METHOTREXATE - NEW MEDICATION: Hiya, my Rhem Dr has... - NRAS

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METHOTREXATE - NEW MEDICATION

InnerBeauty profile image
15 Replies

Hiya, my Rhem Dr has started me on 15mg Methotrexate, once a week, today, in addition to my other drug of Hydroxychloroquine 400mg daily. The Hydroxychloroquine has not made much difference on it's own, so I'm hoping Metho will.

I must admit, I was surprised she put me on this so soon. I'm assured it's a low dose and I have to have blood tests every 2 weeks for a while, just to see if my body can cope with this new drug.

My health seems to be in peaks of good and bad, never know what each day will be like. However, when I have a bad day I feel defeated and it's reminder of how fragile we can be. It's exactly a year to the month I was referred for further investigation for possible arthritis in my foot. I realised this month that the pain was coming back and had progressed to both hips. I've come to the conclusion that it's weather related, and I'll probably feel like this more and more as the weather progresses to get worse.

I'm missing my exercise now, I'm sure I've lost some muscle too, so need to get back in the swing of keep fit and moving my joints. If i don't, I'm sure I'll just cease up.

Looking at my situation another way, at least I'm not being ignored and I'm receiving some treatment to stop the disease from taking over my body. This I am grateful for :-)

Hope all is well with you!!!

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15 Replies
dtech profile image
dtech

Quite honestly it's good your rheumy is adding to your drugs early and you got early diagnosis. So many on this site will tell you that they got fobbed off for months by Drs before treatment started causing irreparable damage and making it harder for drugs to get the RA under control. when I first got diagnosed six years ago they threw everything at it. Methotrexate, sulfasalzine, plaquinel (chloroquinine) and naproxen as well as folic acid to reduce side affects. I am now in remission. My rheumy said (last month at my yearly check up) I was one of the lucky ones that was able to tolerate all these drugs and I accept that. So over the years I was able to reduce my drug intake. So now I am just on sulfasalzine and 15mg methotrexate. So let's hope the mtx works and you can turn things around. I know how frustrating it is to go from reasonable fitness to having to stop just about everything. But it can be turned around. Sure you probably won't be able to do all the things you used to, I do miss playing squash! But you adapt. So good luck. And keep battling.

alioli58 profile image
alioli58 in reply todtech

@dtech what a wonderful story I'm so pleased for you that they got your RA under control.

I am in the early stages & am hoping they can help me sooner to stop the progression. Blood test confirmed about 18 months ago but no treatment offered then. Annoying!!! but new GP practice are prepared to help with more blood tests & X Ray tomorrow. Then hopefully a Rheumatologist to decide how to treat me.

Thank you all for your comments on here. Really interesting stuff & I am learning loads about drugs & aids to help us etc.

Great site. 😃 🌹 😉

flaminokie04 profile image
flaminokie04 in reply toalioli58

So nice to see some positive things being said. I was diagnosed about 4 months ago abut have suffered about 15 years of not know what was wrong with me. I'm now on the mTX lowest dose.Most of the time i think it isn't working but I know it's just a matter of finding the right concoction of drugs.. Remission would be so awesome!! I could get back to working out.

dtech profile image
dtech in reply toalioli58

Glad I could help with my reply@alioli. Hopefully the GP should refer you to a hospital rheumatologist I hope they are a good one who listens and throws everything at it to get it sorted. All the best.

nomoreheels profile image
nomoreheels

Same with me, same doses too. For some reason double therapy didn't work so the HCQ was dropped & it then allowed the MTX to romp away. I wasn't diagnosed in the UK but MTX is generally the first DMARD tried here though possibly you were diagnosed soon after the first signs & it wasn't necessary to hit it quite as hard? Each Rheumy has their reasons & preferences. This was the case with me, I'd been given my diagnosis of seropositive RD & was on my meds within a month of first seeing my GP with painful, swollen feet & doing a pretty good impression of a duck with flippers.

I've needed increases of MTX this year & each time I've had fortnightly blood tests for 6 weeks & as all was ok I returned to monthly bloods. I seem to have settled eventually on 20mg though I did struggle a bit this time. It's my 6th year on it & since taking 5mg folic acid daily (except the day I inject) I've had few problems.

Hopefully once you become more controlled you'll have more good days & things will only seem bad on the days you're not feeling brilliant. It's all about balance. Damp is my enemy, my joints are having a go just now but they'll settle. Humidity affects me as well.

I'd ask your Rheumy or nurse if they could either recommended some exercises for you to do or ask to be referred to physio for some joint friendly ones you can do at home. I've been given some that have helped strengthen my ankles & my calf muscles have benefited too. I've not been able to do my arm ones recently due shoulder & neck problems & I've definitely less definition in my upper arm.

Your last paragraph, keep that in mind on the bad days. :)

Martinilady profile image
Martinilady

Your story mirrors mine exactly only I had to stop MTX this last 8 weeks because Ive had my Gall Bladder removed. So once Im on the mend I will start up again + the Folic Acid. X

Mandem profile image
Mandem

Hi, I was on hydroxi at first but nothing changed and then went on to metho. It gave me an upset tummy so went on to weekly injections. Have been on both for over a year and just get occasional pain but nothing worth bothering about. Metho a good success rate.

oldtimer profile image
oldtimer

It is much better for your long term joint protection if you are treated energetically from the start. Methotrexate is taken as a standard Disease Modifying Anti Arthritis Drug (DMARD) and most people get on with it OK - don't be put off by those of us who have posted on here because we have had problems with it.

Have you looked at the NRAS site for some gentle exercises that you can do at home to get those joints moving as well?

alioli58 profile image
alioli58

The damp weather definitely sets my RA off.

😱

snis profile image
snis

Hope your feeling a lot better today.I have good days and bad days too.I was on Methotrexate for 4 years it helped me walk again.I then took myself off them and am coping .You cannot win either way ,the meds are bad for us and if we don't take the meds that's bad too.I am just getting over having a Baker's cyst behind my knee ,so painful,this is the worst pain ever.I keep an eye on my CRP level every 2 months to check my inflammation level if it ever goes over 50 will then go back on the meds.For now I struggle daily with pain.Hope your all well today .

I believe the weather has an affect too.I miss my long walks with my dog.

Jora profile image
Jora

Of course, none of us enjoy having such a disease, but given that you do have RA, try and think of the treatment as an upgrade! I'm pleased that you are being well cared for.

Good luck!

J

MickeyJoints profile image
MickeyJoints

I started 15mg sub-cut yesterday after trying oral doses of 10mg. I got irritating and uncomfortable side effects from the oral so I'm hoping the sub-cut will be better tolerated. With one day done, I feel so much better than with the oral route. My tongue is feeling raw, more so than usual and if that's the worst of it, that's fine.

I'm still taking the HCQ twice a day and while that did not appear to have any effect, I understand they might potentiate each other so happy to continue with both. As nomoreheels says, they approach the condition more aggressively to get it under control to limit joint damage. I think that's a good idea.

Fingers crossed (metaphorically!) that I have a good response to it as others report. good luck with it!

MJ

dtech profile image
dtech

It is also interesting when you say your RA is weather affected. Mine is too. I'm a terrific barometer lol, I can usually tell a couple of days before rain that the pressure is dropping due to ache in my shoulders where my RA first hit. I know there is absolutely no scientific proof of RA being affected by weather and lots of people's isn't but can only speak as you find. maybe it's phsycological that we feel better in warm sunny weather and worse when it's miserable, wet and windy (like here in Hertfordshire at the minute!)

nomoreheels profile image
nomoreheels in reply todtech

It was something friends & relatives couldn't grasp when we returned to the UK from living in a sunny country. I lost count how many times I was asked surely your joints are better in the heat? Well no actually, humidity is as bad as dampness for me, so really it was no different to living here from that point of view. It rains there too & the older houses in particular are built to keep the sun out so are difficult to keep warm in the winter. It does seem as though heat would be better for us but as you say there's no scientific proof. That said the sunshine definitely lifts your mood which may have some bearing. :)

mags8 profile image
mags8

Methotrexate certainly does work wonders for inflammatory arthritis pain but it also has it's issues and can affect the liver functions so blood tests are so important. My mother had a hard time getting the GP to recognise the symptoms when her liver could not take the drug anymore, retching without actually being sick and after a week of this I took her straight to A & E, where she was admitted and given the antidote. She had to then be put onto another drug for a period (which did not work so well) and after approx 12 months they were able to reintroduce a combination of MT and this drug. After 3 further years she was repatriated with MT. That was over 10 years ago and seems to be without recurrence so far.

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