I take six Methotrexate tablets every Thursday morning. I was weaned off the magical steroids after about seven months into the disease. That was in Summer 2021.
My condition appears to be stable. I have very few serious pains, and so far seem to have avoided the flares for which RA is ntorious RA though I suspect, and fear that may not continue, However, there are occasional intimations of something to come.
I lead a fairly active, though much diminished life. Indeed, because of my incurable and, I still fear, progressive RA, I am i the process of selling my boat.
However, compared to many of those who post here, I have very little useful contact with medical professionals focused on RA. I have no sense of a 'team'. The specialist first concerned was very supportive, but since the Methotrexate was established I have had very little contact. He seemed satisfied that it was working, whch seems to be correct.
My GP seems to be very little involved to anything to do with the RA. I get the occasional 10 minute appointment for other stuff and would be admonished if I tried to raise the issue of RA.
So yes, the Methotrexate seems to work. I am grateful for that, but otherwise somewhat pissed off by the disease that has very much diminished my life.
I hope this helps.
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Colaba
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Join the club Colaba- NOBODY here wants to belong to the Rotten RA Club!
But you are one of the more fortunate …,being diagnosed late in life. Imagine being diagnosed in your 20’s or even earlier …now that is a life sentence…….think about what you would have missed in your life, many on here have had to deal with that.
If your medication is working & you don’t have any unresolved RA symptoms, what is it you feel you need? The average GP has less knowledge of RA than most of us, so as you have found, will not be very helpful if you need RA advice.
The people you read about who talk of a “rheumy team” will be the unfortunate few who have not yet reached your situation & sadly are still searching for a drug that will 99% control their RA…& are often dealing with other Auto Immune conditions as well.
It took me 16 years to find that drug to 99% control my RA….so you are indeed one of the fortunate few who found your drug early after diagnosis.
You are very lucky that Mtx suits you…..so these days, the way RA treatment usually works is if your Dmard is working well, there is no need for regular visits to your rheumatologist….it will be presumed if your blood tests are satisfactory, you are doing OK. As you must know, the nhs is on its knees,& rheumatology is particularly hardly hit….lso regular check ups are a rarity l
If you do have any RA related questions…your best bet is to call your hospital Rheumatology department, & ask to speak to one of the Rheumatology nurses. They will usually be in touch at intervals to check your progress…but these days, even that cannot be relied upon.
Hope that clears up a few of your probs…….if you feel you do need more support, you could always see a rheumatologist privately…..you would then be able to arrange regular check ups……maybe that would help?
Thanks Aged Crone, I certainly take your points. I do not spend much time examining either my navel or much to do with the disease. Rather, I try to get on with as much as I can. I am pleased to be so old and still quite active. I have never generally washed my dirty linen in public. More in about five interventions to this site than ever before. I should shut up and go away. I am a comparatively lucky old bugger.
Yep….you certainly are …as am I & anyone over 80 …..we have proved we can put up with most things & still enjoy life.
Don’t go away - cheer up &, don’t let RA get you down….there are a lot worse things we could succumb to.
Did you see in the paper yesterday …..that poor man who got polio back in the 1950s and has lived in an iron lung ALL HIS LIFE…now that would get me down, but it didn’t get him down. …he qualified as a lawyer and lived as good life as he could. ..helping others.
Hi there Colaba, in the absence of regular contact with RA focussed medical professionals, if you need any advice, the lovely ladies on the NRAS helpline 0800 2987650 are available with advice, just for a chat or as a great sounding board, Monday - Friday 9.30am-4.30pm, please give them a call - they'd love to hear from you. Good luck
I phoned yesterday in desperation and I have never met such informed, humane, efficient kindness . She helped and listened to me , such a very rare thing to find in the rheumatology world!!
like Aged Crone i too have been battling RA for 22 years diagnosed on my late 30 s i have been on MTX since the start and the tablet form was not tolerated very well by my digestive system after about 8 years the MTX became available in injection form to which i was switched thereby bypassing my digestive system. however this was not sufficient to drive the RA into remission so i volunteered to take part in what was to become many different drugs trials just so i would have access to other medications with were not supplied by the NHS
some worked but after months of a fairly good life with RA for whatever reason they stopped working or became ineffective. In some cases as the rial failed to reach expectations the drug company withdrew them. then it was back to being crippled with pain.
i have lost count now of exactly how many drugs and medications i have been on but i can say at times it has been soul destroying, and at times of allergic reaction downright dangerous to my life. now i am on something called JAK inhibitor and MTX which for now and for 3 years have helped very well. over the years though the swollen and inflamed joints have now become damaged and have developed OA resulting in full knee replacement and severe OA in shoulders hip wrist i could go on but anyone reading already knows where i am going with it.
The upshot is every treatment you have it has a trade off which can and does cause other problems you need to learn with it's sometimes a choice of what you need and what you can endure.
I was starting this reply to ask if you have never been offered any counselling or asked for any from your GP or ring the RA department and ask them to recommend a support group you can access,Either face 2 face or online both of which i have found very helpful at times over the last 20 years. just so you know you are not in this alone and you are entitled to have the feelings you do about RA, but 22 years later RA is what has happened to me it is not what i am and it has never completely ruled my life but, it does have to be considered in everything i do. and like AgedCrone says nobody wants to belong to the Rotten RA club
so Colaba Aged Crone,Beechwood 1 , and Luludean good luck with your fight as it is indeed a fight.
Great that 15mg Methotrexate is working for you. Do you take folic acid to combat any sicky feelings? Do you take any other meds with the 6 MTX? Hope all goes well.
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