Hey hope yous all had a good new year! I have not long been diagnosed with rheumatoid arthritis and I have started Hydroxychloroquine however I feel I am getting headaches all the time but the worst is the tiredness I am sleeping all the time and struggling to get up out of bed I just feel constantly tired and run down was just wondering if anyone had the same issue?
Thank you
Fatigue is very common in RA, if you put that into the search box and filter for NRAS then lots of posts about it will come up. In early diagnosis until your meds start to work it will probably affect you more and NRAS do a publication about it which may help you ( and many other useful publications if you haven’t already looked at the website) nras.org.uk/product/fatigue...
Sometimes you just have to give in to it and rest, learning to pace yourself can help but hopefully it will decrease once you’ve been in your meds longer. Side effects can diminish in time but do call your rheumy nurse about the headache if it’s bad as they will have come across this side effect before and can give you advice. 🤞🏻you feel better soon.
Fatigue is a big RA symptom for me - were you having fatigue before you started the hydroxy? When I started hydroxy I felt very sick for a couple of weeks but then it subsided... I've now been on it for a year with no side effects.The thing that really helped my fatigue was a course of CBT through the IAPT service - learning things like pacing
Hope you feel better soon
Fatigue is one of the symptoms that can be difficult to manage. Pacing yourself, getting lots of sleep and rest are very important. Learning to say no to non essential activities is very important too, choose the things that are important to you and leave the rest.
always a difficult question to answer. Is it the drug or the RA. I can’t tolerate MTX above 15mg as it turns me into Rip van winkle. Active inflammation causes fatigue. I’ve learnt over time which is the culprit. If your tiredness is worse after your medication then it could be that and you need to chat to your clinic . Keep a diary it’s handy when you speak to your consultant
I had the same problem, plus terrible halucinations, I dont take it now.
I feel very sick and headaches on it too what is it you take instead? Are there other options?
These are the 4 main DMARDs generally used: methotrexate (MTX) hydroxychloroquine (HCQ), sulfasalazine (SSZ) & leflunomide (LEF). I would think as your Rheumy has chosen HCQ he thinks that's best for you at this time, though another may be added or changed to as determined by your RD. It is trial & error though, more so soon after diagnosis. These links from the NRAS website explain about meds used in RD further nras.org.uk/information-sup... & nras.org.uk/resource/dmards/
I would take MTX and sleep For 4 days. So talk to the nurse as you can react to the drugs in the wrong way and it also just might take time to settle. It’s learning what is acceptable to you but pacing rest and spoon theory all Come to play when you first have RA as you have to learn to live with it.
It took me 2Years of different drugs to find one I could cope with but others take first medication given and get back up and running again.
Thank you! I have rheumatoid nurse next week so I will speak to them about it I have just started it and just been diagnosed but I do feel like I could easily sleep for days and even when I get up I feel horrible and drowsy
there is a lot we are not told at the beginning. I was given the impression take MTX and i. 13weeks you will have your life back.
Fatigue is awful never gone away and I have learnt to live with it my way but it’s horrible🥰
this is a great support system this forum as we have all been there and though all different and react differently there is always someone who gets the issue!
Fatigue is so common in RD. In fact if you look under Related Posts (to the right of your question on my iPad) you'll find many other posts & also using the search box, which is always a good idea to check before posting a question as you may receive the answer you need. It is something that demands attention, it's not going to get easier the more you fight it & there's no tablet which it responds to.
Obviously disturbed sleep won't help with so do all the things recommended prior to bedtime & make your bedroom conducive to sleep. Also rest when you can, if you can try having an hour or two lying in your bed in an afternoon, that's what I do & sometimes I drop off sometimes I don't but it definitely helps me to relax. It also takes the pressure off joints & really eases my back so it helps with that niggle.
Pacing yourself is also important, you'll learn that when RD demands attention you respond if you don't want to feel like you're walking through treacle.
There is something called the spoons therory. Although it was originated by someone with Lupus the problem is no different. It might give you give a little hindsight as to how you might to help plan your day to get the most out of it without tuckering yourself out butyoudontlooksick.com/arti...
I also had headaches on HCQ, but we thought it was due to the photosensitivity I also had, it did seem as though it could be related. Often side effects reduce or can go the longer you're on a med, once your body has become used to it. In the meantime nausea can be eased with peppermint, ginger or an anti emetic prescribed by your GP. Regular doses of paracetamol may be enough, you get the best out of them taken regularly. This is if you're not already prescribed a med with paracetamol in it such a co-codamol, but if paracetamol hasn't helped ask your GP.
In the years since I was on HCQ I've learned that side effects may be reactions to a particular generic brand of HCQ sulfate. The brand which is most often noted as having more problems with is Quinoric, manufactured by Bristol Laboratories. Most reported is nausea, or other gasto upsets. The generic HCQ which seems better tolerated is the enteric coated one manufactured by Zentiva (product code no 1201730) which is an exact copy of the HCQ first licensed, Plaquenil, made by Zentiva but no longer available under that name. Another is Blackrock (product code no 1169523) which isn't enteric coated. Obviously the Zentiva would be kinder on the tum. There are another 8 manufacturers of generic HCQ but I only know of these 3 as regards side effects I'm afraid. Your Pharmacist should be able to access the details of excipients if you find Zentiva or Blackrock makes aren't for you. I’m pretty sure they all cost the NHS the same so it shouldn’t be a problem having a specific generic manufacturer name added on your repeat script. That way only that brand will, or should, be prescribed.
Hope this helps.
So sorry you have joined the ranks. I am afraid fatigue is very much part and parcel of rheumatoid disease. Once you are settled into a medication which would usually start with methotrexate, hopefully, things will start to ease. There is usually a bit of toing and frowing with medication until you get the right one for you but your Rheumatologist will keep a careful eye on you and adjust things accordingly. I hope you start to feel better soon.
Fatigue is often a sign of vitamin deficiency. You could try taking a multivitamin pill for at least 120 days. Pursue this matter with your medical advisors as well.
Yes, it comes and goes. Worse in winter when it's wet, dark and windy. Think it's a mix of RA and winter blues.
sounds like the hydracloraquine isn't the right medication if you are getting headaches and are super tired. If the medication is working you would think you would be feeling less tired. My understanding is the the SSZ and HCQ are the milder of the four and the LEF and MTX are stronger. Hope your appointment goes well.
I had headaches with MTX which eventually became intense to a dangerous degree (spike migraine led to emergency hospitalization). I’d be very wary of any intensification of headaches. There are other drugs and everyone needs to find their own approach to RA. It’s important to not be passive while finding the right treatment for you!
I came off Hydroxychlooquine as the headaches were awful and I too was very tired. Talk to your Reumy Dr
Hi, yes I was so tired before & after diagnosed with ra. Started on hydroxy & steroids 20mths ago but still so tired then finally 12mths ago after quite a few blood tests it was found my B12 levels were dangeriously low., apparently b12 levels have to be asked for specifically. I now have b12 injections but I still get tired very easily, no headaches tho & nausea settled after about 6 mths. Hope this helps,
Check your thyroid blood test results. Tiredness is a prominent and usual symptom of an underactive thyroid. Both an underactive thyroid and RA are classed as autoimmune conditions and often occur together - thyroid blood tests are normally done when testing for RA. The UK does not generally supplement with thyroxine until the TSH reaches 10 which by international standards is high (cost issue). If it is between 5 and 9, you might have a bit of trouble getting thyroxine. I finally got it when I developed a goitre and the TSH hit 9 but this was after 20 years at around 6.5/7.5. Check your neck.
Yup,yup, and yup, part of the condition.
In the earlier days body needs to get used to the treatment which can cause fatigue.
As you progress the body does start to cope with the treatment and as it kicks in resulting in fewer symptoms tiredness decreases. Don't think it's ever far way , comes when there's flares, pain, loss of muscle strength , even the weather all play their part in how fatigued you get.
Hang in rest, sleep a you need, discuss with RA team any and all symptoms don't suffer in silence. Try to find a routine that suits you, learning to be realistic about what you can do is a personal road.
In my case I try not to think about what I could do (so active) and focus on what I can manage now.
All the best
I’m 61 and have terrible fatigue. It would be lovely to give up work, but can’t afford to. It seems to be a very common symptom of RA, and autoimmune conditions in particular. I’ve had to change my working hours, although I can’t give up altogether, I’ve reconfigured my hours so I have Fridays’s off, I just relax and try to catch up on my sleep, it does help. 👍
I’m also going through a divorce and before Christmas I had a burst pipe in the loft where the ceiling fell in, stress doesn’t exactly help either 😖
My Consultant recently checked my iron, vitamin D and thyroid, but they are all normal.
Hydroxy gave me terrible stomach problems, I’m now on Mthx and Sulphasalazine.
tiredness
How do you manage the constant tiredness?
Can someone help with tips for the tiredness and fatigue please?
Struggling with tiredness
RA and tiredness
