Decision Time

tillytop

Morning all,

Not really expecting anyone to plough through my ramblings, just helps to get my thoughts down in writing...

Well, I have finally had to admit that my methotrexate “experiment” hasn’t worked and it is not going to be enough to keep the RA under control on its own.

I stopped Humira back in June after I became allergic to it and, although the consultant was all for switching me straight to a third anti-tnf, I wanted to try mtx again, because, after my Humira difficulties, I really didn’t feel ready to go that route (and, if I’m honest, I was too damn scared).

Anyhoo, I started mtx nearly 6 months ago at 7.5mg weekly and having increased the dose every 4 weeks, I am now on my third week at 17.5mg. Clearly the mtx is having some effect because I have been able to reduce the prednisolone to 12.5mg daily but the combination of the two just isn’t enough. I am struggling with my joints, and struggling hugely with fatigue and the blood results show that my inflammation levels are not really reducing. If anything I seem to be going downhill.

My next rheumatology appt is towards the end of March and, by then, if I decide to increase my mtx again, I will have been on 20mg weekly for 3 weeks I think.

The scariness of another anti-tnf is now pretty much outweighed now by the RA struggle, so the decision will be a bit easier. I am thinking I might ask if they would let me try Infliximab again because it worked so brilliantly before, until I had an allergic reaction during an infusion after nearly five years of taking it. Otherwise it will be Enbrel or Rituximab.

My other real concern is funding – my appt in March is with the anti-tnf clinic and the consultant said that he couldn’t see why funding wouldn’t still be available but with all the cut-backs you never know. I have this horrible feeling that, by deciding to go the mtx route, I may have pretty much “cooked my goose” as far as anti-tnfs are concerned. And what if the consultant looks at how I am and says I don’t now “qualify”. I know how rubbish I feel at the moment and my wonderful husband says that, if there is any question, he will leave them in no doubt as to how unwell I am, but I still have this lurking concern.

Hey ho – onwards and upwards (or downwards!!!!)

If anyone is still reading at this point – thanks for listening!

Tilly xxx

zechariah

Oh Boy, its a struggle isnt it!

I hope you find something to help and its not too long before it happens

Zec

tillytop

Thanks Zec!

Tilly xxx

stickywicket

TT, I'm still reading.

You're obviously going through a really tough spell and I do hope you get some relief quickly. Try not to worry about what meds may or may not be an option. As long as you can find something that works in the end that's all that matters. I've taken methotrexate for years (first 22.5 mgs and now 20mgs per week) with hydroxychloroquine. Maybe something like that will help. Whenever I've been in a real meds pickle I've always found there are other options. I do hope you get some relief soon.

traluvie

Hi Tilly..

I read and i listened.. as you know i am fairly new to all this so i am unaware of all the tablets and things that have to be taken .. I am learning so much from just reading ppls threads..
I just wanted to send you big hugs(((((x))))) and say that i hope you find some comfort soon and that the right meds will get sorted so you can have a better quality of life...
Thinking of you..

jillyb1

Hi , Tilly , really feel for you ; nothing is ever straight forward is it ? At the end of the day , only you and your beloved know what you've been through and how you feel . I always take my hubby into all my appointments , they seem to listen more if there is someone to help fight your corner and really empathise what your needs are . Write a few notes too so you don't leave anything out ; be strong and get across how bad the pains are . Lots of positive thoughts sending your way ! Jillyb

caterina57

Hi Tilly
Why is everything always such a struggle and a worry. Keep positive though and I am sure that it will all turn out for the good
Cath

julie47

Hi Tilly
I also read and listened. A big hug for you(((((((((())))))))

Just keeping my fingers crossed for you that you get the treatment you want and that it helps.
Try to stay positive and take care
juliepf x

katie5

hi tilly

don't really know about the meds and things but wanted to say i hope everything goes ok - take care

Katie x

madwestie

Tilly don't beat yourself up about it the arthur is bad enough on it's own it doesn't need your extra help....
You made the right decision for you at the time that can't be wrong and whatever happens in the future happens you don't have a crystal ball(well if you do can i have saturdays lottery numbers please)
Can you try injected methotrexate as I was told you get more of the dose i think something about not going through your tummy. I also take metho 25mg injected and hydroxychloroquine like stickywicket.
All you can do is make sure the rheumy knows how things are and i am sure it will all work out for the best.
Feel free to get it off you chest whenever you need to we are always hear to listen(and read).

Tracey

skezier

Hi Tilly,

Oh flower its biting at you just now. I wish you felt better but the rumo sounds on your side and they tell me that's the important thing. I so hope you get the funding and you might as you have been on it before its got to help not hinder you in a fair world.

With hospital budgets being cut by 20% it all becomes a bit scary eh?

Hang in there flour and maybe it will all go smoothly in march. Dis you say the date cus you know we be there for pocketing. ((((( ))))) and love the woolly ones and their best mate the sheeparized deer Oh cuppa on the bench my friend xxx

salamander

Hi Tilly

It's so tough to make the decisions about drugs. They are scary but so is the RA. I've just started Cimzia and have very mixed feelings about it.

I can't see why the funding won't be available and I shouldn't worry about your DAS score, I was told it was 'only a recommendation' and if the rheumy thinks you need it you will get it. Sounds like he is quite supportive. Obviously they have to take into account the meds you are currently on and will realise you are better than you would be without anything. Mine said it is always difficult with peeps on steroids as they mask so much and that was taken into account. My way of arriving at a decision was to put it off until it became obvious and it did! Best of luck with it all.
Sal

tillytop

Thankyou all (Zec, Stickywicket, Tracy, Jillyb, Cath, Juliepf, Katie, Tracey, Cris, the woolly ones and the sheeperized deer, Lynn and Sal) for your replies and for your encouragement! It is much appreciated.

Although, in the past, I have taken pretty much all the available meds, with varying degrees of success, I know that I am one of the lucky ones, both in the sense that the two anti-tnfs did work for me and that I still have potential options available. Whilst doing my best not to worry too much, I will spend some time during the next few weeks doing a bit more drug research and some serious thinking so that I am fully prepared for my appt when it arrives.

Thanks again.

Lots love Tilly xxx

barbara12

Hi Tilly
Yes I did read all your post, I really do feel for you, I am the worlds worst at decision making, like you say funding is getting tight.
I wish you well, and hope you get the right treatment for you, hopefully others will be more help with the meds.
Love and lots of hugs ((((())))
Barbara x

ironic

Hi Tilly,
I am so sorry to see that you are still going through such a rough ride with everything. If you feel up to it you could try the 20mg mtx for the last few weeks before your appointment, but only you can decide on that. Could you get in touch with your Rheumy nurse and see if they could give you some reassurance?
Gentle hugs,
Lv, Ix

tillytop

Thankyou Barbara and Ironic for your replies. Much appreciated. I think, Ironic, that, if things are no better, I will increase to 20mg because at least then by the time I go to my appt, there is no question that I will have given the mtx a really fair try. Good idea about contacting the rheumatology dept in advance of my appt, although they are not terribly responsive. If I can pluck up the courage, I might give it a go though.

Thanks again.

Love Tilly xxx