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Going on to MTX soon feeling petrified

Hi everyone! I’m new here☺️ I’ve had RA for some years now and was finally put on to Hydroxychloroquine 2 years ago. My condition has escalated very quickly so they are now putting me on MTX aswell. Saw Rheumy doc in November and had chest X-ray but not heard anything more since. How long and what’s the procedure starting MTX? Feeling quite scared going on to them.

Any advice on sleep

Thank you 🥰

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Hello Ladybird, I've been taking MTX for many years, very successfully. You will probably given tablets to start with, which you will take on one day of the weeks, the whole dose in one go. You will also be prescribed Folic acid which you wil ltake for between 1-6 days a week (depending on what your consultant suggests) but you must not take them on the same day as you take MTX. I take MTX on Friday and Folic Acid on Saturday to Thursday. Initially you will have a blood test every 2 weeks, but this will reduce to every 4-6 weeks. You can also take MTX by subcutaneous injection, which you will be taught how to do. This will reduce any side effects (eg nausea) you might have. To download detailed information about MTX follow this link - versusarthritis.org/about-a...

It will usually take about 12 weeks to start working, but you might be given a steroid injection to tide you over in the meantime. All the best. XX

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Hi,

Thank you so much for your reply poemsgalore☺️

I’ve read with interest here that MTX has changed their life for the better and some not so good on it. I’m going into it with a positive attitude. My doctor is only giving me 1 folic acid the day after and no more, I wonder why some do it differently. Did you notice much change in pain? My pain is ridiculously bad.

Thank you for the link

Much appreciated 🥰xx

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Nobody knows why different rheumys have different ideas about how often they want patients to take Folic Acid. When I began Methotrexate I did notice a huge difference in my pain, and I only had 7.5mg (three tablets). It was eventually increased to 20mg then 25 mg and I had nausea so started to use subcut injections. I now take Leflunomide alongside MTX, but still occasionally get flares in my hands. But my worst pain is from Osteoarthritis in my hips and Osteoporosis in my spine. But then after 31 years of RA, I can't complain.

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Hi poemsgalore☺️

I’ve read the folic acid helps reduce toxicity therefore reduce symptoms, I’ll ask when I’m going on to the meds. I too have Osteoarthritis in hips and spine, I agree that’s the worst pain to endure I can’t get any sleep or position that’s comfortable. My friend told me about a body cushion she got so going to give that a try.

Thank you for your help Poemsgalore

🥰xo

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I started MTX in September with Folic Acid Fridays and MTX Mondays i quickly suffered from mouth ulcers, phoned the advice line who upped folic acid to 6 days a week. It took 12 weeks or so to work - I was given an IM steroid that worked for 9-10 weeks. It is now hard to believe the struggling to get dressed, getting downstairs or not being able to turn a key or open a cat food packet - I've found it a wonder drug!

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Hi Sencosheep😊

I’m feeling so encouraged that this medication is so great for most, I too have great difficulty in doing the smallest of things. The only part of my body it’s not hit is my knees. I was feeling very scared of going on to such a harsh medication but now I’m wishing they’d hurry up with it 😂

Hope it changed my life too

Hugs your way xo

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Please don't be scared about starting MTX. Although you see various reports on it, mostly not as good here, do bear in mind that people who use forums & particularly when concerned or responding negatively to a med are in the minority, most people are getting along fine with no need to be here.

I've been taking MTX for 10 years nearly & do fine. I am a little more tired & have little appetite the day after I inject but I just don't arrange anything too strenuous & just graze, one day out of 7 for the benefits I get from it is a small price to pay I feel.

Like you my first DMARD was HCQ. It worked for around a year then started being less effective & why MTX was added. Again, I also started on 1 folic acid (the day after) which was increased to the day before as well. As they're prescribed off licence there are no guidelines as such or recommended dose hence the variation in dose prescribing but should you need to I would think yours will increase it to help should you have any issues. I remained on tablets for about a year & then swapped to injections. I've been on 15mg, 17.5mg & currently on 20mg. My Consultant recommended when I started tablets taking my dose throughout the day with meals so my 15mg was divided as 2 tablets with breakfast, lunch & evening meal. Worked for me, no side effects except a little hair loss (why my folic acid was increased to 2) which settled the longer I was on it.

I hope some of this will help alleviate your concerns. Obviously as each of us is different so is how we respond to meds but the chances are you'll be ok, hope so for you anyhow. ☺️

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I too have been diagnosed just recently. So far I’m on prednisolone till I see the rheumatologist next month. He has given me leaflets to read and decide which one I want to take. I too felt I didn’t want to take the medication but realistically I cannot assist my own body through just nutrition. What you have written is really reassuring and helpful. Im so glad this site was set up so everyone can share there experience as in the beginning of this journey it’s all very confusing and worrying xxx

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You're welcome, pleased it helped you. It's such a big learning curve on the beginning, difficult to process it at times but if we're to stand any chance we've to work with our Rheumy but at the same time be content with the choices we make.

To me there's little doubt healthy eating goes a good way to helping us but I don't believe we can truly control the disease with it alone. If you respond badly to anything then avoid it, I think otherwise don't cut out anything for the sake of it or if someone recommends you do, it's hard enough without making yourself miserable through not eating something you like & are ok with. A common sense approach is best, it's no different with meds.

I wish you all the best when you start your MTX & remember we're here if you need us. 🙂

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I’ve already started an anti inflammatory diet with juiced greens and matcha tea which helps with fatigue 🥰xo

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If it helps then I see no harm. I used to juice a lot but then all my fruit was free. Anything that helps fatigue is good though!

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Hi nomoreheels☺️

Ha love your chosen name made me laugh as I used to so love my heels!

It makes total sense what you’ve said and you being on them for 10 years and they’re still working for you has given me great hope😊

Thank you nomoreheels

Big hugs 🥰xo

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You're welcome. I'm fortunate that my Podiatrist has helped me back in heels, albeit block or wedge but hey, who cares?! So my username isn't really appropriate anymore but everyone's knows me by it so I've stuck with it.

I hope MTX is good for you. You never know you might be helping someone who's bothered about starting it before long. Think positive thoughts & you'll be fine. 😚

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I still buy nice heels coz I can’t resist a sale lol Maybe one day I might get to wear a pair of them😉 I’m feeling more positive already after these chats thank you for that and yes it would be great to get to that point to help someone else

Hugs your way 🥰xo

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Now that's what I call confidence! You never know though, you may just be able to wear them. You're a girl after my own heart. Anyway bargains don't count as real money!

I gave away all but my favourite pair (& most frivolous purchase). I tried them on when packing them up in a recent house move, or tried trying them on is more to the point! Alas they're too narrow not to say high. Ah well, they still look good off! Tempted to put them on a shelf in our bedroom, they could be considered a work of art don't you think? 👠

I'm pleased being here chatting is helping.

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I can't even cope with my slippers. My toes get scrunched up and they are all folded under as though they are broken. And there's me an ex dancer. Haha.

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Me too poemsgalore, my feet pads are too swollen and sore but also added fact that we take a chance on falls. I do buy thick slipper socks and large slippers😂 my kids laugh at me as my feet look so large

xo

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I especially have to be careful of falls. I have Osteoporosis and have suffered spinal fractures.

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Poemsgalore1

Oh dear not good😘

I’m one of the unfortunate ones too with Osteoporosis in spine/hips not good is it, but I haven’t had fractures as you have thankfully. I now use a stick and not had any falls since.

Be careful, sending big hugs your way🥰xo

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Hi Nomoreheels,

Absolutely put them on display!! I laughed because my best friend is in a wheel chair and she displays all her heels in her bedroom on shelves🤣 They look fab! She was a terrible collector of her heels in her day, there’s millions of them. I must get a picture for you when I’m through next. She can wear them though in her wheel chair😉

Yes, it’s lovely chatting to people who completely understand how you feel and they’re all so lovely😘xo

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May well do that... when the bedroom is built! Brilliant your friend has displayed hers, it would be great to see a pic if she doesn't mind. Great she still wears them even in her wheelchair, go girl!!

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They are called posing shoes LB.....you can just about stagger from car to restaurant table in them, then the numbing effect of the wine gets you back to the car!

Got a a few pairs of those!

I was on Mtx for seven blissful years......I hope you are as successful.

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Hi AgedCrone😊

Yes, you are spot on ha I’ve done that before hehe

xo

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Hi, LB.....so that is your answer to starting Mtx......take the pills before you go to bed with plenty of water........

The next morning put on the most uncomfortable of your posing shoes & walk around in them......your will be so preoccupied with your feet......you won't have time to worry about what the Mtx is doing!

Hope it works! Don't forget the Folic Acid..that really helps.

AC🙋🙋

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AgedCrone☺️

🤣 I laughted so much lol thank you for that! I can just imagine myself with heels on and two walking sticks🤣 I’m all ready now and very positive.

Thank you for your help

Hugs 🙋‍♀️xo

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You are very welcome....a laugh solves a lot of RA problems doesn't it?

Let us know how you get on.

AC 🙋🙋🙋

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AgedCrone☺️

It certainly does help, greatly!

Will definitely let you all know, just waiting for the go ahead👍

🙋‍♀️🥰xo

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Hi. I too felt very anxious when I started methotrexate 10 months ago, first on tablets which didn’t agree now on the injections, it has just become part of my life now, I used to make a bit of a ritual of taking it but a couple of weeks ago I actually forgot and woke at 3am got up injected then went back to bed.

If it doesn’t completely keep it in check there are other options, I’m currently waiting to start Enbrel. I have ginger on the day after it seems to settle my stomach.

🤗🤗🤗

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Hi EDee😊

I’m having really reassuring statements here which has helped me so much, some have successfully been on them 10 years or more. I do hope I’m one of those lucky people. Everyone seems to change to injections which seems to work I can only assume it’s because the injection doesn’t go through the stomach hence less side effects. I’ve got so much worse since the decision to go on them was made in November, had my X-ray but not heard anything from them as to when I start.

Thank you for your tips on regularity and ginger everything helps to get me prepared

🥰xo

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Chase your Rheumy Department. LB,...first rule of RA...don't let the grass grow under your stilettos...she who asks...gets!

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That’s so true!!

At first I didn’t want to bother anyone and tried to battle on.

I’m lucky I have a brilliant nurse who has told me if I’m flaring or need any advice to let her know because if i don’t she assumes everything is ok, which make sense.

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EaDee - AgedCrone 😊

Definitely, I was just thinking that today, I’ve not had my bloods done either so I’ll give them a call tomorrow to see where it’s at

Thank you 🥰xoxo

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Don't be scared. I love it. It works. Been taking it for 9 years now.

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Hi stbernhard,

It’s wonderful to hear most of you having great success on this med, I’m feeling so positive now😊 I have a lot of fatigue my doc said the mtx would help that, was it the same for you?

🥰xo

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MTX helped greatly with the control of RA andas a result automatically also helped to reduce fatigue. I hope it will work very well for you.

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I know exactly how you feel, I was given the tablets on Monday last week. I talked myself out of taking them, that day but then I spoke to someone at NRAS who was very helpful and I took them on Tuesday and a part from a very mild headache I have been fine. I am so surprised as I am usually the person who gets all the side effects and spends a lot of time being sick. Good luck

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Hi Birdman4😊

That’s fantastic news! My doc said the same everyone’s different and only way to know is to try them.

I’ve not heard yet as to when I’m starting them.

Thank you Birdman4 and good luck to you too, will hopefully hear how you get on

🥰xo

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Hi Birdman4

Wee question for you

How often has your doc said for you to take folic acid?

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Every day a part from the day I take methotrexate

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Birdman4😊

Like most here, my doc is saying one the day after but most are everyday and they say it helps with side effects and hair loss. Think I’ll chat it over with my doc

🥰xo

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Hi I have just taken my second dose and went back to work today and so far so good! Hope this works, I hadn’t realised how bad I was until I was given the steroid injection.

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I have been on mtx for over 18 months, and like you I was a bit scared of all the awful side effects I had heard about. I can honestly say I have not suffered any ill effects, although my liver results do tend to be a bit raised, but still within my rheumy departments acceptable range. As I think has been mentioned in other comments, you are more likely to hear far more about people who can’t tolerate mtx than the vast majority of people for whom it works just fine - that’s just the nature of online forums. So please don’t be scared - you will most likely be pleasantly surprised - good luck!

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Thank you Soreknees2016😊

Yes, you are absolutely right and I’m feeling so much better about taking them now thanks to all you lovely people☺️

My liver reading had went up badly during a really bad flare so I hope I’m ok on them, my doc and rheumatoid team are going to do bloods weekly for 6weeks to keep a close check.

Did it help you with fatigue?

🥰xo

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Hi Ladybird - I fortunately don’t suffer from fatigue, so mtx didn’t make a difference to me on that score, but I’m sure others will be able to share experiences on that aspect. 😀

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Hi I would love to know if it helps with fatigue as before my steroid injection I was sleeping 14 hours a day. The injection has stopped this but it will wear off soon and I really don’t want to go back to that.

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Hi Ladybird

I too was quite nervous about starting MTX. Especially when the pharmacist gave me a couple of A4 sheets listing the side effects!

However MTX has given me my life back. I have been taking MTX for a couple of years now. I have had a few side effects. Some have been short lived as my body has got use to the drug. Others I manage thanks to the hints and tips from the wonderful folk on this site.

So it's 3 cheers for MTX from me.

Joy

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Hi Joy_1😊

There’s so much encouragement from these lovely people here it has helped me no end. I was the same my doc said it was basically a pure poison, then I freaked! But now finding how it has changed so many peoples lives and giving them mobility back I actually want this prescription to hurry up! 😂

Hugs 🥰xo

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Hi. I give MTX 👍🏻. I was on tablets but now inject 25mg every Wednesday. The thought of life without these drugs is unbearable, the impact of the medication on a life impacting disease is wonderful. Don’t be scared, the support is out there and it’s a win, win for you. Xxxx

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Hi Floralqueens😊

That’s fantastic! I’m so pleased for you. It’s just what I had hoped to hear lots of encouraging news! I’m now looking forward to having some life back. People here have been brilliant and so supportive it’s wonderful☺️

🥰xo

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I take 5 mg of folic acid daily to stop my hair fall very successfully (rheum prescribed). Going on mthtxate stopped new wrist pain in 3 days, Been on it 8 months. On remicade for 2.

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Hi carolyneJA😊

Great encouraging news! I’m so pleased for you, I’m now looking forward to getting a life back. Great tip about hair loss and folic acid I’ll certainly be aware of that as they’re only going to give me one folic acid a week on the day after.

Hugs🥰xo

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Hugs back! The daily does stopped infections, moth sores, and nausea too. I was on it 2 yrs ago alone. and experienced such awful hair loss. Now, with prescribed 5 mg? mcg? daily - huge difference. Fear not, Ladybird! :-)

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Thank you CarolyneJA I’ll certainly keep all this on the top of my list, last thing I could bare is hair loss eek! 🥰xo

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I just started MTX and was recently diagnosed. I’ll also start Hudrixychloroquine in a few weeks to try to further stop joint damage. I’m not in pain - a bit of morning stiffness but the xrays showed joint damage so I’m heading down this path too.

I’d been eating AIP for a while and was amazed at how much energy I had & really eliminated most of my swelling. What I’ve been amazed by starting MTX is the fatigue. I am so tired at the end of the day. I’m willing to keep at it for the sake of my joints, but I was hoping not to feel so tired all day - with no other changes to my routine.

I know everyone’s journey is different - just sharing my perspective. My son was on a similar dose of MTX for psoriasis & didn’t have fatigue. He and I both did folic acid daily except in MTX day, so you may want to see if the single dose was really what the dr intended. Best to you!

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