Please help me? I am on 16 mgs Prednisolone, 15 mg Methatrexate and Imraldi (5 weeks).
I was diagnosed with acute RHeumatoid disease 19 months ago.
I have crippling fatigue constantly and always feel quite unwell.
I struggle to leave the house once a week.
My consultant does not think the fatigue is caused by the Mtx but by the RD. What do you lovely people think? I feel like a zombie and full of toxins. Little pain so VERY fortunate in that way.
I think chronic fatigue does accompany Rheumatic Disease full stop.!
But I didn’t feel any more tired a few years ago, when I was on 25mg Methotrexate, than I do now on a Biologic drug.
Maybe some people do?
Do you mean you have been on methotrexate for only five weeks?
If so you do need to give it much longer to settle in .....minimum of 12 weeks and probably 18. You say you have very little pain which sounds as if it is doing its job....although you are still on Prednisolone which is calming your inflammation.
Are you taking Folic Acid & keeping well hydrated? Those two things seem to help most people on Mtx.
Why don’t you speak to you rheumy nurse...... The nurses are usually much more knowledgeable of how the we react to the various stages of a drug....& can advise you the best way to cope.
Of course could always ask to change your Dmard, but but probably not a good idea if you’ve only been on Mtx for five weeks .....but you couldn’t guarantee losing the fatigue.... I’m afraid we just have to learn to pace ourselves and take advantage when the fatigue eases up.
Good luck ...I hope your rheumy nurse is helpful.
Thank you for you response. Actually I have been on Mtx for around 13 months, the 5 weeks is the Imraldi.
I did not have the fatigue before the Mtx, started after around 5 months from diagnosis.
I think the an is to wean me off press and mtx eventually.
Poor you. Typical side effect of Mtx is fatigue. Everyone do not benefit from mtx. You need to follow closely your symptoms if you have really bad symptoms for over 6m. personally I would think again. A strange thing here in France is that the protocol for RA is that mtx is no longer obligatory before the use of biologics or any other med.This was the case with me. I refused Mtx for 3years and now looking at meds with less side effect. Quality of life has been the guiding light for me. I think of course it is for all of us but how we difine this can be very different
Many thanks, it is only the fatigue which is making my life so difficult.
Regsrds
I’ve always suffered with fatigue and was doing ok with methotrexate until February this year. Fatigue has totally disabled me this year like you have spent days stuck at home too dangerous to drive too tired and heavy limbed to walk reduced working hours but still struggling.
Fatigue is my biggest symptom.
I have awful brain fog and know I am not safe to drive. I am 74 so retired from work, thank goodness.
We are very similar aren't we?
Yes. Some people are crippled with pain. Although I do get some pain ( It’s never really that bad naproxen or paracetamol soon sort it out)and a do get a lot of stiffness and major swelling it’s the fatigue. I often can’t converse with my family although I vaguely know what’s going on I feel trapped and desensitised. I get severely tired just eating 2 mouthfuls of food then need to sleep. I get this for days then it just goes away.
That sounds very familiar.
Hi there I’m sorry you have been diagnosed with RA. My experience is shattered when taking methotrexate and nearly as shattered without it. I was on it for 8 years but because of liver and gut problems I no longer take anything, but still extremely tired, I get up about 9 and ready for bed again anytime after lunch.
Hello Campaigner, sorry you feel so rubbish. Have a read on the NRAS website about medications, fatigue and self management. A lot of it may not be relevant to you specifically, but I'm sure you'll pick up a lot of valuable information on the way. Look for Rightstart for instance. If you need help to find your way around their website, just ring the helpline. They are fantastic. I'm on MTX since 2009 and never associated it with fatigue. Take care. All the best.
Thank you so much.
Hello Campaigner
I absolutely know that feeling you describe and it's awful. Hope you begin to feel better soon.
RD is a systemic disease where the body fights itself, and although you are indeed 'full of toxins' in a way - they're medications that are meant to be keeping the inflammation at bay and it could be the symptoms of RD that make you feel so ill.
I don't think you have to be having massive inflammation to feel really bad. The symptoms of a flare are whole body and systemic and can make you feel very, very low. Before I started taking any drugs at all I often felt poisoned when I was ill - now I think it's just the result of the illness.
I'm sorry I can't offer any more help. I do think it's important to get outside a little every day and get some fresh air and see something new - even if it's only just outside the front door. Do as much as you can and then rest - no point in fighting it. Hope you feel better soon .....
I got very sick on methotrexate Even at a low dose... liver counts shoot up and couldn’t move... think it depends how u metabolise certain drugs...
MTX did cause me to have increased fatigue at higher dosages. But fatigue is generally a problem for many people with RD and one of my big issues.
As others have said, you might need to give it a big longer, but if things don't settle, do contact your rheumatology dept.
Hi. I feel for you. My opinion is that the fatigue is from the RA. I’ve been on and off mxt for 15 years. Never noticed a difference so for me it’s definitely the RA. Do you think it has become worse since you started methotrexate?.Unfortunately you are in a vicious circle. You need to get out of the house for fresh air and a bit of light walking but you struggle to even get to the front door by the sounds of it. Try not to worry about that for now. Sometimes it’s best just to accept it for what it is in the short term otherwise you will just end up feeling stressed and unhappy and that is not helpful. Do as much as you can without making yourself feel worse. I would give it a bit of time and see if you settle. If you don’t, you really need to tell your rheumatologist. You might need a change of drugs. As it has only been 19 months you are in early stages timewise. You might have to try a few different drugs before you find the ones that really work for you. You say you feel unwell. Are you having blood tests regularly?. I suggest you keep a diary. Note the days you take your drugs and the days you feel tired and or unwell and the type of unwell. Put a scale of 1 to 10 for unwell and fatigue. Do it every day. You might see a pattern evolve. You might not but it might be worth a try. Take it with you to your appointments. I hope you are seeing your rheumatologist regularly or at least a rheumatology nurse. I would hope you see someone at least every three months at the moment. I don’t feel as if I’ve been very helpful but I do hope that you manage to get to a tolerable level soon. It really is horrible when you feel like this. 🌼
Hi Campaigner. I was on 25mg Mtx and was experiencing sever fatigue and tiredness. When I discussed this with the Consultant she took me down to 20mg for 6 months and I am due to go down to 15mg shortly. At the moment I think that I am a little better but not much. Fatigue and tiredness are all part of RA and the little improvement I have experienced so far could be to do with a better sleep regime than the reduced Mxt.
Why don't you try to go to bed and get up at the same times for a number of weeks and hopefully you will see an improvement but, unfortunately, the fatigue and tiredness are here to stay.....
Methotrexate has been fine for me. I have 2 friends who can't tolerate it so have different medication. All 3 of us are troubled by fatigue which seems to confirm it's the RA not the medication. I find exercise really helps me with both fatigue and the RA.
I’ve been on mtx for 6 weeks now and thankfully not experienced any side effects. I have been fatigued since developing signs of this disease but thankfully right now I’m ok. I have recently met a few people with RA and fatigue popped up in conversation a couple of which were prescribed hydrochloroquine (I’m sorry if that’s spelt incorrectly) which apparently helped. I know nothing about this drug but it may be worth researching. X
I definitely think what you have IS side effect of mtx! I was injected mtx and I got so ill my Rheumy took me off! I am currently on ARAVA and my husband said I am a new person!’ Get off that crap
So sorry you have fatigue, it’s a pain literally. I had a lot of fatigue when on MTX came off it 5 months ago due to constant infections. Feel so much better in myself without MXT. But also RA causes fatigue, my RA nurse always say respect RA and don’t do too much, exact words are pace yourself. But I would get checked out as you seem so much more fatigued than you should be. MTX isn’t for everyone.
Hi
I ve been on MTX for nearly 6 months..plus i take a 200 mg hydrochloride each day.
My fatigue is worse since going up to 10 mg MTX a week, plus i ve had a string of sore throats, cold sores, mouth ulcers and one very bad flu. Its also affected my libido as I cant seem to be bothered with much. Sorry if that's a bit too much info..
On a positive note, my RA is stable.
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