I’ve had RA for 10yrs, I’m 47 and this is the first forum I’ve joined, I’m battle weary, in a lot of pain, frightened and feeling the least optimistic I’ve ever felt since diagnosis.
I know everyone reacts differently to each drug but I’m just looking for some hope…
Had Etanercept circa 8yrs, that failed after hysterectomy last Summer and since then I’ve never been so bad, not just pain and exhaustion, but feeling actually quite unwell. Had a lot of steroids before starting Simponi which only seemed to work for 2mths before I’ve fallen off a cliff again with CRP over 50 & ESR nearly 80.
If it wasn’t for my family, I think I’d give up.
I’m trying to make a choice between Baracitinib and Tocilizumab now? I’ve compared side effects & risks but if anyone can offer any experience I would appreciate it. Sorry for the gloomy first post and thank you for reading 🙂
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Inanotherlife
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Just wanted to say welcome; I'm sure that you'll find lots of help and support here. I can't help with the medication question, I'm afraid as I've only ever had DMARDS but there's bound to be someone with some ideas for you. Just wanted to reassure you that we're a friendly lot 💐
Welcome to the forum, I think you will find it really supportive. It can be really demoralising when you feel unwell day after day, but, the new meds tend to work quicker than the older DMARDs , so hopefully you get started on something soon.
I've been on both tocilizumab and baricitinib. As you say we are all different, but I've found the JAK inhibitors (baricitinib) to have less side effects and to be much more effective than the biologics (tocilizumab).
The JAK inhibitors also have the advantage of coming in tablet form, so no need to inject as you do with the biologics.
The NRAS helpline is really useful, just to have someone to speak to, it is open Mon - Fri, 9.30 to 4.30, number 0800 298 7650.
When it’s bad, I have so much going around my mind, which drug? Will I get cancer from this constant inflammation? Will the drugs give me cancer, a blood clot, a heart attack? etc etc, it’s quite overwhelming!
I was offered a JAK, Tofacitinib some time ago but I’d read it was linked to cancers & heart fatalities so struggled on with Etanercept. Am I lucky looking into it too much, as someone who hasn’t really got a choice? Thanks once again.
All medications have side effects, the biologics too, but the risks are small and the risk of untreated RA can be greater. I've always focussed on what is best for me now, to improve the quality of life now ? I have no particular wish to live longer , but with a very poor quality of life.
hi! I’ve been on Baricitinib for years and after 5 failed drugs I cannot tell you what a relief it was to be on something that worked. All drugs carry side effects/risks. The drugs companies have to cover their backsides too in what they list! My rheumy is using Baricitinib as his prescribed drug of choice. That’s good enough for me. It’s short acting and you can come off it very quickly if you have any concerns. I go for quality of life every time. Pop Baricitinib in search and see how many people you will see who get on well with it. Welcome to the forum. Only understanding friends here.
I don’t know because when Etanercept was stopped I was given Abatercept which seems to work well with Azathyoprine. It is hard but to just add my AKI leading to CKD was not caused by any RA med but a common every day one. These things are just chance and balanced risk so don’t overthink it. I hope whatever you decide does work and work well. X
Thank you madmusiclover & medway-lady, I do overthink these things but ultimately I’m trying to minimise the chances of being in a worse situation than I am already with the RA, I know it’s futile and my mindset is increasingly shifting to the here & now but I have a young child and I worry about not being here for them.
It’s always been a bumpy road but for some reason since my hysterectomy, it’s moved to another level. I actually long to just be able to do the housework or go shopping, nothing fancy, just to be able to do the ‘mundane’ would be great. It certainly makes you appreciate the smallest things when times are bad with it x
Mostly it’s time and patience becuase RA is not a hopeless condition. I lead a near enough normal life. I employ a cleaner because I am busy not because I can’t do housework. I used to work full time and it really wasn’t an issue so stay positive and try not to fret about stuff you can’t change and concentrate on things you can. Your life is not over nor is it hopeless, you are clearly young and have time on your side. I’d urge you to talk to your GP as I believe sometimes people can get some anxiety about medications but in reality the way I look at it is that if there is a 10% chance of side effects then there is a 90% chance I won’t get any. But it is about mostly being positive. It’s not easy but these days treatments are very good for the majority of people. Clearly not for all but travel your own RA journey with positivity and you will get there and forget about in another life but enjoy the one you have. Xx
I can’t give you advice about the treatment mentioned, but can sympathise with your feelings - it’s hard when RA rears up and previous treatments stop working. I love your name - says it all!
6 years ago I was feeling like you. I'd had ra for 6 years and nothing had worked including 4 biologics. I was on masses of steroids (can't take methotrexate as I have a problem with my liver- diagnosed at the same time as ra). Tocilizumab has been life changing and I am fitter today at 62 than I was at 40. However, it took 4 months to work and is a bit if a faff if you're on holiday. All drugs have side effects - risk/benefits. I don't really have any noticeable ones with tocilizumab. JAK inhibitors weren't available at the time. I do hope that you find relief soon.
Absolutely none. I'm 62. 5 feet 7 inches and 9st 2 lbs. I'm so well I have been able to exercise more. I lost all the weight I put on with steroids. I do eat really well though. No sweets, puddings, biscuits or crisps. Cook from scratch every day. Almost always gave a cooked breakfast of some description! I admit to being very disciplined
thanks for the reply. How long after steroid use did you start to loose the weight. It’s driving me insane. Like you said I’m hoping to do alot more exorcise when starting the injections. And I also eat healthy I do have Saturday as treat day haha
I put on just over a stone in weight as I was on steroids for 3 and a half years (daily tablets to reduce liver inflammation and occasionally injections to control my raging ra). I had an awful moon face (an aquaintance didn't recognise me) and could easily have put on 3 stone without an iron will - some evenings I was so hungry. The weight just slowly fell off in about 10 months. I didn't even have to try and lose it. I have been roughly the same weight throughout life, steroids and pregnancy excepted. However, I never sit still and am a bit of a fidget and just looked at my step counter for yesterday 15,500. I suppose this all helped
I can’t wait to come on them. They are awful Iv been on them just over a year. Iv reduced my dose to try and slowly shift it but then the pain is back so it’s a no win 🫤
I describe being on steroids to people like being a bit like Bradley Cooper in the film ‘Limitless’ - when they’re working and have pulled you out of a pit, you can blitz the housework, accept an in invitation etc and even feel a mild sense of euphoria (or maybe that’s just normal if you’ve not got RA) but coming off them often sends me right back into the pit again! A completely false sense of well being that for some strange reason always reminds me of that synthetic cream you always get in cakes on holiday 😄
I’ve been on tocilizumab since 2015 and it has been great. The only side effect I dislike is the weight gain and inability to lose it! I failed on enbrel and humira before starting toc. For me it started working in 24 hours but I think I was lucky. Good luck!
hi Ruth is the weight gain a lot. As Iv been on steroids since last year and put on alot on weight. With starting these injections I wanted to come of the steroids to try and loose the moon face.
The moon face will definitely go once you’re off the steroids. The toc weight gain has been very different from being on steroids. I was a size 8 when I started the toc (2015) I’m now a 12, it’s more like it’s made it extra hard to lose weight I’ve gained but I’ve also turned 40 in that time and we had covid lockdowns. When I lost weight in my 20s I lost two stone in about 6 months I definitely can’t do that now. Although I can put up with the weight as the toc keeps me so well controlled. I haven’t flared since being on it and my CRP has pretty much been <1 since then.
as thank you for the reply I know I was 9 stone last year I’m now hitting 12 with steroids it’s driving me mad. I just can’t seem to shift it no matter what I do. I just want to moon face gone. Hoping to start the injections soon so I can come of them and hopefully loose it.
We can only speak of our experiences…. Many of us can identify with having failed on a variety of drugs….
For me tocilizumab was the silver bullet and for 3 years I’ve been able to live a relatively normal life. Sadly, we all know that the silver might turn to dust at some point, but we make the most of every gifted day.
You have to take a leap of faith and hope, until the research scientists find a way to predict which drug will work for the individual.
I have been on tocilizumab for the last 5 years. Prior to starting that I had had several months of a massive flare. It took a while to work but after about 8 weeks I could tell I was improving and after about 4 months I was able to go back to work. It gave me my life back. It doesn’t seem to be working as well now but I’m still doing ok. The only side effect I have is that it lowers my neutrophils/white cell count so I just inject once a fortnight.
I haven’t tried Baricitinib so I can’t comment on that.
Hi and Welcome😊. I didn’t have a choice as to which one but I’m on Baricitinib and found it to be the only one to bring my CRP into normal range (first time in about 4 years ) It works quickly around 3 weeks and I’d rather take tablets than use the injection pens. As we know everyone reacts differently and what works for one doesn’t for another. I have had some fungal skin infections which have been put down to this medication but it has definitely worked the best so far ( meds I’ve had on my profile). Good luck you will get through this but I know how hard it is when you are in so much pain. Always post -even if it’s just to let off steam ! 🥰😘😘
I too was floundering a few weeks ago and went on this forum.What a life saver.I am nearly 80 and have had RA for last 23 years.I recently had a biologic for 9 months,Benepali which I injected weekly,no side effects at all,but just did not reduce crp enough.Have now started filgotinib a JAKInhibitior,only been 3 weeks,but already improvement in pain and mobility in wrists and hands,again with no side effects at all.I have read on here great results from JAKswhich they are offering you.I would grab it with both hands if I were you,as they seem a miracle drug for many.Please please do not give up,there is so much on offer now for us.As I say I am nearly 80,and am able to do my garden,my housework,drive and dog sit for my son.Yes,there are days when your body says rest,but the next day you feel better.keep posting on here and update us,even on bad days,and you will get great support and reassurance,as we are like one big family,there for you !x
Thank you all for sharing your experiences, it’s been very helpful in more ways than one. I’m going to ask to try Baracitinib. I like the idea of the short half life in case of becoming unwell, infections etc
Simponi was monthly and I ended up in hospital 2 days after the second shot. I may be wrong but logic tells me that the the less frequent the medication, the bigger the ‘hit’when you take it.
When I was on Etanercept, because it was weekly, it was easy to stop or delay if not well.
Welcome to the group. You will find lots of help and support here.
My RA was diagnosed in 2004 and I went through various meds before I was put on Etanercept. It worked until 2021 although I’ve never been pain free. I’m now on Baricitinib. I didn’t have any symptoms and it started working after a couple of weeks, but unfortunately is no longer doing so. My rheumatologist is going to change me to Filgotinib, but not until I’ve had knee surgery in June.
Thank you, it’s encouraging to hear everyone’s experiences with the different treatments and to know that you all know how it feels to have RA.
Can I ask if anyone is sero positive? I’m told that whilst it’s more severe, it usually responds better to treatment (they may have told me that just to try and counter the more severe part!)
Whilst I’ve had it 10yrs, I could push it to the back of my mind when Etanercept was working but now I seem to be much more worried about the future in terms of being crippled and it affecting my organs.
My rheumatologist told me I’m in the most severe 15% of RA patients but couldn’t or wouldn’t offer a prognosis.
I don’t know how far I can look ahead anymore. I appreciate no one knows what tomorrow may bring and statistically it knocks some years off just by having it but I just don’t know where I’m up to!
I was diagnosed in my 30s with severe erosive sero positive RA. I had a hysterectomy in my early 40s, a similar history to yourself. I will be 69 soon and I am still going strong. When I was first diagnosed there weren’t the drugs that are available today and the severity of our disease was known to shorten our life span, few passing 70. This has been completely overturned by the drugs that have become available which are far more effective in controlling inflammation and in protecting our joints and organs long term thereby extending our life span.
My philosophy is follow the advice of my Rheumatologist with regards to treatments, lead a healthy lifestyle and enjoy the sunset years of my life to the fullest. I plan to be around for the next decade or two.
We all have to weigh up possible side effects of drugs against the life limiting effects of our individual type of disease. We are well monitored and drugs can be stopped if side effects occur. It is stressful particularly if young with family responsibilities. We on here can speak of our personal experiences, your rheumatology team are the ones who can advise you best about treatments, it’s good that they give you a choice but it does add to the stress.
I wish you all the best and hope you find that effective new treatment soon so that your enjoyment of life resumes.
I'm sero positive. But I was only diagnosed a couple of years ago. I'm on my 3rd DMARD to try. Fingers crossed. All I can say is this forum has been a godsend for me. I'm up and down like a yo-yo mentally. It's a lot to take on and adapt to. Welcome, although I think we all wish none of us had the need of being on here but it's the way it is. We all try to help each other. 😊
I'm sero positive and diagnosed about 4 years ago at 59 which I'm sure was easier than when younger. I was lucky in that I was fast tracked and got onto medication quickly; I'm on triple DMARD therapy and although things aren't perfect, it's been pretty effective for me. It must be much harder when diagnosed younger and having a hysterectomy last year must have been really tough. Have you been given HRT? As I understand it, you can go into menopause sooner (or immediately!) after a hysterectomy and I had a really rough time emotionally as well as physically when I was peri menopausal and that was without a hysterectomy or RA to contend with. Just wondering if you've considered that hormonal issues might be adding to your problems.....
I am sero-positive. I am currently on Methotrexate (Metoject - weekly injection), Sulphasalazine (2 a day) and Tocilizumab (weekly injection) and my CRP/ESR have been in 'normal range' for some time now. Tocilizumab has given me my life back, to an extent. I have been through a number of biologics, some of them working for quite a while, but Tocilizumab has been the best one for me.
Good luck in your RA journey, and stay in touch. 🙂
thank you for your replies, sorry we’re all having to deal with this but I certainly don’t feel so alone with it now 😊
I’ve had a bad few days so my Rheumatologist thankfully said he’d see me again this morning. He’s upped the steroids and gave me steroids shots in my ankle tendon & bone, hoping this will prop me up whilst he’s requesting the Baricitinib.
I was reading about some research about a test that will be able to tell which RA drug each individual will respond to best from the off via using molecular profiling so fingers crossed it becomes available soon!
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