Give me some positive stories please: Awaiting my first... - NRAS

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Give me some positive stories please

K2013 profile image
22 Replies

Awaiting my first appointment with rheumatologist in a few weeks but 99.9% sure it’s RA. Horrifically tired, muscle stiffness, sore toes and very swollen, stiff painful fingers. Some signs of nodules forming. I’m 55 and not ready to give up work but I’m in a profession that uses my hands all day and it’s a real struggle. Love racket sports and have had to stop that too. Give me hope that once I’m on decent meds I will get some semblance of my life back.

22 Replies
Mmrr profile image
Mmrr

Sorry to hear that you might have RA, but be assured that many people do well once established on medication. It may take a wee while, up to 12 weeks for effect, but once established most work well for the majority of people.Many of the people on this forum, myself included, are people for whom meds have not worked particularly well.

The world of RA moves slowly, so patience is required, but 🤞that you find your medication quickly.

Potatos profile image
Potatos

My story is positive. RA came on very quickly. I was very ill; in constant pain, unable to lift a cup, hold a knife and fork, running high temperatures every day, walking was a painful shuffle and the fatigue overwhelming. It took a year to get sorted, I am now on methotrexate and adalimumab and I am stable and have been since 2006. I am out of RA pain, I ski, have an allotment, have renovated a building, built a six foot sandstone wall, landscaped the garden (with some help from my husband!), I can play tennis, swim and I walk regularly. I do have some joint damage, my RA was very aggressive initially and it took a while to be diagnosed and get onto medication but since starting on adalimumab there has been no further deterioration. Not everyone is lucky enough to find the right meds and for them to work so well and for so long, but it can happen.

AgedCrone profile image
AgedCrone

If it is RA …in this day & age you are quite likely to get a good quality of life …but it won’t necessarily happen overnight.I was diagnosed at around your age back in the 1990’s when we didn’t have such a choice of treatments…..but I & my rheumatologist persevered & here I am doing fine.

Listen to your rheumy & persevere long enough to give the drugs a chance…even if it means taking a bit of time off work.

Don’t think changing your meds too soon or often is the answer…..

I hope your rheumy appointment goes well…have a read of people’s experiences here…& make a short list of questions to ask the doctor at that first meeting.

Good Luck……hope all goes well.

Boxerlady profile image
Boxerlady

Another positive story ☺️I was diagnosed in 2019 at 59 and currently am doing very well on triple DMARDS - Methotrexate, Hydroxychloroquin and Sulphasalzine. I don't need any pain meds now and apart from some early morning stiffness and the occasional twinge, I'm doing well. I was lucky to be diagnosed and started on medication quickly so no joint damage so far. I do work a bit less than I used to and factor in rest days after particularly busy days but as I'm self-employed that's relatively easy for me. I did do less work in the beginning (I also use my hands) but that was mainly to protect my joints while the medications kicked in. I was an avid non-exerciser prior to diagnosis but now attend Aquafit classes (which I enjoy far more than I expected to) as I realise that I need to strengthen my muscles to support my joints. I do hand exercises in the shower every morning and wear a wrist brace at night as recommended by the OT. I try to eat more healthily than before ( more oily fish, less mass-produced red meat) but still enjoy treats like cake and chocolate.

My GP gave me great advice at the beginning - try not to Google, stick to recommended sources/sites and don't read anything older than a couple of years as developments are being made all the time. NRAS is a great site, Versus Arthritis is another.

Lots of support and information here so keep posting 😉

helixhelix profile image
helixhelix

Another positive story from me. Like Potato it hit me hard, and I was totally crippled by it to start with. Now I live a full and active life, but it did take a year to get it under control. Have faith - the drugs these days are very effective. And have patience. ..

11 years on I am 11 years older, and sadly plain old osteoarthritis is much more of an issue than the RA.

K2013 profile image
K2013 in reply to helixhelix

Thank you to all for replying. The future scares me- I think once I get the official diagnosis and decent meds I can get on with it and get my head round it. I have 2 very elderly parents and a son with ulcerative colitis who all need my support so it’s hard to take a step back and prioritise me. I know I will have to, I do exercise regularly but I know my diet could be better! I have had a hell of a stressful few years. I am weary and this is the last thing I need. Thankfully I have an excellent and very accessible dr who has pushed things through quickly. One day at a time I guess!

Chockyuk profile image
Chockyuk in reply to K2013

Hello 👋 I’m sorry to hear you might have RA, but like you, I was going through a stressful time, mine was my marriage break up, plus other things I could have done without at my age. I am convinced the stress didn’t help my health, and my consultant says it is the worst thing for the condition.

But I do have positive news about the treatment, luckily enough I was diagnosed very quickly, put on steroids, then Methotrexate. I was in complete remission for 3 years and foolishly convinced myself I didn’t have it. 😖

But in the past 6 months I’ve had 2 nasty flares, more steroids and increased dose of Methotrexate later………it’s been 12 weeks now and I’m kind of ok. 🤞🤞 so far. There are lots of different meds out there, no one size fits all, so it’s trial and error really.

Good luck with your treatment (if you are officially diagnosed) to have a good GP and Rheumatologist is definitely key, I’m lucky to have both. If you are diagnosed and you get the meds that suit you, I’m sure you’ll be back doing everything you did before.

Let us know how you get on 🤞😊 everyone on here is most helpful.

smilelines profile image
smilelines

Things will get a lot better just hang in there. I was looking back at this site and many people have been here and then disappeared when they are controlled and busy living a great life.

JammieDodger3 profile image
JammieDodger3

Sorry to hear this. As the others have said, things will get better. I’m in my thirties and was diagnosed earlier this year, so RA is still very new to me; your symptoms are very similar to mine. About a fortnight before seeing my consultant / medication, I reduced the amount of processed foods I was eating as much as I could and increased the amount of (green) veg, which really helped; I went from having a claw like hand to one that could move again (not like normal, but certainly much better!) I’m now on methotrexate and that has really helped me over the last few months - as has looking at ways to reduce the stress in my life, I find Pilates and meditation really helps me. Wishing you all the best.

Bethany02 profile image
Bethany02

Diagnosed a few years ago now been lucky I think did not get on well with methotrexate my liver hated it been on benepali for quite a while now have normal aches and pains for a 62 year old but still lucky enough to work full time and want to continue to do so for a while yet. If I have to work 12 hour shifts occasionally I really know whats what but other than that happy to continue. Because of the nature of my job I spend a lot of time indoors and not a big sun worshipper so I read somewhere low vitamin d levels can make rheumatoid worse and got mine checked. They were low so I now supplement. I'm also on sulphazalizine too twice a day. Covid discussers are recommending vitamin d 4000u, zinc 25mg and 200mg k2. Even though I've already had it I am trying to support my immune system as much as possible. It's really interesting to me how different everyone is but like someone else said ask all your questions and don't be shy about phoning the nurses for advice if things don't seem right.

Hopeful1 profile image
Hopeful1

I too am living a good life again in stable remission after an aggressive start of the disease. The start is hard but once you have found the right meds for you the future is so much brighter. While you will get excellent advice and support here and from NRAS don't forget that most regular users here are either those at the start of the journey or those with less usual complications. So many more come here at the start then when settled get on with their lives without further need of it. Don't think we are therefore necessarily representative of all RA folk.So many more encouraging stories from those no longer using the site. Good luck with your journey.

Bookworm55 profile image
Bookworm55

Hi. As those above have shown, there are many really positive stories about the progress made by people once the correct meds are found for us. My RA too came on very suddenly over a matter of days but I was diagnosed quickly - partly due to my persistence with my GP- and the meds control it well - just the occasional twinge really. As others have said, people generally only post here if they have a question or problem. Pacing yourself is important to avoid fatigue (common) - but not always possible!

ABwn profile image
ABwn

When I was first diagnosed it took a couple of months to sort out medication. Do let them know if you have any problems with the meds, there are a number of different mixes that can be tried. Good luck.

skinnycappuccino profile image
skinnycappuccino

Hello K2013 - ever since I was put on biologics (Simponi in 2012) I got my normal life back! I can work and exercise almost as normal ("almost" because I have permanent damage in my feet from when my RA was uncontrolled)! I've had to change meds twice (first from Simponi to Olumiant and then this summer from Olumiant to Kevzara) but as long as you're given steroids and adequate painkillers until the new med is working, changing meds is not a huge problem in my experience.

All in all, I've been in remission for about 8 years (with a few flares, especially before/while changing meds). I'm a huge fan of biologics - they've changed my life completely. I wasn't able to walk, eat, shower or even sit down without being in severe pain before. Nowadays there are so many excellent meds available that I'd say your chances of getting your life back are pretty good 😊 It can take a while until you find the right medication and it can take a while for it to kick in (Kevzara took 4 months for me) so it's important not to lose hope!

All the very best - let us know how you get on!!

Christine xx

Ritaritis profile image
Ritaritis

Hi pet, don't give up! The meds take awhile to kick in but they do work. You could look into alternative medicine. I take ginger that seems to help and try to meditate some days.🐕👍🦄. Have a happy and healthy 2022.

dtech profile image
dtech

Well I was in a similar position about 10 years ago and the same age. And my job was all hands on. Plus I play golf! So believe me I can understand what you are going through. But luckily, I got diagnosed early. They threw every drug at it😉. And took about a year to stabilise. So 10 years on and still on methotrexate, hydroxychloroquinine, and sulfasalxine, I’m now retired from my job last week, having carried on with it till now. Plus I’m regularly playing golf and doing a lot of walking with my dog. So let’s hope for a positive result and keep battling.

Blodynhaul profile image
Blodynhaul

Empathise with you over use of hands being so important to you, same here. Like others have said, many folk do very well on the drugs - as I did for many years and was able to do everything I used to, most of the time. It's different for me this year with nothing working & the RA gone mad, but I had many years with it under control. One good thing is that there are a whole range of drugs/treatments for RA, unlike a lot of other auto-immune conditions, so excellent chance something will work well! Good Luck X

K2013 profile image
K2013

Thank you to all. I think it’s cos it’s taken a few years to get my sons colitis under control I don’t want to go down the same road. Having helped him along his auto immune disease road I’ve learned so much- I want the major drugs early 🤣 Let’s not faff about and waste time! I’ve got to get back out there.

Boxerlady profile image
Boxerlady in reply to K2013

That's the spirit! I agree with Blodynhaul that it's important to emphasise that your hands are vital to your job - I'm sure that's why I got seen quickly and why the consultant was keen to treat me agressively. I've mentioned it at every opportunity but at one appointment the medic commented on it before I did so it was obviously all over my records 😉

smilelines profile image
smilelines

It will be three years in January that this "thing" got me. I am still uncontrolled. Been mucking around on different doses of leflunimide for 11 months now. Was diagnosed with RA but last month it was changed to PsA so will be given a biologic in the future. Was told last appointment it is unlikely I will ever go into remission because I have had this so long. So, I agree. Get this under control so you can go into remission like others on here have. Sometimes, it is even a drug free remission!!!! Best.

Gottaloveastaffy profile image
Gottaloveastaffy

Just be patient xx it’s frustrating and things don’t go to plan x I was on crutches back in 2020 and could use my hands x was referred to rheumy and started meds after a long course of steroids x I am currently having the odd flare and have stiffness in my feet and have been on different combinations of drugs to get to here. They are happy with my progress and continuing with current meds now for the foreseeable future and I’m hoping that the foot and hand pain will go completely eventually but it does take time.

I’m not a patient person and always want results now ! Lol

I am 52 and still working full time and start a new job soon but I do get very tired still and some days are better than others

Some one gave me an article about the spoon theory on here I can’t remember who but it was really good and puts things into perspective

You have to pace yourself that’s what I am learning and do things when you want to not when you feel you have to

I’m

Sure that I’m time you will be able to do lots of what you love 💕

This is a great place for questions and rants and I quite often come in here when feeling fed up and always leave feeling much chirpier xxx

stillsdisease profile image
stillsdisease

Note I have Stills Disease which for me manifests as RA type joint pain in all the joints, afternoon fever and continuous dry sore throat. I have other associated AI things like Lichen sclerosis, Interstitial Cystitis and some skin rash thing I can’t remember how to spell when I have brain fog like today.Anyway my point is that when diagnosed aged 17 the consultation told my parents I’d be wheelchair bound for the rest of my life and I’m now nearly 60 and still walking and never used a wheelchair since that first attack over 40 years ago, so hurrah there are positive outcomes.

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