Methotroxate - should I wait a while?

Creaking

Hi,

Am new to all this so please bear with me! Spent about a year going back and forth to GP/physio with a dodgy knee (osteo they thought) then finally, after a horrible episode when I was in agony and couldn't walk for a week, they did some blood tests and I now have a diagnosis of rheumatoid arthritis. Based on the tests and a scan of my hands and wrists, the doctor recommended an immediate steroid injection and then to go on to methotroxate.

My levels of pain and lack of mobility are irritating, but relatively mild. My knee is much better than it was (exercise mostly) and I have changed my diet quite drastically to lose weight and avoid possible 'flare' foods.

Having read all the VA leaflets that the Dr gave me about the various drugs, I am a bit reluctant to start taking a drug that seems to have quite nasty side effects, and that I may have to take forever ( I am 57). I don't want to be ungrateful for all the effort that went into getting the diagnosis, but I wasn't expecting such a rapid treatment plan. I thought perhaps they might wait 3 months and measure the progression?

Anyone else held back on the drugs for a while, or tried some more natural remedies?

Thanks

[Deleted User]

Hi Creaking,

It’s great to meet you, welcome to the forum, please make it your forum too and ask whatever you need to make sure you understand what’s going on and what to do about it.

A new diagnosis of rheumatoid arthritis is always a big thing, I’m not sure you got the leaflet about your condition from your doctor so here it is

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

Inflammatory arthritis is all about an overactive immune system attacking your own body, so the remedy is about damping down your immune system so it can’t do that. That’s attacking isn’t going to change, so even if your pain is low your immune system is still doing damage. Once done the damage can’t be repaired so you need to take drugs to stop it regardless. Your pain/mobility now is influenced by the steroid jab, it’s masking your condition but not curing it.

These are powerful meds, but you will take just a tiny dose and you will have regular blood tests to make sure you are doing well, there’s no point waiting as you will get damage of one sort or another and you can do without that.

You have done brilliantly losing weight, changing diet and exercise and had it been osteoarthritis that would have delayed the progression of the disease for you. It’s still brilliant with your diagnosis of RA for all the reasons you’ve listed but now you have to do meds too. It looks like you did all 3 of your lifestyle changes so you realised that just losing weight alone though good, wasn’t going to be enough, now you just need to add in an extra change to allow for a changed diagnosis.

Keep talking - we know how hard it is to get your head round this

Take care

Yvonne x

dreamdaisy

Hello, it's nice to meet you and I am sorry you have had to find us. I saw your post on Say Hello so thought I would kill two birds with one stone.

I won't bore you with my story because it is no relevance to either of us. I will say that, having begun back in 1997 and not being given any meds until 2002, I know I missed one of the biggest arthritis buses around, due entirely to GP ignorance (I was finally referred to the wrong hospital department by the physios at the local football club but at least they got the ball rolling. Ha-ha.) I was initially refused by rheumatology but then accurately diagnosed in 2006 with psoriatic arthritis (PsA) which changed nothing meds-wise. Osteoarthritis was diagnosed in 2011 by a better GP, I have no idea how long that had been hiding behind the skirts of the PsA but again it changed nothing, it merely explained the different dross that was happening. Although I have no proof I am positive that, if I had begun the arthritis later when GPs were better informed, and as a result the DMARDs sooner, I would not be in the pickle I am now. It is a case of mind over matter, I might mind but that doesn't matter.

I have had no trouble with methotrexate, OK the tablet form caused a rash on my forearms but after being born with severe eczema that was no big deal (it upset my rheumatologist far more than me) but all the injected form has done is make me feel extra tired every now and again and maybe thinned my hair. Those who are doing well on meth naturally assume every one else is and why wouldn't they? During the ignorant years I tried homeopathy, diet, acupuncture, magnets (yup, still ashamed) and got precisely nowhere because that nonsense is for the worried well. I suspect you have read up on the supposed efficacy of turmeric, ginger and beetroot, junk aimed at those with OA: all the folk remedies are because it is the most common form of arthritis.

Right, this has stirred unpleasant memories so I'm off to change my focus. DD

Creaking

Hi Yvonne,

Thanks for your reply - it's really helpful. I have seen the leaflet thanks ( all the leaflets they gave me at the clinic were Arthritis Care ones, which I was impressed with!) I didn't actually have the steroid job - I didn't really understand why the Dr wanted to give me it when I'm not in that much pain right now, so I politely refused it.

I would still like to understand more about how the disease progresses - is it over months, or years? If I don't take the meds, how much long term damage will I be doing? Now that I've got a diagnosis, I really want to find out much more about what happens next.

I can see there are some really great topics on here that will help me, so am going to do lots of reading and asking questions for a while!

Hi Creaking,

It’s great to meet you, welcome to the forum, please make it your forum too and ask whatever you need to make sure you understand what’s going on and what to do about it.

A new diagnosis of rheumatoid arthritis is always a big thing, I’m not sure you got the leaflet about your condition from your doctor so here it is

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

Inflammatory arthritis is all about an overactive immune system attacking your own body, so the remedy is about damping down your immune system so it can’t do that. That’s attacking isn’t going to change, so even if your pain is low your immune system is still doing damage. Once done the damage can’t be repaired so you need to take drugs to stop it regardless. Your pain/mobility now is influenced by the steroid jab, it’s masking your condition but not curing it.

These are powerful meds, but you will take just a tiny dose and you will have regular blood tests to make sure you are doing well, there’s no point waiting as you will get damage of one sort or another and you can do without that.

You have done brilliantly losing weight, changing diet and exercise and had it been osteoarthritis that would have delayed the progression of the disease for you. It’s still brilliant with your diagnosis of RA for all the reasons you’ve listed but now you have to do meds too. It looks like you did all 3 of your lifestyle changes so you realised that just losing weight alone though good, wasn’t going to be enough, now you just need to add in an extra change to allow for a changed diagnosis.

Keep talking - we know how hard it is to get your head round this

Take care

Yvonne x

stickywicket

Hi creaking. Please excuse a brief reply. I'm on my tablet and my fingers don't cope well with it.

No-one can predict how quickly anyone's disease will progress only that it will progress much more quickly without DMARDS. We are all different. Some have a more aggressive disease than others. I don't think my RA is particularly aggressive but, when I was diagnosed, at 15, there were no modern DMARDS on offer. By 35 I had it in virtually every joint apart from the knee replacements and OA had also set in once the synovial fluid was gone.

For this reason I emphasise the need for meds. Methotrexate and hydroxychloroquine made a big difference to me once I got them. Forget the potions and fads. They won't depress the overactive immune system which is what we need.