Methotrexate advice please

[Krazykat26]

Hi folks

I've been on a bit of a roller coaster lately. I've been doing regular blood pressure checks n sending them into my GP..this is coz I'm on an immunosuppressant called ciclosporin..it's not mentioned much on here n one of the side effects I'm getting is high blood pressure.

Anyway after my last lot my GP phoned n checked how things were going..I had some swelling n red rash on my right lower leg so she booked me an appt for the next day. Off I went for what I thought would be a check on BP n my leg...oh how wrong I was!! 😹😹

As soon as I went into the room after the initial greeting she said that I'd lost quite a lot of weight since I last saw her..so onto the scales I went!! I'm in normal BMI range n I'm not bothered..it just means my clothes fit better!! Then she wanted to look at my current rashes..so I showed her n she took photos..then as I was getting dressed again she started to ask me about my diet..which is good n healthy..I'm eating smaller meals coz I'm not using energy like I used to etc..before I know it I'm asked to go back on the couch for a rectal exam!! Well people I wasn't expecting that!! 😲😲😲

From that GP appt I've had loads to do.. I've had to provide pee n poo samples..extra bloods to be taken..n a chest x-ray..she didn't take my BP coz with all the exercise I was doing she said it would be 'raised'😹😲😹

Then fast forward a couple of weeks n I got call from dermy secretary to say that my dermy would like to see me ASAP!! So booked an appt for the next day..not much time for prepping..but I did my best n I am wearing my skin anyway so I thought I'd take that along!! 😹

I asked him about trying a different immunosuppressant coz I find it really hard to swallow ciclosporine.. they're like big silver bullets n get stuck in my gullet..n as they're causing high BP I'm reluctant to increase them as he's suggested previously..I'd just have to try n get more bullets down my throat!!

So I'm gonna try methotrexate instead..I only have to take it once a week..n folic acid on the days that I don't take the methotrexate..a friend of mine with rheumatoid arthritis is on it n describes it as his 'wonder drug'..so I'm quite keen to give it a go!!

I don't make a big fuss..n tbh I don't really enjoy attending hospitals..surgeries etc..so I just wanna get it done n get out of there soon as..but I'm gonna say that I have a fabulous small team..two docs who really care about what's going on with me..they really r spot on!! 👏👏👏

My question is to anyone who has had experiences of methotrexate..I understand that it can cause mouth ulcers which I haven't had as one of my lupie symptoms..n my dermy said that it can take a while to build up in my system. I'm gonna start on 12.5mgs..blood tests every two weeks..n he'll review in approx four months.

The pic is some more fancy firewood..I painted it..it has literally been years since I have been able to paint due to the fact that my hands get soooo bad with my particular lupie mix...it felt really good to be able to pick up n paint again..it's basic of course..but I did it!! 🎉🎉

It's the eye of Horus..a symbol for protection n health..now it's on the wall in my living room!! 😹😹

Kat 😽😽 xx

[Hidden]

Hi, are you taking the methotrexate as an injection? I had a friend on it, but they switched her to Benlystra. It’s an auto injectable. She blew a vein out at least once with the methotrexate. Idk if that helps?

Best of luck.

[lynnek2202 in reply to Hidden]

hi i’m on methotrexate injections and they are intramuscular I put in my stomach they shouldn’t be near any veins ? I find it helps x

[Hidden]

PS KK, I love the artwork! 👏

[Krazykat26 in reply to Hidden]

Thanks brook 🤗

I'm gonna take tablets..I understand it's a low dose to start with..so I'm not gonna blow any veins!!

Hope all's as well as it can be for u right now 🤗 xx

[Hidden in reply to Krazykat26]

Ahhh KK, thank you, I hope as well for you too. Glad you don’t have to self inject. (😖).

🙏

[Oshgosh]

Love your art work

[Krazykat26 in reply to Oshgosh]

Thank u oshgosh 🤗🤗xx

[Benne09]

Hi I am on methotrexate and started off on tablets and had awful side effects but we are all different so 🤞🏾U will b fine. Am now on injections which have no side effects at all and is painless which am pleased about. Hope proves to be a wonder drug for u x

[Krazykat26 in reply to Benne09]

Thank u for your reply Benne

Can I ask u what side effects did u have? I have had side effects with all my meds but I'm quite resilient n usually manage to push on through them!! However it's good to know what I might be looking for.

Glad to hear that you're better on the injections though..would u say that this med has improved your symptoms? Xx

[HazelW]

I've been on methotrexate for several years. Started on hydroxychloroquine but that did nothing for me. Since I've been on methotrexate my Lupus has been well controlled. My rheumatologist is very happy with the effect it's having on my arthritis too. I take tablets - 15mg once a week like you. It doesn't suit everybody but it's my wonder drug ! Good luck !

[Krazykat26 in reply to HazelW]

Thank u Hazel

That sounds promising!! Xx

[misty14]

Beautiful artwork krazykat and wonderful you felt better enough to go back to painting!. Your very talented.

Methotrexate is a very good drug for the arthritis too as your RA friend has probably noticed so I hope works well for you.

Gp's seem to be on a mission as your story sounds so similar to my mum's who landed up on the fast track to the Gastro dept for tests so be warned!. They were worried about her weight despite the fact we eat a healthy diet and have like you cut portion sizes as we're not as active as we'd like . They won't listen but to be fair in someone like you on immuno-suppressives they won't take chances!. It's difficult!.

Do keep us posted how the MTX goes and I hope your better soon. X

[Krazykat26 in reply to misty14]

Aww thank u misty

Yes it's playing on my mind that I might end up in gastro clinic!! 😲However I'm not underweight..I'm in the usual range BMI wise for my height..you'd think docs would be pleased I'm not obese or anything!! I'm sure everything will be fine..she's just running these tests to rule out the obvious 🤞

I hope you're as well as u can be right now n thank u for your reply xx

[misty14 in reply to Krazykat26]

I so agree with you krazykat about weight and BMI etc. Its right though that the gp's are thorough with patients like you on immune-suppressives!. It's damned if they do and damned if they don't! Your being well looked after. keep us posted how you get on. I'm going to my Rheumy clinic on Tuesday as an emergency so hoping for help as flu jab made me flare!. have a good weekend.Xx

[Krazykat26 in reply to misty14]

I'm sorry to hear your having a flare right now 💐💐 I hope your rheumy can sort u out on Tuesday..rest up n take care 🤗

Kat 😽😽 xx

[misty14 in reply to Krazykat26]

Thanks so much krazykat, hopefully he will. Take care tooXx

[Kath1]

Methotrexate works really well for me but it does make me feel a little sick the day after. It does take a while to kick in and for you to get used to it so give it a chance if you can. I started with tablets but they didn't agree with me so now I inject (22.5mg) once a week which is fine. As people have already said we all react differently to it but it is certainly worth a go. I hope it works well for you!

[Krazykat26 in reply to Kath1]

Thank u Kath

Can I ask how the tablets didn't agree with u?

I do get sick with the ciclosporine n I'm hoping by taking methotrexate once a week I won't feel so bad..I have to swallow ciclo twice a day..every day..n they're huge!! Xx

[Kath1 in reply to Krazykat26]

Hi, the tablets made me feel sick for around 2 days after and they weren't helping my symptoms. So I was switched to the injections and a higher amount. My symptoms are much better controlled now and I find the more my system gets used to it the less sick it makes me feel. I have read on this forum that some people get on fine with the tablets so hopefully they will work well for you. Even if you feel a bit off the day after it sounds like it would be better than what you are already taking twice a day now.

[Krazykat26 in reply to Kath1]

Yes..it's all pros n cons with these kinds of things ain't it?

Thanx for the info..a good warrior has to know what she's up against before going into battle..n u have helped me today!! 🏹🏑🥊

Kat 😽😽 xx

[Nickym2301]

I've been on Methotrexate for several years. I resisted the suggestion for a long time as I'd heard a lot of negativity surrounding the drug.

However, since being on it I've seen a noticeable improvement.

I'm on injections now but started on tablets however they made me feel very sick.

Good luck with your new regime ... hope it helps you! Xx

[Krazykat26 in reply to Nickym2301]

Hi Nickym

Thank u for your reply

So u felt sick on tablets too? I'm finding it interesting that injectable form seems to agree better with people..I didn't know about it being available as an injection?!

I'm glad that you're having positive results with regards to your symptoms..long may it continue!! Xx

[Nickym2301]

If you start feeling sick it may be worth asking your GP? They're simple to administer (it's now in pen form) so no fiddling with delicate needles which I had to do initially!

Keep us posted ...

💜😊💜

[Krazykat26 in reply to Nickym2301]

Will do..thanks again 🤗

Kat 😽😽 xx

[helsbels31]

Tablets tend to cause sickness in some people like myself because they are absorbed in your stomach, With the injections you obviously bypass the stomach. I have been on injections for 3 months now and have started to notice improvement with joint pain especially x

[Krazykat26 in reply to helsbels31]

Thank u helsbels

🤞🤞I can handle them..but if not it's good to know I can inject instead!!

Glad to hear that you've had some improvements with your symptoms..long may it continue!! Xx

[svfarmer]

Hi there I take 8 tablets methotrexate once a week and folic acid for days in between- I have had no side effects from methotrexate, I’m always getting blood blisters in my mouth and scabs up my nose but had this before taking methotrexate- if it makes you feel sick they can give you an injection- it took quite a while to kick in - good luck x

[Krazykat26 in reply to svfarmer]

Ok thank u 🤗that's reassuring!! I'm gonna go for it..warrior stylie!!

Xx

[Krazykat26 in reply to svfarmer]

Can I ask u how u take the 8 tablets? Do u take them in one dose or split it into two doses on the same day?

I'm not sure what strength they r..I'm gonna be taking 12.5mgs once a week..don't know how many tablets that will be xx

[svfarmer in reply to Krazykat26]

I take 8 x 2.5kg so 20g I take them all in one go in the morning - they started me on 4 x 2.5kg first then they upped it to 6 x2.5kg as tablets were not controlling the lupus so then they upped it to 8 x 2.5kg and have been on that dose for the last 2 years xx

[Krazykat26 in reply to svfarmer]

Ok so I'm gonna be taking five I've worked out..thank u for all the info 🤗 you've been a big help!!

Kat 😽😽 xx

[Spotty-ewe]

Hi Kat,

I know nothing about Methotrexate, but I do know I love your your eye of Horus! 👏🏻👏🏻 YOu’ve done a fantastic job of it and it must feel great to have got back to the painting after such a long time. 👍🏻👍🏻

I hope all goes well for you Kat and keep us posted how things turn out re your weight loss and new medication.🙏🏻🤞

I’m so pleased Horus at least is keeping an eye on you!!😂😂

Take care dear Kat. 🤗😘💕

[Krazykat26 in reply to Spotty-ewe]

Thank u Spotty 🤗🤗

It's been tough for me lately so 🤞🤞changing to methotrexate helps!!

It felt soooo good to be painting again!! I've got an 🕉️ to do next!! 😹😹

Take care lovely 😽😽 xx 💜

[Spotty-ewe in reply to Krazykat26]

I’ll be praying it makes a huge difference to you Kat. 🙏🏻🙏🏻 You’ve suffered so much I truly hope this is the answer. 🤞🤞 And the best of luck with your future painting projects. 🎨 👍🏻 And don’t forget your 🎼🎶🎵 🎤😉 Hugs 🤗❤️

[svfarmer]

Bless you -your very welcome xx

[stiff19]

Lovely artwork such a talent so great you’re able to do again 🙌🏻👍 hope the methotrexate works out well for you 👍🙌🏻🤗 glad u have a good team looking after you 🙌🏻👍 I’ve read for some the drugs have done wonders and I hope they help you as much 🤗🤗

[Krazykat26 in reply to stiff19]

Thanks stiff 🤗🤗

😽😽xx

[panda2]

Hello dear friend 😻,

Oh my goodness, what a time you've been having!! Thank you so much for sharing with us and what a shock at the docs!!! 😱 Sending lots of hope for an easy set of fast-tracked investigations. And also much courage and strength for you as you start a new course of meds. It's lovely seeing how many have responded with their experience of MTX. Looks like it could offer a new lease of life for you. Most of these drugs do have different formulations, so do ask your prescribing doc how/when to get a different form if you have trouble with the first one they give.

Looove the art work! So nice to see you getting to play again. 😊🧜‍♀️

🐼xx

[Krazykat26 in reply to panda2]

Thank u 🐼 🤗🤗

Good to hear from u n yeah I agree the responses here have equipped me to go for it..this forum is fabulous!! 💜💜💜

Good tips from everyone whose responded with their experiences of mtx..helps a gal weigh up the pros n cons!!

Forewarned is forearmed!! 🏹

Take care lovely 🤗

Kat 😽😽 xx

[Bronn in reply to Krazykat26]

🤞🤞🤞For you. Take care.

[Bronn]

Hi, like the painting good on you for giving painting another go. Just to say methotrexate doesn't agree everyone 🤞 it works for you. I took it a few years ago now it affected my breathing and now have Pulmonary Fibrosis of my left lung. I'm back and forth to see my lovely Thoracics doctor twice a year. I really hope it works for you but tell your doctor of any problems no matter how small. Good luck

[Krazykat26 in reply to Bronn]

Thank u Bronn 💐

My main problem is my skin..I've got a diagnosis of SCLE so my inner organs aren't affected..so they say..I've been on Ciclosporine for over a year n my dermy is trying to get 'lupus activity'under control..he kept advising that I increase ciclo even though I had raised BP because of it..I was already finding the bullets hard to swallow n that was twice a day..I'm hoping that taking smaller pills once a week is gonna be better. It's always a 🤹 act ain't it 🤦🙆

Sorry to hear that it caused u problems with your lungs..I will definitely look out for any breathing probs though.

Thanks for the advice n the good luck wishes 🤗🤗

Kat 😽😽 xx

[Jacques]

Taking methotrexate for r/a and lupus for about 8 years. Seems to be helpful.

[Krazykat26 in reply to Jacques]

Thank u Jacques xx

[kyliexc]

I'm on 20mg methotrexate every week and take them in the pill form. They've done wonders for me. Was put on this and 2 tablets of plaquenil a day, and my symptoms have mostly gone away (yay for no joint pain!!) We even tried to reduce my methotrexate for 15mgs early this year, but my bloodwork started going backwards again - so back to 20mg it is.

Hope you find the right mix soon!

[Krazykat26 in reply to kyliexc]

Thank u kyliexc

That's very reassuring..I'm glad u have found it helpful. I'm gonna be starting on 12.5mgs per week so I reckon I can handle it!!

I'm glad that it has helped u n that you've got some quality of life back 🎉xx