Lockdown or MTX days - jury is out

The look is how I feel today.

Day 21 well a little more than this for many!

[Hidden]

This is the spitting image of many family members.. I’ve got the teeth 😂😂

[Hidden in reply to Hidden]

That is my hair today I am feeling the hangover of MTX hard today!

[Hidden in reply to Hidden]

Well your definitely giving it a good go. Feel like your loosing the battle with it. Hoes your joints?

[Hidden in reply to Hidden]

Don’t feel like me and MTX are friends more like wary tigers 🐅

[Feank in reply to Hidden]

I used to feel dreadful on that! Just come off it as made me feel rubbish, feel great now, It made me wonder what good it was actually doing! Apart from damaging the liver... Stay well and stay safe x

[charisma in reply to Hidden]

I felt it yesterday... been back on low dose MTX (along with drug infusions) for seven weeks now but body is not too happy yet. 🙂

[sylvi]

Oh darling that is so funny. You know despite being as ill as i am this being housebound hasn't worried me too much.xxxx

[Mmrr]

🤣

[charisma]

Nearly six weeks stuck in my first floor flat now... and social distancing, no shopping etc, before that.

I hope you feel benefits of MTX within the 12 weeks of starting it. It is a wretched battle, feeling terrible and stiff and full of pain with pale skin, no energy, memory struggling, concentration diminished etc.

But it gets better. Just as, I hope, we can all begin to get some freedom back under Gov guidelines whilst avoiding a second widespread outbreak of obviously ill COVID-19 cases. Early days all round.

You are doing so well, Deeb. 🙂

[Hidden in reply to charisma]

Thanks hon. It’s my second go of MTX vas stopped for 5 weeks due to breathing issues as well as horrendous side effects but said I would try again! 😷

[charisma in reply to Hidden]

Yes, I remember. I would have said no... it does get my chest a bit, just not that bad! x

[Hidden in reply to charisma]

I decided to try as I knew I could not get any other drugs till later this year but least I can say I tried when I do a review! Take care x

[charisma in reply to Hidden]

It’s a difficult time. You were brave to try. X

[Lolabridge]

Hope you don’t look like that too! Actually my hair style looks similar but with added grey roots. And I’ve got spots ... though not yet on my face!

Hope you will feel better tomorrow x

[Hidden in reply to Lolabridge]

Can’t have a skinny face with Prednisone 😬

[Lolabridge in reply to Hidden]

No mine isn’t skinny nor is my neck that thin especially because of the steroid produced double chins! ☹️

[springcross]

Yikes!! The Martians have landed!! 😱😱😱😱 - hope you're feeling a lot better tomorrow. xx

[Nuttyshirlz]

Think everyone as problems with Mtx when first start it. I had loads of problems and my nurse said to bear with it. So glad I listened to her. Once your body agrees with it. It’s great I couldn’t be without it plus my other pills. 🤣

[Neptune1965 in reply to Nuttyshirlz]

Hi I am on week 5 of Mtx, Can I ask what did you fined the benefits were of Mtx. I may be expecting to much. and can I ask what are those other pills I might need to get back to normal.

Many thanks in advance.

[Nuttyshirlz in reply to Neptune1965]

It’s hard to explain I no it just worked one day and felt great. Don’t get me wrong I still get bad days. But I didn’t think it was working till I stopped using it.

[Hidden in reply to Neptune1965]

MTX about week 12 taking away the side effects I was off all other meds just on MTX and paracetamol so no pred and no co codamol and gastic prtoection etc. I also felt my joints were finally reducing down from constant flare to being manageable, My expectations were, low pain and better movement and some sanity (might be pushing it). However I then took a dive with side effects which built up to the point they took m e off MTX. (not everyone gets this so don't give up) Once off for the next 3 weeks I was flying I felt l ike a superhero! Then each day the joints started to let me know they were there and C19 lockdown kicked in and got to the point 5 weeks ago I felt I had regressed back to the start of my RA journey. Went back on MTX 5 weeks ago but now side effects building up again. So for me I can see it works on my body and bloods but my body does not like it re side effects at all. I will plod along till I can speak to rheumy team as I want something in me to keep joint damage down but I feel we need to part ways,

Stick with it you need to get to 12-16 weeks to see some progress I believe.

[Neptune1965 in reply to Hidden]

Hi Deeb

Thank you for such a well explained reply. I have to say just what I wanted to hear. I have not had any side effects as yet I am on week 15 not week 5 I had a recent flare up as I was down to 1 pred and just about to finish them. But the Doctor put me up to 6 to carm it down. Now I am back on 7.5 mg and going to start to get it down by 1 over the next few weeks again back to zero.

Do you think it is possible to do a sort of data input job with this condition as work want to sort of know. Just a general guess mined. Thank you once again for a great answer.

[Hidden in reply to Neptune1965]

I am looking at re training as I dont feel my work is helping so I am looking at mentoring with teens/sens which I have done before. Data input does mean lots of hand work so might create flares but we are all different so you might be ok.

[Hidden in reply to Neptune1965]

Hi Neptune I too have had problems with methotrexate. 3 years on tabs but it wasn’t working had fatigue a lot. Blamed on active RA ( it was active) started injections in September added other dmards . No go. Started a biologic in January. Great joints amazing but still having a lot of fatigue. Again blamed on RA or work (always an excuse) had A chest infection off for a few weeks. Restarted 2 weeks before lockdown fatigue increased. 2 weeks into lockdown gave me time to look at me. No work no flares but my god the fatigue 6/7 days I was sleeping round the clock dizzy aches and pain different to RA headaches. Couldn’t blame work. One day I slept 36 hours husband had to wake me for sips of water ( don’t remember) hospital took me of methotrexate. I’m back in the land of the living. I do get tired I’m participating with the world. I’m starting to get stiffness I’m limping again so I need something else’. I’ve a telephone consultation on Monday. Yes my joints are better with methotrexate but not at the cost of s zombie life. Looking back this drug really hasn’t suited me for a long time. Can’t say I didn’t Give it a good go. It’s a great drug if it works for you .

[Neptune1965 in reply to Hidden]

Hi thank you for your reply it is very interesting how this drug can have so many different outcomes with everyone. but I have to say I am becoming much more aware things to look out for if things start to go off track as just like you I would of just put up with it. I am still at the early stages of this but feel in a much better place and so much knowledge is out there. I just wonder what the best drug to run along side Mdt

as I could like to keep my flare ups to a minimum once I come off Mtx steroids and pain killers. but if anyone could recommend a good starting mix. I will just hope it work out ok for me, but I will be more a ware now if it is not.

Thanks again for your detailed comments.

[Hidden in reply to Neptune1965]

Such a difficult question. We are different. General rule is other demards could be added to MTX. If these don’t work then maybe a biologic if your suitable. It’s a very slow process of trial and error and everybody’s cocktail can be different. Patience is required I’m afraid.

[AgedCrone in reply to Neptune1965]

I was on Mtx for 7 years & hardly knew I had RA...it’s a great drug ...which is why most rheumatologists try to get you to stick with it.

Just take it every week and forget it .....don’t overthink it and don’t dwell on the horror stories you see here because that is someone else......not you.

It’s no good somebody else telling you what pill they take because what suits them won’t suit you. Just trust your rheumatologist & get on with your life.

[Hidden in reply to AgedCrone]

Unfortunately after 13weeks and then 5weeks off it due to side effects and then back on and everything happening again I can't just get on with my life as not one drug suits all! I always say on here it might not be working for ME but it works for MANY. I work and talk with my Rheumy team and even they say it might not be the one for you.

Sweeping statements don't help those that the drugs don't work for and many on here are proof.

However I am looking forward to the dayI find my drug so I can be back to some form of life I want.

[AgedCrone in reply to Hidden]

You appear to not to have understood...I certainly did not say One Drug suits all ....because if it did we’d all be happy bunnies & this site would be redundant!

I said “what suits them will not suit you ”.......meaning if I take Mtx + X...there is no point me telling somebody else this - because the only person who can know, with any likelihood of accuracy, if a combination of drugs is likely work for an individual, is the rheumatologist who is treating that person. We all have different needs....and unfortunately we sometimes need a lot patience getting there.

You say you have recently tried a drug for 13 weeks, sadly it took me a lot longer than 13 weeks to settle on on some drugs........but I trusted my rheumatologist & even though I felt lousy I stuck to the regime he recommended....not pleasant, but I was determined to have a life.

I admit I am one if the lucky ones...but believe me I put in the time.

It wasn’t overnight & it certainly wasn’t quick a walk in the park.

Twenty years ago there were far fewer drugs....these days there is so much choice & if only there were more rheumatologists, solutions could be found far quicker for the newly diagnosed.

However, for some people, finding the right drugs still doesn’t happen overnight, & it’s surely best that is known & understood, rather than have the newly diagnosed think it is their fault the first drugs they are prescribed don’t work.

I hope that makes it clear what I meant?

[MadBunny]

What product did you use to get that fabulous hairstyle????😊

[Nuttyshirlz]

I used Philip Kingsley i get off Qvc. Medication knacks your hair up.