How good should it get?

[Cat-E]

Hi, first post here. I was diagnosed with RA in November and started on 15mg of methotrexate in December. Before diagnosis I was struggling to walk due to my knees and ankles and couldn't dress myself or open a lid and actually thought I was dying. My Dr gave me a steroid injection which worked amazingly for about 2 weeks and then I started on methotrexate. This has had a great impact on my hands, almost back to normal with just the odd bit of joint pain every now and again. Walking on the flat is not too bad but I can't kneel, squat down and getting up from sitting is a struggle. Last visit I had a load of fluid sucked out of my worse knee and a steroid injection which again worked miracles but now 2 weeks later the pain in my knees is returning and I'm.starting to struggle. The nurse was pleased with how I was doing and the reduction in much of my joints and didn't mention any change in my meds. I guess what I am wondering is how good should it get? I read about how important exercise is and I used to love yoga and kettlebells but can't even imagine trying these with how sore my knees still are Any advice welcome

[Inanotherlife]

hi Cat-E,

I’m sure there’ll be many come along shortly who can answer your question much better than I can but from my experience and since having joined this forum, I realised that seemingly most things where RA are concerned are variable from one person to another and of course the very nature of the RA beast is that it is variable in itself in terms of how it can affect you day to day even.

Not much help I know, but wishing you well 😊

[Cat-E in reply to Inanotherlife]

Thanks for replying, yeah I guess it's probably like asking how long is a piece of string 🤔

[Spanelmad]

Your on a journey to finding that elusive treatment that really works!!I've read what you've written and so far your responding well the big take is your hands that's amazing.Your walking better, not kneeling but that's maybe not realistic at this stage.

Give yourself a break , 3 months of treatment remember

[Cat-E in reply to Spanelmad]

Yes, you are right, I am a lot lot better than I was and do need to keep reminding myself of that ❤️

[Oshgosh in reply to Cat-E]

It’s difficult coping with pain and reduced mobility.

I’ve found gentlyis the key.

When I’m sitting,I try to wriggle about and move my feet about.

I stand up slowly and cautiously,I don’t wan to fall again.

I’m waiting for the warmer weather,just lately I hate the cold.

I e been on Myclophenate for 4 years.

I’ve been back to the gym 3 times since I broke my hip plus heart attack.

It’s not as impressive as it sounds I use the rowing machine.the. Try a few machines with low weights

I spend around 30 leisurely Mi utesthere,then I have a cup of tea.

The worst thing is sitting myself down on the rowing machine seat,I dread to think what the rear view is like.

I find the most important thing is being aware of my limitations.

If I don’t feel up to doing stuff,I just don’t do it.

Be very kind to yourself,the good days are a bonus xx

[Cat-E in reply to Oshgosh]

Thanks, I do try to keep moving my legs when I am sitting (something the cat finds very annoying!) But I definitely know about it if, for example I've been in an online meeting and forgotten to move for a period of time 😞

[bpeal1]

RA is a journey. Unfortunately 3 months isn’t a long time in that journey. Most medications take that long to start working. It sounds like you have made good progress so far so hopefully you will continue on that path. Nobody can say how good it will get as it is so variable and everyone’s journey is different. One thing to bear in mind is that most people who post on forums like this are the people who are struggling or having medication problems, those who are doing well are busy getting on with their lives.

As for exercise the best thing I’ve found is Pilates. However make sure you have a very well qualified instructor (if possible one with a physio background). They will then be able to adapt exercises to your needs.

Good luck on journey.

[Cat-E in reply to bpeal1]

Excellent point about people who post on forums 😀 I don't think my gym does pilates, I'll have a look if there are any local classes anywhere else

[welsh12 in reply to Cat-E]

Trigger point pilates is really good

[Gaz227]

I find weight training and yoga absolutely imperative to keep me moving , I am on 12.5mg MTX and 4.25mg of pred , the meds and the exercise are as important as each other to me 👍

[WillowsMother in reply to Gaz227]

Hi Gaz, as a matter of interest, how do you manage to get to a dose of 4.25mg of Pred? I've been on 5mg for over a year, but want to start reducing really slowly. All I can get is 2.5mg coated tablets and 1mg uncoated.. Do you cut those tiny 1mg tabs?

[Amnesiac3637 in reply to WillowsMother]

Re tiny, uncoated 1mg pred tabs. You can buy a pill cutter from any pharmacy and slice them in half. I’ve had to do it for the past four months and it’s fiddly as they break sometimes but it works.

[Gaz227 in reply to WillowsMother]

I also get non coated 2.5 mg tabs , they also have a nice line on them which make them easy to cut for 1.25mg tab 👍

[Cat-E in reply to Gaz227]

I didn't know low dose pred was an option, do you take it once a week like MTX or daily? Is the long term plan always to reduce steroid use, or meds in general?

[bpeal1 in reply to Cat-E]

I would avoid long term steroid use if at all possible. Unfortunately for some it is a necessary evil. Ideally people reduce steroid use but it has to be done gradually if it’s been taken for any length of time.

As for other medications, as with most things RA related it varies greatly from one person to the next. If you have been stable on medication for a while your rheumatologist may suggest reducing it to see what happens some people find they can successfully reduce medications others discover that they can’t.

[Gaz227 in reply to Cat-E]

I was taking pred for years before MTX as I was wrongly diagnosed and now I can’t get off it . I’m on 4:25mg daily, have been up and down on it for about 8 years , avoid it is my own personal opinion ,

[Cat-E in reply to Gaz227]

Ahh right, sorry to hear that. It gives such relief though, someone needs to work out how to just get the good bits without the bad bits!

[AgedCrone in reply to Cat-E]

The long term use re Pred…is to get off it as soon as possible!

[vonniesims]

I find Aquarobics good for me.

[Cat-E in reply to vonniesims]

I am going to try a gentle swim and I know aquariums is on offer at my gym

[janmary]

as others have said - it’s early days for you in finding the right meds . If your knees are a particular problem perhaps some gentle compression / support knee sleeves would help -especially when moving about - they were very helpful to me.

[Cat-E in reply to janmary]

I do have compression sleeves which I couldn't have got through the early days before the meds started to kick in without but I find they irritate my tendons at the back of my knees so can only wear them over tights or leggings to stop this bit I may try some different ones.

[janmary in reply to Cat-E]

Have you tried bamboo ones ? Hoping you're more comfortable soon...

[Cat-E in reply to janmary]

No, I will look out for those

[Cat-E]

Thanks all for responding, I guess the amazing reaction I get after a high dose steroid injection makes me wonder if that's attainable long term or is that just false hope? I know everyone is different and am becoming to realise that even for one person every day can be different, I think that is one of the things that I am finding most frustrating, what I can do one day I might not be able to the next!

[Happy5 in reply to Cat-E]

Only so many steroid injections can be used at a time, & doesn't seem to be considered a long term solution ? Others on here may know more about this?

[YogaBrit]

Hi Cat, being patient is one of the biggest challenges with RA I have found. It took 9 months for me to feel almost ‘normal’ and that was after starting a combination of Sulfasalazine and Methotrexate as the steroid injections didn’t work on my knee and the sulfasalazine on its own did nothing. I’d say I’m now pretty good a year on from starting the combination so keep going, you’ll get there, it just takes a long time 😉

[Ascidian]

Nobody can really answer "How good SHOULD it get?" as this varies from person to person. However, I can tell you how good it CAN get. I was diagnosed with Psoriatic Arthritis (very similar to RA) in November 2019. Sulfasalazine helped a bit, after about 10 weeks, but then the improvement stalled. My rheumy added methotrexate. After a couple of months things had improved again, but I still wasn't feeling as good as I would have liked. Then, after 11 months on the dual therapy, I suddenly felt brilliant. Most days, there isn't really any fatigue, and joints only really hurt if I overdo things - there is existing damage, so a bit of osteoarthritis, but anti-inflammatories help with that. I still have occasional mini flares, but I have basically been well for 2 years now. Hope you have similar success!

[Cat-E in reply to Ascidian]

Thanks for this positive story! I guess I was wondering if there is a point where you accept this is as good as it gets or whether you should keep pushing for improvements and as you say, everyone is different but good to know things can get really good!

[Happy5]

Hi welcome to the group none of wish to be in.

I like you thought "no idea what I've got but it will kill me " before diagnosis. The first year is a bit of a roller coaster, with symptoms being treated with steroids etc and the MTX getting into your system to reduce as much as possible your RA symptoms. Suggest you listen to your body, don't feel obliged to exercise but try to get up walk round your home half hourly. When I'm in what we call a flare so tempted to curl up in bed & stay there.

You will reach an equilibrium and reasonable quality of life , but unlikely to be the person you were. Don't be reluctant express your concerns to the specialist nurse , it seems MTX is doing something, I have a friend with RA & it took his team ages to find what worked for him.

This forum is great support , but none of us are medically qualified & all experience unique symptoms.

Wishing you all the best 🙂

[virtualreality]

Dear Cat-E , I was diagnosed in October 2021 and remember so well feeling as you describe. It doesn't feel it at the time, but 3-4 months into treatment is very early days with RA, as others have said. No-one knows what your path will be, but it definitely CAN get better than it is now, and it probably will.

You mentioned that the pain is starting to return as the steroid injection wears off, which may be a sign that your medication is not fully controlling the disease activity, even though it seems to have brought some benefits which is good. Your rheumatology team can help with this, so it is worth letting them know if you have a helpline to call or an appointment coming up. You've already given methotrexate at 15mg a good trial, so they may want to look at treatment escalation options for you - which could be increasing the MTX dose or adding another DMARD (or two).

I started on MTX and hydroxychloroquine (and prednisolone), then switched from MTX tablets to injections after 4 or 5 months, which helped a bit. About 8 months after diagnosis I added sulfasalazine, which helped a bit more. Two year after diagnosis I accepted that I needed a biologic so will be starting that shortly. I believe that the improvements I've seen in that time has also been helped by being active as I can, though at the start that consisted only of a few short physio exercises each day. Over time I have been able to do more and more, and can do short, gentle yoga sessions now, which I love. I hope your journey back to doing the things you enjoy is quicker than mine, but also that my experience shows that giving yourself and your body time may well be rewarded - there's a long road ahead and it may very well include yoga and kettlebells 💛

[Cat-E in reply to virtualreality]

Thanks for this, I think patience is a trait I need to work on! Up to now any illness I have had has been cured by a couple of paracetamol or a short course of antibiotics, not used to this long term thing! I know that I also need to work on taking things steady, I keep thinking, oh I feel good today and then taking on a load of tasks that I have been wanting to do which then leaves me in pain or exhausted! Keeping active but not overdoing it is a line I haven't yet found!

[Boxerlady in reply to Cat-E]

Your last sentence says it all and I think that most of us here can say "been there, done that" with great feelings! I still have to pace myself but my medication is working well (Hydroxychloroquin, Methotrexate and Sulphasalzine - triple therapy) and I enjoy regular Aquafit classes as well as working part-time which as my age (64) is not to be sneezed at although I have learnt to accept that my friends of a similar age can do much more than me. Try to stay positive but also don't hesitate to gently push your team to keep things moving 😉