The fatigue question…. AGAIN!!! I was diagnosed with RA a long time ago, and throughout my entire journey fatigue has absolutely plagued me. I’m grateful that my inflammation levels are apparently under control, and appreciate that’s better than a lot of people have. I saw the rheumatology specialist nurse for routine appointment this morning and she tells me that my fatigue is likely ‘just the disease’ rather than the drugs I am on…. I’m on hydroxy and methotrexate, tried sulphasalazine but it caused palpitations and panic attacks, so had to stop that. Nurse suggested I try leflunomide, which I agreed to, but having read side effects I think I’ll be no better off….. any advice please? I’ve been tearful since getting home as it just feels like the cruelest vicious circle - sorry, feeling rather sorry for myself today!
Fatigue??: The fatigue question…. AGAIN!!! I was... - NRAS
Fatigue??
Have you read the possible side effects of the other meds you are taking? You are taking those even though there is a risk of horrible side effects. All meds carry some risk but you may not get any side effects and lef may be the one for you. I’d give it a try, you can always stop if you get any unbearable effects but it is worth a try. Good luck.If you put leflunomide into the search box and filter for NRAS then all the posts about it will come up.
Hello, yes I have, but my reality is that fatigue is the only side effect I’m experiencing from methotrexate, so my dilemma is whether to ‘accept’ that as my lot rather than opening another can of worms and risking unsettling my apparently well controlled disease state
My feeling Is you've got to " live " with this illness for ever , so I'd find drugs you can tolerate and manage your daily life with xx good luck x
It is an unfortunate fact, fatigue can be down to the disease itself , even when considered pretty well controlled.
I'd seriously consider trying the LEF. I took it alongside MTX after SSZ was stopped. I did have to come off it unfortunately but you don’t know until you try. Hopefully you won't have anything but good results, & you'll most likely have new drug monitoring every two weeks for the first 6, that & BP monitoring as LEF can raise your BP initially,
FAtigue and i are old friends. By lunchtime i am so shattered and by 4pm i am in my pjs. xxxx
Bless you Sylvi! X
That's me Sylvi!!💜
Its no good trying to beat the fatigue as it will always win. xxxx
Poor you. If your experience is anything like mine and leflunomide doesn’t suit it looks like you may be eligible for biologics….I like you worked my way through those 4 drugs to no good effect. Just felt lousy on the side effects. For sure RA gives you fatigue but those drugs you are now on made me feel blooming awful. Doesn’t sound like your disease is under control yet; but don’t despair. We have to jump through funding hoops….in my case 5 as a Biologic didn’t work either. I’m now in a JAK. Took 4 years to get to the JAK. You are not alone. X
Thank you, has your fatigue level improved now?
On and off. Has its moments; but generally yes; improved. Will never be the old me….
I am on lefluomid, Benepali just started and hdry, fatigue has just been hitting me these last 2 weeks. I come in from work and have to go to bed for 3 hrs and I still sleep at night. My Ra is not under control yet since I was 10 weeks waiting to try biological drugs. But I am hopeful I will kick this fatigue in the teeth real soon. I agree with others on here, just try lefluomid and don't worry too much about the side effects. When o was on mtx I nearly didn't start it because of the side effects but pleased o did. It worked for 7 years. Good luck
Good luck with biologics.
I'm sorry to here that you are feeling so rubbish - it's a tough one.
I have put a link here which talks about biologics:
I KNOW EXACTLY WHAT YOU'RE TALKING ABOUT. MOST OF THE TIME I FEEL LIKE I GOT HIT BY A MAC TRUCK-LOL. IT REALLY HAS BEEN SO LONG SINCE I FELT LIKE MY OLD SELF I THINK I'VE FORGOTTEN. THE ONE THING I REALLY HATE IS CONSTANTLY TELLING FRIENDS AND FAMILY HOW I REALLY FEEL WHEN THEY ARE NICE ENOUGH TO ASK . IT SEEMS LIKE THE SAME STORY EVERY TIME, I'M A BROKEN RECORD.WOULD LOVE TO GET UP RARING TO GO AND TAKE THE DAY BY STORM.I'M ON METHOTREXATE AND PREDNISONE AND HAVE BEEN FOR ABOUT 9 YRS. I'VE LOST 3/4 OF MY HAIR AND NOW MY SKIN IS JUST A MESS.IT'S EXTREMELY DRY , THIN AND GETTING THOSE BLOOD SPOTS ALL OVER MY LEGS AND ARMS. THANK GOD FOR MY TERRIFIC HUSBAND AND RESCUE DOG AND CAT. THEY MAKE MY DAYS. I THINK WE JUST HAVE TO KEEP OUR CHIN UP AND FIGHT THE GOOD FIGHT. ONE OF THESE DAYS I'M GOING TO WAKE UP AND SET THE WORLD ON FIRE AND SO WILL YOU. EVERYONE IN HERE IS IN FOR THE LONG HAUL SO TOGETHER WE STAND AND WE FIGHT THE GOOD FIGHT. HAVE FAITH !!
Im Always knackered but my problem is that I don't listen enogh to my body then l am in burn out mode then suffer the rest of the evening/night into the next day in pain my doctor has recently given me Morphine patches and a bottle of Oxymorph liquid to top up my pain relief if needed, l was on Methotrexate l looked like l had alopecia my hair was falling out in clumps " l had waist length blonde hair" when l saw my Rheumatologist she sent me to the dermatologist who looked at my scalp and said you need to come off the Methotrexate in which l did, The Dermatologist put me on Nizoral Shampoo to correct the balance back to my scalp which l use 3 times a week before washing my hair l wash with the Nizoral leave in for 5mins then wash and condition my hair as usual Now l have my full head of hair back Methotrexate isn't for everyone certainly wasn't for me.Maybe give the Nizal Shampoo a try and see if it helps you like it has me. Good luck
Shelly xx
Hi Girli. I’ve had RA for bloody over half my life. (I’m 50). I know exactly how you feel. It’s a crappy, frustrating disease. Fatigue can be as awful as pain. I think we all just have to get used to pacing ourselves. Get used to having naps. If the floor needs hoovering. Sod it! Just let it wait. Put your feet up, have a cuppa & get round to it later. Don’t be hard on yourself. Push yourself a little. But know your limits. If i’m too knackered. I just get the bourbons out, have a coffee & bung a comedy on my tablet! My bed & i are brilliant companions. Hope your mood lightens. We all know what it’s like!!!!! X
Unfortunately fatigue is the biggest problem to deal with, sometimes more than pain. If you can rest, do so whenever you can. If you work then it is more difficult. I understand the tears as it can just be too much to bear at times. As for medication. I know it is scary but if you need them, you should try them. I would trust your Rheumatologist. What suits one won't always suit another. I don't read side effects. If it isn't right for you the side effects will become apparent. If you read the side effects of paracetamol, you wouldn't take them again and yet we take them like smarties when necessary. You need to try them. They might be just what you need. Good luck
I can understand your frustration re fatigue. I’m surprised by your reluctance to try Lefuonmide, when you’ve tackled MTX which has equally bad side effects. It’s not a given you will suffer side effects, and if you do you can just stop. It may just be the one that makes a difference. Rheumatologists and gps both say fatigue is the one symptom they struggle to manage. Like others say it’s about pacing yourself, leaving what doesn’t need to be done, or finding an alternative way. I recently purchased a robot hoover to tidy the floor between the main housework days. I used to do housework every week, there are only 2 of us now, so I do it fortnightly over a few days, and use the robot in between, whilst I have a coffee. I often have to take an afternoon nap, and have an understanding hubby. If he sees I’m tired he will suggest a takeaway rather than have me cooking, I know I’m fortunate. Here’s hoping lefluonmide makes a difference for you 🤗
Thank you, I think my reluctance is reading about the digestive side effects plus blood pressure AND seeing that fatigue is also a potential side effect. My reluctance comes because I ‘only’ suffer fatigue on methotrexate and my inflammation levels are apparently under control, so I’m reluctant to rock the boat if that makes sense, but would love an answer to the fatigue. I too have a most understanding partner, also just two of us home now but I am working part time in an exhausting job. I don’t know what to do for the best really
Oh sweetheart, I think we can all identify with your frustration and fatigue. It’s no laughing matter and sadly, not something that’s going to go any time soon. I’ve got RA and Fibromyalgia so completely understand what you are feeling but I have found that trying not to fight against it helps me. As I’m medically retired now it’s much easier but if I need to sleep, I sleep. I pace myself which takes longer to do things but I’d far better than completely wiping myself out.
Be kind to yourself girli1111, you need to adjust to what your body is telling you. Good luck with your meds, you’ll get there x
Thankyou. I have fibromyalgia in my diagnosis too apparently. It’s so difficult isn’t it!
It sure is but we can do this!Life may not be what we hoped for but we will find a way to adjust and enjoy it in our way albeit at a slower pace. Chin up and stay well 🥰
Fibro makes the fatigue worse 😴. I’m in bed atm. First day of my hols but spent yesterday travelling so know it must be done. Amitriptyline helped me .. 20mg at 7pm. Have much sounder sleep which does help with energy levels. It’s one that we can’t win. I am hoping one day on, one day off will help my holiday…
Taking ill health retirement helped enormously. It’s stress that used to wipe me out ☹️…
I've been on leflunamide for years with no side effects. However I do now get low B12 levels and get this three monthly which helps x
Totally relate to this fatigue it gets you down so much. For pain we have painkillers etc for fatigue there’s no magic potion. I read on here vitamin d and c daily. I’ve been doing this a few weeks now and can honestly say I feel a bit better fatigue wise,I have afternoons now I don’t go to bed for a couple of hours. Lots of water too. I make sure I drink 2 litres a day plus my cuppas. These are the only things I’ve changed so I put it down to that. Unfortunately it’s all about pacing yourself as others have said. I now only get 1 day of total tiredness the day after my MTX injection (fingers crossed it stays that way you never quite know with this disease). Sending you hugs. Xx
It may be that your fatigue is a side effect of the mtx but, as others have said, it is also possible that it is just down to the disease not being fully controlled. When my GP asked me, a few years ago, was I suffering from fatigue, I said no - I got stupidly tired sometimes, but mostly I was just feeling my age a bit, I thought. Mtx started to help my joints fairly quickly, but I was left with quite a bit of swelling in joints and mild residual pain, which my rheumy decided was osteoarthritis. After 11 months on mtx, the pain and swelling suddenly disappeared almost completely and at the same time I had a sudden burst of energy. My husband even noticed that I was racing up our (steep) road and almost running upstairs. I have more life than I can remember having in the past 15 years. I think I just didn't realise how tired I was because it had gone on so long - years of anaemia, followed by the menopause, followed by PsA. 3 months later, my joints have deteriorated again a little (probably because I stopped mtx for 2 weeks for my spring booster) but my energy levels are still greatly improved. I do believe that if you get the meds right the fatigue will be lessened. Good luck x
Hi girli1111, difficult one. As others say, it's hard to know whether it's the RA or the medication or whatever causing chronic fatigue. I was on Methotrexate (MTX) about 13 years, did a pretty good job for me with the RA, but up & down & main side effect for me was nausea & the MTX I think 'poisoned' me in the end so I was eventually moved onto Leflunamide (LEF). I was on LEF for about 7 years - and was very happy on it without noticeable side effects. I'm not sure if the fatigue I've had can be blamed on the MTX or LEF, but since LEF stopped working for some reason around January 2021 I certainly am chronically fatigued now, which I put down to the RA which was out of control throughout last years with medications not working.
Not for me to advise, but although physically I've been going downhill the last few years, I did have a 'good' experience on LEF, without side effects - no diarrhea etc (though having that now on a new Jak-inhibitor!). Really is a personal thing, everyone responds differently, so LEF worth a try in my view.
Good luck & hope you can perk up !
Fatigue was my first symptom of RA, and still plagues me on a day to day basis. I'm on leflunomide and toficinitib, no side effects, other than raised cholesterol, the only 2 meds that have not given me horrendous side effects and I've been through most of them. We are all different, so well worth trying something new.
I changed from Methotrexate to Leflunomide 2 years ago. It's much easier to take with way less side effects than Methotrexate, for me. However it doesn't help one bit with the Fatigue. Unfortunately I'm plagued by this debilitating extreme tiredness to the point of tears. I'm sorry this isn't very cheerful but just didn't want you to pin your hopes on another DMARD helping reduce your Fatigue. My RA nurse told me exactly the same as yours. If anyone does have any tips to help I'd be very grateful. Sending love x
Awe...don't be sad, it's just part of the RA "journey". IF this makes you ANY better, I did well on Leflunomide for years and I am one to get some really bad and rare side effects. I am not taking it anymore because it stopped working for me (as time went on), and it was suddenly upsetting my stomach (didn't at first), and we switched to biologics. Can I tell you that I do not believe my fatigue ever goes away completely? I was also told that "fatigue" is part of the disease and some (not all) always have that to some degree. Please take into consideration too that I am 56 years old, and have what is considered severe RA, so that might play into the fatigue. Everyone is different but for me (not sure if this is your case), it seems to get really bad and quite noticeable right before I am about to flare up (no matter how much/how many joints). I've flared up and my bloodwork is fine so go figure that one out. Honestly, (and I don't want to be a Debbie Downer) I do not think there is any "cure" for that fatigue. Have you tried vitamins (sometimes vitamin B12 will give you energy)? Are you getting a full nights rest (if you wake frequently or do not get the full 7-8 hours that can make you feel tired too)? Do you take afternoon naps (I take a 20-30mins nap and feel refreshed after)? It can be your diet too. I find that if I eat certain foods with caffeine I tend to "crash" so I limit them. When do you take your medication (I had to adjust times to get an even flow...split dose 1/2 in the am & 1/2 in the pm). Geez, what else can I say except hang in there! Maybe a medication change would do the trick, you never know until you try! I think I tried them all myself so I know that worrying feeling of trying a new medication.
I've had Rheumatoid Disease for a lo-o-o-o-ng time. The fatigue is worst when I have a flare, but the only time I don't have it is when I'm on higher doses of steroids. Then my family complain that I'm manic (and they always notice because I talk too much too!).
Apart from controlling your disease activity as well as possible, you have to accept the possibility of fatigue. Always hedge your bets when agreeing to do anything that is always saying "I'll do it if I can." And never book more than two activities in one day - preferably one.
Thank you for your reply. What you say certainly fits my experience over the years. For now I’m not going to change meds as inflammation is under control and I don’t want to rock that boat. I’m going to put more emphasis on lifestyle choices, diet, exercise and pacing and take it from there I think. Thanks
It's my husband who has RA and finds the fatigue hugely challenging. However, I have other long term health problems and can understand the huge challenge of facing lower levels of functioning. You are wise to ask questions about medication, but at the same time some long term illnesses do bring lower levels of energy. My husband, with RA, is able to do more (energy wise) than I can, but suffers in other ways. If having explored other avenues, there are no quick fixes, then learning how to manage your new (lower) energy levels, becomes important. What do you most enjoy, what can you ditch, how can you use the energy you have, and rest in between whiles?
For me that made a huge difference to my quality of life and what I still can do. With many long term diseases there are no easy answers, but managing and adapting can help.
Not what you're looking for?
You may also like...
Fatigue and depression
Fatigue and depression
Fatigue
MTX and fatigue
Bad Day with Fatigue
Fatigue support?
Is anybody total free from pain and fatigue?
Tendonitis in fingers and ankle swelling and jaw locking
Fatigue 
Fatigue
