Choices to make ..... having seen Rheumy nurse today.

Wonkylegs

Well, I have been to see my rheumy nurse. She is really good and I can ask lots, but I still come away thinking of things that I should have asked .... even after writing a list!

As for the appointment, well I have been given plan A (stick to the dose of Leflunomide & MTX that I am taking now) plan B (slightly increase the MTX if I feel no better in a month) & plan C (look at starting one of the biological treatments)!

I'm OK with plan A ..... will try plan B if things get no better but I'm not at all sure about plan C! Don't know why though - maybe just cos it's new & the changeover period is always so stressful as you wait to see how things affect you and the disease.

Got lots to think about (Just read the info in the latest issue of Arthritis News about the biological drugs & have info sheets from the nurse ... so homework again!) and the thought of changing a dose of one med is enough without the thought of changing a whole load of them. I hope a slight tweak of the MTX dose might work well enough.

Anyway, that's me ..... all worn out with travel & walked too far really :roll: so am having a quiet afternoon on the forum & watching TV

hugs to you all
Wonky

frogmorton

Hi Wonky
Good to see you
Sorry the meds aren't dooing the job at the moment
I like the order of the plans....start with the easiest and work up to what you really don't want to do eh?
Mind you - did you want to go on the mtx in the first place??
Anyway you sit down have a cuppa and a read.
I gotta take eldest out to sainsbury's but thats ok I have done nothing all day coz I felt terrible...fell ok now though... :?
Take care
Love
Toni xx

tkachev

Did she tell you what each choice would result in.Usually they advise you to go on some medication or other because of increase in symptoms.I find if I am doing well the MTX decreases and when I am not they up the dose.When I reaches a high dose of MTX 22.5 and was still suffering they advised Humira(which has helped tremendously).I dont think they should be leaving it up to you.If you dont feel good on your present dose I suggest you increase MTX and see how it goes and if it doesnt work then try plan C!But of course it is up to you and how you feel
Best wishes
Elizabeth

Wonkylegs

HI Toni,

you have fun shopping ........ if it's that sort of shop?

I went shopping on the way home ..... but managed not to spend too much

Glad you feeling a bit better than this morning - afternoons are often a lot better for me .... mornings are so slow especially when it's so dark like this!

see you later
WOnky xxx

chris7

Wonky

You seem to be getting lots to think about here and I'm afraid it is all Greek to me, so sorry!
Hope you can just take one plan at a time, it may never come to C.
but if it does at some point in the future you sound like you are getting all the right info to consider.
Hope you don't find it all too scary at the moment and that you do have a relaxing afternoon and rest up. I am thinking of you and sending hugs. ((( )))
Chris xx

Wonkylegs

tkachev wrote:

Did she tell you what each choice would result in.Usually they advise you to go on some medication or other because of increase in symptoms.I find if I am doing well the MTX decreases and when I am not they up the dose.When I reaches a high dose of MTX 22.5 and was still suffering they advised Humira(which has helped tremendously).I dont think they should be leaving it up to you.If you dont feel good on your present dose I suggest you increase MTX and see how it goes and if it doesnt work then try plan C!But of course it is up to you and how you feel
Best wishes
Elizabeth

HI Elizabeth,

They are trying to work out what the maximum combo dose is that I can tollerate - I had that long time last year off meds because they increased the leflunomide and 20mg of each was too much for my body to cope with.

I've not been on this new combo (15mg MTX & 10mg Lef.) for long enough yet to know if this is going to work enough (isn't quite good enough yet) so have got to wait another month to see .... then if it is getting better I can stay as I am, or I ahve to up the MTX.

It's if the increase of the MTX doesn't work that the fun starts ...... put up with what I am like now, or try the newer stuff - not easy to choose, but we did discuss it all, and I have to wait for a bit and see what my body does :roll: and I can tell you it usually tricks us into thinking one thing and then doing another

thanks for your reply
WOnky

Wonkylegs

Thanks Chris ...... hugs much appreciated.

Not feeling too bad right now - as at least these days I know where to go for info and advice ...... it was a lot scarier in the days before I knew of Arthritis Care & the forum ..... it makes such a difference to be able to ask others about their experiences.

hope you are having a restful day too?
hugs back to you (((()))))
WOnky

frogmorton

Ah Cheers
Wonky
We are going for a cuppa.
Coz we are a mixed up family hubby and I make sure we have an hour with our onwn kid(s) once a week. Tonight is Cahrlie's night. So no food shopping just a cuppa and maybe a bit of CAKE!!!
Love
Toni x

Wonkylegs

frogmorton wrote:

Ah Cheers
Wonky
We are going for a cuppa.
Coz we are a mixed up family hubby and I make sure we have an hour with our onwn kid(s) once a week. Tonight is Cahrlie's night. So no food shopping just a cuppa and maybe a bit of CAKE!!!
Love
Toni x

their chocolate fudge cake is rather good

I tried it after my last visit to the hospital

have fun!

angel1

So sorry things are tough for you at the moment Wonks.

As I was reading through your post, I was thinking. OK, she can`t control this bl**dy awful disease, but I`m sure that having a certain level of control over the treatment will be good for someone like Wonky. We hear of so many people who say they are just treated as a case number, and told what is going to happen to them, with no self input. Try thinking along these lines, see if it helps.

Do your "homework", then come on over to the cafe, where all your friends are waiting for you.......Much love......Ange.

Wonkylegs

angel1 wrote:

So sorry things are tough for you at the moment Wonks.

As I was reading through your post, I was thinking. OK, she can`t control this bl**dy awful disease, but I`m sure that having a certain level of control over the treatment will be good for someone like Wonky. We hear of so many people who say they are just treated as a case number, and told what is going to happen to them, with no self input. Try thinking along these lines, see if it helps.

Do your "homework", then come on over to the cafe, where all your friends are waiting for you.......Much love......Ange.

Thanks Ange ...... you are so right ..... I feel so much happier having been able to talk things through with the nurse and been given the choice and asked my opinion - the consultant has a tendency to tell me what will happen and I am afraid that doesn't always suit me

just off to walk littlelegs to the GP surgery to give them a letter - if I don't write things down when they are fresh it gets all confused when I tell them what is going on!!

see you in the cafe later - read any good books lately?

hugs ((((((((())))))))))

joyful164

Hi Wonky.

A bit of a dilemma for you, but I think you know which road you might go down already. Just need to read up on the meds to help you confirm it. You're lucky to have a choice.
I am up to 20 mg MTX myself and I think if the consultant were to increase it, then I think I would fairly uncomfortable with the side effects. I can' go on leflunomide in any case because of my high blood pressure. It was suggested last year, but as soon as he realised how bad my BP was, it was just a no no subject.

Its just a case of being patient waiting to feel the results. all the best

Joy

lizzie7ne

Hi Wonky

I know how you feel, my GP keeps saying to me has the Rheumy mentioned anti tnf treatments yet (he hasnt) and like you I would be a bit worried about taking them.

I am on Methotrexate 25mg a week and 10 mg of leflunomide a day
(and on my Rheumy Nurse advice starting to increase it to 20mg a day - although I have tried 20mg before and it gave me diarrhoea but I am willing to try again and see what happens).

Maybe you just increasing the MTX as the nurse suggests may just do the trick, but it may take a few weeks for the larger dose to kick in.

Good luck and let me know what happens.

lizzie

skezier

Hi Wonky,

Flower its not fair but you do which ever your most happy with and we will all join up and hope it works for you...... That's the end of the sensible bit He has his doctor's costume on (he seems to think he's been promoted but why he is coated in antiseptic stuff I have no idea He said he is on his way and he will bark at the mtx and make it work for you.

I wish so much I could help but your right homework and then do what your happy with. ((((( ))))) Cris xx oh and some pocket riffling and slurps are there for you as well

Wonkylegs

Thanks Pixy, Joy, Cris & Lizzie,

you are all right ..... I think it was just a bit of a shock as they hadn't mentioned the biologics for years ....... wasn't expecting that!

I just don't want problems like I had last year when on 20mg MTX and 20mg Lefllunomide - remember how I climbed the walls after 6 weeks of continuous infections and no MTX?!!! :roll:

what I have now is so much better than THAT!!!

Can't remember who said they were upping the Leflunomide ..... was it Lizzie? ... but I found that the side effects lessened after 2-3 weeks on the 20mg. Co-codamol helped to lessen the impact too

Wonkylegs

Just thought I'd add an update .......

joints have not improved after the additional 3 weeks of the MTX/leflunomide combo so have spoken to rheumy nurse today and have to go to hospital tomorrow and pick up some MTX syringes with an increased dose to try.

keeping my fingers crossed that the 2.5mg increase will be enough and that I don't get any bad reactions to it.

I'll let you know how things go.

hugs
wonky

lizzie7ne

Hi Wonky

Good luck with the increased MTX, hope it works for you.


lizzie

skezier

Hi Wonky,

I really do hope it does the job with no problems for you. I shall keep everything crossed and so will this lot. Luv, Slurps and ((( ))) Cris xx

Wonkylegs

thanks Lizzie & Cris

I'll keep you posted .......... got to get the stuff first though :roll: :roll: now did they really say snow tomorrow?! :shock: :x :x

annie_mial

Wonky, hope so much it works out for you............I have everything crossed for you, hang on in there!

Annie
xx

snowball

Hi i'm new to this forum i have hade r/a for 5 years i am on 5mg mtx can't take any higher 20mg leflumonide i have also had anti-tnf treatment last one was rituximab it worked for a while, just had a streroid injection because im in so much pain now got to wait 6 weeks to see if things calm down.

skezier

Hi Snowball,

Welcome to the site and I hope you find it helpful cus they are a nice lot here.

The injections can take a while to work and I really hope you soon find a big improvement fro it. take care and hope to see you posting again soon. Cris x