Biologics?: I am new here and I have the opportunity to... - NRAS

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Biologics?

Brede profile image
18 Replies

I am new here and I have the opportunity to go on these biologic drugs by injection. It is just like the diabetic injection you do your self so no big deal.

Methorexate was working for my RA for years but I was having operations for nodules on my arms and hands which kept re-ocurring! So last July they replaced it with Arava and after a few months my blood pressure soared and my hair was thinning out dramatically. So I have now stopped that and take Meloxicam which I have always done and started Plaquenil. I am not in much pain apart from my knees and shoulders.

I am not keen to take these new drugs, what experience has anyone had? it would be helpful to know. Many thanks Brenda.

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Brede profile image
Brede
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18 Replies
ruth_p profile image
ruth_p

For me they've been great. When I started on Enbrel it got me off steroids, which I'd been taking for 12 years. I teach full time and exercise regularly. I still take mtx but am no longer leflunomide as well. As for the type of injection it will depend on the biologic. Good luck.

Jewels94 profile image
Jewels94

I don't know much about diabetes injections but I'm on enbrel. I inject myself once a week and my rheumatology nurse talked me through my first injection. I've been on enbrel a few years now and have not noticed any side effects. The benefits have been good.

keeta profile image
keeta in reply toJewels94

Hi i am just about to start enbrel. Can.t take mtx but will stay on slz its good to hear youve done well on it .i was so worried .mtx thinned my hair attacked my blood lungs and liver .i was so unwell .and slz just did nothing by itself forr me ..i find it all very confusing and frightening when you read about them all. Thank you .kathy .gentle hugs x

scorpiojack profile image
scorpiojack in reply tokeeta

Hi I've been on Enbrel for 5 weeks now and I feel really good. Good luck to you!

keeta profile image
keeta in reply toscorpiojack

Thank you so much x

scotslass333 profile image
scotslass333

Hi. - have you got the NRAS booklet about Biologics? It gives you a lot of useful info.

I've had Adalimumab which didn't make much difference to me but I seem to have a not-typical form of RA anyway. Now I'm trialling abatacept but too soon to tell if it'll work. It's a bit hit and miss with all these drugs, until you find the "right" one for yourself

They're very strong and do have side effects and risks, so you can only be guided by how severe your RA is, and what your consultant advises.

The injections are easy, no problems there.

Zoe-richardson profile image
Zoe-richardson

They are life changing x

farm123 profile image
farm123

Biologics have made all the difference to me. Cannot tolerate many DMARD drugs but biologics have been my lifesaver. Again it is not one size fits all and may take time to find the right one for you. Some people have syringes and others pens whilst a few treatments are infusions type. I had more side effects from the DMARD group. There is not a long drug history with some of these drugs but for quality of life now they are worth it to me. I was around 37 when I first started on Enbrel in 2003 which for me lasted for 7 years before a long couple of years trialling various ones until Abatacept in 2013. You may not be back to the same as life before RD but much more manageable. Farm

Fra22-57 profile image
Fra22-57

Some are pen like where you just push against your thigh or stomach and press the button and odd one I saw was a syringe.Also there are ones you have by infusion.I tried Enbrel,HumIra and Rituximab and all without success.Unfortunately I have other health issues now so can't have

Everyone is different to react to these drugs too.some work for so long but I wish you well in whatever you choose

GemsfromWarks profile image
GemsfromWarks

I have been on Enbrel for about 8 years. Recently changed to Benepali. Also have mtx injections. No problems. I am in remission. Few flairs. Am now reducing mtx an have halved it so far. Also take diclofenac and have not been able to reduce it with out problems. Only have a steroid injection occasionally when in a lot of pain with a knee replacement that is not right. I have used pre filled injections and 2 different pens. All good. I am so glad it works for me. Also lost 8 stone with slimming world. All good at the moment. I was in so much pain and had joint damage before my RA was stabilised. I trust my specialist and am so glad he got me onto biologics before I had any more damage.

messylou profile image
messylou

Hi I have been on abatacept (biologic) injections for fifteen months they have made a big difference to me. I have had to stop them twice due to water infection. And once due to chest infection, but you can carry on with them once you have finished your antibiotics and your symptoms have gone. I have had a steroid injection whilst on them when I had a flare but for me they help me to be able to move around better.

Aless2002 profile image
Aless2002

Hi Brede,

I've tried about 6 biologics over 10 years - various results. Some worked for a while then stopped working. Only one didn't agree with me at all. I'm also on MTX. I've been on Simponi for about 4 years now and so far so good (fingers crossed etc!!!). I think you have to be prepared to try till you get one that suits you. I was told at the time I started the Simponi that it was the last one left for me- now there are several new ones, so hope continues!! I have never been on cortisone, and the biologics have made my life liveable. My PsA is wide spread, but I am blessed to have few skin problems. Hope this helps.

eastbournelady profile image
eastbournelady

i have tried quite a few some worked to a point and others i reacted too but eventually i got put on one called simponi which has helped the overall pain levels but have to watch out for little infections as i seem more prone to coughs colds etc on it good luck its worth trying

popsmith1874 profile image
popsmith1874

Been on Benepali alongside mtx for 7months now improved a lot but still get bother with hands and fatigue but better than I was

James53 profile image
James53

Hi Brede - been on Benepali now for 16 weeks. Greatly improved mobility and pain too. Injection pens pretty easy to use. What's not to like?

chamonix profile image
chamonix

Hello, I was unsure too, but I and body started not to get on with metho inj. I am on benipali inj and feel loads better, just had odd flare since starting, rather than feeling rough all time. The injection stings for a few seconds and thats it. Its much easier than the metho injection.

Good luck

SassyRA profile image
SassyRA

Hi just wanted to know what Biologic you started on & how’s it working for you, it was just suggested for me

Dianne123 profile image
Dianne123

If you aren't keen on the new drugs have you considered gold injections? It has the same efficacy as mtx but does not affect the liver, cause hair loss and is less likely to affect the lungs. Also does not have to be stopped during an infection. Can be combined with other dmards. I have been taking for over 30 years and take it with hydroxychloroquine and sulfasalazine. My crp is generally below 3 and esr below 10. I haven't had a flare in over 10 years. My doctor was going to add mtx to dmards but after reviewing my xrays determined my joint damage is old. Was originally only treated with nsaids 30 plus years ago when doctors were more worried about side effects. I have no morning stiffness, work full time and lift weights 3 times a week. Gave me back my life. Many people do get side effects and can't take it but others are put into remission. My doctor has some patients who have taken for 50 + years. The side effect profiles of drugs are never fully known until thousands take a drug for many years. If you google Actemra and deaths you will see that there is a push to expand the warnings on the label. Good luck.

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