Which biologic should I pick?: I went to see my... - NRAS

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Which biologic should I pick?

smilelines profile image
17 Replies

I went to see my rheumatologist yesterday. I felt like I was in a whirlwind. Leflunimide is not working very well and I have been on it for almost year. I swear it stopped working after my second covid vaccination. She said last appointment we would be adding hydrox or sulfasalazine. So the first thing she says in my appointment is she is changing my diagnosis to psoriatic arthritis. Then she says that we now have options of the biologics. So she says I should pick one and rattles of whether I want pills, injections, how often do I want the injections or do I want infusions. And then the side effects and on and on. I absorbed so little of the information. One thing she said was that one of the biologics can cause MS! My husband has Primary Progressive MS so when she said the word MS great fear came over me and my comprehension on the conversation went practically to zero. That surely cannot be a common side effect and maybe it is not actually related were my thoughts. Why would a biologic that can cause MS even be used???? I told her that I had thought I was deciding between the sulfasalazine and the hydroxychloroquine and had decided on the hydroxychloroquine. She said that it takes 6 months to work so she would write me a prescription and see me in June if I wanted to do that. She said that it is unlikely the hydroxychloroquine would work. Anyhow, I left with an appointment end of January to tell her my decision. I am suppose to be deciding if I want to go on Stelara, Tremfya, Cosentyx, or the other two DMARDs. Has anyone tried any of these. I seem to always leave my appointment with regrets on not asking enough questions. It is an awful feeling and it keeps happening. Everything is so rushed and overwhelming.

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17 Replies
helixhelix profile image
helixhelix

These are all drugs that target the different Interleukins, so used more for psoriatic arthritis. And all of these have risks - small but they are there. However you can’t tell whether that particular risk will affect you or not, so really not that much help knowing. And you can’t tell which one will suit you best either - so I chose mine by which suited my lifestyle best!

The biggest thing with these drugs is that they do compromise your immune system so you will be more vulnerable to passing infections.

smilelines profile image
smilelines in reply to helixhelix

Do all biologic injections hurt? Methotrexate did not hurt at all but I have read people find biologic injections can really hurt.

helixhelix profile image
helixhelix in reply to smilelines

Enbrel stung like &*(£ to start with, and I used ice packs to make it bearable. But very strangely it no longer hurst at all - as long as I have it out of the fridge for a few hours before. I think the difference is that I relaxed…

smilelines profile image
smilelines in reply to helixhelix

It sounds like it is worse than being stung by a wasp you know is going to sting you. Jeeez. Maybe your body got accustomed to it.

helixhelix profile image
helixhelix in reply to smilelines

No, I do really think it was just that I no longer tenses up expecting it to hurt…

And far better than being stung by a wasp as only lastsed a few seconds!

smilelines profile image
smilelines in reply to helixhelix

good to know!

Hi Smilelines

I'm on Adalimumab (Imraldi) biologic for psoriatic arthritis and psoriasis. This is a copy of the biologic, Humira.

It has been amazing for me. I was worried about the risks but my quality of life is much better. I inject this every two weeks.

My skin cleared completely and is still good. I had nearly two years free from joint pain but some crept back 6 months ago...manageable though with steroid injections now so I'm sticking with this biologic a bit longer.

I was warned that it carries a risk of MS and also a risk of lymphoma, but very small. I had blood tests before starting to check I did not have latent TB as it can be reactivated, apparently.

Like you I felt nervous. I've been injecting every fortnight since August 2019. I didn't really have a choice of biologic (I'm in Scotland, It looks like you're in Canada?) but have been told if Adalimumab stops being effective I can try Stelara next.

Yes as Helix says your immune system is compromised by the treatment. Personally I've been ok, just had a few minor sinus problems: if I had a cold it seemed to affect them more than usual.

It is horrible feeling rushed at the outset of a new treatment - I've been there when the questions are swirling around in your mind afterwards. It sounds like you need more information at your next appointment at the end of next month and you can hopefully have a fuller discussion of options and potential side effects. Good luck!

Best wishes, Lindsay 💫

Madmusiclover profile image
Madmusiclover

Read up on all the different medications on the NRAS website. (They can send you a hard copy too) There is a downloadable booklet. You can also phone their helpline to talk it through.

Madmusiclover profile image
Madmusiclover

Hopefully this is the link: nras.org.uk/product/medicin...

Fra22-57 profile image
Fra22-57

Same with me when I had to choose a biologic.It’s like a reversal of doctor and patient.Annoys me as they are the doctor and should know what to put you on but they take it out their hands.Good job there is Google to help ! Well a biologic on own didn’t help but then my consultant thought he had already prescribed hydroxychloriquine for me before.I must say that really helped and I was am still on that plus sulphasalazine.What ever you choose I hope it works for you

smilelines profile image
smilelines in reply to Fra22-57

Are you on a biologic now or just the hydroxychoroquine and sulphasalazine?

Gilliancheche profile image
Gilliancheche

I have been using COSENTYX since end of July. I did get quite a few headaches for the first couple of months but persevered. My symptoms have improved buy not gone so from this month have been advised to double the dosage. But nervous but will give it a go. Am limited in choice of meds as have melanoma so anti- tnf meds are not suitable.

Helen-NRAS profile image
Helen-NRASModerator

Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.

Pinegap profile image
Pinegap

Hi I took cosentyx for 2 years and found it a less painful injection and beneficial. Unfortunately it became less responsive over time , but I would definitely recommend it. Hope this helps

smilelines profile image
smilelines

I have read some injections of biologics really hurt. Thanks for your help.

in reply to smilelines

I inject Adalimumab and find it much more stressful (terrified of messing it up as so grateful to get it and it‘s costingtheNHS so much) butI find it much less painful than the metoject I injected previously which regularly made me cry. I read somewhere that the stinging is due to the buffer used for some of the biologics so I think it may be dependent on the version you get if that holds true?

chunkypie profile image
chunkypie

Ive been on Cosentyx via a pen and had no problems with it. Im now on Adalimumab also via a pen and once again i have had no problems what so ever. Good luck with what ever choose.

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