My rights to change medication ?

cakegirl

As a patient, just wondering what my rights are to request that I change drugs. I've had enough of Metho, been on it for 18 months and last couple of months just felt as though it hasn't done a thing for me (if I am honest I stopped taking it in early December and don't feel any different - I am still aching the same).

Been coping on Diclofenac and Co-codamols (as I have always done prior to starting Metho 18 months ago).

I understand about joint protection and am more than willing to try something different, I just want to know how I can word it at my appt on Thur. My Mum said I need to just be honest and let them know I have stopped the Metho.

I don't want them (or anyone) to think I'm irresponsible. I have 2 young children and the Metho leaves me wiped out for a whole day, my body feels like lead and I am so sick from it, despite taking folic acid 6 days a week), I just can't afford to not be there for them for a whole day, I have no-one other than my husband to help and he works full time

Feeling pretty down with it all at the mo. Any advice greatly appreciated.

Thanks for listening xxx

tkachev

I absolutely know how you feel. With little children, 3 with health issues, I had to be there for them as best I could. Methotrexate sent me to my bed and I couldn't stand it so would often take a rest from mtx. Holidays from school were so difficult and I would have to plan to take one dose during Summer holidays(creche and clubs).

Do let them know you have stopped taking it and why. I am sure they will just look for an alternative treatment or suggest a lower dose or possible injections which are supposed to alleviate the nausea. Everything is worth a try.

I would be surprised if they moaned at you-it is your life and needs must but best to put them in the picture.

I just want to say I now take anti-sickness pills, prescribed by my rheumatologist and they have done the job brilliantly(but not for everyone), as long as I remember to take them before, during and after MTX. Otherwise I don't think I could have faced taking them again.

Good luck and so hope something works for you.

Elizabeth

Colin1

Hello again Cakegirl , Methotrexate i called it the drug from hell. it did work for me at first but wore off after a year or so. it seems its one of the combo drugs that you take alongside another. I think as sick people so to speak we are a difficult buinch to care for and meds can be a problem in themselves. When i went on the rituximab i stopped taking the metx without telling the consultant. I started to feel better quite soon that MTX illness went in a few weeks and my RA seemed to be ok with just the Rituximab boy was i glad it worked out ok. i had been on MTX for 6 years and for 6 years i felt so ill. On the other hand i know people who have been on it for over 10 years and they think its the best thing since sliced bread. where all different hey no wonder where hard to sor out with meds.
Take care
Colin

tillytop

Hello Cakegirl

So sorry you are struggling so much.

I think it is entirely appropriate for you to talk to the consultant about changing your meds, although I know from my own experience that it can be difficult to do so.

I agree with your Mum that you need to be completely honest with the consultant and tell him that, quite apart from the fact that it doesn't seem to be helping you, the side effects are not manageable for you. I have taken mtx twice in the past 16 years - first time for a year and a half and, like you, I starting missing doses because I couldn't cope with it and more recently for a year or so and again, I couldn't deal with it. On both occasions the consultants have been very understanding - even though it was actually really helping my joints. No-one can say you haven't given mtx a good go Cakegirl and hats off to you for that.

I can't see for one moment how anyone could consider you irresponsible - in my view quite the opposite is true because you are trying to do your very best for your family while coping with your arthritis in the best way you can.

Sorry, can't remember if it's RA you have but's that's what I have and although mtx seems to be one of the "drugs of choice" for RA these days, there are lots of others available, either on their own or in combination so hopefully the consultant will be able to suggest something else.

Will be thinking of you on Thursday and please do let us know how you get on.

Love Tillyxxx

dibdab

Hi Cakegirl,

Sorry that you're having a rough time with the methotrexate. I tried it in combination with hydroxychloroquine, but couldn't tolerate it as it wiped my immune system and I got constant infections. I requested a change of medication so they gave me steroids daily, but that didn't suit either so like you I stopped taking them before the next appointment, though I did ring and have a long conversation with the rheumy nurse who was incredibly supportive. So they tried me with sulfasalazine building up the dose really slowly, and 3 years later I'm still on it and it helps! So I'd say be honest, it's your body and you have a voice in your treatment plan. Don't give up, there will be a drug out there that helps you but it may take a while to get the right combination.

Hope your next appointment goes well.

Deb x

cakegirl

Thank you all so much for the reassuring replies. It really helps knowing that others have had similar experiences and also have taken the occasional break.

I feel a bit more confident about my appointment now. xxx

cakegirl

tkachev wrote:

With little children, 3 with health issues, I had to be there for them as best I could. Methotrexate sent me to my bed and I couldn't stand it so would often take a rest from mtx. Holidays from school were so difficult and I would have to plan to take one dose during Summer holidays(creche and clubs).

I just want to say I now take anti-sickness pills, prescribed by my rheumatologist and they have done the job brilliantly(but not for everyone), as long as I remember to take them before, during and after MTX. Otherwise I don't think I could have faced taking them again.

Thank you Elizabeth. I'm sorry to hear of your childrens health issues, hope things are ok for you.

I have been taking the antisickness tablets also, they do help somewhat but I still feel rubbish xxx

frogmorton

Thinking of you today Cakegirl

In the words of the 'wARhorse advert'...BE BRave!!

my fingers are crossed for you

Love

Toni xxx

tkachev

cakegirl wrote:

tkachev wrote:

With little children, 3 with health issues, I had to be there for them as best I could. Methotrexate sent me to my bed and I couldn't stand it so would often take a rest from mtx. Holidays from school were so difficult and I would have to plan to take one dose during Summer holidays(creche and clubs).

I just want to say I now take anti-sickness pills, prescribed by my rheumatologist and they have done the job brilliantly(but not for everyone), as long as I remember to take them before, during and after MTX. Otherwise I don't think I could have faced taking them again.

Thank you Elizabeth. I'm sorry to hear of your childrens health issues, hope things are ok for you.

I have been taking the antisickness tablets also, they do help somewhat but I still feel rubbish xxx

What a shame you still feel rubbish. They have been a godsend to me. I have the nausea sometimes but only because I forget to take the correct dose. Again everything has to be planned round the children so I'm not on a regular routine with my medication.
Thanks for your kind words. It was worse when they were younger and before my THR. I think I spent every day in tears but trying to keep happy for them. Not an easy combination. Hope things improve for you too.

Elizabeth xx

hileena111

Hi
I'm sorry I dont know anything about meth except what I read on here...
I have OA but drugs are drugs.....Its your body not the docs.....I agree you should be honest with him and tell him.
i]Text removed, unqualified advice given - Moderator Z[/i
Love
Hileena

hileena111

Hi
After a lot of thought about whether to reply to this or not I decided I would......dont know how long it will be here????

I got a pm about the above post where they deleted some of my post.

After a few messages back and forward to mods I was eventually told that it was deleted because I told Cakegirl to come off her medication.
I dont know if it was a misunderstanding but i wouldnt tell anyone to come off medication.....in fact in the first bit of my post I did say "be honest with your doc and tell him you have come of your medication"

Anyway.....why would I tell her to come of medication when by her own admission she had stopped taking it in December??? It doesnt make sense....I just thought my side of this should be posted.
If its still here and you have read it.....thanks
Love
Hileena

dorcas

Hello cakegirl

Having read your post it seems to me that what you've written there is exactly what you should say to your consultant. Your struggle with managing the side effects of Mtx comes across, and also your willingness to discuss a change of DMARD if he/ you agree it's appropriate.

In my own experience... I've found my consultant willing to consider with me changes to meds and what might work best.
Like you I had been on Mtx tabs and found the nausea difficult to cope with.... my consultant suggested we try Injectable Mtx... which can be administered at a lower dose without losing efficacy as it's more easily absorbed by the body in inject. form. So perhaps that might be a possibility?

It isn't always easy to get docs to listen...they are busy people...so go well prepared with what you want him to consider. I find it helpful to narrow down what the issues are....... and usually begin by saying ' I've got one /or two things I need to discuss with you today' . That way you have a bit of control over the consultation. (In the past I have also resorted to writing to him in advance of the appointment!)

If Mtx isn't the 'right' drug for you then don't despair...there are so many alternatives .... it's just finding the right combination for you. So don't give up! Your consultant is focussed on helping you.... but needs you to tell him how you feel. Sometimes a little nudge in the right direction doesn't go amiss.

(((hugs)))

Iris xxx

elnafinn

I have read, your reply, Hileena. Thank you. You have been on the forum a long time and are a very sensible, helpful, supportive member. You are exactly the kind of person this forum needs.

Elna x

hileena111

Hi Elna
Thanks for the support

Love
Hileena