I love this forum but my question is how many of us sufferers actually have long term good results from the meds we are prescribed? Also, what other long term side affects come from taking these meds whether they are working or not. Just thought I throw this out there. There is usually one person in the comment replies who has a positive story which is always nice to read. Blessing to all and have a great day. 😊
Any good news stories 😊: I love this forum but my... - NRAS
I'm a good news story..... drugs work well, no side effects to speak of, and in remission living a normal life.....
The thing to remember is that most people come on here when things are tough, when they are newly diagnosed, or when they have a problem with a drug. I've been using this site for a long time and I can't tell you how many newly diagnosed people have been regular posters for a year or so - and then they'll be a post saying that the drugs are working and they are starting to feel better. And we never hear from them again! They are off living their lives which is exactly how it should be.... But it does give a skewed impression for people coming to the site as it seems all doom and gloom sometimes.
Me too hh.....I have been on Rtx 6 monthly infusions since 2016.....it has been very successful, with no side effects & I now only need it annually.....or possibly just “on demand”.
I can now live a life equivalent to & sometimes better than my peers. I only wish it had been around earlier.
I take no other drugs except the odd pain killer because I do have bursitis in my hip..... but so do hundreds of other 70+ who don’t have RA ! I do still have regular blood tests...but that’s not a problem.
I hope any newly diagnosed who are in despair that things will ever get any better can take heart, & look forward to joining those of us who can live our lives without constant pain.
There is no hard & fast answer.....but don’t get so stressed that you don’t give your drugs a chance...in the past it has taken up to 6 months for a drug to work for me & much as I wanted to give up ...especially on those that made me vomit ....or worse......they eventually worked...but I am retired & my time is my own, & I do realise for young people with children to look after & jobs to keep that would not easy.
But as you say....the majority who post here are still on the very unpleasant journey to find that one medication that will work for them.
Sounds like you have worked out what works for you which is great. I admire you for sticking with meds when they make you feel so sick. I feel so useless atm, can’t do much at all, been almost a year of being lame plus other symptoms, fatigue, brain fog. I don’t work thank goodness so we are just muddling through helping each other at home. I’m 61 and I do hope I’m not goi g to stay this way, my mother has debilitating RA from about 56, it all terrifies me. Just a bad day I think and apprehensive about upcoming surgery. Been a hard year, and I used to be such a positive busy person, can’t take it for granted that’s for sure.
I’m sure you a very correct there are many great success stories. Xx
Things will get better...I think I was fortunate that during my worst times I had no responsibilities & I could just get on with coping with me, without feeling guilty that I should be doing something elsewhere.
In other words I could be selfish & stay in bed all day if I felt like it.
I think if I’d had the stress of....trying to work, or look after children or a parent it might have been very different.
I wish you well, & that your surgery is successful.
Remember the more you try not to stress the better you will cope...I do know how difficult that is but it really is true.
There is always hope Bonnie.... I am a bit of a Pollyanna ....when I was going through the first throes of RA & being convinced the doctors had got it wrong t, I kept thinking oh it’ll be better tomorrow.... of course it wasn’t ....it was 10 times worse but as I’ve said I decided to accept it & ride through it because crying & ranting was getting me nowhere.
It took a while until I found the first Dmard that helped & after that it was just swapping from one to another.
Wish you well with your surgery.....when is it due?
Wow 70+ is doing well. All I ask for is to make 50
I was on triple therapy of DMARDs for 8 years - MTX, sulphasalazine and hydroxy all together. It was fine, and no side effects to speak of after the first bit on each drug. But eventually it stopped working as well, so I had a biologic added in too. Now all fine again. I'm your age and can live pretty well.
Gosh that’s a lot of medication helix but I guess what works is all that matters. I didn’t know that you stayed on dmards once you started on biologics so I’ve learned that today. I thought it was one or the other. Don’t know the difference between biologic or biosimilar either.
It’s good you don’t get problems with dmards, my blood work went haywire, BP up high and stomach issues.
I’m beginning to think for some of us it’s a trade off at the expense of another health issue just to get the flares and disease under control. I’ve woken today not as bad as yesterday so that’s a plus.
Yep it’s all scary, think I’ve been in denial, I just didn’t want to get this disease as mum did. She’s passed now but was in agony for years taking mtx and pred helped but damage was done and she never walked without a frame again. Least we kept her at home till the end but I just had it in my head that I’d never get this. I’m sero negative and they tell me it’s inflammatory arthritis. They are all treated the same anyway. Not sure different between bio similar or biologic?
Biologics are the original drugs that are still in patent so very expensive. Biosimilar are newer versions based on same pattern, ie similar but not identical, and are about 10% cheaper. So NHS prefers those.
If you can, with most biologics or biosimilars it's best to take MTX alongside. Apparently that helps stop you building up antibodies to the biologic drug that stop it working. But if you can't tolerate MTX then there are ones that you can take alone.
And yes, it is a bit of a balancing act. I really don't want to take all these drugs (and my stomach certainly doesn't!) but I do want to live my life! I do everything I can to tolerate them, amd I think that makes a difference.
Your right helix... I’ve just determined that there is no life living as I am, I am basically bed ridden and chronically sick, so after my ankle surgery I will address it properly. I’m sure my rheumy will visit me whilst I’m in hospital. If I need to take whatever drugs that give me back a life then so be it. Thanks for your words.
Haha life is funny Rosie. It’s a awful disease I know that and. Ow I feel like this I have more empathy for what mum must have gone through back in the days of gold injections!! I remember dad telling me she just cried and cried in pain and she was a tough woman, now I get that pain, even when you bump yourself or knock a joint the wrong way. OUCH!!
Oh I remember having gold injections, they made me so unwell. You don’t hear of people having then nowadays I suppose much better drugs have been found.
diagnosed @ 73 w/RA May 2015, onto MTX Sept 2015[ tabs then injections] for abt 6? mths but MTX did for lungs so w/out anything except w/chair for abt 6 months then sulfasalazine which muddled my mind and emotions so now on 50% dose of sulfa Recovered lung function thru swimming and singing at home LOL. BUT Rituximab bio-similar infusion last July is still working well and it seems it may be annual infusion 4me. So much better, fewer pains, less tired and b12 clears brainfog... so try to hang in there, lot of trial n error. for most of us, and variations. Biggest pain now 4me is thumbs and xrays showed severe osteo-A but @ 77 this year dn't feel i shd complain. sokeep hoping, spoil yrself as much as poss xoxox
Hi. I keep hearing that one can go into remission. I feel great recently.. Went for a second opinion but I was told to carry on with treatment..which is Arava, methotrexate injections and prednisone. I don't understand. I feel that's a lot for someone who is doing well. Wish I could stop with all these toxic drugs.
I'm a good news story. Diagnosed 2008, started on slz then had mtx added two years later. November 2012 I started enbrel which I take along with mtx. Twelve weeks later in remission and to date still am. Had one minor flare in 2015, apart from that I don't need any pain relief. I've had no side effects either from my drugs....yes I know....I'm very grateful and very lucky.
For all of your suffering please don't give up hope.....remission is possible....I'm proof of that!! xx
If I stop taking my drugs it will come back and from what I've read over the years enbrel in some people stops working after so long and they have to go on another drug. I had root canal treatment a few months ago and I had to stop taking enbrel, I missed two injections and I started to feel the affects of not taking it, once I was back on it I was fine again.
I’m on mtx and Benepali. Run an incredibly busy and demanding business, have a great social life, no pain killers. I was immobile and in agony plus my BP went through the roof. I followed what the docs told me to do (I’m inherently lazy and have far too many other things in my life to bother with research etc...). Fatigue has gone and life is good 🌻🎉
It took 18 months to get to this point, but I’m also proof that it doesn’t have to be the end of the world.
I was put on Humira and was on it for 3 years and it was brilliant. I had to come off it because I suddenly reacted to it but have only been on strong painkillers occasionally since. I really believe my reaction to the drug was because I no longer needed it. I wonder how many others are feeling ok on drugs but don't need them?
I am a good news case, I believe, touch-wood! Having been on Humira for ten years this year, apart from the susceptibility to infections, I've done very well with the RA being well-controlled. I continue with my active sporting life, more important than ever nowadays! I could not really manage without the Humira because I notice it if I am late for my injection. I take paracetamol and Diclofenac now and again but the Humira was the silver bullet for me.
I was diagnosed in 2015. Really nasty onset, very disabling.
11 months off work to get on a drug regimen that worked.
I work long haul for an airline and have done for 32 years now and am off to New York in an hour or so after landing from New York yesterday morning. Its called a back to back. So I hold down a very physical career Yes I have to take Naproxen and paracetamol and Tramadol if I flare but I do as well as can be expected on Benepali and Hydroxy.
Having a steroid shot under ultrasound into my foot in a couple of weeks time.
I walk like Im 90 years old after a flight and first thing in the morning but Im determined to keep going as long as is possible. Yes it gets you down sometimes with all the blood tests and appointments and prescriptions , but I say battle on.
So I think all in all its a good news tale of RA as is possible under the circs!
All the best,
Good news here it comes.
I have had RA for 25 years and I am healthier now than when I first got it.
It Knocked me down...I was only 42 yrs old...what a shock.
I was semi bedridden and now I go to bed to rest not to sleep.
My life was gone....that is all the activities I used to do.
But then.....I found something new....writing. I wrote two short books lying in bed mostly.
I never got that sick again....I do have pain and tiredness still but I look back and I know I have come a long way.
RA kind of turns you into a problem solver. You have to be. I have learnt how to deal with travelling...bad days and I have learnt how to be grateful for my windows of wellness during the day. My sunshine hours of wellness. Two or three...maybe...or more.
I take myself out for coffee, i love this forum, I savour my life.
Methotrexate was my wonder drug...started 9 yrs ago.
I have been lucky...no joint replacements....I have a gopher and a three wheeled motorised bike. People are very kind to me when I am on my gopher!
So I hope you have enjoyed my GOOD NEWS story.
I am full of painkillers right now so feeling a little mellow! Lol
Wonderful good news story Rosie, I’m sure your books reflect your short message of inspiration. Never give up and appreciate every detail of life as it is a gift for sure. I’m sure I’ll feel better once this next surgery is over, and I can get on with rehab and recovery, best wishes and thankyou for sharing your story. 😊
Hi there, well think this is a little more positive, I have been having infection after infection, been on antibiotics for 5 weeks now. Saw my Rheumatologist last week and he thinks I can come off MXT injections, I have been on the injections for three years and tablets before that. My Rheumatoid seems to be under control, so we shall see how it all goes with out taking MXT, let’s hope the infections cease and my Rheumatoid stays in remission. Fingers crossed, will let this forum know how I am getting on without Methotrexate, the Rheumatoolist thinks MXT has caused my immune system to fail causing. Infections. Got to say though we have an amazing Rheumatolgy Dept, at the RJAH hospital, they always go the extra mile fir their patients.
Hi, I was diagnosed just over 2 years ago and although the first year was very painful, with steroid injections helping about 5/6 times that year, but one meds kicked in life started to get back to normal so I would say this last year has been pretty positive, meds I take are MTX 15mg injection once a week, 200mg Hydroxychloroquine per day, 5mg folic each day except injection day. Occasionally I take Naproxen for pain, some of that pain is for osteo-arthritis.
Overall I feel ok, just a bit unsure of what the future holds ....
I hope there are a lot more positive stories out there 😘
Thanks to everyone who replied and all the good news stories. We all have bad days and I’m just looki g forward to yet another joint replacement so I can walk again. I will definitely address my inflammation disease more appropriately but I’ve really been between a rock and a hard place for nearly a year now and up and down like a yo-yo too with symptoms and non Stop pain, really has worn me down this week.
I feel more positive anyway after reading your stories and guilty that I didnt maybe give the dmards a chance to work properly, it was complicated is all I can say. So glad of this forum.
Blessings and a Happy Easter to you all
So I have just read posts for two years and never posted despite having some positive experiences to share!
Really in favour of taking modern meds to reduce negative impact of RA.
Diagnosed in Autumn 2015 following positive blood tests though never exceptionally high. GP had been on a course and did squeeze test on me! Referred straight to Rheumatology after blood tests. Given steroid injection. And then quickly moved on to MTX 20mg. Continued joint pain and fatigue, but bloods not too bad. Added Sulphasalazine 2g a day. Sun reaction in 2016, but now keep out of sun and use Factor 50. DAS wouldn’t drop below 5 so after x-rays of lungs, TB inoculation started on Enbrel (etanercept) as well as kept on other meds in May 2017. (Changed to Benepali without consultation in summer 2018- just delivered by Healthcare at Home!) By March 2018 bloods suggested chemical remission. Still sleeping poorly because of pain so RA consultant put me on 10mg Amitryptaline at night. Btw when in pain use co-codamol as bad stomach reaction to ibuprofen etc. Have it in all strengths (8, 15, 30 codeine/500mg paracetamol) use combinations to treat level of discomfort. Have problems with feet, hands, wrists, forearms, shoulders, knees, hips where damage done before controlled. Amitryptaline dId not immediately help. GP suggested increase to 20mg. This did the trick and except when I overdo it physically (which is often carrying too much shopping! Or walking over 10,000 steps) I can get 7/8 hours sleep most nights without needing any pain relief. Often only needing 10mg now. Still stiff every morning but get underway pretty swiftly, doing stretching and warm shower- though often take ordinary paracetamol in morning. But rarely anything else now. Bloods show no negative effects from meds’. And chemical remission in relation to Indicators for RA. Still can get waves of fatigue if overdo it but by and large good quality of life. Now 56. Work and family. Took a while not to feel a little nausea when take MTX. Best for me to take sitting or standing upright and wait 30 minutes before I lie down and try to go to sleep. Benepali injections hurt a bit while Enbrel didn’t but I think the pre- injection pens are not so well made and the needles aren’t as sharp! You have to push harder- which if you have sore thumbs is a bit of a joke!!!
Best thing I learnt recently was how to avoid gagging on all the tablets. So you put your chin down and not up! Radically improved my quality of life as there are 13 tablets to take on Friday nights. Take folic acid 5mgs 6 days but not MTX day.
Btw Also take 40mg Statin. Put on that by GP the moment suspected RA, cholesterol down from 6.2 to under 3.
Cut to June 2017. Had not realised how RA can affect heart. Was going to have a Morton neuroma removed under general but ECG showed issues that had not been there in 2010 when I had last had an ECG. They refused to continue to the operation- had surgeons ink on my leg!!!Investigations proved that my heart was healthy enough but that that was now my normal ECG and they would give me a general in future. I believe my untreated RA affected my heart between 2011 and 2015 , and so I really believe that these meds I am on are the best thing to keep it at bay and reduce the damage it can do.
Can visibly see continuing gradual shift in fingers and thumbs, but guess must be considerably slower than would have been. Also toe joints. God knows what they would have been like without modern day meds or if I would have been able to walk at all by now.
When have taken MTX later in week ( if I want a little alcohol!) or Injection later than usual (if I have a sore throat/ cold coming on) I have always experienced physical decline so I feel
I am just in chemical remission walking the tightrope.
Thank God for medical advances. I feel very fortunate.
Thankyou for sharing your story, my you certainly have a bit to content with. I find the wrist and thumbs can be so annoying and painful, I use my knuckles to push myself up should I need to butmyou rightly point out that without these meds you probably wouldn’t be walking at all which in itself is a good news story.
I think it seems a common thread that overdoing life leads to chronic fatigue and maybe a flare so that’s worth remembering, easier said than done when most days I can do nothing so it’s only normal to want to do something useful when you feel good.
Mtx seems to be th first drugs used to treat inflammation with mixed success but it still appears to play a huge role in ongoing treatment.
Your phrase “in chemical remission walking the tightrope” is spot on, very clever description.
I wish you all the best and sending blessings for a happy painfree Easter 😊
I’ve had JIA since I was 14, I’m now 37. Over the years I’ve had lots of ups and downs and different combinations of medications. The thing with this disease is it can hit you when you least expect it. I was put on steroids at age 14 and was on them for 12 years causing me to get cataracts at age 18 and I had both my hips replaced in 2006/07. I had my left one revised in September last year. My last major flare was in 2015 when my Humira stopped working completely and was changed to tocilizumab. I’ve been in remission since. However I have managed to live a relatively “normal” (or whatever people consider normal to be), I’m a full time Reception (4-5 year olds) teacher and have a wonderful husband who supports me when I’m not doing well. I’m also lucky now to have a very understanding head teacher too. I’ve done cycling sportives of up to 60 miles and I have recently got back to the gym after my operation. As much as I hate my arthritis when it’s bad I genuinely believe I wouldn’t be the person I am today without it. I also wouldn’t have met my husband.
To all those struggling at the moment please don’t give up on your rheumatology team they will find the right medication for you and you can have a normal life all be it a new normal for you. 🤞🤗💐
What an inspiring story of your life Ruth (love your name too, it was my mums ❤️) and I love your attitude too. It must have been very hard being so young with this disease. You sound like a very positive person and that is definitely needed with RA type disease. I’ve had 2 hip replacements plus a revision but that was OA related.
It does seem that all types of medications can work great for years and then Just stop but whatever keeps life normal and functioning must be appreciated as you and many others know it can hit you out of the blue.
I so love this forum, finding positives from negatives, a kind word, inspirational stories, just understanding. Thankyou for sharing Ruth.
Hardships through life certainly add perspective, empathy and so many more enriching traits. A life long pity party serves no one as it will ultimately cause bitterness.
So it’s prednisone that can cause cataracts? Thank goodness for all our medical advancements. Blessings for a happy Easter 🐣😊
I never knew that and was not told that was a risk all the time I was taking it. Glad I’ve finally managed to come off them.
Interesting Ruth, i was diagnosed with avascular neucrosis of the hips as well. gad first replacement in 2003. Doctors wanted to kow uf i had played a lot of contact type sport or had a major trauma to my body. .answer No. I think was caused by being pregnant. .blood supply cut off to hips for duration of pregnancy. I first noticed a sciatic pain aftet my second child aged 29. Of course i wasn't diagnosed until years later by xray and had replacement aged 45..50..55 revision. 60 bilateral knees. 61 ankle replacement 😲
Bit over joint replacements..ill be bionic soon lol. I will however do what rheumatologist telks me after my surgery. ..im just terrified of all the side affects including biologics. I have no life atm so will see after ankle recovers how I am.
I was diagnised sero negative RA and tteated for inflammatry arthritis last July. ..i didn't and dont want to believe Ihave RA thinking.
I was diagnosed of RA since Jun 2014. After mtx and arava for about 1 1/2 years, I was/am in remission and I am having my normal life now.
I just came back from SAPA, Hanoi where I did the hiking for 13.5 km from 8.30 am to 3 pm in the afternoon. In between, we had an hour for lunch of course. Then the small van came to pick us up to our hotel as we were too tired to walk back. The next day, with the muscle pain after the long hiking and walk the day before, we continued another 4 km hiking until after lunch.
As normal as I can be, I still can feel the difference in my joints though.
Can’t complain if you can hike 13kms, that’s awesome 👏 👏👏👏
So I assume you still take mtx and Arava?
I’m thinking i should have given both a better chance but my hair fell out so bad and I had shortness of breath with mtx it all scared me too much and I didn’t notice any improvement, mind you I only took them for a short time.
Thanks for replying and happy travels 😂
Yes, I am still with mtx and arava until today. mtx is only on 7.5 mg now. It took both DMARDs about 6 months to start working on me. I also had my hair thinning. I complaint to my rheumy, she said that the benefits that I would get would be very much more than the side effects hence I should stay on with the DMARDs, which I did.
I could not walk properly too those days as my whole body was swollen. My daugther helped put my shoes on and changed my clothes. I could not turn my body and neck too as my spines were in pain those days.
My advice is to give the medicines time to work on you. To get your treatment early, to work closely with your rheumy and your physiotherapist. Daily exercise is crucial to ensure the flexibility of our joints. Not to listen to hearsay about direct selling of any natural way to cure RA and ignore the DMARDs.
I am still on oral medicines until today.
Yes it's a very disabling disease. .i was like you...agonusing pain, swollen and unable to do for myself, almost dilirious when I was admitted to hospital.
Im going to do as my rheumatologist tells me this time. .just waiting for my ankle replacement next week. I would have had to start back on arava then stop 2 to 3 wks b4 surgery. Im hoping he will try me on biologics but whatever ill try again. .cant live like I am its no life.
I am very sorry to know that you need to go for ankle replacement. Did you also ignore the DMARDs suggested before? A lot of RA patients make this mistake and end up with joints replacement eventually.
My suggestion is to try the natural remedy way but do not ignore the DMARDs given to us. I did try to change my diets according to what I read online and eliminated each slowly then put them back again one at a time, I found no change in my recovery process. During the whole process, I did continue the medicines accordingly. I am in good condition right now, so far no joints issue yet until today. I hope I can continue until the end the same way.
I have been in medical remission since 2012 (meaning I am in remission thanks to my meds/as long as I keep taking them). At first I was on Simponi and MTX, now I am on Olumiant and Leflunomide. I love my meds so much, zero side effects and excellent results I have gone from being unable to work (well being unable to walk properly, really) to leading a completely normal life. I was diagnosed aged 25 and now at 33 I've been in remission longer than I've had active RA.
Good to hear skinnycappuccino 😊. Did mtx make your hair fall out? It did to me as well as leflunomide, so just wondering mtx did? Seems to be quite a few sufferers who have not needed biologics and are in remission and living good lives on Dmards.
I understand about not being able to walk and how disabling and restricting it makes life. What affected your not being able to walk? Mine was first hips, knees and ankles, but still I’m looking forward to a positive outcome and being able to walk just 100 would be awesome.
Thanks for your story 👍
No, MTX did not make my hair fall out but it made me feel very (!) nauseous. I was on the tablets at first and then on the injections but I still felt really sick and I also got a kind of horrible salty/metallic taste in my mouth and food didn't taste very good anymore. I lost a lot of weight as a result and that's the reason my rheumy decided to put me on a biologic. I'm really sorry to hear that your hair fell out I think the reason it didn't happen to me is because I was on a rather low dose due to being severely underweight at the time.
I had severely inflamed feet, ankles and knees so walking was extremely painful. At times, I couldn't even sit properly because my knees were so full of fluid that I couldn't bend them anymore. Didn't stop me from wearing heels to my first rheumy appointment though (but to be fair, I was on steroids at the time).
Other joints affected were my fingers, wrists and elbows.
I really hope you feel a bit better soon and the meds will start doing their job properly. It seems so long ago now but I do remember how painful RA is and how it completely wrecks your everyday life when it's uncontrolled I was so surprised what not being in pain felt like when Simponi kicked in (really fast as well).
All the best,
Thanks for that Christine. . Very useful information.
Sounds cery similar ti me last year when this all atarted..mainly down left side but ultimately both knees so swollen couldnt walk or sit or sleep. Ankle was the first. Then knees elbows and wrists. Was absolute agony and gp and local hospital treat me or diagnose me. .had to get to sydney. Never been so happy to see a hospital bed in Sydney...ever. rheumy aspirated both knees immediately plus steroid injection and did the same 5 days later. Fluid wouldn't go away, finally pred high dose steroids worked. I had both knees replaced 3 mths later last year and ankle in a weeks time.
What a past 12 months.
I felt the same as you on mtx and arava..that aweful taste and lost weight as well. No apetite..food no taste and really didn't help much or at all.
Very encouraging hearing your stort and the simsoni working quickly too. No pain sounds like a dream.
Icwas disagnosed RA sero negative and treated for inflammatory arthritis. All the best
Hello again (and happy Easter!!),
With me it started with my fingers, then my wrists, feet, ankles, knees and elbows followed. I am really lucky it didn’t affect my hips or shoulders as well.
You’re right, very similar indeed – they drained the fluid from my knees as well and injected them (repeatedly as it always came back, eventually). I loved my steroids though I know they’ve got their down sides when used over a long period of time but they worked so well when nothing else did in the beginning. I am sero-negative too (though I am ANA-positive).
It really sounds like a very turbulent last 12 months for you.. I wish you all the very best and that you can get back some sort of normality soon.
Lots of love,