That is all I've been taking. 8 pills per week on Friday night. Up until the last few months, it worked really well, and I really had no side effects except for some minor nausea on Saturday mornings. (Oh, and like Milo's, I take fish oil, Vit. D, and Folic Acid...but no other prescription meds.)
tb said:
glad to hear from someone who it helped. was mtx the only drug you were taking? I just want to be able to function for work, at least a little while longer.
Thanks, Dr. Marc and PinkCamoChick.
Just took my first does of mtx, it's been an hour and a half, so far no nausea, fingers crossed. My knees and legs have been screwed up for months, just want to walk without pain.
Hi there I havenāt posted on here for a while as just recently I started receiving email alerts,I currently take mtx was up at 12.5mg per week through injection but totally came of this over the summer as it made me feel horrendous,am now back on oral tablet but just on a limited amount donāt know if this is the norm but my appointments with the rumy seem to be getting more and more apart as my last appointment was cancelled once I got to hospital and now donāt have another one for 6 months???,asking for a steroid injection u would think the nurses pay for it thereself I have been refused once or twice
My rheumy prescribed leucovorin to help with the side effects of MTX. Also, I injected MTX, with small amounts building up to the prescribed amount so my body could get use to it without side effects - it worked!
Hello there @Weslo1.
Appointments about 6 months apart is quite normal in the UK once the disease is deemed to be under control. There is a shortage of rheumatologists, which doesnāt help.
However I would have something to say if I arrived for an appointment, was turned away and told that Iād have to wait another 6 months! I reckon you should get back to them laying it all on the line and requesting an appointment much more quickly. If you have concerns about medication then this is something that needs to be considered.
As for steroid injections, the ones in the bum anyway, my understanding is that they are limited to 2 - 3 per year. I accept ācomputer says noā as long as Iām given a clear and convincing explanation as to why.
One more thought - are you drinking plenty of water daily to help with tolerance of Mtx? Medics never seem to mention that but word on here is that itās essential.
Hi there yes I drink about 4 litres per day as I try to attend gym when I can and am currently trying to build muscle and lean out but can sometimes be restricted through fatigue or tiredness which just appears randomly,is there any research on the subject as I try and keep fit and healthy to combat the psa
I donāt know that there is any research specifically about PsA fatigue ā¦ good question though!
I would love it if, just once, a doctor asked me about fatigue, as if it was a thing, as if it was common with PsA, as if it was a real problem. Because as we all know, all of the above apply!
Hey there, as Sybil said, appointments should only be getting further apart once things are under control and stable. It sounds like thatās not how you are feeling - I think itās worth a go to make sure they didnāt misunderstand you (Iāve always been a minimiser), then if they still arenāt paying attention, some serious āshoutingā which, for me being a minimiser, is just a serious eyeball and stating clearly that that Iām not functional enough with my current medication to pay taxes!! 
Haha yes you are right,I would be happy to get by with a few steroid injections per year with a limited dose of mtx as I donāt want to be back on a higher dosage for a long space of time and doc hasnāt mentioned biological drugs as I know they cost a lot more money
Are you in the UK? If so, they donāt cost YOU a lot more money, just the NHS.
Iām in Australia, which basically works the same way - which was why the reference to the Taxes!
Seriously, I could barely function without biologics, which would have meant the government paying me to live because I couldnāt hold down a job, and having a dodgy quality of life, whereas with biologics, the government pays no social security to me, and the government subsidy for the medication is around $10k a year less than my my tax bill. Savings to the government in the difference, around 45k per year. Do not feel guilty for asking, if thatās the decision you and your trusted doc come to.
I have encountered rheumys who appeared to be delaying biologic therapy because of cost. Biologics donāt come out of the hospitalās budget, they are funded by the CCGs. And I am pretty sure that some CCGs put pressure on some hospitals to limit the number of patients on biologics.
What Jen says about cost-effectiveness makes perfect sense. I think it is quite possible that I would be disabled to a certain extent had I not started biologics when I did. And disability would be costly for me and increasingly costly for the state / local authority.
However you are unlikely to encounter any joined-up thinking re. spending now to make you a less expensive citizen later on.
So, as all of the above goes around in a circle, my view is just ask for biologics!! Seriously, these are the drugs that are most likely to restore some sort of normality, they are the drugs that are most likely to prevent joints falling to pieces. Annoying and unfair as it is, the squeaky door gets the most oil. Patients who are too meek and mild may well take the brunt of the cost-cutting. Get squeaking!
Meant to say yes I am in the uk and up until last month I wasnāt having much pain but the weather here in Scotland can be brutal at times so I am always well wrapped up to go to work as I am a gas engineer and job can be very physical at times,one of the good points about the hospital I attend is I have an emergency number I can phone if flare ups start again and can usually get some sort of pain relief from the nurses on hand.
I will definitely be mentioning the biological drugs again to see if this can be moved forward
Iām in the UK too and thankfully on biologics but since last July. And (besides only just this week having back spasms unrelated to PsA) biologics have just transformed my capacity and made me feel for the first time, I might be slightly ahead of this disease finally. And thatās where I want to stay if at all possible.
The reason Iāve back spasms this week is that for the first time in 3 years since this stupid disease hit me, I felt perfectly capable of doing some gardening last weekend. Stupid me as, whilst I am capable, this body of mine (having not done any gardening for 3 years ) protested loudly, rather rationally at me spending around two hours in a semi stooped position pruning roses with far too much enthusiam.
The thing is if I had only treated my PsA symptoms with pain relief and steroids for the last 3 years (and I did that only, for the first year), I doubt I would still be working full time, or indeed capable of just walking around my garden, let alone hiking away with my dog for pretty much as long as I want.
And there are other DMARDS than just mxt to take too. Me and mxt hated one another wholeheartedly. Me and sulfasalazine got along pretty good for a while until the progression of my disease took over and rendered it pointless. Me and a biologic called Benepali (a biosimilar to Enbrel, so far cheaper cost wise) are presently madly in love and having a great time.
Remember this disease can be very ābusyā in the background, getting ahead of it and staying ahead of it is key. Itās caused by your abnormal immune system and if you arenāt on meds aimed at making your immune system behave better which neither painkillers or steroids can do, but DMARDs and biologics can, youāre not effectively kicking it in the goolies hard enough, so it just behaves better.
And remember NICE wants two DMARDs to have failed before it permits the funding of biologics - think thatās the same in Scotland too but not sure. So there is a process to follow.
And often one needs improve on oneās āsqueakingā ability. I tend to hope mine is now at that level where the recipient drops everything, dashes to B&Q to buy the WD40 in order to shut me as fast possible as they canāt stand it a moment longer. Thankfully presently Iāve no need of squeaking at all other than groaning with back spasms and then sighing in relief as I ice it!
When I went to collect my Mtx prescription yesterday, the pharmacist took me into a little room to see if my details needed updating.
Mtx certainly featured.
Pharmacist: āDo you get any side effects from Mtx?ā
Me: āNo.ā
P: āIt does cause side effects.ā
Me: āI know it can but I donāt have any.ā
P: āIāll give you the booklet that tells you all about side effects.ā
Me: āIāve read it about 20 times.ā
P: āYou may be getting side effects.ā
Me: āI DO NOT GET SIDE EFFECTS!ā
P: āIf you do think youāre getting any, let us know straight away.ā
And so on & so forth!!
What the hell was that about? Why was he so keen for me to get side effects?? Iāve been taking Mtx for nearly 7 years so I should know whatās what by now. I nearly invented some side effects just to get out of there!
Oh dear, that smells. Like one of my farts when I canāt take my Cimzia and my IBD flares upā¦
Here it was antibiotics with the terrible side effectsā¦ for the last three years or so any antibiotic script came with a hard sell - and I mean harder than being stuck next to a Mormon on a bus for 3 hours - for probiotics.
Obviously the probiotics companies throw much nicer conferences and have a larger profit margin.
Iām an absolute believer in the gut biome having an enormous impact on health, and that antibiotics can be a terrible disruptor, but, I also read the science on the probiotic supplements, so I was less than impressed by the exploitative hard sell I was getting from pharmacy assistants (and on one occasion, when I kept refusing, they waved the pharmacist over to try to add credibility and push the supplements a bit more).
They may have been entirely well-intentioned, but the near-religious ferver was somewhat unnerving.
So, I dare you to put your educated cynic on (cause I know you can 
), and next time you go for a script, find out what exactly the pharmacist was going to suggest?
Didnāt occur to me that he would have suggested anything ā¦ like what? There isnāt really anything for Mtx issues is there?? Maybe he was hoping to push some supplement but usually seems so professional. I dunno.
Your opening sentences made me smile, I always knew you were a proper lady.
Gosh it looks like Iām lucky my GP dispenses for me. Those pharmacists are far too busy to take me into any room. Actually the idea of being taken into a room by anyone on a shop floor would give me the heebie jeebiesā¦
Has anyone who has taken 20mg weekly injections of mtx experienced hair loss?
Did you ever experience hair loss from mtx? Theyāve got me on 20mg injections weekly. Thx
Hi @wisc72, good to hear from you! Welcome!
Some say they experience hair loss from Mtx, though Iāve also heard folk report that although it thinned initially, it then went on to grow like a weed. Iāve had hair loss as a result of stopping Mtx but so far Iāve not found anyone else who has had the same experience.
You might like to check out past posts on this subject ā¦ click on the magnifying glass icon (near your avatar on the top right of the page) and youāll be able to do a search.