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Starting on biologics next week

(19 Posts)
NaturalBornWoman Thu 30-May-19 21:38:48

I have psoriasis, psoriatic arthritis and ankylosing spondylitis. I've been on methotrexate for 2 years and it's not working well enough. I have high hopes but I am a bit anxious about it. Anyone on them with life changing results?

mirandaspanda Thu 30-May-19 23:42:31

I just want to wish you luck. I am due to start in 2 weeks time - PSA. I have spoken to many people (including one with AS) who have said it was life-changing. One man said he had been wheelchair bound when he started, he's now fit active and travels the world - notably his immune system has not been compromised in terms of getting loads of infections.
However, I also know 2 people who have advised me that they can cause dramatic weight gain and have made them very vulnerable to infection.
I decided to try and see how they impact me - I have tried methotrexate and another DMARD but they keep wiping out all my blood cells. If I find any adverse affects I will weigh up how to move on.

NaturalBornWoman Sun 02-Jun-19 07:44:03

Thank you! The vulnerability to infection is is the scary thing. I hope you get on with them too.

LadybirdsAreFab Sun 02-Jun-19 07:56:12

I started on Enbrel 3 weeks ago (had 3rd injection yesterday). Was told it would take at least 4 weeks before I noticed any improvement. Well, by day 5 I noticed my wedding ring was loose, I could curl my fingers again. My face is less puffy. I went swimming and my shoulders worked! Managed to swim 20 lengths before boredom set in (shoulders still not sore). I have reduced my prednisone and I hardly take any brufen, I take less panadol. My weight has reduced. I have the energy to cook proper meals. Places don’t hurt that I didn’t realise hurt as I lived with the pain. Life changing.

bodgeitandscarper Sun 02-Jun-19 07:58:43

My mums been on them for about a year now. She didn't see much difference at first, but the past few months has felt loads better. She's reducing her pain meds and steroids and her weight has reduced if anything. Shes still pretty immobile, but managing. She also takes turmeric, honey and black pepper which her consultant agreed with and also recommended cbd oil. (Rheumatoid arthritis)

BillyAndTheSillies Sun 02-Jun-19 08:08:58

I was on Humira (enbrel) for 6 months but it stopped worked so moved over to Stelara (ustekinimab). My psoriasis is 100% clear after a 40% coverage for nearly 20 years.

I'm off it now because I'm pregnant, but still no flare ups. My consultant has booked an appointment for me two weeks after my due date to restart.

There are lots of different biologics and your dermatologist would hopefully move you around to try different things if one doesn't work for you.

For me, it was a life changer.

NaturalBornWoman Wed 05-Jun-19 15:03:49

They were delivered yesterday. Nurse is coming tomorrow to show me how to use them. Good to hear positive stories, fingers crossed!

Gilead Wed 05-Jun-19 16:53:13

Good luck. I'm going to discuss this possibility with rheumatology tomorrow. Back to walking with a stick full time.

NaturalBornWoman Wed 05-Jun-19 20:45:58

Oh no Gilead, that's shit. I think it varies according to where you are but my rheumatologist wasn't able to get me on them as I hadn't tried 2 DMARDS, only methotrexate. She referred me to dermatologist and he's let me go on them straight away, even though I've got hardly any psoriasis at the moment. Clearly she knew it would be easier for him, and she said this is called playing the system. It's crazy but a bit better now some of them are off patent I think. Good luck to you!

mirandaspanda Thu 06-Jun-19 17:45:23

Good luck! Mine are being delivered next week and I have a nurse appointment too. Let me know how you get on.
Gilead - I only had 3 months on one DMARD and 3 on another. I know they impact my blood cells (red, white and platelets) a lot and I was having a massive increase in symptoms too - I don't quite know how I "met" the criteria.

NaturalBornWoman Thu 06-Jun-19 23:06:36

I had my first dose today. 2 pens. Stung a bit but feeling fine, no immediate adverse reactions.

Durgasarrow Fri 07-Jun-19 06:57:10

Absolutely lifechanging. I was walking with a cane and now I'm walking like my old self again! So much less pain!

LadybirdsAreFab Fri 07-Jun-19 09:43:31

Try putting an ice pack on the area about 5 mins before injecting and I was told to take the injection out of the fridge 30 mins before using. The stinging is almost non existent now after injecting.

NaturalBornWoman Mon 08-Jul-19 10:03:55

I've had 4 doses now, due the next one this week. My psoriasis has completely cleared, however it wasn't very bad before I started. I haven't noticed any change in my joints or how I'm feeling generally yet but I guess it's still early days. The next 2 injections after the first loading dose were incredibly painful, to the extent that I got myself in a bit of a state last time and it took me an hour and counting down with my husband in order to do it. Then the pen didn't fire. I took another one out, waited half an hour and did it, and it was painless. I didn't do anything different. How can it be that some feel like being attacked by a swarm of angry wasps and some are completely painless? Is it just the minute difference in position? I am flummoxed. I have been leaving them out of the fridge to come to room temp every time.

CitadelsofScience Sat 13-Jul-19 13:08:54

Enbrel was fabulous but I was on the original and not the biosimilar, humira not so great but I'm on Cosentyx and it's sort of given me my life back.

I've never really had any bad infections, my immune system seems to have been rampantly out of control and the biologics along with mtx has brought it to a normal level. Even on them my white blood cells are usually raised.

Good luck with it all.

NaturalBornWoman Wed 31-Jul-19 20:07:05

Anyone had any trouble with the supply of their drugs? Mine are overdue and I just keep being told they haven't got the prescription. I saw my nurse specialist last week and she told me it had been done and marked urgent as it was already late. A week later and healthcare at home still haven't got it. I'm going round in circles and I'm quite upset now, I just don't what to do. I've tried phoning the nurse and someone yesterday said they'd leave her a note, but nothing!

MitziK Fri 02-Aug-19 21:39:10

Took mine about six weeks to get the prescription and book a delivery for two weeks ahead. My second delivery was booked at the same time. I did wonder if the delay was due to a problem with supply, as I'd had issues like that with methotrexate deliveries before.

Regarding the stinging, my first one was like sitting on a wasp, but applying a cold pack from the freezer before and after made it only sting for the 10 seconds during and about 10 seconds afterwards. And it was a bit tender when I knocked it a couple of hours later. I think I'll be applying the pack for a bit longer beforehand and making sure the wipe has evaporated next time, just in case that helps.

NaturalBornWoman Tue 06-Aug-19 10:14:27

I've found it's nothing like as painful if I leave it out of the fridge for a good hour beforehand. I don't use the alcohol wipes, my nurse told me not to.

It was my second delivery which was problematic and after a lot of ringing around, including eventually calling my consultant's secretary, he did a second prescription and it was turned around in 24 hours.

I have no idea what happened and worryingly no one seemed particularly interested in identifying the problem as a learning opportunity. I'd had a pen which failed to trigger, and although they were quick to collect that from me, there was no facility in place to replace it, leaving me completely without stock. I ended up taking the dose over a week late, which is far from ideal on a fortnightly schedule. They didn't say take the next one in a week rather than a fortnight to catch up either.

Durgasarrow Wed 21-Aug-19 23:58:20

That is so aggravating! I hope it gets straightened out. These medicines are so helpful.

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