OK, I'm done with being brave!: Been on MTX for... - NRAS

NRAS
27,594 members31,605 posts

OK, I'm done with being brave!

RosieA
RosieA

Been on MTX for 3 months, 10 mg and 15mg for last 4 weeks. This week has been dreadful, exhausted and more joints seem to be involved. Hoped after 3 months that I would have seen some improvement. My thoughts are...

Perhaps the MTX dose isn't high enough

Not been on higher dose long enough

When they say that you start to see the benefits between 9Wks to 3 months that I might be on the outer limit

I'm not resting enough, and bending down to drag the ivy off bushes and bulbs isn't ideal (hence my feet hurting so much, for the first time)

Not doing enough!! Exercise is meant to reduce inflamation!

All the above!!!!!!!!!!!!!!!!!!!!!!

Please don't say 'don't let the disease define you etc. I suffered significant illness through 15 years of my life prior to this - I know all about positive thinking, but sometimes you can become overwhelmed by the effort of smiling through it all. I would just love to see the wood for the trees.

Anyway, please add / confirm my thoughts, I'm sure someone has been there before me. Sorry but one frustated RosieA.

34 Replies
oldestnewest

Some doctors consider that 10mg is the lowest therapeutic dose, and hardly count it. And a month on 15mg isn’t very long.... so a or b highly possible. And a month is not on outer limits. If you still have active inflammation then d and e are not relevant, you should be resting up.

You say you feel worse, but what do your bloods say? Are they showing any improvement at all? Often the blood results will improve before you can actually feel any change.

If yes, then perhaps be patient for another couple of weeks. If not, then talk to them about a treatment review?

RosieA
RosieA
in reply to helixhelix

Thanks. You always give sound advice. Yep! Hadn't thought of restarting clock, as it were, to when started 15mg. Bloods fine except for slightly falling netrophils from 2.2 down over time to 1.8 keeping eye on them, but no alarms bells. Am sero negative.

Yep! Guilty of charge of trying to just carry on., although have reduced exercise regime by 50% am managing to find other things to get up to mischief. (Hubby says yes, including tidying man cave!) I must be on the longest denial trip going. Due review in a month, will hang on unless things progress negatively.

Am now reaching for chocs, earl grey and the TV remote to watch the most inane thing possible. Tissues away for the moment and deepest thanks.

poemsgalore1
poemsgalore1
in reply to RosieA

Would the masked singer be inane enough for You? I've never watched nor will I. :-O

RosieA
RosieA
in reply to poemsgalore1

Thanks, had a snigger at that. Watching Midsomer Murders - thankfully with replay so I can rewind and catch up with plot while mind wanders, stoke the fire, polish an old chair and find other reasons to wander and not rest. Which, just writing this makes me realise that, although I think I am resting, I'm fooling myself. I think I'll invest in a timer - must sit still for 10 mins etc.

poemsgalore1
poemsgalore1
in reply to RosieA

Oh my favourite program, Midsomer Murders, whichever Barnaby it is. Although I love Sykes the dog and now Paddy the dog. :-)

J1707
J1707
in reply to poemsgalore1

Nor me rather pull my eyelashes out 😁

Buenos Dias Senorita Rosie!! Here is an idea !! watch what you eat (no dairy at all, dairy products give inflammation that gives pain, no corn etc.. Vegetables and fruits and a little

chicken now and then) plus resting the gut (digestion), by stoping eating after 6pm till the next day. Yes really, it's not a fad, many scientific books talk about the benefit of intermittent fasting. SinceI have been been doing that, for may be a year now (plus streching every morning when I get up) I have been able to function (well enough most of the time) without taking any drug (when before I was in big pain all the time and taking the anti inflammatory drugs, no more thank God). I did not discover America,I am just saying , you can believe it or not!! Take care for now. Hannah44

RosieA
RosieA
in reply to Hannah44

Thank you for your response. Yes, diet is important and fortunately I love my fruit and veg and try to eat as organically as possible. Having low bone density already I have to be very careful about calcium uptake. I am thrilled that you have found a way to combat your disease so well. Kindest.

It still is relatively a short time on the 15mg so maybe more time is needed. However after 3 months my dose was increased to 20mg. Everyone reacts differently to medication and methotrexate doesn't work for everyone. My advice is to give it a bit longer and if your still the same contact your rheumatologist. I had to have sulfasalazine added to take along with methotrexate. And please listen to your body, if you need to rest just do it. I feel like the laziest person sometimes but you do suffer if you continue to push yourself too much. Take care and hopefully you start to feel better soon.

Thank you. Yes, I think I am being a bit impatient with myself and you are right, logically I have not been on 15mg long enough to give it justice. Just felt so pathetic earlier on but felt better once I had posted and knowing that there were others out there who would understand. It really is a great forum and hats off to NRAS. Kindest.

Oh Rosie we all feel like enough is enough at times ....soome good advice so far. Your dose is still quite low and you haven’t been on it long enough. I had a very long flare last year feb-dec and it nearly broke me . I pushed for appointments tried EVERYTHING . Eventually seen and just before starting new meds it all disappeared. Still having swelling stiffness but not at that intensity . Just started a biological 🤞🏻this is the one that makes the difference .

The waiting game to find the right dose or the right meds makes it so difficult.

Hang on in there . Having a bad day you know where we all are. Having a good day tell us all about it.

During a flare exercise makes it worse for me so I don’t.

Hope you feel better soon

Thank you, just finding the 'sweet spot' of correct meds is the goal. In my naivety I hadn't realised the complexity of it all. Tomorrow will be interesting as the hospital are having me start my strengthening and conditioning physio. Will let you know how it goes, if I can raise any part of my body. Wishing you all the best.

Hi Rosie - I SO know how you feel. I'd agree with HH you need to count each week of an increased dose as week 1. I was on 10mg for a month then 15mg - it took about 14 weeks to start working for me. Because I was having various problems this was increased to 17.5mg in August - I'm starting 20mg tomorrow for 4cwerks, then 22mg for 4 weeks then 25mg (max dose). Hopefully your condition will improve without having to go as high as me. But it is important to give it time- not easy when you are in pain and bloody fed up with it all, I know! That said its also important to flag up if you're not getting results after 3 months. I waited far too long to go from 15 to 17.5 and actually should have gone straight to 20mg in August. It's a balancing act as no one wants to take more meds than they need but equally I've put with things when I shouldn't have. Be strong and good luck.😁

Oh thank you for your timely response. Just been delving into the tissue box again. So sorry you have been through the mill. I just can't understand why getting worse, let alone improving but I take your point about having to wait for increased dose to work (but not too long) -its only been three weeks, having to interupt dose because of gastritis. I also had the pnemonia jab on Monday and wondered if that had caused joints to go haywire - just a thought and probably irrelevant.

Just finished reading 'Pollyanna' so uplifing - might start 'Anne of Green Gables' again - another displacement activity instead of resting - cleaning shelves of chilldhood books!!!

Thank you again.

Dobcross1
Dobcross1
in reply to RosieA

Yes both the gastritis and pneumonia jab could have stirred things up. It doesn't take much with RA does it!😁

If you have Netflix I recommend watching Anne with an E. Escapism at its best

Takes a little time more for MTX to kick in.I was perscibed,10mg last Dec,whilst being slowly weaned off prednesone,6wks on Nothing changed,then my dose went up to 20mg.It eased somewhat,but not a huge change.last visit was Nov 19,another 5mg.Now I feel good with 25mg.Seems,like prednesone, it has to be slow so the body can adapt.I’ve been through much emotions over med changes through the years.I found my own way by just accepting.and my faith.As for being positive,all of us are different,one can accept the inevitable where many can’t.So,Hope this info helps.🙂

Thank you for this. Am a little more positive today, having taken some anti-inflammatorys (needed family to remind me of them as I am not used to popping any type of pill, I literally forget about them). It's taken the edge off some of the pain. Yes, slowly seems to be the catch phrase, but I am going to chase up when my next consultant appointment is. The quick deterioration in my toes is not insignificant and just want to ensure not missing something. It's one thing for things to be on 'hold' while meds click in and another to continue to deteriorate - so medical reassurance is in order, I think -once mind is at rest it's amazing how uplifting it can be to the spirits. We are as you say, all different, but ultimately I hope we can all find some peace with this disease and trust / hope that a cure is around the corner. I am glad that in the meantime your feeling 'good'. Thank you once again. Kindest wishes.

Rosie, I'm I'm seronegative too and struggled with MTX last year, it did help my joints a bit, but I could not tolerate 15 mgs, it just wiped me out. The fatigue it caused was overwhelming and increased each time I injected.

I struggled with various dosages alternating weekly 15 / 12.5 mgs; 12.5 / 10 mgs, until I stopped taking it and asked to be seen by rheumatology. I'm now on JAK inhibitors still with issues, but not completely wiped out as I was with MTX.

So yes, you do need to give it a go and not give up too early, but MTX does not suit everyone and is known for its fatigue creating issues. So don't wait too long before asking for help from rheumatology and take care about increasing the dose when you body is not coping with the dosage you are on.

Do look after yourself too, doing one thing a day is more than enough for me. Best wishes.

Oh thank you. I didn't realise that MTX was a fatigue enhancing culprit - although fatigue was one of my first symptoms (unbeknown at the time). Funnily enough, I have just got off the phone from leaving a message with the specialist nurse. It's party time tonight with the injection - beginning to dread how I'm going to feel the next day but equally desperate for the RA not to attack my toes (first time ever this week - and ballet is my exercise joy. What fun! Sadly, I agree that at the moment one thing is about it for me - two at a push. Kindest wishes.

Agoodlife
Agoodlife
in reply to RosieA

On the other hand do you take more of the food that makes you feel more ill?

Hi Rosie, I was prescribed the maximum does of 25 mg. From what I understand the target is to stop further joint damage at the onset. Now that I am in medical remission, the dosage has been slowly reduced to 10 mg over the years. Monthly blood tests shows that my neutrophils have been lowered to between .8 and 1.2 as a result of methotrexate and. Being monitored closely but nothing alarming. Hopefully, you will find the right sweet spot fo the amount of methotrexate you take soon.

A more agressive initial treatment at the start appears to have worked for you and I agree that preventing futher damage is essential. Luckily, the specialist nurse has agreed that all is not right and is pushing forward my appointment. Hopefully, I can stop my feet being any further involved. Thank you for this. It gives me courage in the event that they want to up the MTX. Kindest wishes.

RosieA helixhelix Dobcross1 WOW I had not even thought about starting on 17.5g was like starting again if not feeling any benefit. Thanks for this info just helped my brain as bloods showing some good signs but outer shell looks like I am sunburnt and peeling in regards to the hands. I went to work today thinking hell yes I am on a roll and then 5hrs of hard graft I was broken so Rosie I so so get where you are as almost on same time lines.

Rest dont rush and try to be good ie REST (saying it does not mean I can always do it either)

Box set of Dublin Murders and Thirteen kept me going past 2 weeks.

Oh dear and you sounded so positive on an earlier post about starting work again. Let's hope tomorrow is a little easier. My first signal that I have done too much is slight feeling of nausea, I am beginning to listen to this 'little voice' and down tools; it is the hardest thing to balance rest and activity especially when you are new to living with this disease. Good news is that my appointment at hospital is being brought forward. I'm officially word perfect on Pride and Prejudice. Kindest wishes

I hope to encourage you by my experience. I am now on 25 MTX, orally, with sulfasalazine added in plus doing a prednisone taper, now at 8 mgs. Unlike I was told, the MTX took a full 6 months to make a big difference to the pain and would not be as effective without the sulfa., which is at 2gms daily.

The effectiveness was easily measured by how well I could reduce the pred. Be patient and do what you can to cut the worry and stress, which causes more trouble with the disease.

There will always be payback when physical activity is over the top - it's usually delayed but feels like you're back at square one. I was using my splitting axe on ice 4 days ago and caused myself a lot of grief in my shoulder for these days. I took extra pred. for 2 days, the pain was somewhat unbearable. MTX is slow but sure; I have no more side effects from any of the medication. Hang in there and God bless.

RosieA
RosieA
in reply to Nanna71

Oh what a lovely reply. I thank you. I am learning, the hard way, that over the top physical activity does have payback and when they say exercise is good for you, it doesn't necessarily mean that you continue with what you used to do. I am finding my feet.

It was reassuring to hear that it took 6 months before you started to reap benefits from MTX. Funnily enough, yesterday was my first positive day in ages, so maybe there is light at the end of the tunnel. I picked up my classical guitar for the first time in 6 months and started to rediscover the joy in my instrument and realised with great sigh of relief that it would not take me as long as I feared to get back to playing my favourite pieces. Wonderful. Ultimately, it appears that becomming finely tuned to the messages that your body is giving you is the key. Dread to ask by what is a splitting axe? Kindest wishes.

Nanna71
Nanna71
in reply to RosieA

It is a wood-splitting axe. My main axe is a 5lb head and I have split my firewood with it for many years. Now I have an electric wood-splitter as I may have to give some things up.

Nanna71
Nanna71
in reply to RosieA

Also, I used it for (at that time) chipping away the ice from the spring where my water comes from. I live in a remote area of the Rocky Mtns in British Columbia, Canada. Thank you for the interested response. This is the best forum ever.

Gosh. How fascinating. An electic wood splitter sounds just the job, very wise. How wonderful to be surrounded by what I imagine to be quite breath taking scenery. I've just had a look at some google images, incredibly beautiful. I live in a small Cotswold village and although the house was built in 1740 and suffers its fair share of cold draughts all the ammenities are on now on tap! Getting to your hosptial appointments must be quite a journey. It's hard to imagine all that space.

Yes it is a great forum- makes you realise that it is a small world really. Kindest wishes

Nanna71
Nanna71
in reply to RosieA

Sounds like a lovely location you are in. My rheumatologist is 5 hrs. away so I see her once a year. But I have online appt's with her right here in my dining room. Where you live is the root word (sort of) for my surname, Coates.

Perhaps your family hail from England in the distant past. Mine from all over the UK, mainly Scotland. I have just done my second ballet session this week having not gone for a few months. Rosy cheeks, tired but hopefully no other aches. My stamina and strength have both gone down but kept up better today than Monday so I think that the MTX, time and determination are beginning to pay off. Let's hope. Isn't technology grand, online appointment - fantastic. Take care.

Deeb2908
Deeb2908
in reply to RosieA

That’s so lovely to hear Rosie bet you had a smile being able to do ballet 🩰 again x

RosieA
RosieA
in reply to Deeb2908

Thank you. Haven't felt this positive for a long time. Not sure how long it will last as there are a few concerns on my bloods, neutrophils on way down and AST on way up. Might mean MTX not for me. Just hope it all plateaus Deep joy. Meanwhile it's back on with the pumps and a twirling I shall go.

You may also like...