Reluctance to start DMARDs

Caleb1981

I think I’ve made the decision, after resisting for 6+ years, to start taking Methotrexate.

The decision has come after feeling ‘niggles’ in some of my bigger joints. The fears of taking Methotrexate are starting to outweigh the fears of damage to some of my large joints.

I feel truly stuck between a rock and a very hard place. There doesn’t appear to be a lot of support from Rheumy team when it comes to this kind of stuff or is it just me? I was really hoping they’d support me in getting to the bottom of my fears but they didn’t. Perhaps I’ve been watch too many hospital dramas on TV 🙈.

I was willing to start Sulphasalazine a few months back but they weren’t happy because I work offshore - they appear absolutely fixated with using Methotrexate and preferably by injection. Not great when needle phobia is second place to taking cytotoxic drugs 😱.

Anyone have similar thoughts on medication?

stickywicket

Hi and welcome.

I've had RA for years and very much wish methotrexate had been around when I was first diagnosed. It's tried and tested and, provided we take it as directed and are conscientious about our regular blood tests, it's very safe.

Usually we're started on tablets rather than injections but many prefer the latter. To be honest, I think rheumatology departments are now so overstretched they don't have time to gentle patients through the process. It's just take it or leave it and, really, if you read what uncontrolled RA can do, it's so much better to take it. Good luck and I hope it helps you as much as it has helped me.

Caleb1981

Hi @stickywicket ,

Thanks for commenting - it is always good to hear positive stories about Methotrexate 👍 and I’m pleased it has worked for you and, I’m assuming, without any adverse side effects.

You are undoubtedly correct that our Rheumy teams are overstretched but I don’t think that makes it right. We shouldn’t always just accept what they say, I always think it’s worth questioning their decisions and not roll over compliantly - they don’t like it but it’s healthy for both parties. I am not even remotely rebellious but when it comes to my health - I need to know I’ve exhausted everything and go with my gut instinct ( even though I know it could be wrong for me in the long term). I also think if they offered some support in other areas - mentally, dietary, physically etc - the burden on them could in fact be reduced.

I fully understand the long term damage uncontrolled arthritis can do. I, as a suffer of PsA, have two badly damaged joints in my hands - ok, it’s just a couple of fingers, but it is frightening, just how much it impacts daily life. I also appreciate that my opinion of these drugs would have been very different, had it been more problematic in some of my larger joints and that some people have no other choice, it’s try the medication or face disability - I do always bear this in mind.

Despite all of this I still fear taking the dreaded drug that is Methotrexate. Hearing stories of people that have been taking it for a long time is comforting and does help me move forward with making my decision.

stickywicket

I was diagnosed at 15 in 1961 and there were no modern DMARDS on offer then. As a consequence of this OA set in and I needed new knees by 1981. Virtually all my joints are either self-fused or subluxated. Methotrexate really improved things for me. I know some have side-effects but I never had any worth mentioning. I just look at how RA can affect the heart, lungs etc and am delighted I have protection against it. Remember, those who are thriving on a drug don't bother to post about it on the internet. Why would they? They're out enjoying themselves. It's the few with problems who write about it. Whatever your decision, I wish you well.

jamieA

https://community.versusarthritis.org/discussion/56605/reluctance-to-start-dmards

Hi @Caleb1981

Like you I've never been too happy at taking medication. However since being diagnosed with PsA in October 2020 I've had to throw that thought out of the window. I'm on sulfasalazine, methotrexate and the biosimilar Amgevita - the clinic nurse said they work in conjunction. I've been on MTX since February 2021 and the only recurring issue I've had is fatigue either the day after or two days after. Last October I took a chest infection and was admitted to hospital - I'd had a number of serious chest infections in the year before being put on MTX. While in hospital I was seen by a rheumatologist who reckoned that as the infection was viral rather than bacterial it may have been caused by MTX so he reduced the MTX by half - to 10mgs.

Fif

Like you, Caleb, I've always been wary of taking medication but since my relatively recent diagnosis I weighed things up and decided that methotrexate was the least worst option. I've been gradually increasing the dose over the last 12 weeks, haven't had any significant side effects and am pleased to say my symptoms have improved considerably. I would certainly make the same decision again.

Caleb1981

https://community.versusarthritis.org/discussion/comment/691516#Comment_691516

@jamieA Thanks for that - I took my first dose last night and I think I feel ok about it. Starting at 2.5mg/week then I’ll step it up bit by bit. They’ve fairly throw the medicine cabinet at you - I hope it does what it needs to do for you 🤞🏻. Not so good about the chest infections - hopefully a one off.

Caleb1981

@Fif - Thanks for that, it has taken me 5 or so years to weight things up but feeling niggles in my shoulders, hips and elbows tipped the balance for me. First dose down last night, now to see how it goes.

Good news that it sounds like it’s working for you 👍.

stickywicket

Hello again, If this is how you were a advised to take it then do carry on. I admit I've never heard of anyone taking just one tablet. I can't see there would be any side effects but, equally, I can't see it doing any good. NICE advises a higher starting point. https://bnf.nice.org.uk/drug/methotrexate.html

Don't expect too much too soon. It can normally take up to three months to have any effect' but that is at a higher dose. With luck, you will feel the benefits, though

Caleb1981

Hi @stickywicket ,

My rheumatologist recommended a starting dose of 10mg but after a bit of research and thoughts on ways to get started on the treatment, I decided to start on 2.5 mg per week and step it up from there - I’m going to increase my dose once every 5 weeks to fit in with my offshore rotation. This gives me 3 weeks at home to get used to the new dose. This approach kinda falls in line with the treatment for psoriasis, although Nice recommend weekly increments. As I have psoriatic arthritis, I thought this was the best way to start. I’m hoping building it up slowly, I will minimise the possible side effects.

My rheumatologist thinks I’m absolutely crackers but I think he’s a bit of a dinosaur and stuck in his old fashioned ways. (He is actually really nice, I don’t mean it in a nasty way)

Thanks for sending me the info though, it is very much appreciated.

stickywicket

I confess, my instincts are to agree with your rheumatologist (we dinosaurs stick together)😀 but I do take your point about not wanting anything untoward to happen while you are offshore.

I think the most common side effects are fatigue, which I occasionally get the day after or the day after that, and stomach upsets. I have to take a stomach protecting pill for other reasons and so I don't have this problem. Most people who do get side effects are told to increase their folic acid but only do this as advised by your rheumatologist as (I believe) it does decrease the efficacy of the methotrexate.

The main thing to remember is to keep up with your blood tests. They can pinpoint upcoming potential problems before they become actual ones.

Caleb1981

Thanks @stickywicket -

on the Subject of folic acid: I was advised to take it 3 days before my weekly Methotrexate dose.

The NHS website for Methotrexate recommends that folic acid is taken the day after! See screen shot below.

Have you tried different timings for folic acid?

stickywicket

I've taken mine for over 20 years exactly as prescribed. Methotrexate on Thursdays and folic acid on Fridays and Mondays. I recall one rheumatologist being a bit surprised at this but he just said it was working so go with it.

jamieA

I wonder what the different strategies for methotrexate and folic acid are. Since day one of being on MTX (15mgs initially, later increased to 20 mgs, then reduced to 10mgs) I've been prescribed a 5mg folic acid tablet on the 6 days of the week I don't take MTX.

Caleb1981

Hi @stickywicket & @jamieA ,

There doesn’t appear to be a standard approach, unless there is, but per health board.

My health board go for Folic acid ‘Fridays’ and Methotrexate ‘Mondays’ - how catchy 🤣.

I opted for Methotrexate ‘Thursdays’ and Folic Acid ‘Fridays’ too. Just because I got to go ahead from the Rheumy team on a Thursday and I read about taking Folic acid the day after - it just makes more sense to me.

My daughter used to take Folic acid 6 days per week, but only because she had really bad nausea when it was weekly. Daily dosing did help.

I’ll go with it for now and see how it goes.

Mariannie

I’ve taken methotrexate since I was diagnosed with RA 4 years ago. It’s not been nearly as bad as I expected. I take it at night before I go to bed, very rarely suffer any nausea. The Dr did increase my folic acid as I got mouth ulcers but the FA helped those.

Everyone is different and will react different too

JenHB

taken my first dose of methotrexate tonight (15mg) - was advised to take it after eating that evening and have got 2.5mg folic acid tablets to take all the other days.

Caleb1981

Hi @Mariannie - Good to hear it hasn’t given you any real trouble over the 4 years. I’ll see how it goes with the Folic acid as I up my dose of Methotrexate.

Hi @JenHB - Good luck, I hope you settle well on it and it gives you relief from your symptoms.

Gadgetgirl

Like you I was very reluctant but the pain I was in I had to make the decision. I am glad I did. I started on tablets but switched to the injection as I suffered really bad with Acid Reflux. I also take folic everyday to help with this and it seems to be working. I hate needles and when I have my bloods I cannot look. The MTX injection is like an epi pen and easy to do. I do now have Kidney stones and the urologists thinks they are related to the MTX but the RA consultant doesn't agree🤷‍♀️ However, I know someone who would not have DMARDs when offered and he now cannot move his neck and his hands are really bad. He has been told he'll be in a wheelchair soon and all because he left it years before taking any drugs. I know it is a big decision but please do try it, you can always ask to start on a low dose like 10mg and build. I take my injection weekly at the same time at night and suffer no side effects. Good luck

Caleb1981

Thanks @Gadgetgirl, good to hear another Methotrexate success story.

I seen the Rheumy nurse today, she was lecturing me for starting on such a low dose (2.5mg/week). I do intend upping the dose, just really slowly. I’ve resisted taking it for so many years, I don’t think another 4 months to get to the final dose, will make much difference. I got to see the Epipen for injections, wasn’t as terrifying as I’d expected. Maybe something to consider for the future, I already suffer from acid reflux, so it’s likely that it’ll get worse as I up my dose.

I’ve had my Folic acid increased to 6 days a week, I felt hungover - the day after Methotrexate, even at 2.5mg.

I wonder what the lowest dose that has been successful!

jamieA

https://community.versusarthritis.org/discussion/comment/691996#Comment_691996

Hi @Caleb1981

I've not seen the injection pen for MTX but take the biosimilar Amgevita by injection pen. I've never found it a problem and don't feel any real pain with it. I assume it will be the same regime with MTX injections in that you'll have to rotate injection sites - right thigh, left thigh, left stomach, right stomach. I take 10mgs of MTX on a Thursday and usually either on the Friday or Saturday I'm quite fatigued. Today I've been ok so I expect I'll be tired tomorrow. I've never had any reflux or digestive problems with it in the last year I've been on it.

norfolklady

Hello now read the comments on Methotrexate. I can agree entirely with Stickywicket. I was diagnosed with RA in 1997. It was a devastating diagnosis, extremely severe case of RA. For nearly 25 years I have been taking Methotrexate. Without it I dread to think what the long term outcome would have been. I take the dose, tablet form of 15mg, weekly on a Monday & twice a week Folic tablet. I always take the Methotrexate early evening just before my evening meal. Very rarely do I suffer any side effects. I have learned the hard way to eat healthy nutritious meals, (easier said than done I do realise!!) & to get rest when I need to. The drug has enabled me to live my life as well as I can & now in my sixties I am still able to work part-time. 

Arthuritis

@Caleb1981 Fully understand your reluctance, I recently boarded the MTX train, (Dec 2021) so familiar with all of your concerns, including as rotator you don’t want to be medivacc’d out!

First, congrats on being a rotator, - its a marmite job, love it or hate it! Second, congrats on having paid attention and being aware years ago so you knew this day would come.

For me the time period from my first mention to the doc about my weird swollen finger to being on mtx due to very aggressive RA was 4weeks, so not a lot of time to mentally prep, but if I had paid attention, the earliest signs were there a year before, when I had never-ending footpain that would not go away and got worse with rest.

The key to mtx liver tolerance/toxicity are your blood tests, particularly liver function, that is why once on the mtx train you are closely monitored via regular tests. Also you do not mention your ACCP & RF levels, these indicate how aggressive it is and likely starting dose.

Now the way MTX works is by interfering with, and slowing down rapidly multiplying cells, after all, it was originally invented 50 years ago as a treatment for rapidly multiplying cancer cells. However in small doses like ours it takes the edge off the other group of rapidly multiplying cells, triggered immune cells that think you are being overrun with an infection. These marauding T cells live for 1-3 months, which is why it takes time to reduce the population of these vandals.

Taking a very low dose means your immune sys will just compensate by being even more active, and you have to walk a fine line between taking too much and too little. In the UK the safe max for RA is 25mg/week.

I myself started on 5mg/week, fearful of taking an immunosuppressant during a raging pandemic and its impact on my poor liver. 5mg achieved absolutely nothing for an 80Kg bloke.

The rule on mtx is you temporarily stop taking it if you have an infection to allow your body to mount a vigorous response. Which means everytime you get a flu your immune sys might hammer both the flu virus and your joints. Sadly mtx is a sledgehammer, that can slow a fast running watch… but we wish it was a precision screwdriver.

However once I learned how it worked, I understood why the rheumy wanted to start me on it immediately at 10mg, and I then quickly asked for it to be upped to max tolerated/allowed. (I am on 20, going to 25) and the blood tests ensure I am ok. I avoid obvious infection sources like crowded indoors.

Your joints & cartilage are made of many laminar layers (like bullet proof glass), designed to withstand a lot of beating, with pain nerve endings at the deepest layers close to bone or core, which is why they take a lot of damage before you feel the pain, however that does not mean its not being weakened or destroyed just because your pain is not intolerable. The destruction from RA is continuous, while repair is inhibited, so you do want to address this early.

This is also why the rheumys want to “hit it hard and fast”, because cartilage is very very slow to repair, and damage difficult for patients to gauge until its already done because the pain receptors are deep down, like in your teeth. By the time you have bad toothache, your dentist is already fuming.

So while the MTX “useful impact” on your T cells is slow, any damage to your liver is apparent quite quickly on the blood tests, which are pretty sensitive, eg my rheumy could even tell I’d taken an ibuprofen that week! Avoid alcohol, its the rotators’ go to, but best don’t. I’d take the rheumy recommended dose at the start of your onshore leave time, do the blood tests and track those for reassurance so by the time you are ready to go off shore the RA T-vandals are not so populous! If you do get some infection then take your rheumy’s advice on what to do. Mine told me to skip mtx that sickie week.

Hope that helps a bit.

Caleb1981

Thanks @Arthuritis

Thanks for the explanation - it is helpful and very much appreciated.

I suppose I’ve been fortunate enough that I’ve had time to consider the use of Methotrexate and other DMARDs. My disease has been very slow to progress, in that since initial indications in 2010 that something was wrong , a painful and very inflamed toe on my right foot, my arthritis has only cropped up in my left index finger and right pinkie with a some periodic swelling in another toe on my right foot. I do get niggles in my knees, hips and ribs but this is inflammation of ligaments, tissue and entheses rather than cartilage - it feels different in a way I can’t really explain. The original toe that started it off has been pain free for years and looks almost normal. Both finger joints are badly damaged and can be painful as a result.

My first encounter with a rheumatologist was brief and drugs were barely, if at all, mentioned. I was treating the symptoms with acupuncture and it did work really well on my toe.

My second rheumatology encounter some 5 - 6 years later, when my left index finger became problematic, was when Sulfasalazine was mentioned. It was almost described as an experimental drug and the only possible way to stop this ‘reactive’ arthritis as it was then named. I resisted at that point as the side effects appeared to massively outweigh the benefit - I could manage the pain with acupuncture and naproxen. This rheumatologist did get me to switch fro naproxen to celecoxib to reduce gastric side effects. At this point I didn’t really know other DMARDs existed. I did really have the drive to research it at that point.

I experienced quite a big flare in 2018 and found myself back with the rheumatologist, it felt like every joint in my body was painful. Methotrexate was brought into the picture and I debated with myself and spent hours researching my condition, now confirmed to be psoriatic arthritis PsA, and DMARDs - I still felt the side effects outweighed the benefits. I genuinely couldn’t talk myself into taking these drugs. It has been a debate with them ever since, until now - watch this space.

My most recent blood tests showed no cause for concern after 2 weeks of taking methotrexate, let’s hope that continues in time and, as I up the dose. Regarding RF and Anti-CCP, my levels of these have always been ‘normal’ - This, as far as I know, is because I have psoriatic rather than rheumatoid arthritis. This along with odd nail pitting, a small patch of psoriasis and other minor symptoms, is what differentiates the two.

You’re right about offshore life too, it is a marmite job - I sit on the love it side. The time off is definitely the best bit, as I’m sure you know. Yeah, feeling rough out here isn’t on my list of ‘nice things’ especially as it is a floating rig 🤢.

Arthuritis

@Caleb1981 Not sure whether MTX would be the best for PsA, but I think NICE won’t allow anything else unless you’ve had 6months of MTX, but I could be wrong.

Re floating rigs, -switch to a Norwegian one, then its a floating Hilton! 😆

Overall you seem to have done well out of your slow creeping autoimmune. Keep going!

jamieA

I suppose it depends on the patient and their specific predicament how the medication plan applies. It is probably dependent on the consultant you have as well. I was started on sulfasalazine - ramping up weekly from 1 500mg tablet a day to 2 then 3 then 4 and then jumping to 6 a day - 500mg to 3gms in the space of 5 weeks. I was on that for 3 and a half months before they added 15mg MTX as I wasn't getting any better on the sulfasalazine. The MTX was increased to 20mg a month later and that didn't work either. I was on that five and a half months before the Amgevita was started and that's what has made a difference. The rheumatology nurse said they had a protocol that each drug had to be used for 3 months to see if it worked before moving onto the next stage. The cynic in me looked at the cost of each drug and I came to my own conclusion. I'm still less than happy that I'm still taking the sulfasalazine and MTX which clearly didn't work but the rheumatology nurse says the drugs work in conjunction and doesn't want to dispense with them. I accept that as I don't want to be back where I was previously with my PsA.