METHOTREXATE – UPDATE

Well I have just taken my second dose of Methotrexate tablets, 15mg, and am hoping that I will be ok tomorrow. After my first dose last week I had two days of feeling spaced out, I was so tired and my head felt strange, not a headache, but I didn't feel right. Fortunately I had booked Friday off from work as a flexi day, thinking my knee was going to be drained too and I would need to rest up, There was no way I could have got to work feeling like that and would not have dared to drive. I know people have mentioned 'brain fog' so presume that was what I experienced. Hoping I can manage to get to work tomorrow and then enjoy the long weekend.

I got a letter today from the Hospital, having my knee drained on 15th May, so two more weeks to wait and also an appointment for 21st May but not sure who that is with, I am waiting for Physio to restart and to see Occupational Therapy.

Updated work with all that is happening and they are arranging another appointment with our Occupational Health so things are moving along.

I will remember to take my Folic Acid tomorrow and will let you know how it goes.

Hope you are all ok and pain free.

Best wishes, Sue

[dtech]

Good luck with the methotrexate. I've been taking it for four years now and got used to the brain fog. If I need my brain on a Saturday, as that's when I usually take it. I leave it till Sunday. Puzzled about you taking the folic the day after mtx? I was told to take mine two days before.

[Hidden in reply to dtech]

From what I have read on this site it seems to vary a lot. I was told to take 1 tablet the day after Methotrexate day, just one tablet each week. I also take Sulfasalazine.

[dtech in reply to Hidden]

Odd isn't it everyone is told different? I'm also on sulphasalazine. And I'll raise you two plaquinal tablets a day 😉

[Hidden]

How about Omeprazole, allergy tablets, beta blockers and co-codamol. lol.

[dtech]

Ok. I'll fold. You win.lol😂

[Hidden in reply to dtech]

Yeah! Off to bed now, have a good nights sleep.

[dtech]

And you. Good to have a laugh on here sometimes😉

[allanah]

Hi dtech, still as cheeky as ever !!

I'm only second attempt at mtx, last one was 4 yrs ago but I need it to help my new infusion work. So I have had three doses now, the first two weeks my joint pain felt much worse and ( unusually for me) I couldn't stop sleeping. This week it's improved I think!

On the folic acid debate I have my mtx Wednesday and folic acid Sunday ! hope it kicks in soon and the knee drainage goes well xx

[Jacki08]

Hi--- I've been taking mthx for 6 months -- now on 25 ml injections and I really find that drinking lots and lots of water help s with the side effects. I take folic acid 6 days a week. It was at least 9 weeks before I found much improvement in my symptoms but am really feeling the benefits now. Good luck Sue xx

[Hidden]

I have just been increased to 15mg mtx and lucky with no real ill effects. Also take sulph hydroxy and naproxen. My G.P put me on preds too to help with the swelling and stiffness in my fingers. Been on the mtx for 11 weeks now and getting desperate for it to work. Also I am afraid to fake my co codamol because of all these drugs I am taking. Just don't want to risk any side effects like tummy. Could really do with it though at work.

Has anyone been in this situation? Fed up of it now just want to go to my next appointment and say all well and back to normal. Hate whinging.

[nomoreheels in reply to Hidden]

You're not whinging, it's a major change in your life & there's a difference between whinging & asking for a little advice or off loading how frustrated we are when the meds don't seem to be doing much. We do differ in how quickly MTX takes to work. I was in a similar position when my Consultant added it to HCQ though in my case it didn't work but once he withdrew the HCQ it did! Sometimes it takes a bit of juggling to get the mix right I'm afraid but you'll get there. If you feel the pred isn't helping do let your team know if it's a way off your appointment, you may need an adjustment in dose.

Were you given a ppi, omeprazole or similar to take with your co-co's? If so they should protect your tum. Please don't be afraid to take whatever you were prescribed as directed, it will probably seem a lot but they're all part of your regime. Were you prescribed an NSAID to take as well? If so this will help ease the stiffness & inflammation in your hands.

I hope things start turning round but if they don't be assured your Rheumy will do his level best to help you.

[Hidden in reply to nomoreheels]

Thank you for your kind words and advice. Really appreciate it. Also interesting about it not working for you until hdroxy stopped. That makes me feel better. So anxious for it to work. I do take ppi with the naproxen.

Steroids worked great and I reduced them to 10mg . Last appointment two week ago was hoping to come off but the Nurse said I have synovitis still in my fingers. Beginning of this week started with more swelling stiffness etc. Now my back has started and can hardly walk. Have my next appointment a week on Tuesday.

You have helped a great deal thank you.

I am a bit impatient and want to get back to normal.

My two Westies Tottie and Keegan send woofs too.

Thank you

[nomoreheels in reply to Hidden]

Aw bless, my three send woofs to your two, you'll have to post a pic. Keegan! I had a signed photo of him in his No.7 shirt back in the day! I suppose a little over a week isn't much in the grand scheme of things except of course when you're struggling but it'll come & hopefully your Rheumy will be able to talk things through with you. I have problems when tapering off steroids so for the time being on a low maintenance dose, maybe you need them some time longer to help, did you notice the swelling & stiffness starting once you'd started tapering? I've recently had an increase in MTX as well, on 17.5mg now trying to get up to 20mg but have managed well on 15mg for quite some time along with my other meds, there is room for you to increase as well as long as your bloods are fine. I would be honest with your Rheumy, tell him how you're feeling & hopefully he'll be able to reassure you. Do you have any other issues with your hands, I notice you've mentioned tingling before, have you told your Rheumy about that? It may be helpful as tingling can be related to the median nerve being compressed by inflammation, early stage carpal tunnel syndrome. The pins & needles generally affect the thumb & then next two fingers but my ring finger was also affected by the time mine was diagnosed. The longer it's left the more symptoms you'll have if it is so when your Rheumy checks your hands do tell him about the tingling. It may not be CT but it's worth mentioning.

Let us know how you're getting on & have a nice bank holiday weekend. x

[Hidden in reply to nomoreheels]

Thank you again. You should treasure that photo, he was a class player and great guy. Our Keegan came from the North East and has a bit of a mullet when his hair is long.

I was on maintenance preds for 5 years before sulph was added . I didn't start seeing this consultant before this time. He has been great though. Had problems with the preds started to get hypos. Anyway he tapered off slowly and the sulph worked great until end of last year.

As for the tingling my little ring finger and part of my hand went numb then tingling started. I have recently had conduction test s. Although the symtoms have improved since taking the preds. My Ot made me splints prior for my wrists. The right thumb keeps clicking and is quite painful.

Anyway I am sure things will get sorted.

Can have a bit of a rest now the football season has ended for us. I work on match days as a Safety Steward as well as my part time job for the NHS. Just pleased I managed to get through the last home game last Saturday.

I will try to post pics of Keegan.

Your advice has helped. I really don't like going to my appointments and moaning. May moan here but no one else hears it.

Thank you have a good weekend.

[nomoreheels in reply to Hidden]

The pic is of a permed hair Keegan, early 70's! Do you write a list on the lead up to your appointments? I do a bullet point one & it's helpful, no more coming away having forgotten to mention something. I've also found asking questions here prior to appointments helpful, checking if it's something anyone's had experience of whatever's new since the last appointment (trigger finger is one that comes to mind). I then read up about it then I'm prepared & have an idea what may be suggested treatment wise.

[Hidden in reply to nomoreheels]

Thanks I don't but will now.

[nomoreheels]

Late to this Sue, I hope you're feeling ok? If you're going to experience side effects they'll be more prominent at the start & often reduce the longer you're on MTX. Makes sense really, you've introduced a new med so your system needs to get used to it. Do bear in mind though if the one folic acid isn't doing it for you contact your team to see if you could increase it. Different Rheumies, different ideas but I also started on one, the day after taking my MTX tablets then it was increased to the day before & the day after. My current Rheumy prefers 6 a week, each day except the day I inject & virtually no probs, just a little tired & less appetite the day after.

I've taken 15mg for 6 years & only recently had an increase to 17.5mg. As I've said before it's the one that sorted me out & hope it does it's magic for you too.

Your nurse was true to her word re the wait for having your knee drained, that's good. I'm sure you'll be more comfy once that's done. x

[Hidden]

Thanks everyone for replying. Unfortunately I haven't been able to go into work today, weird head and feeling really sick, but like nomoreheels says my body will get used to it in time. Yeah I do have a good rheumatology team and they tend to do what they say, so that is good for me. I will ring the nurse if I feel the same after next weeks dose. Hope everyone is doing ok.

[farm123]

Perhaps you can a chat with them when you have your knee drained and if you are still badly affected ask whether you can start at a lower dose and build up over a few months.

It may well take a while to settle down and depending on your work situation you may need to think which day you can l afford to 'loose' (cannot make my mind up whether it should be loose or lose) either Friday and miss work or Saturday which messes with your weekend. When I first stated my latest medication I lost the following afternoon so I moved back from Friday to Thursday. I am self employed but was unable to work at the time and it worked out better for me to loose Friday to be able to be 'normal' with the kids on the Saturday. Now the effects are no way near as bad so it would not matter which day. Farm

[Hobbits]

Hi Sue, it does take at least a few weeks for your body to get used to Mtx, as it does the side effects may subside. Yes, drink lots of water it helps a lot and makes the liver not so susceptible to any Mtx damage.

I took my Folic Acid the day after MTX it helps alleviate some symptoms. I also find it strange to hear doctors prescribe it in different amounts, before or after MTX. Sometimes I feel like we are all in one big Hamster Experiment! 💉