How long did you wait for biologics?

[Blueberry37]

Hi, I've now received a letter saying the severe asthma clinic have referred me for a trial of biologic treatment. My question is how long did it take for you to start the treatment from the referral being sent? Trying to prepare myself mentally for if it'll be another few months but really hoping it'll be before winter. They've said I qualify for two diff ones: Nucala (mepolizumab) and Fasenra (benralizumab) and think that the Faserna will be best.

[Cruet]

once I qualified it was only a couple of weeks for me via Wythenshawe Hospital. I am on Xolair now, and it’s nothing to get stressed about. After being on it for six months, the pre-filled syringes are delivered to the house every other month to self administer. All good, and much fewer hospital admissions 👍

[Blueberry37 in reply to Cruet]

Amazing, I'm hoping it will help me too. Hopefully not too long then to wait.

[Cruet in reply to Blueberry37]

good luck! If your at wythenshawe they are great!

[Blueberry37 in reply to Cruet]

Thanks but not there Our local hospital tends to be good though

[BiologicsB]

Hi Blueberry37,

it won't be long at all and the team will guide you and will administer the biologics for you until you are able to do it at home. The information provided is very helpful and the respiratory team walk alongside you.

I started on Meprolizumab in 2022 and then had to switch to Fasenra's Benralizumab in January this year. My 6 month review for Fasenra is coming up soon.

Its great that we have this forum to ask questions and reach out to others.

I hope it goes as smoothly as it can for you.

[Blueberry37 in reply to BiologicsB]

Thanks so much and yes this forum has helped me immensely! It's so good to know others are in the same situation and getting advice. it's such a supportive forum.

[Karate109]

Hi Blueberry, I live in the NHS Highland area of Scotland and I had to wait a couple of months but every area will be different. I am on Nucala and it has been a lifesaver for me. The first time at the clinic they administered the pen for me and then 28 days later I returned to the hospital and they supervised me administering it myself. After that I get 3 pens delivered to my home and I just get on with it. There were problems with future deliveries but eventually the NHS Cancelled their contract with the supply company and the new delivery company are spot on. They phone me before my supplies run out and arrange a delivery date and 2 hour time slot. I wish you luck and hope you don’t have to wait too long before you start your treatment and hope it improves your asthma massively. Have a great Sunday.

[Blueberry37 in reply to Karate109]

Thank you so much and glad it got sorted for you in the end and that it's running smoothly now.

[Headoverheels]

Hi Blueberry37. I can't throw much light on this but you may be interested in what I have been told.

I had a follow up appointment, on 9th June, after spending 7 days in hospital. The Consultant said I am eligible for biologics but my application needs approval from a team (board?). I was told this may take a few months , around September time. So you can imagine how shocked I was, and delighted, to receive a copy of the letter sent to my GP a week later, stating that I have been given the green light for my application and that I will be contacted with further details and a starting date!

So like you I am also waiting and watching for the postman hoping there is a chance it will all happen before September, but I am content knowing that I am now in the system for biologics. Perhaps these things take time to set up and of course it depends if there is a waiting list in our areas. Who knows?

Do let me know if you hear anything and good luck!

[Blueberry37 in reply to Headoverheels]

I had the same process and it took two weeks for their meeting and approval so hopefully not too long for both of us. Fingers crossed!

[runcyclexcski]

Took me 1 month, but I had to find a "back door" by seeing a private doctor who also had an NHS affiliation.

Xolair helped me (no hospital admissions), but once I moved to Germany they switched me to Fasenra, and it quickly went downhill from there. I am currently trying to switch back, no luck so far. Just came from a hospital, on 40 mg prednisone again... after spending 2 years to wean off it.

[Blueberry37 in reply to runcyclexcski]

Oh no I'm so sorry to hear this.... can they not switch you back? How awful after knowing the Xolair works

[runcyclexcski in reply to Blueberry37]

Thank you, Blueberry! Some folks in this group are much better off than me; prednisone at 40 mg does magic, as long as I do not need it once a month (then it stops working).

I got access to the records why they swithced; it seemed sensible on paper (IgE was high despite Xolair, Eos were low). But in practice it did not seem to work as well.

[Pipsqueak77 in reply to runcyclexcski]

Hi runcyclexcski

That seems odd to me as Benra is really aimed at high eos??

😊

[runcyclexcski in reply to Pipsqueak77]

I know, right? My EOS were quite well controlled by Xolair while IgE remained high (during the pollen season anyway). Xolair did not "cure" me and I still had to be careful, but I could live a semi-normal life. Off Xolar, and on Benra it's back to planning to go to the hospital every day and dragging bags of drugs with me wherever I go.

[Blueberry37 in reply to runcyclexcski]

I'm so sorry, I really hope they find a better treatment plan. It's also about quality of life for us and honestly I don't think anyone really understands until they've been through it. I will keep my fingers crossed for you.

[runcyclexcski in reply to Blueberry37]

Thank you, Blueberry. One would surely hope that doctors who work on asthma would understand :).

[Ravotrina]

I started 1 weeks after my doctor decided to put me in Nucala. GSK gives the first 2 doses for free while the patient waits for insurance approval. Sadly my insurance said no, and the law can’t make them cover it.

I’m buying it directly from the importer, my family is helping me (each dose is like $800 dollars), so I will be able to buy it, I know that it’s not possible for the 90% of people in my country.

[Blueberry37 in reply to Ravotrina]

That's so expensive I'm so sorry to hear that it's so expensive there.

[Ravotrina in reply to Blueberry37]

it’s horrible, you can only live if you can pay for it.