hi pls give it a chance I have been on this drug it does take time , but for me it works , I had rheumatoid arthritis when I was 34 I am now 71 and this drug as well as sulfasalazine is the only one for me , now I am not saying it takes it all away but it certainly has helped tremendously, I also have the dose in a injection that way it doesn't make me feel so sick the next day , hope this helps and I wish you well x

[auldreekie2]

Hi Pinkypie, that is the worst part doing the waiting game, to see if the medication works.

don't give up, ive had RA for 3 years and been on lots of different medications, now I am on rituximab, that's a infusion I get at the day unit, just got one the other day.

there is plenty of treatment out there for us, just trying to get the right one.

so don't give up keep fighting.

[Mall]

Hi BUckybri, stick in there, you will get there. I felt the same as you worrying about managing to stay in work pay my mortgage etc. Methotrexate did work eventually, I have had other drugs combined with it, I now have it by injection 25 mgs weekly but had good years on 25 mgs in tablet form. Folic acid will help with side effects. Next time you see your rheumatologist just let go and pour your heart out about how you are feeling as you have done here.Trust them to hear this, I am sure they will pull out all the stops to get you to stage where you can feel confident at work and home. All the best

Mall

[Buckybri in reply to Mall]

Thank you after a week on folic acid this Monday I felt not to bad ( the day after the mtx ) just feel sick a little but not like the previous weeks . And I’m starting to walk better I just hope this is the beginning, what a horrible illness , and people just don’t understand, just trying to get decent boots at work is a nightmare I’m walking 12 to 18 miles a day at work and when I ask for a decent pair that will improve my illness it’s like I’m asking for gold