Review- how do you know if this is as good as you will get on a treatment?

[BlightyFiveStar]

Hi all

I haven’t posted for a while as been adjusting. RA diagnosed March, been on methotrexate since April alongside hydroxychloroquine since January. MTX by injections since June due to bad side effects on pills. Currently 20mg a week.

I have a review next week with a new consultant. I am wondering how you know if you can still improve further on a drug or when you decide it’s not good enough for you? I am better than I was at diagnosis, less stiffness and swelling but still not back to ‘normal ‘. I can walk better though. I feel like someone took out my stuffing on many days and feel weak and exhausted. My hands are still very painful and recently have stiffened up again along with my hips and shoulder. I can’t take NSAIDs due to a stomach condition and choose not to take codeine or opiate based painkillers due to problems with side effects. I have limited reserves and can do less than I used to.

I am wondering if this is as good as I can expect on MTX or if I should be asking about other options. How do you know what is caused by RA and what is by the drugs?

The last registrar I saw said that she believes they have not got me on the right dose yet ( so she increased it) and that feeling like this is because the RA is still not under control so my immune system is still attacking me and that when the drugs are right I should feel back to my pre-RA self. Is this realistic? Is it possible to get back to how you were before RA? I’ve been on MTX 6 months, do I persist? I am scared of other options like biologics as they seem so complicated and can open the door to other problems if I have understood correctly. Plus getting funding just adds to the stress.

I should add that my blood tests are not helpful in decision making as they have been fairly normal throughout, even when I couldn’t walk or dress myself, so the doctors go on clinical signs and what I report - so in that sense we cannot look at test results and say oh yes the MTX has reduced your inflammation (etc) as mine doesn’t show up in the antibody tests.

Thanks for any tips from your experience.

[AgedCrone]

From what you say about your blood tests ,I think you need to rely on your Rheumy interpreting how you say you feel, & him deciding if you need to add another Dmard, or just increase the Mtx.

You will see here how differently people react to drugs, & how some do really well on a drug that others hate.

As for feeling the same as Pre RA, I can only speak for myself......I was disgnosed back in 1999 & now on Biologics, I'm feeling the best I have for years, but so many years have past I really don't know if you ever truly get back to your old self....but I hope you get as close as possible.

[sylvi]

I don't know if you will ever get back to pre rs days. You might get brighter than you are and you might get to something bordering on normal or normal for ra and for you. I am not sure you will ever be like you were before ra,but you will be a new you post ra.Hugs.xxxx

[JEM95 in reply to sylvi]

I’m in clinical remission - I feel pretty good but not as good as pre RA diagnosis. Also despite being in remission I still have occasional flares.

I’m on MXT and hydroxy. My last MXT was from 20 to 22.5 and it made a difference for me.

It does take a very long time to find the right balance for you.

Personally I put my faith in my Rheumy and touch wood I am under control.

Keep positive. I push myself to exercise, Pilates, swim etc as this has hugely helped too.

[helixhelix]

That doesn't sound as good as it gets to me, so I think you should keep pushing the doctor. Everyone is of course different, but my story is that I started on MTX which worked well but still left me with fatigue & pain. So hydroxy added, which helped a bit more but not normal. So Sulpha added, which got me to a pretty good place. I also worked on lifestyle stuff too.

All that took about a year, and another year to get into remission. Which is where I have stayed for 5 years or so (having a bad spell right now, but just increased dose of MTX so hope that works). So my normal is morning stiffness, and low level aches & pain that get to the point of needing anti inflammatorys maybe 5 days a month. I have less energy than I used to (but am also 7 years older....) and do have to plan round that and factor in a proper night's sleep. Equallly I have to exercise daily or I seize up - so Pilates a couple of times a week and a daily 5km walk. If I overdo things, or get overtired it all goes to pot again. The worst for me is that I can't overuse a joint, so have to break tasks up into small chunks. But within these limitations I can live normally - not the same normal but an ok normal. And I too have blood that doesn't show inflammation, which rheumy ignores and looks at me instead.

So that sounds much better that your description of where you are? Keep pushing!

[Ali_H]

Hi,

I think letting your rheumy know how things are for you and how you feel would be wise. Bloods don’t always give the full picture - at my last appointment I asked if we could up my folic acid from 5mg once a week to twice a week due to fatigue. My bloods said my folic and iron levels were fine but we upped it anyway - the improvement in my fatigue levels are markedly noticeable.

Exercise might help keeping things moving in the right direction for you... working full time I find keeping this part of my self care going difficult but in school holidays I do make a more concerted effort and in term time I’m the teacher usually on the playground outdoor gym equipment with students!

Keep going and hopefully a better quality ‘normal’ will be yours.

Ali

[Hidden]

After 30 years of RA, and many different treatments, I've accepted the fact that I will never return to pre RA days.

[Joy_1]

My RA markers have always been within the normal range. However I have to say I disagree with relying on your Rheumatologist to make all the decisions. Once my Consultant started listening to me rather than obsessing over my blood test results (which always told a positive story) things started to improve dramatically.

I too feel you are not there yet. 15mg MTX turned the joy of living back on again, but I still had morning stiffness. 17.5mg resulted in no stiffness at all. I have a bit of joint pain every now and then but that I feel is kept under control by exercise. In my case aqua aerobics and swimming 3 times a week.

Am I the same person I was 6 years ago? No, but that is mainly down to fatigue. Keeping stress levels down and not trying to cram too much into a day and life is good.

[farm123]

You will be very lucky to get back to where you were but it does sound as if you are not yet under sufficient control. Don't shut out treatment options. For me the biologic group have been my saviour. They work far better and with less side effects than the DMARD group and have given me a fresh lease of life. It does take some time to find the right combination of drugs to suit you. Farm

[Neonkittie17 in reply to farm123]

Me too Farm, Rituximab has been the best med so far.