As good as it gets???: im 5 years post diagnosis... - NRAS

NRAS

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As good as it gets???

wilbertjellyfish profile image

im 5 years post diagnosis.

Currently on mtx 25mg injection. A bioloic weekly (the 5th ive tried) pred 10mg daily and eterocoxib daily.

Im still really stiff, not in horrendous pain compared to at other times but definitely not pain free. It moves around but mostly my legs.

I walk my dogs every morning, sometimes not very far, swim two times a week...this helps and work full time.

My Question is Is this a good as im going to be, I get the impression from the rheumy team (not seen a consultant in two years) that this is as good as ill ever be. Anyone else experienced this.

31 Replies
Dottie11 profile image
Dottie11

May I ask how much eterocoxib you are taking ? This has just been re- introduced for me. I am not sure if high enough. Likewise I have not seen a Rheumy for two years. Sero negative arthriitis.

wilbertjellyfish profile image
wilbertjellyfish in reply to Dottie11

60mg a day. I used to have the 90 mmg tabs but they are no longer licensed for RA. Im sero negative too.

One GP told me they are bad for your kid noeys so I try not to take them and at times have managed...but not at the minute

Dottie11 profile image
Dottie11 in reply to wilbertjellyfish

Yes I was on 30mg and now 60mg , I am to be re tested for R A so makes sense. Thank you.

Deeb1764 profile image
Deeb1764

My Consultant said to me last time we saw each other think 6months ago. This is it. I was more upset than I realised at the time as I am still in pain and struggle to do anything with the fatigue and stiffness.

He said it’s a tough one to take on board as some people take the medication and fly others struggle to balance out. I am super sensitive to medication so this has not helped either.

I think now I take the good days when I get them but usually followed by a bad flare and work round things in anyway I can including pushing thro the fatigue when I am fed up too.

Sending hugs x

wilbertjellyfish profile image
wilbertjellyfish in reply to Deeb1764

thank you tor your reply. I think ithis is my point if they would say this is as good as you are going to be then you could get on with it, hard as that maybe.

I have my own business, five children and a husband who thinks im super human, either that or he has no real understanding of how much work he expects me to do.

Pacing myself isnt easy.🙈

Deeb1764 profile image
Deeb1764 in reply to wilbertjellyfish

I know and that is the hardest part. My view is tell me at the start it can be hard and life could change a lot don’t tell me oh take this pill and you will see a difference. 3 years later I am still struggling and feel my first big chat at the start completely failed to good and bad.

wilbertjellyfish profile image
wilbertjellyfish in reply to Deeb1764

in the beginning I asked " Do I just take these meds for six months then I'll be ok?" Was told maybe 🙈

Deeb1764 profile image
Deeb1764 in reply to wilbertjellyfish

OMG mad!

Neonkittie17 profile image
Neonkittie17

Think you might benefit from a rheumy review. Some of that stiffness and pain could be a touch of wear and tear/osteo-arthritis maybe? There are times I feel stiff with the joints, knees and ankles especially if overdo it. I’ve zero rheumatoid inflammation at present although that could well change as I’ve just started a new biological med. I’ve got some old damage so that can me seize up even if no active RA for the last 8 years. It’s often we put up with feeling bleurgh when we could feel so much better. It’s hard to to disrupt things though and try to do something more, but you sound to be suffering with stiff leg joints. If you stand for your job then your legs will feel weak/seized after a full day. (Are you a vet do I recall correctly? ... or have I got you mixed up with someone else? That would be a very physical/active job indeed.)

Can you ask the rheumy for a review of your meds and joints? I trust you’ve had your RA blood tests monitored by the rheumy and all is steady there and if it is that’s why they probably think the biologic and Mtx, etc. are doing well for you. I’d tell the rheumy exactly what you’ve told us. Good luck WJF. 🙏🏻💗

wilbertjellyfish profile image
wilbertjellyfish

yep thats me the vet 🙈 thanks for the advice. I think I do have some OA as well but significant swelling of ankles and wrists too.

Will need to be brave and demand an appointment 🙈

Neonkittie17 profile image
Neonkittie17 in reply to wilbertjellyfish

You are a very busy lady indeed. However, everyone else’s needs .. four legged or two legged .. should not always be before yours. Yes, I think a request for a rheumy appointment/meds and joints review is a good idea, saying you feel no improvement at all and feel some deterioration to get their attention, and it’s true anyhow.

CripLady profile image
CripLady

Hi. You sound very active to me. You are a lot luckier than a lot of people. Saying that, I would arrange for a meds review ASAP.

Maureengibson profile image
Maureengibson

I think a lot of it also depends on how much damage was already done before diagnosed and started on meds. I have AS I had it 25yrs before diagnosed. My sacroiliac joints and ribs were fused at diagnosis, as well as both knee caps being subluxed from the tendons calcifying and causing shortening, pulling them out of joint.

I’m also on 25mg MTX, a weekly biologic and steroids. I had to stop etoricoxib when I had a stroke at 52. The areas where damage has already occured continue to cause stiffness and pain, even when inflammation is controlled. However it may be worth considering pushing for a review to confirm your meds are still working.

oldtimer2 profile image
oldtimer2

I would like to encourage you to aim as high as you can!

Go on pushing the rheumy team to do as much as they can for you. My experience was for years the consultant fobbed me off saying that was the best I could expect,and I even had letters from the admin asking me if I still wished to be seen by the specialist team. Then a specialist nurse took one look at my hands and said that she could not imagine how I coped with the pain! She recommended to a new consultant that I went on a biologic and I was fortunate to find that it worked marvellously (so far) for me. To be able to use my hands (and other bits of my body) again without constant pain has been heaven!

wilbertjellyfish profile image
wilbertjellyfish in reply to oldtimer2

so glad you got relief. I think this is my biggest struggle do I just accept that im going to be living in pain forever or keep fighting... sometimes I just haven't got the fight.

oldtimer profile image
oldtimer in reply to wilbertjellyfish

Don’t give up. My kids, well they are adults of course, are thrilled that I'm so much better. I hadn't really realised that they noticed.

Neonkittie17 profile image
Neonkittie17 in reply to wilbertjellyfish

I feel you may have slipped through the net re a rheumy review/ appointment, but I had to wait 16 months for a phone call from my rheumy last year as she wasn’t in her usual rheumy role during the height of the pandemic. Things were calm and steady for me then RA wise and I did see my biologics nurse twice at infusion. I understood it was NICE regs/recommendations for patients on biologics to be seen or phoned (in the light of that last couple of years) every 4 months. The fact you are on a biologic and highest dose of Mtx shows the rheumy thought you needed those both to control it. My sub-cut Mtx was reduced from 25 to 10mgs when my biologic started to work well. I do hope you find time to email the rheumy and set the ball rolling. It’s hard too to change med .. I’ve just done it but as I couldn’t stay as I was before, it needed to happen. Change is hard but the alternative isn’t often good enough. Yes, we owe ourselves more. Hope we all encourage you to get better relief/treatment than you have at present. A review is the least the rheumy should do and soon. 🙏🏻

Monkeysmum profile image
Monkeysmum

I understand and sympathise completely with your post. Last time I asked my consultant a similar question he shrugged and said something along the lines of who knows?! Said everyone’s illness and response to medication is different. So difficult to accept when you are striving for a better quality of life. By the way - five children and a full time job - I think you are amazing! 😀

Typsey profile image
Typsey

I think you are marvellous to cope with five children a full time job and a husband. I’ll not say you are luckier than most because I feel everyone’s pain is different and if your in pain then your in pain. I’ve had RA for over 32 years and have led a good life. For me it’s all about how you can cope with it and try and be positive . As others have said you may need to see specialist to see if your medication is correct. There are lots of things you can try so be forceful and say you need to see someone. I was told a few years back that I had to accept this is it, but, I have changed meds since then and it’s been a positive change.Good luck Hun and I hope you can get some relief.

Happy5 profile image
Happy5

Firstly impressed with your exercise regime, keep it going as long as possible.

I was diagnosed 10 years ago at age 57 years went from super fit to practically bed ridden. Gap between diagnosis and starting treatment delayed by 6 months due to my being abroad.

Was started on MXT 20 mg tablets and Hydroxychloroquine plus folic acid. The nurse I spoke with was a diamond used her lunch time to discuss my treatment, I was armed with lots of questions having got my head round my diagnosis.

Didn't get on with MTX tablets now on injections, long since taken off Hydroxychloroquine. I have OA hips and knees both hips replaced pain gone but not getting knees replaced so get stiffness and pain with them.

In answer to your question a lot of my adjustment has been accepting this is my life, Last 2 years Covid threw up lots of flares between vaccines. Surgery also caused inconsistent taking MTX so lots of flares and pain. RA team great saw me every time to use steroid injection to help, which it did. RA now settled down again, I do bits in the garden as best I can, try to walk albeit slowly for about 40 minutes to an hour. In pain every day, varies from mild to horrendous and use usual methods to keep it bearable. Stiffness is frustrating, limits what I can manage but like us all I push through.

Most difficult thing is others reaction to my limitations, ones who knew me before now hardly want my company. Fortunately family are great but then I looked after our grandson from when his mum went to work, at 9 months old. Our grandson is a joy and helped massively in keeping me going. I hate the fact I'm slow and limited in what I can manage, but no choice in accepting it, and keeping mentally upbeat.

Managed a lovely trip with family to France end of August and a couple of days camping with friends in September.

All the best 😊

wilbertjellyfish profile image
wilbertjellyfish

I think this is it acceptance.....which isn't easy. My mother died when I was three and my dad is a farmer. I had a lovely childhood but grew up very independent and determined.

I once thought my dad should have been clipping the sheep but he was busy elsewhere so I rounded them up and started clipping them myself that kind of independence.

Im struggling with the concept of not being able to do it all and am rubbish at pacing myself and resting. I guess I'll just have to learn.

Im glad you were able to enjoy your holiday, im even more impressed you can watch a toddler, that is no easy task.

CripLady profile image
CripLady in reply to wilbertjellyfish

I too am a ‘roll your sleeves up & get on with it’ type of person. I am 12 years in and have finally got used to this pace and rest business. You have to rewire your brain unfortunately. Day at a time x

Boxerlady profile image
Boxerlady

Acceptance is probably part of it in that you're probably expecting too much of yourself but then I would say that to anyone trying to do as much as you are, even if they had no health issues at all! But equally, I would ask for a medication review if I were you as it's been far too long since you were seen. When I saw the consultant last January it was over a year since my previous appointment and he was most apologetic, even though I'd been seen by the rheumy nurse and had my medication regime changed several times during the pandemic. He said then that the aim was to get me completely pain-free; I was surprised to hear him say that and he was probably being over-optimistic but it was good to hear. My next consultation is due next January and I'm debating with myself whether to ring the nurse helpline before then as I'm still having issues with my wrist as well as fatigue and generally feeling "not right" although I realise that I'm doing well compared to many on here. At the moment I'm waiting for the GP to get back to me as she's checking my thyroid and consulting a gynae about HRT but if that doesn't start to improve things I may well ring the helpline. I've always found them receptive and have been encouraged in the past by folk on here to keep pushing to try to get things as good as possible rather than just accepting that they're "OK".

CripLady profile image
CripLady in reply to Boxerlady

Amitriptyline made a huge difference for me. It has taken away a lot of my pain and I sleep more soundly now which helps with fatigue. 20mg at 7pm.

I got a Fibro diagnosis to add to my RA as my fatigue was ridiculous.

Boxerlady profile image
Boxerlady in reply to CripLady

I'm on a low dose of Mirtazapine which does help with tiredness and means that I can drop off again after being woken up by night sweats (average of 4 a night atm.) Recently I've been feeling generally more tired and fuzzy-headed with a bit of BPV thrown in (fatigue was probably the wrong word as the short bouts of that have probably been short RA flares) and it's that combined with hot flushes and low mood which sent me to the GP. All liveable-with but I'd like to know what's going on and find out if there's anything I can do about it or whether I just need to get on with it.

CripLady profile image
CripLady in reply to Boxerlady

Going gluten-free helped me also; I do cheat on occasion, but it definitely does make me more sluggish. I also stopped naproxen and diclofenac. I had felt ‘cack’ for years 🤢.

Menopause is severely under researched, so that could be adding to it all. Good luck..

Boxerlady profile image
Boxerlady in reply to CripLady

I don't fancy trying gluten-free as eating wholemeal bread (homemade in a breadmaker 😋) really suits my digestive system and helps my IBS-C; I really seize up after a couple of days without it 😟

wilbertjellyfish profile image
wilbertjellyfish in reply to Boxerlady

Don't go GF, my friend is coeliac, its awful. She cant eat out without panicking that she'll get something with gluten and start vomiting. Most people severely underestimate how difficult it is.

I'd definitely ring your helpline. I always find the nurses very knowledgeable and helpful.

Thanks for your advice. Think I need to learn to rest.

wilbertjellyfish profile image
wilbertjellyfish in reply to CripLady

I couldn't go GF , i love bread. Not looking forward to menopause either its definitely not fully understood. Hope your GP can get you some relief

Boxerlady profile image
Boxerlady in reply to wilbertjellyfish

Thanks.

Have you spoken to your rheumy nurse recently?

Mmrr profile image
Mmrr

We are all different, but what you do sounds like a lot to me despite being on a plethora of RA meds myself.

I am presently changing rheumatologists, one last push to see if I can get an improvement in my health. I'm 63 and was very physically active before RA. A short walk of more than 50/60 metres wouldbe wonderful for me.

If you feel you could gain further health gains, a med review might bein order? Or ask for a change of rheumatologist?

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