Save biologics for later?: Hi all, when I saw the... - NRAS

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Save biologics for later?

avocadothrower1 profile image
8 Replies

Hi all, when I saw the rheumatologist in May I'd been in terrible pain since September. She switched me from oral to subcut Methotrexate & ordered all the blood tests needed for biologics to be done before next appointment later this month. Well, praise her soul, the MTX injections seem to have done the trick and I am much better. My question is: if she offers biologics at the next appointment should I accept oreould it be better to save them as a later weapon should things turn nasty again? I've had RA for 11 years & generally done well when mess are tweaked. .

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helixhelix profile image
helixhelix

I was in that position a few years ago, as meds just didn't seem to be controlling things fully. Similarly the consultant started the discussion about switching to biologics. But by the next appointment things had calmed down again. So basically I no longer met the criteria and wouldn't have been eligible anyway - even if I had wanted to switch. But I had decided in my head that I didn't want to switch unless I had to (ie the disease got out of control again).

As you well know, what works for one person doesn't for another and biologics are no different. So I was happy to stick with the devil I know. But more importantly for me, biologics just wouldn't suit my lifestyle. At that point I was travelling a lot and keeping drugs cool would have been difficult. And I live in a very isolated spot, far from medical services, so I was worried about the higher risk of serious infections with biologics than traditional DMARDs, especially as I often have cuts & scrapes from gardening.

So a personal choice, but one that suited me at the time. If I had met the criteria I might have felt differently about it, as the times when my DAS has gone up to 5.3 have been horrid!

avocadothrower1 profile image
avocadothrower1 in reply tohelixhelix

Yes, thanks. I travel a lot too & that was a concern. Will see what unfolds. Always good to have some tanks parked on the lawn for later if needed.

oldtimer profile image
oldtimer

If you have settled down on methotrexate you are very unlikely to be offered biologics - you would not be eligible under the present rationing scheme.

nomoreheels profile image
nomoreheels

I often think to myself when someone is wishing they could jump to biologics (unless for good reason of course) don't wish your time on DMARD meds away...biologics to me are to some degree last chance saloon meds, though there are a few to go at. That's not to say they're not necessary for anyone who hasn't been controlled well enough on DMARDs or have horrendous side effects from them... as long as they've tried & they've failed. It's just that biologics don't come without potential problems either, says me who's clinging onto DMARDs! Having read that back it seems rather daft but personally (speaking as someone who MTX has worked well for) I'd prefer to remain on it for as long as it works, coming up 7 years now at varying doses as the disease dictates. I think you need to ask the question of your Rheumy, though you'll have worked out I agree with you that they're "later weapons". Pleased you're better on subcut MTX though, & that might be the decider anyway considering the qualifications needed.... DAS score of 5.1 or over on two separate occasions a month apart & failed two DMARDs, MTX being one that you need to have tried & failed on, if it's controlled the disease enough you may not reach that & that can only be good news. ;)

Beaches2 profile image
Beaches2

Hi, am really pleased for you that mtx now appears to be working. The way I see it is that you want to have this disease tightly controlled with the least amount of toxic meds you can. So if mtx is working well for you then there is no need for you to go onto biologics which can bring you a whole new lot of concerns. I remember praying that mtx would kick in for me and feeling sorry for those who needed to self inject biologics......now of course I'm one of them! I suppose there is also the " save it for later" thought......you have far more drugs to choose from in future should things go bad. I've already failed on dmards alone and enbrel and I'm only 3 years in so I do worry a little about my current biologic, abatacept, failing.....at the moment it's working well thank goodness.

avocadothrower1 profile image
avocadothrower1 in reply toBeaches2

I'm sorry that the disease has been so hard on you. I have been one of the very lucky ones and before the latest flare had been in remission & down to a vey small dose of MTX only. I think I've already decided that if it isn't badly broken don't fix it and if my Rheumatologist agrees will stick not twist.

Beaches2 profile image
Beaches2 in reply toavocadothrower1

Hi, well it was difficult for the first year....horrid in fact.....but now I'm fine and although remission hasn't actually been said, I can do everything now that I could before this hit. Perhaps just a bit more tired.....and I don't have any drug side effects now.....so all good and self injecting is a doddle....it just sounds a bit scary! I think you're right though to stick with what's working, don't rock the boat 😊

AgedCrone profile image
AgedCrone

As I understand it you have to have failed on 3 Dmards before you become eligible for Biologics & your pct has to rubber stamp it.Your lab readings also have to be above certain levels.

On the other hand I seem to get a different story from every body I speak to in the rheumatology department!

I am in unfortunate position of having failed on 4 Dmards, & if blood tests I had yesterday show the correct levels I am due to have an infusion next week.

I was on Mtx for 7 years & would have been happy to remain on it, but side effects appeared out of nowhere & here I am waiting to start Biologics.

If you are given the choice I'd stay with the devil you know!

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