Just reflecting on many peoples comments on here... does medication actually help people ? I m newly diagnosed and it feels like I m on a trajectory of medication, pain and benefits.
I m grateful I 've got a great partner and enjoy lots of things around work but it's a despairing prospect.
Yes medication absolutely helps. Problem is getting the one that suits you. Yes there are side effects but the benefit has to outway these. Feel for you. It’s not an easy road, talking to a good caring rheumatological team is essential as they have a great deal of knowledge. Also read the NRAS publications on the treatments. All sounds very daunting but it’s not all gloom and doom.
Yes they help. Massively! Thanks to the drugs I have a nearly normal life, without them I am immobile and in permanent pain.
Forums like these aren't representative as generally people only post when they are having problems. And the people who have the worst type of disease also tend to post more quite understandably. I was in remission for around 5 years, and what would I have posted? "Having another good day"? Boring and annoying for everyone else..
The first year of this disease is usually the worst, but once you stabilise things will change for the better. Hang on in there, look after yourself and remain hopeful.
I think the experience/ journey to reach remission is interesting , helpful and gives hope to others. To just disappear off site once better is slightly abandoning others. If I reach remission, I will remain on here as a support to others. I hope everyone of us reaches that stage. X
Well that's why I'm still here I guess. But I can think of hundreds of people over the years who have been on here a lot during a totally miserable first year/18 months and then vanish shortly after a post saying that X finally seems to be working. Some pop up a couple of years later to say how well they are, like Lucy11, but many don't. I wish people would as sometimes I worry - don't know if you were on here at same time as Bats? But I do still fret about her.
Yes definitely HH. And you are one of those I mentioned to a newcomer as being an immense support to everyone. I dont recall Bats. It's a shame when people don't check in from time to time as we do care and worry about everybody who has been part of this forum.
I hadnt thought about posting & then going away, in that way, so thanks for that. In my world & in my defence, I just forget & get wrapped up in other stuff. Plus I have other conditions that cause me pain & grief, so they take over.
Don't feel bad about it....it's pretty natural. It's good that you can move on, as that's the aim for people to be able to live normally again. I just happen to have the time, and looking on here is part of the way I pace my day. Do stuff, then sit down with cup of tea & 15 minutes on here, then go do stuff again.
Medication does help but there is no one who knows your body like you do. I am 100% certain that stress topped with bouts of anxiety took its toll on my immune system. Rheumatoid was the result! Therefore, I am now mindful of keeping calm although I still forget with this crazy fast life we are now in. When I forget and get anxious I feel a flare coming on and I get all the symptoms associated with Rheumatoid Disease. So yes, meds block antibodies from mistakingly attacking healthy joints but lifestyle changes are equally important. Eat well, exercise ( in moderation) sleep at least 7 hours and go for massages, swim etc. Be kind to yourself, hell you deserve it! X
Yes, methotrexate has been my saviour in many ways. I still have on going problems, and not yet stable. But without methotrexate I'm housebound and miserable.
You may find a drug that works for you immediately. Good luck.
Sorry to appear sarcastic but are you serious?? My treatment acted like a "silver bullet" with pain, swelling and anaemia disappearing within 2-3 weeks. I would be lost without it. I am not alone, knowing this from the local RAS- group. The medication is wonderful. Okay; there is the risk of being susceptible to infections when on biological therapy but this can be dealt with by common-sense hygiene etc. . A relatively small price to pay for a pain-free life I think. Good luck with your therapy as well
This is a good thread for someone like me, When your newish like me you don't read much positives about the drugs,only the problems with them
so its lovely for me to read the positives
Thanks for starting this thread
It actually does! I had proof, not that I'd recommend it! I'd had a 3 month lack of meds when an admin error meant I wasn't down to see a Rheumy to reinstate my meds when I returned to the UK from living abroad. Then the Rheumy I was due to see cancelled just as I was about to leave home for the appointment as he had a norovirus, understandable but not helpful for me. By the time I was allocated another Rheumy I was in a bad way. Inflammation everywhere, I had to have my wedding ring cut off because my finger was turning blue. So yes, meds work.
We've all been where you are so don't worry, you're not unusual in thinking as you are. Maybe I was different because I would have taken anything to bring the inflammation & pain down. Fortunately only my feet were badly affected but they'd become so painful in the fortnight from seeing my GP to diagnosis I could hardly bear to put one foot in front of the other so they shoved everything my way. I was prescribed hydroxychloroquine, a short course of steroids & 2 NSAIDs... one to take every evening & the other if that wasn't enough. This put me on until I saw my Consultant for the first time 3 months later.
I'm in receipt of PIP, have been since 2014. At my latest review I was awarded enhanced Daily Care & enhanced Mobility, awarded til 2024. I also have a Blue Badge, both are godsends to be honest.
I hope this helps & gives you some impetus to start meds.
But also remember that many of us don't get benefits or Blue Badges or anything like that because we don't need them! I know I'm lucky in my response to the drugs and having had good rheums, but there are a lot like me. And you could well be like that too.
If my feet would behave & respond like the rest of my body to meds I dare say I wouldn't either but as it is they impact hugely on my life. This is why I usually say I'm generally well controlled. I admit I've been lazy in looking for another Rheumy, I'm not overly happy with her choice of me remaining on steroids forming part of my treatment, I've had this discussion with her I don't know how many times. I'm pretty sure she's stalling the next step medically wise, I can't go any higher on MTX because my liver reacts but I've tried 3 other DMARDs. I've been fortunate that my liver has behaved on 20mg because it hasn't previously, I was very hesitant to increase it though, I let her know my feelings. We are about to move but it's a stop-gap until we decide where we'd prefer to be, that could be anywhere in England, one of the excuses I've used to my h who wants me to change Rheumy. It's a horrible feeling & it bothers me that my Rheumy isn't treating as she should, hate remaining on steroids & have considered tapering off them myself & present to her the body I'd have without them but on the other hand would she just increase the dose? I'm not being a particularly good advocate of myself just now, I'm having a wobble.
Sounds like it, as unlike you not to be decisive. I'm with your hubby on this, and a fresh pair of rheumy eyes could be the thing you need. And perhaps better to do it now, even if you might be moving as if you don't like new option well it won't be for long? I'm fine with NSAIDs and fine with steroids, but I'd feel uncomfortable relying on them too unless I knew it was the last resort.
I'm with hh Paula. I too would be really concerned about constant steroids. When we were discussing future treatments, after nearly dying on tocillizumab, I was offered steroids, but I refused, and now I am on my 5th biologic, abatacept, and, everything crossed, I am beginning to feel some benefit. I remember listening to one of the world leading rheumatologist, who stated categorically that he would never prescribe oral steroids, only periodic injections.
Perhaps it is now the time for a fresh pair of eyes? Good luck, M x
Thanks both. I know I must pull myself up by my bootstraps, I just lack enthusiasm, a bit not quite myself so need to give myself a good talking to & sort it. It's not helped by losing my GP & not having any faith in the others, except for maybe the other female GP but she's now handed in her resignation. So we need to seek out another Practice. I spoke about this at my last appointment with now resigned GP & had more or less decided to go with hers (we know him socially) but she says he's making noises about retiring so it's pointless signing up with him, my GP doesn't know where she'd go either. So, I'll see one of the other GP's, actually I'm going for my flu jab in the morning so will ask the Nurse if she'll book me an appointment, even if it's with the locum.
Thank you both for your thoughts.
Hi, nmh......Have you looked into how different health authorities respect the RA drugs we are now being prescribed when we move to a new area? I'm on RTX....I would love to move to either a flat or a bungalow to get rid of stairs, but I am wary ......RTX is suiting me really well, but as you know I am a very senior lady, & the NHS is getting very ageist.
I don't want to move out my area...only to find they won't fund Biologics because of my age ..... and of course my DAS score would not qualify me now because I'm well controlled. I wouldn't want to have to go back to being in pain......in order to get the RTX reinstated.
Maybe for you it would be worth waiting until you are permanently housed, & then see what your DAS score comes up to...but of course with feet being your main problem you might need a creative Rheumy......unless you move within the same health authority....then a change now might benefit you.
You know my feeling on Pred...drug from hell.....it had terrible effects on me so nobody would get it past my lips ever again, but coming off it now for you could be a step too far...but it's certainly worth a try.
yes the medication has been a godsend and without it id be bedbound and in god knows what state immflamation wise, also i try to eat healthy and exersice regulary and doing not too bad at moment since being changed from benepali to humira 2 months ago,also without this forum i would be lost as the valuable info we get on here is great and also talking to people who understand what were going through
They do help this time last year I could not do stairs now I am ok it’s a very very slow process finding right med or meds time your on them etc but you will get their life will get better hang in their tc 🤗
The dmards didn't help at all. The side effects were horrendous. My current biosimilar seems to be doing something.
As someone who didn't take a paracetamol I was so hesitant to take meds, but some great people on here and their sound advice and stories helped my decision to persevere.
I take each day as it comes, on good days I forget I have RA, but yes it does rear its ugly head now and again plan B then comes into play on how to manage it. So this morning I awoke with, swollen, tender, stiff joints in my fingers. I ran them under cold water (so soothing), gently exercised and prepped for my day.
If I need to rest and take pain meds, then so be it.
I incorporate my medication along with a good food regime. Exercise when I can - and that would just be a walk either indoors or out as RA affected my ankles and feet, but it's all good, I am able to walk just not run.
There's a strong community on here that really inspire and help. I certainly am here to help and support and give hope in whatever way possible. 😊
Hi, I was completely disabled I could not even sit on the loo as both knees were given me excruciating pain when in sitting position 😳 neck shoulders wrists feet the pain and stiffness was so very bad back over a year ago ☹️ But now on meds (did take nearly 8 months) to find the drugs that suited me, I am now nearly my old self 😀😀 so do believe!! It will happen once finding the meds that suit you 💕 To be honest once first diagnosed you it is such a life changing shock x Keep moving take meds, get regular blood tests x And you too can be back to normal again 👏🏻👏🏻👏🏻 Lots of love gentle hugs, and remember we are always here 😘😘
Oh god! That brings it back! I couldn't get down to the seat without huge and painful effort, and then getting up again was awful. Too much information I know but wiping myself was a nightmare and so agonising as hands so painful.. You have really cheered me up as reminding me how it was makes me realise how totally normal I am now. I will stop complaining immediately. Thank you!
Me too.....horrible, horrible memories....thankfully never to be repeatedly!
When first diagnosed & waiting for test results etc I remember living in my Pyjamas because I couldn't move my arms away from my body to get dressed....don't ask how many days I didn't have a shower!
I spent a lot of time sitting on the stairs crying.......had plenty (stairs) to choose from as I was living in a three storey house with a spiral staircase to the top floor...could only manage that on my btm as it had a rope bannister.
So thank you who ever invented the drugs we feel better on......& for the sympathetic Rheumatologists we all deserve, but often don't find.
Really hope those of you still waiting for your drug find it really soon.
I could not function without meds. I collapsed 2 years ago this month, and as have been said above by others I also couldnt even get out of bed, when needed loo it took 30mins with my oh and daughter to help. I then could only stand, often stood in shower and got slooshed sown after. Im now on a cocktail of meds ( including steroids) and through trial and error have a mix I can function on. Without meds and a sensible lifestyle I would still be bed bound. I post less on hear than I used to after saying I was in 'my remission' because often what I would say has been said, so I will like a post in support of its content.
I would encourage you to be proactive in your journey with RD and this sight. I wish you all the very best and let us know how you get on please. ☺
Many thanks for that. I am scared in many ways but seeing the support onn this site is a great help.
I never wanted to take the medication, which is the same as most people and if anyone had told me I would be on this much medication I would previously said ... never .... However the meds are a necessity to my daily ability to function, for which I am greatfull. Thank God for progress so we have this medication.
I really wish you all the very best
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