Well I'm on my 5th week of being put on the highest dose to see if it helps calm this massive flair up .
And even on the highest dose ! Nothing! No signs of it calming things down.But the thing is I always get some side effects on the day i take them and was worried that on the highest dose I was going to get more .Now here's the thing, absolutely nothing no side effects it's as if I have not taken them. I have been on it for 2 and half years now so I'm wondering if it's just stopped working , as I'm still of work sick and still house bound its with these knees of mine .Anyone think the same ? Seeing my consultant Wednesday what should I say to him should I push for different meds ? Or course of steroids? As can't carry on being off work, and unable to work , function , live life.
Very fed up Dee xx
Written by
Denise64
To view profiles and participate in discussions please or .
Well, there are some who think MTX just stops working but that's not been my experience in 7 years of being on it though I am beginning to think that it becomes less effective over time as it is not quite holding me at bay of late & adding SSZ hasn't worked. The other thing is the disease can change & it's different for each of us so if your increase hasn't controlled the flare then maybe it's time for a med review but your Rheumy should be able to determine that.
Are you in full joint flare or is it centred on your knees? Just wondering if there's something specific going on & it's time for some imaging done on them?
At least it's good news side effect-wise but if it's not doing to the job it's not a huge bonus is it Dee? Do let us know how you get on on Wednesday & I hope your Rheumy's receptive to your concerns. x
Yes I'm not sure what they will do, and I'm awaiting MRI scan on knee and had x rays done which is taking for ever for results to come back. I'm just so frustrated waiting for appointments and so on, but I know it's same for all of us . Thanks nomoreheels
I'll let you know what happens got to get another sick note tomorrow, just want to be able to walk again,as loosing my confidence day by day.
I can't believe how long it takes for results of x rays & such here. When I was under Rheumatology abroad if anything cropped up at review appointments which needed imaging my Consultant would write on a form, give it me & off I'd go down to the department (x ray, ultrasound) while he saw his next patient. In x ray I was fast-tracked (not just me, other patients too, there was a specific area for such instances!) & then went back to the waiting area outside his office & once the other patient came out I went back in. The x ray (or whatever) would be on his computer screen to discuss the results, all in the same appointment.
Maybe it's time to chivvy up the x ray or Rheumy dept? When was the MRI requested, can you ring & ask when that's likely to be? You don't need telling losing your confidence isn't good & then there's work, how long have you been off? Seems everything's being slow but maybe if you chase up a little bit things might start moving, anything's worth a try when you're feeling like you are. x
Guess I'm really lucky,I'm under Guys in London, and any X-rays ,or if needed and a space availiable,ct scan,are done on the day of appointment,I know it's a large London teaching hospital,and the journey can be a pain,but I wouldn't go anywhere else,I hope you all get to see your rheumy's or docs ASAP .x
Me too! it's an excellent system & makes sense. The longer the time of finding out what's wrong the greater the chance of falling out of control & things going awry. x
I know I totally agree with you everything takes so much time , at your appointment this is what should happen, I've been off for two weeks now with looking like more if we have got to wait for appointments. MY MRI appointment has arrived it's not until end of July! Got this terrible feeling that my consultant will want to wait to change meds until he has had that done.I can't wait that long as even after that it will be two weeks before the results of that will come through. So we're talking mid August! Just can't wait that long! It's redicoilous.
It's an easy enough process I don't know why the NHS haven't implemented it. But then I've thought before they'd do worse than send a delegation to different countries & see how departments work & if they could learn from them, if something works & doesn't cost or even if they do if it will free up time & reduce waiting lists sort out how they could work it.
Anyway, that doesn't help you now. I hope work are understanding, you don't need the added stress of worrying about your job do you? Can you maybe see your nurse in the meantime, see if there's anything she can do, even give you a steroid injection or a short course of oral steroids, anything to else the pain, physio couldn't help could they? Might be worth asking. x
Hi Dee I'm exactly the same haven't been able to walk since end April. It's all so frustrating been off work since then. Let's hope we see improvement soon xx
Dee, patience is the hardest thing to come by when your RA is not managed, but in many instances, this cannot be rushed. I have been told that MTX can take 6-8 weeks to take effect, for me it did nothing, even after 8 MONTHS. It was only in combination with Humira that it seemed to work and I attributed the turn around entirely to the Humira, until I decided to ditch the MTX altogether and found myself back in a flare that took me 11 months to get out of (and required a return to high dose MTX).
Try to be kind to yourself and your body - it's doing the best it can for you. Talk to your rheumy about taking the next step with your meds, and if you can take time off work to focus on you, do so.
I know and hear what your saying, but im under pressure to return to work n only getting 87 quid a week just can't survive on it long time , starting to panic.
I was on 27.5mg injections about a year after I was diagnosed but to no avail other than awful side effects. Treatments seem to work for a while with me and then the effects wear off after about a year and I try something new, so probably it is the same for you . Not found anything suitable yet and had RA for almost 7years. Looking forward to Ritixumab or however it's spelt next. So good luck with whatever you try next, I think you need something different.
"Wow", I really pray for you and everyone else that has this awful disease. I've read many many posts from many of you all and trust me, you all sincerely have my heart. It is simply so sad to see so many people suffer with R/A (including me along with all the pain, stiffness, damage etc. At times I feel just like a yo yo. One day I'm up, then the next day I'm down and limp all over the place....go figure???
I hope I can help, even if it's just a little help as I'm not a Rheumatoligist. However, when I go to the doctors office, I always do my homework and research first, and then when we meet I tell my doctor what I want, how much I want and why. We don't revisit x-rays for the most part because usually that's a waste, we all know I have R/A that's been established. We almost always do the bloodwork though because that is always good and needful.
I remember quite a while back now, I was taking 12.5mg of Methotrexate weekly and I wasn't getting any relief at all, so my doctor increased it to 15mg a week (just one more pill) and it was almost immediate success, that's how these things go sometimes. Sometimes we're so close, but yet so far. I do know that my doctors have told me in the past that Methotrexate can take sometimes six weeks to begin working on some folks and really about twelve weeks to discount it out and go on to try something else. I think maybe you might want to consider trying Humira or Enbrel and taking it along with the Methotrexate, at least for a while and if your so blessed with relief at that time you might be able to back off on one of the meds, but your only at week five, I'd keep it going for another seven, it just might kick in, it's helped many many people with R/A in the past and has a good history of it too.
Blessings and keep looking up, faith goes a long way,
Ahhh thanks Brian, I'm hearing what you say , I've just been to see consultant and he's put me on steroids and is bringing my MRI forward for me hes reluctant to change my meds at all until he has had the scan results, he says that he may put me from the methotrexate tablets to the injection as my body will absorb all of it rather than loose 20% through the gut .but he's not willing to do anything until he has had these results .But at least the steroids will kick in enough so I can get back into work . Feel like I've got somewhere n yet no where on my long awaited appointment.
Dee xx
Hope your OK as a fellow sufferer with this crap disease.
I had to do just that In the past (switch to injections). I thought the Methotrexate had stopped working, but I was wrong. My doctor switched me from pills to injections and we had almost immediate success. I never knew that the stomic robbed some of the medication (live and learn I guess). Well, still maybe your doctor is correct as to taking the Methotrexate alone and or with the steroids. Personally, I don't like taking both Enbrel and Methotrexate, but it works and I suppose as long as the bloodwork comes in ok we'll be alright. Maybe we'll back off on one of the medications once we've achieved a steady level of remission.
You are very welcome. The sooner you call...maybe, just maybe the sooner you'll feel better. Well, that's our hope!!! This past Winter was a tough one on me and I don't wish what I went through on anyone. I'm very glad to get some relief and I hope those that seek it find it...Amen
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
along with all the pain, stiffness, damage etc. At times I feel just like a yo yo. One day I'm up, then the next day I'm down and limp all over the place....go figure???
Methotrexate, side effects & work
RA and methotrexate, work and benefits
When will Methotrexate work for me?
stopping methotrexate - misdiagnosis?
Methotrexate and working in school
