Methotrexate: Hi all Administered my first... - PMRGCAuk

PMRGCAuk

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Methotrexate

Coffeebeans
Coffeebeans

Hi all

Administered my first methotrexate injection last night. Took about half an hour to psyche myself up to do it, jab not the issue, more the indecision over methotrexate.

Slept through my alarm this morning - very very tired today but otherwise ok for now.

Hoping this makes the difference and helps me taper more effectively without the massive issues, every mg down is so hard. The mood swings are horrific. If not, back to the drawing board.

30 Replies

Good luck, Coffeebeans! Will be thinking of you.

Coffeebeans
Coffeebeans in reply to 123-go

Thankyou 😊

I felt very similar ambivalence 4 weeks ago before my first dose - without the added complication of an injection. So far, having had two 15 mg and two 20 mg doses I haven't noticed any improvements but have had no major side effects.

I do find that I tire more easily on Tuesday and Wednesday, following MTX on Monday evening, but as PMR seems to leave me permanently exhausted this may all be in my head.

Hi NorfolkEnchants

Good to hear you haven't had any major issues. So far. I've also started on 15mg and am wiped out today. Trying to work and my brain won't keep up.

It is very difficult to know what is caused by what isn't it, we can all relate to the fatigue of PMR but I do feel somewhat different today after MTX. I suspect it is the MTX in your case with PMR adding to it in the background.

How long do you plan to give it in terms of improvements? I always said that if it didn't seem to be helping I would stop but 3 months to see an effect seems to be the norm.

Hi CoffeebeansDifferent sources seem to suggest 3 - 12 weeks and 6 - 8 weeks to see an improvement.

To be honest, I'm not sure what I'm really expecting to notice. I was only diagnosed in Feb 2021 and am on 15mg of prednisolone, having started on 15mg, forayed up to 20mg for 3 weeks and then tapered back down to 15mg. The pred seems to deal with almost all of my PMR and RA pain so I really don't know what the MTX is going to improve. I only agreed to take it so early in the disease cycle because I have RA as well. I have a phone appointment with my rheumatologist in a fortnight and will talk to her about the MTX then. I fear that she is going to advocate quite a swift reduction in my pred dose based on the fact that I'm taking it.

In your case, it would seem sensible, as long as you don't start to experience nasty side-effects, to continue to take it through as least one taper to see whether it helps with the issues that you have been experiencing.

Oh I'm sorry, you have a real mix going on there which makes the decisions a bit more complicated doesn't it.

I'm thinking the same way as you in your case, if pred deals with both, and pred is the mainstay for PMR then why add MTX this early. I agree adding later on down the line but then I'm no expert on RA! These are all good questions for rheumatologist aren't they.

Fingers crossed.

The trouble is, when you're talking to the professionals, what they say seems so sensible and reasonable. It's only in the hours and days afterwards that you think "Oh but ..." and wish that you had had the time and mental space to formulate a response or you have done some research which has generated queries.

It's not really possible to have much of a dialogue when appointments are 6 weeks apart (if you're lucky) and both parties have very different agendas.

Yes, this exactly. What would work work well for patients is to have an appointment then a repeat appoint a week later to discuss the curve balls.

Not sure it would work in practice though.

Start a note pad and list these questions as they arise. Doesn't help with unexpected info though!

If you are on MTX there is a Rheumy Nurse attached to the Team & you should have her Number to answer any questions you may have.

MrsNails
MrsNails in reply to Coffeebeans

MTX is ‘The Gold Standard’ Treatment for RA so if you have RA & PMR it’s a good drug to try.

PMRpro
PMRproAmbassador in reply to NorfolkEnchants

If you have RA, the MTX is a DMARD, a disease modifying antirheumatic drug, which alters the RA disease process and reduces the risk of long term damage to the joint linings and deformity of the joint by slowing the erosion down. Pred doesn't do that. The main reason you see far fewer badly deformed RA hands and feet and patients in wheelchairs is MTX which has been used for RA now for many years, since the mid-80s, It isn't perfect - but when it works it works pretty well and is affordable worldwide.

Coffeebeans
Coffeebeans in reply to PMRpro

Good to know!

Thanks MrsNails and PMRPro. I understand how MTX works and I am very grateful that it is a treatment which is available to me - as PMRPro pointed out, I am unlikely to develop the characteristic RA joint deformities which were, until recently, experienced by many older people.

My point about not really knowing whether or not the MTX was working was in response to Coffeebeans asking "How long do you plan to give it in terms of improvements?" As the pred seems to be doing a really good job of keeping my RA pain at bay, as well as the PMR pain, I will just have to take on faith the fact that the MTX is necessary to stop the joint swelling and deformities as I will be unable to notice an improvement. Perhaps I will be able to squat to see what's in the bottom of the fridge or to pull up a weed? Or to lift my right leg up over a stile whilst out walking without it twinging? These are the only things which cause significant discomfort at the moment.

As MrsNails says, MTX is the gold standard treatment for RA. It's the treatment recommended by the consultant, and I have no reason to doubt her, but that doesn't stop me questioning and discussing the possible risks and benefits.

I’m a long time MTX User (Tablets) & went on to injections 12weeks ago & recently increased to 25mg MTX takes about 12weeks to show if it’s really working, l used to find that l was pretty wiped out the next day & now l tend to just chill the following day & go with the flow...

I find the injections much easier than 10tiny tablets, especially with my nails 😉

My recommendation is never to book/plan anything for the following day so you are not committed to anything & can rest/relax depending on how you feel.

Good Luck 🍀

MrsN

Coffeebeans
Coffeebeans in reply to MrsNails

Thanks Mrs Nails.

I found the injection very easy as you say. Resting up not so - I work full time and don't have many options not to.

Brain is refusing to engage today!

MrsNails
MrsNails in reply to Coffeebeans

Then it maybe a case of changing your day, so you take it at the weekend.

The other option is to discuss with Occy Health about a temporary change in your hours while you adapt to the drug.

Someone l know who took MTX for a different condition, reduced his working days to four & took MTX on a Sunday, he decided it was all about Life/Work Balance.

Coffeebeans
Coffeebeans in reply to MrsNails

Yes I may need to discuss a temporary reduction. I don't think I can afford to reduce hours permanently without moving house etc.

I agree it's about a balance but I'm backed into a corner right now.

MrsNails
MrsNails in reply to Coffeebeans

PMR is a Condition that Company’s have to improve things for to enable you to work, your GP could sign you off & return you on Reduced Days to accommodate the adaptation to MTX - they may well tell you to take it at the weekend 🤨 but the feeling does pass as you get used to the drug.....

Coffeebeans
Coffeebeans in reply to MrsNails

The one thing I'm not willing to do is ruin every weekend - life is crap enough without that too.

I will contact occy health at work. I've also signed up for a 7 week programme on how to live well with a chronic condition through our IAPT service.

MrsNails
MrsNails in reply to Coffeebeans

That’s the best plan, as it shows you’re willing to do your best & they also need to be aware you are on MTX as although Shielding has finished you would now be technically classed as Shielded.

Coffeebeans
Coffeebeans in reply to MrsNails

It's over Zoom luckily. Don't have to see anyone in person..😄

PMRpro
PMRproAmbassador in reply to Coffeebeans

Many people with RA who work take it Friday night so the MTX flu happens over the weekend. That didn't help me - the fatigue lasted all week. Like you - I don't fancy that either!

Coffeebeans
Coffeebeans in reply to PMRpro

That's what I'm dreading because that would be unworkable. Don't know until you try though I suppose..

I know you didn't get on with MTX and I've already decided that it must improve things for me to stay on it longer term.

PMRpro
PMRproAmbassador in reply to Coffeebeans

Did you see my reply to Norfolkenchants further up? It was to you too really.

"If you have RA, the MTX is a DMARD, a disease modifying antirheumatic drug, which alters the RA disease process and reduces the risk of long term damage to the joint linings and deformity of the joint by slowing the erosion down. Pred doesn't do that. The main reason you see far fewer badly deformed RA hands and feet and patients in wheelchairs is MTX which has been used for RA now for many years, since the mid-80s, It isn't perfect - but when it works it works pretty well and is affordable worldwide."

I'm with you Coffeebeans! I currently take my MTX on Monday and lie low on Tuesday and Wednesday. I have an appointment with occupational health to discuss my return to work and will strenuously resist any suggestion that I should take it on a Friday - although I would consider a compromise and take it on Thursday. I need a proper weekend of being able to recharge my batteries, see friends and family (when the world re-opens), go on long walks and catch up with domestic chores for my mental wellbeing. If I am slumped watching Netflix because of the MTX I won't really get the benefit of my weekend.

I did yes, thankyou.

I don't have RA though so it hoping it will help my traumatic tapers instead!

I hadn't quite noticed the effect though - you're right, I haven't seen as many people with the typical RA hands.

Mary Berry has arthritic looking hands I noticed the other day. She is still a brilliant cook 😊

I believe that Mary Berry's hands were affected by childhood polio rather than arthritis. Something for the anti-vaxxers to ponder perhaps?

Oh really! Yes, absolutely something for the anti vaxx crew to consider.

I went to school with a girl whose sister had polio as a child. She will be 45 now so really in the age category where this shouldn't have happened although I don't know the circumstances. She has quite a noticeable disablement but can walk.

This is the impact of these diseases and it's easy to forget when you don't see the effects.

Yes, 45 is very young to have had polio if they were UK/Europe based although the vaccination programme was rolled out at different rates in other parts of the world. I used to live in Zimbabwe where there were still lots of people who were affected by polio.

Similarly, I have a friend whose husband is deaf as a result of childhood measles. Our children were just about MMR age at the time that Andrew Wakefield was much in the news - she gave MMR sceptics very short shrift!

My daughter was due her MMR around that time too. I did lots of research and came to the conclusion she was to have it. And she did. It was one doctor and an amazing amount of anti vaxx rhetoric. Awful times.

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