Choosing Your Meds: How do you decide what meds to... - NRAS

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Choosing Your Meds

zimmie profile image
10 Replies

How do you decide what meds to choose.

First few visits probably down to consultant.

Then if they don’t work for you do you get to choose?

You might get offered leaflets for your next choices, then how do you go about choosing.

Myself I tend to google the possibilities, and then choose the least invasive.

I don’t tend talk to other people, apart from my partner, because everyone’s different, plus it can be off putting.

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zimmie profile image
zimmie
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10 Replies
KittyJ profile image
KittyJ

I can’t say I have ever had a choice of which meds to take. I’ve gradually worked my way through the options to find something that works for me, with my rheumys guidance. I did refuse to take mtx when it was first suggested as I wanted to have a baby but did eventually take it as I was left with no choice. I do think things are probably a bit different nowadays as there is much more choice of meds than when I was first diagnosed. This place is good to get people’s experiences of the meds you are being offered but at the end of the day it’s what suits you best and that may be a completely different experience to that which others have had. I hope you find your combo soon 😊

Lolabridge profile image
Lolabridge

I let my consultant suggest the medication and then we discuss why he’s chosen it and any likely side effects. I feel he is more knowledgeable about what is likely to suit me and work for me and am happy to be guided by him. I will research more about the drug after that and raise any concerns I may have.

oldtimer profile image
oldtimer

I look at reliable sources of information (like NRAS) and make a list of the advantages and disadvantages of each. Then I take a decision, then sleep on it before finally taking a decision. I might need some extra information which helps to make the final decision.

But often it is just what I can actually take given the failure with various other forms of treatment and the rationing system for biologics.

AgedCrone profile image
AgedCrone

If you have a rheumatologist that you trust your best move to take what is recommended.

I have never asked for a particular drug.....I have just asked what my rheumy recommends ....he might offer a choice of two.....& I’d choose the one that most easily fitted my life style.

I don’t think it makes a Consultant too happy if patients arrive with a list of what they want to take....kind of makes the doctor feel redundant....& as I’m sure you have read or will read, some people praise a drug that others hate.

So listen to your doctors & they will guide you.

nomoreheels profile image
nomoreheels

It depends how your Rheumy works. Does he offer options or recommend which med he considers is the best for you? You've said he's a fantastic Consultant, be guided by him if you're unsure which med is the better one, the one you'd benefit best from next. He's the one with all the knowledge as far as meds & patients responses are concerned.

We can give our personal experiences but that's what they are, our experiences, there's no saying you'll do as well, or conversely as badly, as we do on them. Neither does your Rheumy come to that but he can give you the pros & cons for each according to your needs/lifestyle. You can read up on them but please if you're considering that keep to reputable UK sites otherwise you risk being misinformed or even biased by side effects you may or may not have. The least invasive may not be the best option for you, but again you may have side effects, you may not, or they may be tolerable but you won't know until you try what's considered the best for you by your Rheumy... you've got a good one, trust him, that's what I'd do. Some ask what their Rheumy would do in your position, I'm not sure that's a fair question given he's not the one with RD.

In the end it's all a suck it & see situation, none are guaranteed to work but I always start a med on a positive, no point taking them otherwise!

charisma profile image
charisma

I was never given a choice unless you include ‘You don’t have to have this.’ But nothing else offered instead, and why not try whatever is suggested?

The whole treatment thing for RA is so much trial and error anyway as each person has different tolerance levels for the same drug.

So, the unwanted effects you experience are probably the best help in deciding if a particular drug is worth continuing with or should you change to another one.

Good luck with decisions!

zimmie profile image
zimmie

Should have stated in post, I’m already on Ritux Infusions.

Have been for last three years.

Prior to that was on various meds for a number of years.

Sorry for the confusion

I leave it all up to my doctors. I've failed on Rituximab which is a b cell depleter but it worked really well for me so they decided to try another. I don't have the knowledge to make a decision despite being a nurse. The immune system is very complicated.

Are you in the UK?

zimmie profile image
zimmie in reply to

Yes, in Birmingham

Brushwork profile image
Brushwork

Hi Zimmie,

I like to take a pro-active part in the decisions, but the Rheumatologist has to follow the NICE guidelines, so sometimes choices are limited by those.

I always research drugs and have stopped taking some, without prior consultation when the side effects have been pretty awful. The Dr's don't like this, of course, but it is my body and my RA, and therefore my decision. Others I have simply refused because the risks were too high - but RA has progressed and with that a realisation that I have to take the risks.

Luckily my Rheumatologist is very understanding and will talk through everything with me.

Good luck.

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