Hi everyone I'm feeling really lost at the moment.. been on methotrexate 15 weeks, started sulfasalazine a few weeks ago also, been off work 6 months now, been on prednisolone for last 3 months, but was stopped about 2 weeks ago, to see if the dmards are working, I really thought they were starting to work, and last few days I'm in agony again, my shoulders knees ,my eyes and collar bone area. And feel really poorly again.. I feel like nothing is going to help me, was really hoping to get back to work as I've got a mortgage to pay and live on my own so will only get ssp now, I no I was only diagnosed in June, but they think I've had it a few years, as well as fibro, I push myself everyday but I feel like it's taking forever to get under control.. am I going to feel any better than I am now? Or is this how it will always be? I need some light at the end of the tunnel so to speak, I'm really struggling and feel so so down. Has anybody else been like this when things are not controlled? And how long before my meds kick in, and I can start living again. Am I expecting to much to soon x
Feel so down : Hi everyone I'm feeling really lost at... - NRAS
Well hey there jojo really feel for you really don't know what to suggest, I was taking Sulfasalazine and had to come off as have lots of gastro problems. Call your nurse helpline and they should be able help you. Mega cwtch to ya and really hope you get help, take care 😘
Hi 👋 I think I'm tolerating the meds quiet well have had a few problems. Just think I'm expecting to feel a lot better than I am doing think I will give it the weekend then give them a call.. hope your ok ❤
I'm really sorry to hear you're suffering and that you've had to come off the prednisolone to see if the MTX and sulfasalazine are working well enough to control your inflammation. It would seem they are not and you need to let your Rheumy nurse know how much you are struggling and unable to work.
But please don't give up hope, there are many biologic drugs available now and it's likely one of them is what you need to get your RA under control. Ask your nurse when you can try a biologic because you feel you just can't go on like this and are feeling very low.
My RA was uncontrolled for over a year but when I was put on my current drug it made a huge difference. I'm now mainly pain free and getting on with my life.
I hope you can find your wonder drug soon and begin to feel more normal again.
Hi lolabridge, thats what the next step is, there starting me on biologics, but I really thought my meds were starting to work. I was put on a tapering dose of prednisolone, (was already on 5mg) but was increased to 20mg then 10mg then 5mg then stopped completely 2 weeks ago, I felt like I was getting better, then (boom) back to where I was. I was told if things get bad again I can go back on prednisolone, because 5mg keeps me going (well better than I am now) really thought I'd cracked it, just so disappointed glad your meds are working for you. Gives me some hope 🙏
That tapering sounds a bit drastic to me. From 20 to 5 sounds ok but I would have thought to reduce 1 mg a week from 5mg to nothing and that would be really fast. It took me months and months to go from 5mg to nothing. Call your team. They don’t know you’re struggling if you don’t tell them. I wish you all the best with getting on track. I’m glad to see I’m not the only person saying this.
It might well be that the DMARDS need longer to work but it's worth updating your rheumy team in case they can tweak things. They need to know how it's impacting your life and may just assume that things are going well if you don't let them know otherwise.
Hopefully things will really improve once you find "your" meds. It is early days for you but that doesn't help when you're struggling so you have my sympathy 😢💐😘
Thankyou boxerlady,Had a ftf with consultant on 4th Nov, she said my das score was 10, and to escalate my treatment to biologics, I think because I had a few good days this was it, and things were improving.. I'm thinking now does it take a few weeks for steroids to leave your body completely? So the meds aren't working?I'm still learning and think it's just starting to sink in x
The sulphasalazine will take longer than a few weeks to start working so there’s still time for it to improve your symptoms. The first years of diagnosis can be difficult as unfortunately it can take time to find the treatment or combination of treatments that works for you. There is no quick fix and that’s hard to come to terms with but you won’t always feel like you do now. I know that’s not a help to you now but maybe this new combination will be your one 😊 Have you had any discussions with your employer about reasonable adjustments to enable you to return to work? NRAS do some good publications one of which covers work. Many of us have been where you are now and we will be here to support you so please don’t feel alone. Come here to let it all out and we will try to help in any way we can 🤗
Hi, yes I gave my employer the booklet from the newly diagnosed pack. But trying to explain how you feel most days is really hard especially the fatigue, I'm only on 2 sulfasalazine a day, go up to 3 next week, then 4 week after so hope they kick in soon and thankyou
A DAS score of 10 is very high and shows your RA is out of control. Dropping the Prednisolone by 5 mg all in one go is a big drop and it's no wonder you now feel c**p!! I was only allowed to drop by 1 mg per month!! Steroids mask your symptoms, which is why the consultant wants you off them but you are bound to feel awful quite quickly. Steroids are not an ideal long term solution and can have unpleasant side effects too. It seems you definitely need to be put on a biologic to get your RA under control. Do contact your nurse straight away and tell her how much you're suffering and can't continue like this.
Wishing you the best of luck!
Yes I agree dropping 5 mg is a lot, tapering would have been better than just stopping it altogether. I remember being on 5 mg and just dropping that down 1/2 mg every 2 weeks was difficult! I did stop suddenly from 2 mg and that wasn't good. I was ill. But am off steroid now for over a year. When I was on mtx I also was on hdyro and lefluomid and that combination worked for me, as you are on only 2 drugs maybe you need another drug. Wish you good luck. Take care
I am the same as you 3 years in and still not controlled and with fibro now kicking off if i am not stable with meds its all a nightmare. I feel as soon as I think I might have sorted one area either RA kicks on or Fibro and I wont even talk about the chronic fatigue.Firstly talking on here helps but also talk to you RA team too.
I sat in the garden last night looking at the stars and thinking is this it. I dont want it to be I am 56 and I want to feel that I have some quality of life too. The past 3 years have been roough with pain and meds and the thought of another 3 years of it just does my head in. SO I don't think that far ahead if I can help it. I know I am lucky has hubby when I was made redundant stepped up and now works all hours he can but I want to be out of the house in a work place even if 12hrs a week. I need that in my life plus it would make our lives easier.
So no great answers from me but I hear you and I get it.
I am on Barcitnib which has been best so far for me and just trying to work out the fibro drugs to make that tamer. x
So sorry your struggling to its awful isn't it, I've just turned 53 and been like this a few years also and suffer terrible fatigue, I think the winter months everyone gets more down, I love the sunshine, and feel like I can't enjoy that anymore, told to stay out the sun.(it's a bummer) I'm so glad I have this site as I think I would go stir crazy, some really helpful advice, and I don't feel alone as I no we are all in the same boat hope you feel better soon take care x
Hi. You really need to get back in touch with your rheumy team to let them know how you are feeling. The more pain you are in, the more stressed and down you will feel. You need your symptoms to be under control but sometimes it does take a while for the right meds to be found for you. There are so many drugs and combinations for RA but they will find what works for you. I know it is hard when you are suffering and maybe your GP can help with the depression in the short term. We have all been where you are and feel that nothing is working but I promise you that it won't always be like this. Your rheumatologist wants you to be pain free as much as possible and will work with you towards that end but it may take a while yet. Don't despair, there is light at the end of the tunnel. Hang on in there but you must let the necessary people know that you are not coping. I hope you find the right meds for you soon. You can of course, always come on here to talk through your feelings, we are only to pleased to be able to listen and help you where we can.
Thankyou for your kind words Sheila, think I needed to get things off of my chest, I'm already on medication for depression, but think the winters on its way and the pain, gets on top of me, so I'm just hoping I see improvements soon.. I will shout it from the rooftops when I do
Don't bottle things up. Remember a trouble shared is a trouble halved. God bless.
Jo Jo...we look forward to seeing you shouting...'Jo Jo is here...my meds are working'! I hope that shout will be sooner rather than later...hang on in there. ❤️
Hi, you need to apply for pip this will help with the financial side of things.I have RA and out of control atm. I was so worried cos I couldn't work was only getting ssp. My boss wasn't sympathetic. In fact she just bullied me and I was struggling so much that I had to go off from work.
Your ssp will end after 28 weeks so you need to claim ESA as your still in employment. You will get this aswell as pip.
I have just started biological treatment and like you not making any difference yet. I had to come off steroid too. You fell so much better when on steroids but you can't tell if other meds are working while your on them. They are also very bad for your health even if they are the only thing that seem to help.
Hope this helps x Coralie
Thankyou, I applied for pip a few years ago for my fibromyalga, got awarded no points, I was so degraded about the things they said in the write up, I didn't appeal it just let it be. I don't think I could ever go through that process again. Havnt got the strength even tho I could probably do with reducing my hours when I do get back to work. I really hope it starts working for you soon. Best wishes x
Hi jojoishere, methotrexate takes a long time to start working 😞 I also take curcumin 95 advanced I get it from Amazon I take 2 a day. Trying to reduce my dose at the moment of methotrexate but I think they will have to up it again as I am getting flares lately. Is 12.5 a low dose I was on 15 ? 🤔
I’m so sorry to hear you’ve been having problems. Hopefully if your Consultant puts you on a Biologic, and that will be the missing piece of the puzzle. 👍
As you know, I have no OH to help, have to pay bills and mortgage etc, so when you’re not able to work, the worry and stress is through the roof, which in turn doesn’t help our conditions.
Unfortunately we on here have to play the long game in terms of meds. Mine kicked in immediately 3 years ago, I was in remission and I’d almost convinced myself I didn’t have it, until now, I’m back to square one.
I really do hope you get sorted soon, I’m sure you will, even if you have to go back on the old ‘Oids’ for a while 😊
Hey x I’ve felt like that this week x like nothing to look forward to and just dragging myself though life xxx sorry to hear that you are not feeling great x posting on here helps x everyone is so supportive with ideas and just being there as they / we all understand how each other feel xx it’s a long road and definitely not a quick one xx ups and downs x I’m still learning to go with it x
Main thing is ask for help when you need it x I am rubbish at that x
Hope your feeling better soon xx
Eurgh! The first year or two can be absolutely brutal and you feel that this is all you have to look forward to forever don’t you.
Thankfully, the reality is different. It does take some time to get there, but you will. The docs test each drug for around three months to see if it works or not which is why it’s such a lengthy process to find what works. It seems that you’ve already shown that as soon as you reduce the steroids, things get worse again.
Everyone has their own individual tale - mine is not dissimilar to yours. Propped up by steroids that took me three attempts to come off. Then a biologic which worked really quickly and my life began again. I’m now in remission. Some damage has been done of course and life is different, but a thousand times better than it was at the start of this miserable journey.
I hope this may give you some hope. 7 years ago, I went to Portugal absolutely fine and came off the plane in a wheelchair. Couldn’t walk, get up a step, get dressed, hold a pen, cup nothing. I spent every day staring in to space as I couldn’t do anything else. That lasted about a year. Steroids worked to some extent but the burning pains were almost intolerable and I wore compression gloves etc...nearly lost my business which is also my only income as I live alone. PIP etc...was out of the question as my lease car payments alone exceeded any payment.
18 months on and I was on Benepali. Everything changed for the better.
Fast forward to today and I’ve been in remission for over two years. I eat and drink what I fancy as nothing causes any flares. My businesses have grown to a team of 20 now and I’m away this Christmas on a cruise to Caribbean (still can’t face flying as being six foot tall and RA is a step too far!). 2023, I’m going to South America and Antarctica.
These were things that when I was where you are feeling now, I could not dream would happen. I also thought that my life as I knew it and hoped it would be, was over.
I promise you, there are lots of options yet for you to reclaim your life again. It’s just brutal right now. 💕💕💕
Wow, you go girl, what an inspirational story. I'm so happy for you, and long may it continue for you and thankyou for your post 😊
What a truly uplifting story which gives me hope. I was diagnosed 12 months ago and have had my ups and downs. I was started on methotrexate and was taking Prednisolone. I got down to 10 mgs Prednisolone and was doing OK. Then BANG I got pneumonia and had to stop the methotrexate. I am back on them now plus Sulfasalazine and 30 mgs Prednisolone but even with that I am really struggling.I don’t want to go to bed at night for fear of what I will be like in the morning. My hands are so stiff and painful they are all but useless. I have asked myself several times” will this ever end” but your story has given me hope.
I'm so pleased you found this uplifting - I was anxious that I may come across as Billy Big Boll*cks. But I don't mean it that way. It's rubbish isn't it. That fun time balancing pred too and then attempting to come off it. Eeeek! I don't imagine your rheumatologist will want you to be on pred permanently. Have you asked about biologics? I know they're sometimes reluctant to prescribe them because of cost. But with more and more biosimilars the costs are dropping massively.
I'm fortunate that Karl Gaffney in Norwich is my rheumy and he's great. Not every area is as fortunate as I am. It's worth pushing this I think as your life could and should be very different. We only have this one life and when and if it's avoidable, we deserve it to be as pain free as it possibly can be. Lots of love to you Kechchan 🥰
Thank you. I have asked about biologics but my rheumy says it's too soon!! I see him again on Tuesday so will push and ask again. 30mgs pred is a high dose especially if it's not effective.Here's hoping.
That is a high dose. Steroids are a double edged sword. They keep you functioning but the blood test results show there’s an element of your RA being in control. So box ticked. BUT, should you come off the steroids and feel like you’re being turned inside out, then your DAS score would be higher and you’d qualify for biologics. And of course, steroids are cheap.
Give the rheumy a gentle shove and some persuasion. They might need a helping hand 😊😊
I think Many people have been where you are, you are not alone. Sadly all the meds seem to take a long time to work and in the interim you have to cope with the pain. Speak you your rheumatology team and they should be able to help with pain meds and maybe adjust your other medication too. Do not give up hope. Try to find some things you can do to distract you. I have found meditation very helpful, but there are other things you can do. Don't give up hope. Better time ahead x
Been there got the teashirt, as most of us have and still do sometimes, I so feel your pain and feel how you feel,
you first need to ring helpline to get some help
but please hold on to knowing things can and will get better, it takes time for them to work, about 12 weeks
also finding the right one too
I still sometimes get flare ups and you have to give in and rest too
all this worry and stress on your shoulders wont be helping you, stress is the worst thing.
you need to get help and advice with money issues contact
have a look at old threads on here, even my old ones to help with what to take for pain
sending you lots of love and big hugs
I hear you and can empathise so much. Like you I am on my own so only me to pay the bills etc and it is a lot of pressure on top of us when we are waiting for our meds to work.
I’m two years into diagnosis and still trying to find the right medication. Tried most DMARDs and still on Sulphasalzine and now on a biologic too as well as steroids, anti inflammatory meds pain meds and many more meds. I feel like I am between a rock and hard place right now with my meds helping a bit but not enough just yet and having to taper my steroids currently so my rheumatologist can assess how well the biologic is working or if I need another medication change.
All I can do right now is get through each day the best I can, dragging myself through work but not able to to anything at all and some days can’t manage to work my hours. Luckily my employer is very supportive.
Right now I feel like a failure and am so despondent about things. Very unlike me as usually described by others as a ray of sunshine. I do need to give myself a good talking to and ensure I have a positive and constructive face to face appointment with my rheumatologist on the 26th Nov. Right now I spend most of my nights cuddling Billy cat and crying out of sheer frustration and pain. I am only 46 so need to do all I can to get life on a more even keel with my RA and other health issues.
Thinking of you. xx
Awww bless you, and sending you big hugs, I often read your posts, and wonder how you keep so strong, you have been through so much, didn't realise you was only diagnosed a few years ago, and so young. Well keep on going don't give up now, I'm sure things will get better soon and we both can shout it from the rooftops, so glad you have Billy cat 😍 I've got my shadow next to me my best friend buddy, he keeps me going have to walk him so gets me up even if I don't want to. Our pets are a godsend aren't they so loyal you take care and hope you feel better soon xx
Hi jojo, I'm sorry to hear about what you are going through. I think most of us on here can relate to how you are feeling. Mtx does take time to work. I'm on 20mg Mtx since June 2020. Are you on any painkillers. I was told to take co-codamol to help me with my pain. I take 2 in the morning and 2 at night since last year January. I've not been able to come off co- codamol yet but have managed to reduce my morning dose to 1 which was fine in the summer but now its winter I feel 1 isn't enough. Most Rheumatologist work differently. Mine is ok with me taking co-codamol for now. I've not had an appointment with my Rheumatologist or nurse since last year November. I've been ok on Mtx and co- codamol for now but am waiting for an appointment. If your struggling with the pain I'd say get in touch with your Rheumatologist. Hopefully they can sort things out to make your RA more manageable. Let us know how you get on xxx
Hi I'm on pregablin, and naproxen, can't take codeine it makes me poorly, also take paracetamol. It sounds like you need your meds reviewed, do you find it's under control with the methx? Thanks for the reply x
Mtx has really helped with my swelling and inflammation. I was so stiff in the morning it would take me 20 mins to move the duvey off me and turn to get out of bed. I couldn't walk or sit in one place for 5 mins without getting stiff. I couldn't get myself off the sofa until I started taking Mtx. Life was very difficult and each day was so hard to get through. I didn't want to think about the future let alone deal with each day I was going through. For me the stiffness was the hardest to deal with as my body was not mobile due to the stiffness, so Mtx has really helped me in that way but I still am in pain so I feel I need to take co-codamol or I can't be active. Mtx doesn't help with pain so I can understand why my Rheumatologist is ok for now for me to take co- codamol but its not a long term solution. I'm waiting for an appointment as its a year now since I last spoke to my rhemy nurse. I did ring the RA department for more blood forms in May and mentioned I haven't had an appointment. I was told they are working their way down the list. I'm not sure when they'll get to my name so its just a matter of waiting. I'm not in unbearable pain for now thank God so I understand the wait. I do need a chat with them soon so will get in touch with them by January if I don't hear from them.
I'm sorry you are going through this. Sometimes it takes a while to find the right med combo that works for you. Each time med changes, it does takes time to see improvements and for your body to metabolize the new meds.
I started on this journey with uveitis (in August 2020) and other AI diseases have since joined the party. I started off on methotrexate tablets, then injections (with hydroxcloriquine) and now on biologics. Still taking 20mg of prednisolone and tapering really slowly (reducing by 5mg a month). Everytime I drop 5mg prednisolone, I get rebound pain, so have to up it for a couple of days and drop the dose. That seems to be working for me.
Please do contact your doctor or RA clinic - they need to work with you. Mentally I found being in constant pain draining especially if it feels like there is no end in sight.
Keep going....you've got this 👍
Thankyou it sounds like you have a lot going on, do you find you have improved since going on the biologic?
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Good luck and kind regards.
ibuprof plasters in plaster form so it doesn't go through your stomach, helps me when I have a flare ,try to cut out sugar, and eat healthy. all helps
when I eat shit I feel shit and pay for it,when your better you can -now and then eat rubbish, but not full time
I just think everyone is different when we start with different symptoms it took me about 20wks to start working, I was the same as you feeling down but don't give up hope once they get the right balance for you it will help so keep your spirits up don't let it beat you ,you will eventually get some respite.
Hiya Jojo. I understand why you're thinking as you are but no, this isn’t how it will always be. It should have been explained to you but for most it can take a while to find the right combination of meds to keep the disease controlled & I'm afraid you are relatively newly diagnosed, by that I mean not having had treatment all that time. That they say you may have had RD a few years is telling, it will likely take longer to dampen down everything & you may already have erosions due to the corrosive nature of unmedicated RD. This will add to your pain, & why then prednisolone was working so well, controlling the inflammation that MTX alone wasn't able to do.
There are options as you've been advised so don't worry. You may be like me & need a low maintenance dose of pred for a while to keep things in check (currently only on 17.5mg subcut MTX as all other DMARDs have had to be stopped or stoped working). Whilst it's preferable to not rely on pred sometimes it's the better option while waiting to see if your MTX/SSZ double therapy is to be continued until or if other options need investigating.
The change to injections, as well as the dose increase, could be telling. The 5mg increase will be more effective than the same increase in oral as there is greater bioavailability in subcut. It would be more like a 7.5mg increase or maybe even 10mg. This should see you through to the SSZ taking effect & until your next Rheumy appointment. Do contact your nurses though if you find yourself really struggling. They assume all is well unless they're told otherwise. You might ask if a change in NSAID would be helpful. I've had 5 or 6 over the years but etoricoxib the longest, it works well for me. Naproxen didn't do any more than ibuprofen, or meloxicam. Celecoxib worked better but it became less effective the longer I stayed on it so there are anti inflammatory options out there too for you.
Hang in there. Try not to push yourself too hard. Whilst we need to keep moving you shouldn't overdo things just now. I know the work situation is a worry as well. RD thrives on stress, not easy with your particular situation but you need to be kind to yourself too, don't forget that. Don't forget either that we're here to sound off for the times you feel alone in this. Believe me, you're not. x
Hello jojo, your post takes me back 12 years. I was in your situation and had similar thoughts about will it ever get better etc. Well it has got better for me and thousands of other people living with RA. It took about 9 months to really feel I was making big steps back to getting control over my life again, but I never lost hope along the way. For the last eight years I- again like many thousands- am in remission and lead an active life, fully in control and not thinking about having RA. (I was until I had to come off my drugs for cancer treatment this year anyway). So there is light t the end of the tunnel and the tunnel is getting shorter all the time with the brilliant new medications we now have for our treatment. I send you big hugs and a bag full of strength. Hang on in there. I WILL get better!
Hi there, thankyou for your post, it sounds like your having a bad time sorry to hear about the cancer, I hope you can kick its butt also,life is so brutal sometimes big hugs to you and stay strong God bless you
Hi jojo, I am OK and manage to keep my positive outlook. I really wanted to lighten your burden by saying that many thousands, including me, live a full and active life with RA. It might be a different life, but in my case a better one in many ways. I've become stronger both mentally and physically and learnt to be kind to myself and others in a better way.
Hi there. I was just like you crying in pain and no one seemed to care. I changed my Rheumy doctor and he put me on biologics. And I havnt looked back I have felt so well. Wishing you luck x
Listen Jojo, I just went into remission in June this year after being on MTX 25 mgs, sulfasalazine 2000 mgs, and Prednisone (down to 3 now) since November 2018. Almost 3 yrs and I had given up. Couldn't get the Pred below 10 before this remission. But, oh happy day, the pain was gone and I started to do the things I haven't been able to do in almost 3 years. Splitting firewood, using a wheelbarrow, chainsaw, shovel, gardening etc. AND do a pred. reduction that works. So don't give up. It is different for everyone.
When you say your prednisone was stopped, it was tapered down properly wasn’t it?
Hang in there, you will find the right meds but sometimes it does take time. You will get through this!
Oh really feel it for you , I think we have all been there and you do wonder if it will get better, Sulfasalazine didn’t work for me , you need to get back in touch , you might need another month in steroids I am trying to get off them at moment as been on them 5 yrs , also takes about 2 months before MTX kicks in , don’t suffer get back on phone ,I can only say when I’m bad I rest up using hot water bottle and cold pack , when I feel a bit better I do what I can , I really hope you pick up soon as we no your pain . 👍
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