Felt more alive off methotrexate: I caught covid in... - NRAS

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Felt more alive off methotrexate

Flinda profile image
36 Replies

I caught covid in July.

For 3 weeks I stopped taking the usual 25mgs of Methatrexate.

After week two, I still had covid symptoms but, for the first time in years, I actually felt I had the energy and inclination to do so stuff again.

It felt so good to be that alive.

It lasted about a week or so.

Now, I'm back on the medication.

My head is sluggish and my energy back to 30/40% - back to pacing!

Just a slight reminder (tease) of what my life used to be like before RA.

I think we just get used to a much slower way of life with RA.

If only those scientists would hurry up and find the cause and a cure.

Just feeling a bit melancholy today!

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Flinda profile image
Flinda
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36 Replies
AngelWings profile image
AngelWings

I normally take methotrexate on Mondays but we’re up in Cheshire visiting our son and his family so decided not to take the methotrexate today, as normally I feel quite tired and sickly the next day. Hope you have a good day 🤗

Gnarli profile image
Gnarli

Understood. After a reduction of MTX from 20mg to 17.5mg I felt more lively, upbeat and with less brainfog. Unfortunately, all the old symptoms crept back over the weeks. Nasty. Now I'm to take Amgevita (Adalimumab) as an additional medication

Your body gives RA some time off whilst it’s fighting any other illness.

Angjoplin profile image
Angjoplin in reply to

I've often wondered if we can't get some kind of medication that gives a permanent mild cold to focus the immune system on. I'd trade a cold for RA any time.

Amnesiac3637 profile image
Amnesiac3637

I loathed and detested Methotrexate and refused to have anything to do with it when I realised I could take charge over my own body. I have had severe RA for 33 years and started off on all the nasties years ago like Indomethacin (which gave me a gastric and a duodenal ulcer pre stomach protection) gold injections etc. etc and then along came MTX.

For four days out of seven I had brain fog, nausea, no energy and a distinct and total revulsion to taking the tablets each Monday. Was switched to injecting it which gave me exactly the same ghastly feelings as previously. My consultant, for some reason best known to himself, kept trying to convince me how good this stuff was but having really struggled with it for a year I revolted. Within the time it took to clear my system I got my life back.

With so many drugs now out there, some like the newish Jaks , which have very few side effects, are very effective and can transform the way you feel why anyone should have to persevere with a drug which makes one feel so utterly vile for so much time is beyond me.

No doubt there are people who are perfectly happy on MTX and all power to them but if something doesn’t suit you insist on having something else. Sometimes it’s pure laziness on the part of the consultant who sticks with the same old, same old cos it's easy but we have to live with all their decisions and it’s our lives which are made miserable by medication and its side effects.

Gawd, that was a rant………

Since MTX I’ve had lots of different dmards, biologics and Jaks. They don’t tend to be effective for more than about three years each time but not one of them has made me feel as awful as MTX and most of them have worked brilliantly.

Zip1 profile image
Zip1 in reply to Amnesiac3637

I am just in the process of swapping from MTX on to biologics and stopped the MTX 3 weeks ago and I feel so much better in myself! I know it worked but I couldn’t cope with 4 days of feeling rubbish! I just hope I get good results on the biologic!

DelicateInput profile image
DelicateInput in reply to Amnesiac3637

Unfortunately, the NHS criteria is that you have to take methotrexate for at least three times before you qualify for biologics. Given drugs such as hydroxychloroquine caused retinal damage and aggravated and caused me to cough up blood (infection) then I do not take anything. I do not qualify for biologics and wondered when they might come off patent. I have had bad flare ups of RA which is getting severe but it is not as bad as the side effects of these drugs.

bpeal1 profile image
bpeal1 in reply to DelicateInput

There are already some biologics which have come off patent and there are biosimilars of these available already. However, they are still very expensive (although considerably cheaper than the originals) because of how they are manufactured.

NHS criteria is that you have to have failed 3 DMARDs (not taken MXT 3 times) either because of unacceptable side effects or because they didn’t work plus you have to have DAS score over 5 on two separate occasions.

If you’ve not already done so look at the medication page on the NRAS website it gives lots of information about the different treatments available.

DelicateInput profile image
DelicateInput in reply to bpeal1

Thanks - I thought they would be a lot cheaper if off patent and was going to see if I could get something.

GP surgery won't give a prescription for Dmards for safety reasons and my age (73) even though prescribed by NHS rheumatologist. I do have contraindications so can understand it, and they are dirt cheap so it cannot be the cost. I have only ever taken hydroxychloroquine and had unacceptable side effects worse than the RA itself.

I am not taking anything at the moment. I have used electro acupuncture and Chinese herbal tablets in the past which were both very effective and relieved symptoms 90%+ but they have risen massively in price, and I have been getting bad flares. If I can't get anything else, I will have to use them again.

bpeal1 profile image
bpeal1 in reply to DelicateInput

By the sounds of it you need to speak to your rheumatology team and explain your GPs concerns and ask them their thoughts.

DelicateInput profile image
DelicateInput in reply to bpeal1

The rheumatologist was not keen on prescribing them and said they were toxic, in particular mentioning my age and other health issues (not the liver!).

I can see him privately and see what he thinks but so far as the NHS is concerned, his hands are tied and I either have to take something that might kill me or put up with the RA. NICE are clear that you have to try Dmards first regardless of other issues or age. I am coping by exercising and keeping moving but I have difficulties.

bpeal1 profile image
bpeal1 in reply to DelicateInput

You can apply for exceptional circumstances if you can’t meet the NICE criteria and not being able to take DMARDs for other health reasons would seem like a good enough reason. Maybe ask to see a different rheumatologist in the department for a second opinion.

DelicateInput profile image
DelicateInput in reply to bpeal1

Thanks, that's really helpful. I prefer to see my own rheumatologist - I found him very good and extremely pleasant so I have no issues with him. Somehow, I think NICE will expect me to have one foot in the grave!

AgedCrone profile image
AgedCrone in reply to DelicateInput

The NICE rule about a consultant applying for funding for Biologics is that you must have tried & failed 2 or 3 DMards- the number depends on your health authority…. one of which must have been Methotrexate.

It is now relatively easy, as with so many Biosimilars on the market…prices have come down considerably.

DelicateInput profile image
DelicateInput in reply to AgedCrone

Thanks for the reply - the info is useful. I have another issue though in that I want to retire shortly (aged 74) and go travelling and am finding that if taking drugs then the premium is heavily bumped up. Unfortunately, silly me cancelled my M&S policy a couple of years as I was hardly using it and it was a real bargain. Looks like I am going to have to rely on electro acupuncture/Chinese herbal medicine. It works well but it might only by symptomatic relief.

in reply to DelicateInput

MSE (Martin Lewis) has a site which gives a list of travel insurance firms for those with pre-existing conditions.

Flinda profile image
Flinda in reply to

It's Martin Lewis fantastic. He's done so much and is still doing so much for so many people, especially over the energy price increases. He's my true hero.

in reply to Flinda

He really needs to be Chancellor of the Exchequer…

DelicateInput profile image
DelicateInput in reply to

Thanks, very grateful. Age is also a big problem. I don't know if pre-existing conditions are that bad if you are young but when you get older it is almost impossible.

blorie profile image
blorie

My experience is similar to Amnesiacs post. It wasn't until I had a severe chest infection that I had to stop the MTX for four weeks. I then realised how poorly it was making me. Its great for some but the biologic/newer drugs have been much better.

Flinda profile image
Flinda

To everyone who replied to my post, thank you so much. It's made me realise that I need to request another medication to vastly improve my quality of life. Although I can tolerate Methotrexate, I had no idea how much it has gradually turned me to a slug like existence. I suppose they don't expect you to notice, or blame the RA, as it's the cheapest option. But I want my life back and it's there to be grabbed (if I could with my swollen hands!).

bpeal1 profile image
bpeal1 in reply to Flinda

I couldn’t tolerate methotrexate either (although I know some people who have no issues on it whatsoever). There are plenty of other options. I suggest reading the NRAS website on medications before seeing your rheumatologist so you can have an informed discussion about other options. nras.org.uk/information-sup...

smilelines profile image
smilelines in reply to Flinda

Way to go! Yes! Feeling like an unwell slug feels like normal when it creeps up. Try something new!

AgedCrone profile image
AgedCrone

Why don’t you tell your rheumy team exactly what you have said here & say you really do need to change DMards as the Mtx makes you feel so bad?I do know it’s difficult to get rheumatologists to change their minds but if you speak to your rheumy nurse & ask her to put your case to your consult…..it will make him/her aware how bad you feel on Mtx.Good luck..best foot forward & say how you feel.

Egpa profile image
Egpa

Hi, I was on mtx 25mg injections cought covid and and infection after was off meds for 5 weeks, felt great not so stiff joints or hands not hurting, but all came crashing down and ra came back to bite me. Went back on and had to have my mtx reduced to 20mg as all my bloods were up the creak. Starting to feel better now, except my right hand is so painful was given a brace to try and ease the pain in my thumb. Good luck, take care and stay safe.

Sheila_G profile image
Sheila_G

Obviously drugs are a very personal thing. I wouldn't say any drug was bad or good for anyone else. Of course we all have different experiences of medications and I personally have found mxt to be excellent for me, for the past 20 years. As with all drugs it is very much horses for courses so what suits one won't suit another. I would say follow the advice of your Rheumatologist and discuss any negative or positive reactions with them. They are the experts and the only people you should listen too regarding the efficacy of any medication and the benefits or otherwise to you. Good luck

JanetJAM profile image
JanetJAM

Was just reading this and the replies has made me wonder I’m taking 10mg methotrexate and the nurse told me I won’t get any side effects as it’s a low dose but I’ve noticed I’m feeling low tired and very down so now after reading this I’m wondering if it’s the medication causing it has made me think.

GordonEdin profile image
GordonEdin in reply to JanetJAM

It is difficult to separate out the effects of RA and methotrexate!Most of the side effects that people report from the drug are similar to those that RA itself can cause.

Maybe you need an increase?!

Either way, I would suggest (from personal experience), if you do want to change, try one less or one more pill for a period and see what happens (after discussion with your doc or nurse).

I was on 20 mg and had zero RA symptoms. Reduced to 17.5mg. After a couple of months the old RA problems started to reappear. (Joint pains, tiredness etc). Back up to 20mg, symptoms went away.

Garnacha profile image
Garnacha

I had a break of nearly 3 weeks in March from mtx due to covid & felt so much more "normal " again but then all the pain came back with a vengeance, I said at the time wish they could bottle something to take that didn't make you feel too ill instead of having mtx, I'd had the tablets then by injection for over 18 months.

In June I thought enough is enough & with the consultants approval stopped, now trying sulfasalazine instead along with lefluminode, etoricoxib, hydroxychloroquine & gabapentin.

Initially felt great, no sickness, giddiness, brain fog, fatigue etc but am now finding I'm starting to get all of the above again, but, my b12 is getting low again which I believe is attributed to lefluminode, have a f2f with consultant Thursday so will see what he says x

Katie-Mag profile image
Katie-Mag

Hello Flinda, sounds like it could be the methotrexate not the RA making you feel sluggish and lacking in energy. I was the same but the issue was completely solved by a change of treatment. Could you discuss this with your RA team, perhaps a change of medication could give you your life back?

Mmrr profile image
Mmrr

I'm with you, MTX was worse than the effects of RA. The fatigue was unbearable....and I do have awful fatigue with RA, but the fatigue with MTX and gut issues were just awful. After 11 months I stopped taking it and advised rheumatology that I was not taking anymore. I was started on biologics soon afterwards.

CeeY profile image
CeeY

Here in Canada drugs are not covered by our public health system, but by private insurance (or out of pocket if you don't have coverage). Generally biologics etc are covered but you need a preapproval. Preapproval usually requires showing you've tried and failed on something cheaper (aka MTX). I have a friend who is a pediatric rheumatology practitioner and she said for most of their patients they move through MTX and on to more "modern and effective drugs that are better tolerated" (her words) pretty quickly, documenting side effects for insurance purposes. My adult rheum only refers to MTX as the gold standard (as most do, I know). I was reading a research paper where the researcher found that about 50% of patients stopped MTX due to the effects, and 50% of those that stayed on it continued to have fairly significant nuisance side effects. He pondered why patients continued to tolerate that when there are other options available and suggested it was likely due to docs not taking nuisance side effects (and their impact on quality of life) seriously, docs not offering other options, and - of course - cost.

Flinda profile image
Flinda

This is extremely interesting, and useful. Thank you. I've been on maximum methotrexate since early 2015 and remember just being so grateful that something worked! But now, my fatigue and brain fog (dysfunction?) is horrid and restricts any activity to just a few hours a day, after that I either collapse or seem incapable of doing anything productive anymore. It really is that severe but I just thought it was a symptom of RA, and not the medication. Now, I know different and, having had a taste of feeling "normal" again, I want more of it. I'm missing out on so much quite needlessly. Again, thank you for the information. x

in reply to Flinda

I was diagnosed with Fibromyalgia on top of my RA as my fatigue was so ridiculous. Stress was a major factor, so cut out as much as humanly possible. I started on Amitriptyline 20mg at 7pm a few years ago, and that has made a huge difference. I sleep soundly now and awake feeling refreshed, which I never used to. I also took medical retirement, which was upsetting at first, but now I’m really pleased about. Horrible time sorting out pensions and benefits, but I got here..

Flinda profile image
Flinda in reply to

Many thanks for sharing your personal journey with RA. So glad to hear you found the perfect drug for you.I'm hopeful that there will be another treatment which will lengthen my day/week to normal levels. Like you, I had terrible issues accepting my reduced abilities but now I'm just all worn out and the thought of working full time again is just off the radar. All the comments on here have made me realise I need to negotiate with the Rheumatologists - they hold the key to my future!

I did read somewhere that the shortage of qualified staff working in these depts was putting patients at risk, so even getting an appointment might well be a challenge. I've not heard from them in well over 2 years. x

in reply to Flinda

I think Covid has been a factor, as many staff were redeployed, and also due to many patients being CEV, Outpatients were shut. I haven’t had a F2F in nearly 3 years. I think they must be focusing on backlog and newly diagnosed people. I also heard that a lot of people have taken early retirement from the NHS, as the staff shortages are so ridiculous. My 3 year point will be January. I will insist on seeing someone if I don’t hear by then. I am stable, and self monitor, so it’s not an issue for me, but people suffering need to contact their Rheumatology Departments.

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