Biologic

[Beata0102]

Hi. How long did you wait to receive the first biologic injection after the doctor made the decision to switch from DMARD to biologic???

[helenlw7]

I’m on my 3rd biologic and can’t remember for the first two, but for the one I’m on now. I saw my rheumatologist on April 30th, when she decided I should try Cimzia. and I started it on May the 11th. I think this was much quicker than the other 2.

[Beata0102 in reply to helenlw7]

Thank you very much for your answer. I hope it will go as quickly for me as it did for you.

[Runrig01]

7-8 weeks, from it being mentioned, and having blood tests and X-rays. The TB blood test is sent away, and takes around 3 weeks. If all tests are ok they then apply for funding, most hospitals hold funding meetings weekly or fortnightly, where it gets approved. They then send a prescription to the delivery company they have chosen. Once they process that, they will arrange delivery of the injections, followed by another date for the nurse to come and teach you how to do them. So unfortunately it’s not a quick process.

[Beata0102 in reply to Runrig01]

Thank you very much for your answer

[HeadInASpin]

I was told yesterday that it will take about six weeks. I had a pred injection to tide me over.

[Beata0102 in reply to HeadInASpin]

Thank you very much for your answer. Unfortunately, they won't give me steroids because I have psoriasis and they're afraid that I'll have again psoriasis

[Sapphire1701]

hi, I started biologics in March and it was about 3-4 weeks for me after Consultant appointment. I asked on here too about the time and it sounded like it was different for everyone.

So really hope it doesn’t take too long for you. Biologics have been game changing for me, so really hope so for you too. All the best x

[Beata0102 in reply to Sapphire1701]

Hi. Thank you very much for your answer. I hope it will go quickly for me too and that it will help me because since December I have only been able to walk a little with a crutch. Thank you

[Sapphire1701 in reply to Beata0102]

Oh bless you, that sounds very tough.. just before I was diagnosed I had to use a crutch to walk too. Up until starting the biologic my knee pain was constant, but after one injection it improved hugely, literally overnight. I appreciate it’s different for everyone but really do hope it helps you. This disease really is so tough. Big hugs to you.

[Beata0102 in reply to Sapphire1701]

Thank you very much, I hope that the biological ones will help me quickly too

[pammi2]

2 months

[Beata0102 in reply to pammi2]

Thank you

[Haz58]

My wait was about 3 to 4 months. It takes the NHS ages to agree to it once the rheumy requests it! I'm in Coventry.

[Beata0102 in reply to Haz58]

Thank you

[Leics]

I waited 5 months but I guess I’m just unlucky any change of meds for me takes an age and the quickest was 3 months. It depends where you are in my opinion. I hope you don’t have to wait long but I’ve usually had a review with consultant and had to have a good moan about zero meds and being in a bad way before things get moving. I do realise however that it’s lack of staff that’s half the problem. I would definitely be prepared to fight your corner if it’s more than a couple of months.

[Otto11]

Hi they have to do bloods x Ray prior to starting any Biologic meds. They test for Latent TB as it has the potential to reactivate it on Biologics. Unfortunately I tested positive which meant 6 months of triple antibiotics prior to commencing Biologics. It will vary from hospital to hospital & depending how long funding takes to come through.

[skinclinic in reply to Otto11]

Same issue here . I worked on s TB Unit in the early 70’s and because of this I had a lung scan which flagged up granulomas in my lungs

That was followed up by the blood test which showed up Latent TB

This was in early December last year

Then it took until March to get me on the 3 months supply of Rifina antibiotics

These meds sent my RD into hyperdrive with only Pred and ibuprofen to manage the pain ( no other dmards prescribed)

Eventually I started bio similar drug in June but then I had a dental abscess ( the last abscess 5 years ago actually triggered RD )

So at the moment I’ve been on the bio similar fortnightly injections but to date there’s no let up with my symptoms but at least 2 prednisone tabs a day are controlling the pain but obviously not the inflammation

I’m waiting patiently for the day that the Biosimular kicks in !

[Otto11 in reply to skinclinic]

Oh bless you what a pain. I was desperate to start Biologics so it was a real blow. That was 21 years ago so I can’t recall what they gave me for the pain for those 6 months. As I was under Proff Emery who was was the one who did all the trials with the first Anti TNF Biologics he said that as he made the guidelines he was changing them for me & I only did 4 months. He believed the reason for positive result was that I had been vaccinated for TB twice. Once at school then again before my nurse training. I had a dental abscess a few years ago & lost my tooth. I really hope your meds start to kick in really soon 🤞

[Neonkittie17 in reply to Otto11]

I was asked by my consultant who worked with him to go on the Enbrel trial under Professor Emery, but I declined as I was doing very well on solo Mtx. Think that was 2002.

[Otto11 in reply to Neonkittie17]

Hi yes I started Etanercept ( Enbrel) in 2003. So timing fits. Are you still in Leeds?

[Neonkittie17 in reply to Otto11]

I’m from Leeds, it’s my city of birth and I lived there almost 30 years, but now I live just outside the postcode and I go go a smaller hospital. My former senior rheumy (Hordon) and one of my current ones (Miles) both came from the LGI and knew/worked with Prof Emery, as did my former senior rheumy nurse Patricia Le Gallez (amazing lady). She told me in 2001 around the time of Enbrel being trialled that I could go to Chapel Allerton if I wanted to do that and be their patient, but I chose to stay where I was. I have been in the past to several of the patient NRAS meetings at CA and met some of the rheumy staff over the years. Shame those meetings stopped.

[Otto11 in reply to Neonkittie17]

I’m currently at CAH I moved from St James under Dr Martin in 2002 I think to start Biologics. It’s all changed a lot over the years not like it used to be when everyone knew who you were. x

[Neonkittie17 in reply to Otto11]

That’s a shame re losing the personal touch, as CAH is small compared to many Yorkshire hospitals. Mine is larger than CAH but still classed as a small hospital. It’s why I’ve stayed there as they have the connection to Immunology for rheumy referrals at St James’ and also my local rheumy staff know who you are as a patient. x

[Otto11 in reply to Neonkittie17]

It sounds good. I still consider myself lucky tbh as the Consultants do know me as I'm a bit complex & some of the nurses but not all as they have all changed over the years. Its also more accessible than city centre hospitals. Take care x

[Neonkittie17 in reply to Otto11]

Yes, much easier to park there than central Leeds. Always helps if the rheumy staff know you well. My biologics rheumy and biologics nurse sister are amazing. They listen to me and respect me and that makes a huge difference. Hope all goes well with the rest of the Abatacept infusions. My syringes should be arriving tomorrow. 🙏 Take Care too. x

[Otto11 in reply to Neonkittie17]

🤞you get your syringes. I have my next 2 booked in thanks x

[Neonkittie17 in reply to Otto11]

Thank you, I got a text from Lloyds this evening saying they’ll deliver them tomorrow. Glad you’ve got your next two infusions booked. x