Having stopped Methotrixate.....: Hi, I came here last... - NRAS

NRAS
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Having stopped Methotrixate.....

Hi, I came here last week and was awaiting input from GP about fact I had gone off the M. and

asked her what she recommended, ie replace it with etc. or perhaps I should have halved the dose

or something. Apparently, after chasing up nurses twice, I have been sent a letter which hasn't arrived

yet but it apparently says to let her know how I go off the Meds and that Meth. has the least side effects and it may take some weeks for it to settle.

I asked, and she hasn't suggested any replacement.

Given I live alone, and have 28 steps I am concerned that with zero meds I may just wake up one

day and not be able to move????? I have crutches for times when ankles go out but if my whole

body craps out I am scared of the consequences.

Surely I must need something given I have spent years on this drug?

Suggestions and advice much appreciated, thanks.

14 Replies
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Have you seen a rheumy to get their advice? I would be worried too if I was in your shoes. I cannot believe the response of some so called medical professionals. Get an appointment with a rheumy as soon as you can.

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Hi, I eventually got a phone call from the GP who has said I have to see

the Rheumatologist. (They don't monitor me as such 'cos I haven't gone on

the Humira). I will have to wait weeks for an apptment but will get

onto it this week, thanks.

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an you get some steroids in the mean time to keep you mobile. You can't have nothing

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I don't understand why your GP would be telling you this unless you have opted for joint care it's not there place to say ok let me know how it goes. Are you under the care of a Rheumatologist if so he should have contacted them or perhaps it would been better to contact the Rheumy nurse.

What was your reason for stopping if it was bad side effects or you have taken it for 12 weeks without any noticeable difference.

MXT is usually the first thing used by the Rheumy and they try other things to see what can help.

Myself I could not take about 4 Dmards and finally given Arava which I was fine with at a dose that suited me now I'm about to start a biologic.

I think they should give you something else even s steroid injection or low dose steroid it's very worrying that you live alone and have all those steps. If your not under hospital care you need to be.

Just getting a letter and not seeing you us very unprofessional

people like us need to fight for our care and what we need. Message me anytime I will be happy to give you any help you need.

3 likes
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My goodness you could be me, I to couldn't take meth or many of the others, I now am on Avara (leflunomide) and biologics.

I agree with the above please see another doctor, they're not ask the same or give the same advice.

Good luck

Alison

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Hi Alison, it seems so many of us can't take what they seem to think

will work for us. My GP is normally very good.

Thanks...

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Hi, I don't see the Rheumatologist unless crisis as they don't monitor me as such. I have been on the Meth. for years and added other meds in which

didn't work then supposed to have started Humira but was reluctant to

have that and the Meth. I stopped because of constantly seeming 'pregnant'

and not wanting to eat any more 'cos felt so crappy.(also couldn't take meds without food in my stomach).

After fasting and juicing it still didn't go away when previously it had so figured its the drugs and didn't start taking again, pending Dr's advice.

Thank you June Rose, that's very kind of you.

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I do think you need to see your doc face to face to discuss this - not sure if your GP is also your rheumy or not? But a rheumy would be best. You should at least be given an effective anti-inflammatory and pain relief if nothing else! There are loads of alternatives to MTX, and they don't all cost a fortune. Their names may be different in NZ, but in the UK there are some other traditional disease modifiers (sulphasalazine & hydroxychloroquine) which cost pennies before we're allowed to try the expensive biologics.

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Hi HH, as it can take a week or more to see her she has said just to ring,

but I did the letter so nothing got lost in translation. I think they just

didn't necessarily give it to her. Yes, GP has said I need to see Rheumtology

which means they will want me to add the Humira to the Meth as they

suggested b4. I was seemingly coping until this stomach issue became

permanent and I began to feel worse and worse and like not getting

the nourishment anyway due to stomach problems.

I have had those drugs added in in the past and they weren't helpful

I have been approved for the Humira on Health system at a cost of

$20,000 yr so I guess I am one of the lucky ones.

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Hello Bright Angel.

Sounds like you need a face to face appointment with your rheumatologist to discuss a suitable drug regime as recommended in the above two replies. I see from your previous post you have a toddler, 28 steps and use crutches. I would also suggest that you ask for a full assessment of your housing needs. I am not sure if you live in the UK but here in UK you would ask for a referral to an occupational therapist and possibly also a physio therapist. If in rented accommodation then you would probably be a high priority to access accommodation more appropriate for your needs.

You seem to be really struggling at the moment, GPs don't have the time to sit and talk things through so I would suggest you phone the NRAS helpline, they are very supportive and would be able to give the time you need. If outside the UK then there will be a similar organisation that offers support to folk in our situation where you are who can put you in touch with your local services and act as an advocate for you if needed.

I hope you manage to sort out a drug regime which suits you soon and wishing you a return to better health.

Mall

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Hi Mall, yes everyone seems to think I have to go back to see the hospital.

Actually no toddler, thankfully. My baby-making days are over lol.

I do have crutches for emergencies but easier getting downstairs on my arse lol. I am in NZ and in my own home but have never gotten to move as never

on top of health etc. enough to make it all happen. We have an Arthritis

foundation which I emailed recently with a question but seemingly no reply

I guess more direct phone approach would work better.

Because I live in a smaller community there isn't perhaps as much available

as other places and also I value my privacy and even though it may sound

crazy I don't want others to see me at my worst.

Thanks for your good wishes also.

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Agree with all above , just to say I hope u get it sorted out quickly , mtx did not suit me do went onto sulphasalasine then leflunomide ! There's plenty of choices but my gp would not start a drug it's the job of the consultant Rheumy here.

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Hi Allanah,

Thank you, yes those didn't work for me either. I was predominantly wanting her

advice whether I should maybe halve the dose or go back on it fully, pending a

Hospital appointment.

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Latest update, as it turns out I have a liver clinic apptment on Monday and the GP

says they are the guys to deal with stomach, and yes, agrees I should not be like this all

the time. (I had endoscopy in the past and they said wasn't necessary for the colonoscopy) but I am worse now than then.

GP says to ask for a C.T. Colonoscopy as that would be the best option.

Given previous Cancer she thinks that would be a good thing to have done.

I shall see what they say to that on Monday, but suspect will need to wait for an

appointment. Will let you know how I get on.

Thank you ladies, it is nice to have people in the same boat who have the patience,

compassion and understanding to take the time to respond.

It is nice not to feel so isolated as those who don't have R.A. don't get the level that

it affects your body.

Thank you all, Smiley-face!

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