Starting back on methotrexate after a years break and found myself counting and calculating and counting again convinced the pharmacist hadn't given me enough tablets to do my planned weekly increasing dose.
I then realised, methotrexate is once weekly and not daily.
No wonder I seemed so short of pills. DOH. 
YAY GG! 😆👍🍀😘💃
Glad you didn't take them daily Georgie - could have killed you!😱 X
Blame it on brain fog! I would have liked to be a fly on the wall whilst you were undoubtedly cursing, followed by the 'face' of realisation! I hope you get on ok with them. 👍
Seriously Rowan, I had pills and boxes spread all over my worktop doing calculations I haven't done since secondary school. And yes, I was doing some serious cursing too.
Been there, done that! 😂😂😂😂
I'm sure that when I first joined, there was a post from someone who had been taking it daily....we are only human after all. Hope it works! x
I think the reason it's only taken weekly is because it takes another six days for the body to recover. My GP told me they are very strict with Methotrexate dispensing because it is potentially lethal to overdose by taking daily. This certainly put the frighteners on me, as a bit of a numbers dipstick, in the days when I used to take it! Good job I'm not on it just now with my propensity to miscalculate!
You CAN take it daily - but at a very low dose. Studies have shown that giving a small dose daily didn't work any better than a single dose once a week - and the side effects were less.
Apparently it has been a problem and the pharmaceutical associations were plugging putting LARGE notices on the dispensed packs so patients were absolutely clear how often to take it - because, as you so rightly say, it is potentially lethal.
Yes Pro, I'd have thought with something so toxic they would've put larger notices on the labelling. To be honest, I've always thought if you listen to your doctor or pharmacist then you cant go wrong but it just shows how wrong I was and how easy it is. Scary.
Yes - I was never quite clear what a very low dose actually is though? I only ever made it up to 17.5 injectable - which apparently is equivalent in strength to 25mg of the tablets. Felt and seemed like a lot to me as was also taking Hydroxy - but a friend's GP daughter was rather contemptuous when my evident sickness was reported to her by her mother - "hah my chemo patients take much, much higher doses!". Hmmm perhaps she should try it if she thought i was just being a wimp then?! Glad she wasn't my GP! X
I made it up to 25mg tablets with pred and hydroxy and to be fair it did seem to help at first but later, it didn't seem to be doing very much at all. When I ended up with laryngitis and a chest infection and had no white cells to fight it with, it was stopped.
These immunesuppresants can knock us for six eh? For me it was frequently high LFTs that worried my GPs with MTX. But they aren't low with Myco either and I'm still struggling to throw off a simple cold that seems to have gone for my sinuses despite antibiotics🙄🙃x
Did you rheumatologist stopped right away or was your dose slowly drop.?
It was stopped immediately Alde. With the laryngitis it wasn't seen as too much of a problem, but when I got the chest infection as well that's when it was stopped right away.
2.5mg seemed to be the dose people have used, 17.5mg per week.
I doubt the GP daughter has ever taken it herself. My husband's enduring memory of his chemotherapy (other than cisplatin causing permanent hearing loss) is of how awful he felt on the methotrexate days - uncontrollable shivering plus the flu feeling - and he is adamant he'd support me not taking it if anyone ever tried to make me try it for PMR.
Glad she's not my GP - she must be an utter delight...
The cheek of it !! What a wonderful bedside manner she must have.
Sorry to butt in, but ... that's a shocking thing for the GP daughter to say - of course you can feel very, very ill on 'low dose' methotrexate.
The thing is that the situations aren't the same. While chemo is surely a dreadful experience, presumably chemo patients aren't trying to run 'normal' lives while they're undergoing therapy - a lot of us are. I take 25mg via Metoject for myositis, and in the past I've had some horrible experiences on it - unpredictable and seemingly random. Try explaining that to your boss, or customers whom you've let down (again) at the last minute.
While it's incredibly disappointing that any GP should say such a thing, it must come down to lack of appropriate education. My understanding is that GPs aren't allowed to prescribe immunosuppressants (mine issues my repeats - reluctantly -under a shared care agreement with my hospital), so I suppose it isn't surprising that there's a lack of understanding. I suspect there's an element of 'not my prescription, not my problem'.
For me, MTX works OK (with a bit of help from a small dose of MMF). The side effects seem to have settled now, aside from a bit of extra tiredness on injection days, and my bloods are pretty good on it, too, so I've persisted. I moved from tablets to injection, and (as someone else said) this really simplifies the dosing - I can recommend it. It's far safer than counting out tablets, and self-injection via the pen is easy - not nearly as bad as it sounds.
I'm not a fan of it Twitchy I must admit but rheumy wants me to try again so who am I to argue.
I have post it notes all over the place and a big calendar on my fridge with med days and doses so hopefully that should reduce my tendency to forget or double up or take the wrong dose.
Well I did give it two years on pills for six months and injections for 18 months and it did work on my synovitis well - it's never come back at least. I was off it and back on it three times over a three year period though and when asked at last rheumy apt if I would try it again i refused. Much happier on Myco but not sure it's doing as much tbh! X
Everyone seems to be on Myco, perhaps I should ask to try it. There was talk about me trying Aza but for some reason I've ended up back on mtx. Guess they're all pretty similar though.
Not all the same for me anyway. MTX made me feel very sick and it didn't matter what dose or how it was administered. Sulfasalazine and Hydroxy gave me anaphylaxis and Aza gave me Pancreatitis (nearly polished me off!). Myco doesn't give me any side effects at all and I think it is generally very well tolerated compared to the others. But maybe not as effective if you have inflammatory arthritis because it isn't used for RA or PsA at all. And apparently it's more expensive than the others although not as dear as biologics. Don't know how much Myco is though. My Metoject (MTX)was about £75 per weekly injection I think? X
Oh dear, Whisper, I hope they didn't have too many problems by doing that. Just goes to show how easy it could be to do some real harm with the drugs we have to take. X
Thank goodness you realised!!!! X
Quite scary, and I'm so glad you were doing your calculations, and noticed. Glad I'm not the only one who scrabbles through my meds budget to check it will "last" x
Oh no, you are definitely not alone Lupi. X
I was on methotrexate, but it was found to not be helping so I was switched to another drug.
Methotrexate was used as a chemotherapy drug for liver cancer and leukaemia if I remember correctly, albeit at a much higher dose than we lupies would take.
Another confusing thing I found was that there are two different doses of tablets which look similar and rather annoyingly, the chemist dispensed both at the same time. I am a retired psychiatric nurse so very used to giving out medication, so if I found it confusing at times, it must be even harder for a lay person. Of course, the brain fog didn't help!
I also noticed that, when it was dispensed by the hospital pharmacy, it had a warning about handling the medicine due to it's toxicity, this is because it can be absorbed through the skin however, my local pharmacy put no such warning on the box.
Mine just came in a small brown bottle with no warnings - they just checked I'd been given the Arthritis Research blurb first. Rather shocking when you think about it? Metoject came with many more warnings - colour coded for dosage, antiseptic wipe and much less likely to OD on!
Absorbed through the skin Tonk? Good grief. That is quite scary.
I have two different doses, 10mg and 2.5mg and the blister packaging is identical so easy to make a mistake in a hurry.
Funny, but I don't seem to remember having any issues with all this last time I took it so perhaps it's just my memory or as you say, the dreaded brain fog.
Yes, that's the problem. When my old dose was increased to 25mg, the chemist gave me 10mg and 2.5mg tablets and I had to take two of each. The BNF guidelines used to state that only one tablet type should be dispensed so, on 25mg, I should have been give 10 x 2.5mg tablets and not 2 x 10mg and 2 x 10mg. The BNF may well still say the same, I don't know because since retirement, I don't buy the BNF, because it is a tad expensive and it is often updated.
Tonk do you have any knowledge of the relative costs of DMARDS at all? It was saying earlier that my optician read up about Mycophenolate and said it's not used very often compared to MTX -probably because for cost reasons. Wonder if this sounds right?
To be honest I don't. I retired twelve years ago now and so I have very little knowledge which is current. I suspect your optician is correct though, these days, in my opinion, too many decisions and policies are made on a cost basis, rather than on a clinical need basis......Sorry I can't be of more help.
You may find that your local pharmacist could give you the information you want, especially if you told him that you needed it to write to your MP for example
Thanks Tonk. What a shame I do agree. 💰🙄🙃
I have just found an old BNF buried in my study. The book is dated September 1999, so it is well and truly out of date.
Mycophenolate is listed as a treatment for renal and cardiac transplant patients who have acute rejection post transplant. At that time, it does not appear that it was used as a treatment for lupus or other autoimmune diseases however, I have done a little research and it appears it is starting to be used for the treatment of SLE and other autoimmune diseases more often nowadays.
For your information, 100 tablets of Mycophenolate are listed in the aforementioned BNF at a nett cost of £118-00p to the NHS.
In the same BNF, 100 tablets of 2.5mg Methotrexate are listed at a nett cost of £14-19p to the NHS.
I would conclude that it is looking more likely that cost is the major factor in deciding whether to prescribe it or not.
I hope this helps.
Very interesting re comparative costs - although as you say that was 18 years ago so very much out of date. But it does confirm which is probably the most expensive DMARD and I imagine therefore that my optician is right!
Hi, Twitchy.
My husband has just looked in his March 2016 copy of BNF and Myco is £82.00 for 50 tablets, to NHS. He says it looks like treatment of autoimmune disease is off-licence.
Tess
Thanks Tess. Yes I knew it was used off licence as a DMARD. But then most of these drugs have other licensed roles including Methotrexate and Hydroxichloraquine. I had to fail four other disease modifying antirheumatic drugs in order to qualify so I'm sticking with it like glue for now!
I can see why the rheumy registrar tried to tempt me back onto Methotrexate though although I think a month's worth of injections would be quite expensive too. But as I'm taking standard maintanence dose of 4 tablets Myco daily that's 112 tablets every 28 days which is about £170 a month I think (dreadful at maths!). You can understand why more people aren't offered it immediately - although it's become the gold standard treatment now for Scleroderma and Vasculitis now I believe?
Wow, you must have a really crappy Pharmacist. He should have alerted you to the dosage amounts and how often they were to be taken. He should be reported to the proper authorities for malpractice. With another type of drug he could have killed you although it is really should be the patients responsibility to double check the dosage. However, even in this day and age, there are still people out there who are unable to read properly.
Blood Test - High liver count
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What a time to be on steroids 😂
