Biologics: Hi all! I had a F2F appt with my... - NRAS

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Biologics

Sjhoney profile image
21 Replies

Hi all!

I had a F2F appt with my rheumatologist today. I’m moving on to biologics and was wondering if anyone had any advice, hints, tips etc?

Feeling positive 😊

Sarah x

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Sjhoney profile image
Sjhoney
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21 Replies
Neonkittie17 profile image
Neonkittie17

Just be aware they do compromise the immune and all depends on which one but do look forward to it controlling the RA! Be aware of side effects you may feel and keep a note and keep your Nurse informed but don’t go looking for side effects that aren’t there. Good luck. 🙏🏻💗x

Sjhoney profile image
Sjhoney in reply toNeonkittie17

Thanks, good advice! I haven’t looked at side effects yet 🤔

Neonkittie17 profile image
Neonkittie17 in reply toSjhoney

Hoping this is going to be a big improvement for you whichever med is chosen. 🙏🏻💗

Tummy can be less stingy to inject .

Make sure everyone shuts the fridge properly (of you have injection pens).

Don't overthink things (im speaking for myself here).

If you get below 2 pens left get into it and enquire, things can go amiss even after months (again speaking for myself ).

Get use to having to tell health professions what they actually are and what they do (my GP said as they are only prescribed by consultants they don't have much to do with them) .

Be proactive about infections (for example i bought some urine test strips so tested for urine infection and caught it early). Get a thermometer etc.

Hope they help you, sure they will x

Sjhoney profile image
Sjhoney in reply toMarionfromhappydays

Thanks! It’s only me and hubby so the fridge thing should be ok 😄

I know what you mean re gp, I had a few weeks of getting them to take me seriously 🙄

Still feeling positive 😊👍

Cutes profile image
Cutes in reply toMarionfromhappydays

Hi just to ask you about injecting in the tummy area. Since my hospital have changed over to Imraldi injection pens, I have found the pen doesn't work on my tummy - it just sinks in without releasing the needle and I am not over weight by any means! I much preferred the 'Humira' pens, which required one to press the button at the top, to release the needle, which usually worked fine on the stomach area. I assume though you haven't had the same problem? I therefore always have to inject in my upper leg, but just try and vary the exact location as much as possible.

Marionfromhappydays profile image
Marionfromhappydays in reply toCutes

I inject benepali which sounds like your imraldi pen where I have to press the whole pen down rather than pressing a button (button ones are SO much easier aren't they); I grab a chunk and then press pen into that.

I have got something to grab though so 😃.

The healthcare at home nurse said it was ok to grab a chunk just as long it wasn't being injected into and scars or stretch marks etc.

I do sometimes do my outside thigh where I dont have to grab it but I found it stung alot more and was a bit painful. But it might just be benepali as a few people say the injector pen on that one is badly designed.

Mmrr profile image
Mmrr

I found biologics much cleaner medications than the traditional DMARDs, by that I mean less feeling 'yeuch' after taking them, much fewer side effects and less fatigue.I hope they work well for you.

Sjhoney profile image
Sjhoney in reply toMmrr

That’s great news! Thank you 😊

MagsLough profile image
MagsLough

Be patient, it took almost 3 months before I started to feel the benefits of mine (benepali) although I’ve heard from people who felt better almost immediately.

Hopefully you’ll be in the latter group.

matazz profile image
matazz

Hi I have a face to face with mine in September I think I will be going the same way , is it correct you have to have so many swollen joints to be put on biologic s?

Scottishlad profile image
Scottishlad in reply tomatazz

As these medications are quite expensive you do need to meet certain requirements before they are prescribed. The measure used is DAS 28 which combines an assessment of the number of swollen and tender joints with blood tests to measure overall inflammation levels.

I'm sure you can find more information on the NRAS website.

matazz profile image
matazz in reply toScottishlad

Thankyou for that ill have a look I have been on leflounomide for the last 5 years and it has worked really well until now , I have been on methotrexate, sulfaslazine, hydroxychloroquine, I think this is a last resort as in nothing left I don't consider myself to be too bad at the moment not using any immune suppressants at all just Cox 2 inhibitors arcoxia for pain relief I'm a bit sore in the morning but generally just a few aches and pains so not sure what they can do for me I have also had a few depo injections .

SlothSandpit profile image
SlothSandpit

My biologic has been amazing. My main piece of advice is to inject in the evening so that you can sleep off some of the tiredness or any potential side effects.

stbernhard profile image
stbernhard

I read up on the available biologics and their workings on the NRAS website. I found that very helpful in my conversations with rheumatology. It helped me understand what they were telling me and I could contribute as well. Good luck. I hope you get one that works for you.

Cutes profile image
Cutes

Hi, i started anti TNF treatment (which is think is considered a 'Biologic' about 12 years ago, initially by infusions at the hospital. Two days after having my first dose, I slept through the night for the first time for years, i.e. without pain. I eventually changed over to self administered injections; Humira and now Imraldi (essentially the same drug I think). I have had some infections along the way and have had to stop the meds for a few weeks or even months at a time, but always feel the need to go back on them eventually. It will hopefully make a huge difference to your life in general - good luck with it.

Brikel profile image
Brikel

I have been on biologics for a number of years ( Benepali)It makes a huge difference. Plus I haven’t had any side effects.

It can be a bit painful with the injections, but as others have said, it depends where you inject.

Hope this helps

Silverpixie profile image
Silverpixie

I had 4 biologics which didn't work (or worked for a couple of months and then stopped). The 5th one worked and has transformed my life. This took 4 years. You may need to try a few before you find "the one"

matazz profile image
matazz in reply toSilverpixie

So pretty much the same as all the immune suppression drugs then trial and error along the way see what works for you as we are all different aren't we 🙂

matazz profile image
matazz

Thanks everyone ☺

Brushwork profile image
Brushwork

Go with an open mind.Be informed, there is a lot of information available for each of the drugs.

Be hopeful.

Keep notes about your progress.

Be kind to yourself.

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