Roflumilast/Daxas

[PaulineHM]

Dear all,

I just wanted to let all of you with severe COPD that I was given the opportunity last year, March 2022 to start this medication, Roflimilast. I had to request the outpatient appointment to be able to bring the possibility of being prescribed it. HealthUnlocked It wasn’t even mentioned to me by GP or surgery pharmacist.

It is a newish medication and initially can only prescribed by consultant. Once things have settle the GP can take over the prescription. I had to stop taking Theophylline to be able to start this newish drug.

The side effects can take some to work through to start with but I progressed and listen up folks it has made a big difference over the time since then.

It has made with impact on reducing the production of mucous and the cough! I have a greater sense of well-being too.

Although I have had exacerbations since starting to take it, I have not needed additional antibiotics! Wowser!

Still taking prophylactic Azithromycin on alternate days but even so, not to need additional antibiotics is remarkable. Just manage the exacerbations with a short course of oral steroids.

it seems still that not many people are offered this medication, not many professionals seem to have heard about it either, which is why I am sharing my experience of taking it on here.

If anyone here is taking it, how is it going for you ? Would you let us know please ?

Go well folks.

Pauline

[peege]

Just very pleased to hear it PHM ! 💐

[PaulineHM in reply to peege]

Thanks dear Peege! Xx

[Germantara]

I have heard off it ages ago but didn't give it any though I'm pleased that things are looking better for you good to hear I'm on trimbow I can't rember were I heard off it it wasent offerd to me I'm only moderate so I think must off being in passing talkin to some one

[PaulineHM in reply to Germantara]

Hi Germatara,

Interesting, do keep it in mind. It is indeed prescribed for severe COPD. Although may you remain in the moderate range for a long time to come!

Go well,

Pauline

[clematis5932]

Thank you so much for this post. My Consultant prescribed this for me last week, as you have mentioned it can only be authorised by a Consultant . He explained that at the moment only he can prescribe not GP or respiratory team. I have reived a call from hospital today to say medication now in stock ready to be collected. I also am on Theophylline and also take drugs for Epilepsy, I have been told it is ok to carry on with on with them . Like you I was told it is a relatively new drug and you have to have had a minimum of three acerbations all of which must be have been recorded to enable it to be prescribed. I was made aware of the side effects of which not every one can tolerate. Weight loss was highlighted for me as i am only about 6stone 12 he will monitor me for a while. Thank you so much for your experience of this drug of which I was a little frightened of taking.

[PaulineHM in reply to clematis5932]

Hello Clematis,5932

That sounds positive well done. I really hope it suits you and that you do well on it.

It took about 2 months for side effects of backache and mild abdominal upsets for things to settle down and after that time the GP took over prescribing it. Not been back to outpatients since that appointment and hadnt been there for 6 years before that !!

Interesting that you have not been asked to stop Theophylline !

As far as I know it has been around for a while now. NICE took their time to approve it and yes as you say it doesn't benefit everyone. I think it rather depends on which COPD pheontype we have.

Thanks for the reminder about weight loss. I have lost about a stone over the last year, but am doing a lot more ( getting fatigue though perhaps from low carb intake ?) and have prediabetes so am seriously watching my carb intake to keep blood sugars at a healthy level. Now increasing my protein intake. Do lots of exercise as well which really helps me.

So hope this drug benefits you. Do let me know how you get on with it.

Go well.

Pauline

[PaulineHM in reply to clematis5932]

Update: interesting that this afternoon the surgery pharmacist, following up my annual review picked up my loss of weight. We had a useful chat and she will speak to the Resp team to see if they have a concern. She told me she isn't planning to stop the medication. She also told me that managing this medication is on a shared care basis between the GP and the consultant- I didnt know that...

Go well.

Pauline

[clematis5932 in reply to PaulineHM]

Thank you Pauline I no longer have an annual review with the surgery nurse as my GP contacts the respiratory nurses at the hospital if needed. The respiratory at the Hospital do a six monthly review. I also was not aware that this drug would be on a shared care basis. My daughter has collected my drugs from the hospital today. I shall wait a few days as some of the family have had a tummy bug the last few days so I want to be clear of that first. Further weight loss is my only concern at the moment.

[PaulineHM in reply to clematis5932]

So pleased you have that regular support from the team- that sounds really helpful.

So hopeful for you that this medication will help you feel better than you do now. Yes, sounds wise to wait for tummy to settle before you start taking it.

I almost gave it up whilst getting through the initial side effect but glad I didn’t now.

You are very welcome to direct message me to keep in touch with how you get on with it.

Go well.

Pauline

[Mellywelly]

I am so glad it's working for you, personally I have not heard of it but will keep a look out for it in the future 😀 👍

[Patk1]

Great result for U x

[PaulineHM in reply to Patk1]

Thank you.

Go well,

Pauline

[Patk1 in reply to PaulineHM]

It's gd to read Yr positive post.hope it continues Pauline x

[Tdster43]

Hello everyone; lovely to hear of Roflumilast helping! I was involved as a site doctor for one of the trials that helped it onto the market for COPD

It hasnt been formally tried in a large scale trial focussed on bronchiectasis. I tried to get this funded at one point but it didnt progress

For those on azithromycin as a stand alone drug many centres/ patients come to the decision when better to undertake a period of withdrawing the medication

This is partly to reduce side effects risks/ potentially losing drug benefit and to reduce antimicrobial resistance

one could imagine (after winter has passed!!!!*) that for someone who was okay but not great on azithromycin and then better on azithromycin and roflumilast that phasing put azithromycin as a trial would be reasonable

it might be that both drugs are needed for the stability (in some patients) and not in others

The COPD trial from memory was specifically in those not taking azithromycin so the benefits of being on both etc are less well known (to me at least)

*I try to avoid stopping drugs before/during winter (a random cold coming along setting off a bronchiectasis flare up can confuse the story)

[PaulineHM in reply to Tdster43]

Hello Tdster43,

Thank you for responding to my post- how interesting that you were invloved in the orginial trials of roflumilst.

Am all for an anti microbial approach to meds where ever possible. It would be a big step for me to take the risk to stop Azithromycin - there's a bit of anxiety there. However, if we had a good long summer in 2024, warm and dry as in 2022, then I would be prepared to give it a go. I am at my best in those condtions. Been taking since 2017 and not yet had a break but as you may imagine am feeling a little ambivalent about it .

Interesting too, is that as a person with ACOS, then since starting Roflumilast, during non infective exacerbations it is Asthma symptomss which now come to the fore and require additional management.

As a contributor to Patient Particpation Prpgramme with Astra Zeneca I watch and wait for new pharmacological developements which may eventually emerge from the company. They may be too late for me though hopefully others will be able to benefit ?

Time for Yoga!

Go well.

Pauline