RA or meds that cause tiredness?

[Yansouneh]

Many talk of fatigue being a problem with RA. I am newly diagnosed with serro positive RA, symptoms began in May. I have not had problem with fatigue but about to start methotrexate plus another and I'm already on hydroxychloroquine.

[Hidden]

Welcome Yansouneh. FATIGUE is a really big part of RA for me. It totally disables me . If meds cause tiredness there generally is a pattern . I’m on methotrexate injections and sometimes I’m wiped out the next day but it feels different I’m just very tired and tend to sleep but with fatigue I have brain fog and can barely lift my head,Legs,arms and can’t speak or concentrate. Some people are lucky and their medication really helps others not so lucky it means your disease is still active. It’s early days for you and you will work it out. All though this disease likes to through a curveball now and then to keep you on your toes .

[Yansouneh in reply to Hidden]

Thank you for your reply. No I have to say I luckily have not experienced this fatigue, and I certainly hope it doesn't come along with the medicine, but it looks like from responses that this is possible.

[Boxerlady]

Hi Yansouneh

I was diagnosed in earlier this year and started hydroxychloroquine and methotrexate at the end of May.

Fatigue was my first symptom last December - it felt like a post-viral thing although I hadn't had a cold or anything - I spent a week moving between the bed and the sofa. That went so I put it down to having overdone things but then the joint swelling and pain started so I went to the GP in January and the rest, as they say, is history.

Since then I haven't had any lasting fatigue either due to the RA or the medication so maybe you'll be lucky too. I have been careful not to do too much and get over tired. My work is always less during the summer anyway so I took the time to let my body get used to the meds and to find out more about the disease. I started to be more careful with my diet and started some RA-friendly exercise (having never exercised before!) like Tai Chi for Arthritis and Aquafit as well as doing the hand exercises the OT gave me. I'm lucky in that I'm self-employed and I'm able to set my own hours so I pace myself but I'm not doing a lot less than previously.

I read a lot on here and picked up tips like upping fluid intake on the days around methotrexate day. I did have fatigue on the day after taking it initially but that has got better (6 days of Folic Acid helps) and I take it on a Saturday evening so that I can have a lazy Sunday if necessary.

I'm starting to realise how different everyone's RA journey is so am trying not to anticipate problems while taking as much advice as I can get - good luck with your journey 🤞

[Yansouneh in reply to Boxerlady]

Thank you for replying. Tai Chi is something I am eyeing up as a possible, or pilates. I am SO nervous about starting this medication and it is something I have been trying to avoid since diagnosis. Huge changes to my diet which I was hoping would have an instant impact - but of course no such luck. I like your approach "not to anticipate problems"! Wish I could do this, but I read all sorts of negatives about the medicine, it is hard.

[Vivienham in reply to Yansouneh]

Hi Yansouneh - like you, I felt very nervous before starting on Methotrexate and Hydroxychloroquine (in August) but I've had no adverse effects, apart from the occasional rumbling in my gut. And I don't have fatigue the day after taking the Metho. I'm sure you'll be fine!

[Yansouneh in reply to Vivienham]

Good to hear, thank you.

[nomoreheels]

Hiya Yansouneh, welcome. Sorry you've been diagnosed but do hope you find being here helpful. As I see it the important word in your question is most. Fatigue is often one of the first symptoms, for many it's people flu-like symptoms, for others just the one finger perhaps. You see we don't all have the same ones so you're fortunate in a way in that you're not also having to deal with fatigue so early on in your diagnosis.

Chronic fatigue is all consuming, it's very difficult to manage if you’ve had it a long time & little responds to it. This is unfortunately the kind of fatigue those who don't respond well to meds can experience. This can impact severely on a person's life & can be very difficult to manage, can lead to depression, a whole different level. It may involve anaemia, side effects from meds, lack of sleep. You see fatigue can be caused by different things.

Whilst it's also true many respond with fatigue on their meds it's not always the way. I'm also seropositive & my first DMARD back in 2008 was also HCQ but I didn’t have fatigue with it... I started MTX (a year later) when HCQ started healing less but don't have fatigue on it. Yes I’m a little more tired day after injecting but not the fatigue known from when I’m in flare. That is telling, high inflammation levels mean fatigue for me. We're all different you see so I’d stay thankful you've not experienced it yet & if or when you do you know how to manage. There are ways, diet, exercise, changes in meds... so if it does ever affect you it doesn’t necessarily mean that you always have it.

Hope my explanation/experience helps a bit.

[Yansouneh in reply to nomoreheels]

Thank you for taking the time to reply. I am so thankful I have not had a fatigue problem, I 'just' have pain. I am upset the HCQ does not seem to have any effect on my condition at all. I guess my continued pains mean I have a longstanding 'flare up' which is not under control yet. I have consulted a nutritionist and have made huge changes to my diet - which at least makes me feel like I am being proactive and taking control a bit. I just wish the changes had a faster effect on the pain. All my blood tests come back negative for inflammation though - which although strange as I have so much swelling and pain, I guess that is a good result overall for the body?!

[Mmrr]

Fatigue is both part of my RD and the effects of medication, but they are subtly different from each other as J1707 says.

RD fatigue is more like the extreme tiredness of having the flu or a fever, I can sleep with this type of fatigue, albeit hot and bothered.

Medically induced fatigue is just that it feels like an 'unnatural ' tiredness for me and although shattered sleep can be elusive.

Different medications have aided to reduce my fatigue, such as MTX. But my new medication, baricitinib is flooring me just now.

It's all a game of trial and error to get what works for you.

[Lolabridge]

Hi Yansouneh

Sorry to hear you have RA and, like you, I am sero positive.

As far as I'm concerned if the disease is not yet under control then it's not a flare; a flare may come later when a period of control has been achieved.

Fatigue is a major symptom of the ongoing disease, as is brain fog. However, like you I did not have either to begin with, just pain and lack of mobility. When my levels of inflammation went sky high the fatigue really kicked in and I could not cope without an afternoon sleep every day. The oral steroids I take probably help to minimise my fatigue levels but I recommend you avoid taking those unless you really need them as they have side effects.

Now that I'm on a drug that is really working for me (sadly it's taken me 18 months to reach that stage and I hope it will be much sooner for you) I'm not noticing much fatigue now. Having said that I was yawning 🥱🥱🥱 a lot at the bridge table last Thursday evening and I fell asleep 😴 for an hour on the sofa 🛋️after returning from a lunch party yesterday at which I had two glasses of red wine 🍷🍷. (Who cares it was worth it!)

The really interesting thing is that disease affects different people in a variety of different ways, as you will discover. So all the advice we have given you may not be worth much! 🤷🏻‍♀️

[Yansouneh in reply to Lolabridge]

Thank you very much. Makes sense about 'flare'. Yes, RA does seem to like variety! But all the advice is so great to have - the main thing for me is being able to 'go on about it' and hear experiences of others. Up til this week I haven't had that at all - I'm so impressed with this forum!

[Brushwork]

RA fatigue is a real problem and can be so profound, unlike anything you've ever had before. It can leave you unable to function.

The tiredness caused by medication usually occurs in the few days after you take it. For me, I get very sleepy for a day or two and it is different.

[Yansouneh in reply to Brushwork]

Do you get the fatigue every week, or was it just at the beginning when you started the medicine for the first time?

[Brushwork in reply to Yansouneh]

The medication induced sleepiness happens every time for me

[Yansouneh in reply to Brushwork]

Bother. 😕

[Brushwork in reply to Yansouneh]

... but we are all different. For you, it might get better

[achyknitter]

Hi Yansouneh,

It took six months from the time I started with RA before I was put on methotrexate and hydroxychloroquine and in that time I suffered badly with fatigue. This improved considerably once the medicines started to work but it continues to be a part of my RA.

[Yansouneh in reply to achyknitter]

How many weeks before you felt the improvement?

[achyknitter in reply to Yansouneh]

Hi Yansouneh,

The swelling and pain eased to bearable within a few months and I came off codeine within three months of taking methotrexate. The fatigue eased at the same time as the pain but it took a couple of years to be mainly pain free and reasonably alert, although I still get flares and these can send me to bed after lunch.

The only certainty with RA is that every person's journey will be different and I hope that your medication works soon.

[CagneysMum]

I get tired much more easily because of my RA activity and my muscles have weakened a lot because I’m not able to do as much . I’ve now joined a gym and am working on building some muscle back. But I don’t think the meds cause my tiredness. Obviously different for everyone.

[Pawz4me]

Fatigue has always been the worst part of RA for me. I can handle a high level of pain, but fatigue and the accompanying brain fog make me almost non-functional. I haven't noticed any increased fatigue on the medications I've been on--methotrexate, leflunomide and Enbrel (etanercept). On the contrary. The first two medications helped to very slightly reduce my fatigue, but I didn't get significant relief until I started on Enbrel. So for me medication hasn't caused increased fatigue, but rather has relieved it. I also don't believe inflammation is the true or only cause of fatigue in RA, as my numbers have always been low.