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Is Pred Stopped / Rationed once you’re on Biologicals (Xolair / Mepo)?

Matman
Matman

Am eligible for Biological Treatment and wondering if Pred is prohibited or rationed when you start treatment with Mepo or Xolair?

When my Asthma flairs up and I take a Pred Burst, one positive side effect is temporary return of my sense of smell / taste (which ‘senses’ are otherwise almost entirely absent due to sinus / nasal polyp issues). Pred returns those senses for a week or two.

Wondering if I’ll ever be able to smell / taste again, if I agree to Biological Treatment and Pred is taken off the menu.

I’m aware of the surgery option for sinus / polyps, but returned sense of smell / taste is not guaranteed and (with eosinophilic asthma) it seems that any benefits of nasal surgery are frequently short lived and repeat surgery (often numerous times) is a common requirement.

Loss of smell / taste may (to some) not seem too big a price to pay for reduced Asthma, but consider how life is when you can’t enjoy wine, coffee, beer or Meals any more. (Nor smell a rose, your partner’s scent - and fail to notice if you get a gas leak).

14 Replies
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I have been on xolair since Feb and am still on pred too. They won’t take it off the table all together if you need it. The hospital at trying to reduce mine as it’s not good for you long term but won’t remove it as an option. X

MikeWhite
MikeWhite in reply to Jenzzie18

I’ve been in xolair for three years and it has changed my life - I still have the occasional flare up - am currently in the RBH was admitted on Tuesday - pred is still used as normal when I get an infection - ie 40mg for a week then ween down. Coming off IV hydrocortisone today hopefully and switch to pred.

Hope xolair works for you

Mike

Matman
Matman in reply to MikeWhite

Thanks Mike - appreciated. You may find something useful in my reply to Mark below.

MikeWhite
MikeWhite in reply to Matman

Thank you

Matman
Matman in reply to Jenzzie18

Thanks Jennie. Good to hear. Please take a look at my reply to Mark below, as some points may be of interest.

I’m on 25mg of pred as a maintenance, been on this for 3 years was also on xolair for 12 months, just been discontinued as they decided it wasn’t working !! I also have sinus issues and have had surgery to remove polyps in 2010 ....

Think we’ve discussed previously if my memory serves me correct

Matman
Matman in reply to Mark-f

Hi Mark

Thanks for that. Yes, sure we discussed previously, but appreciate your comment as (this coming Monday) I plan to decline Biologicals and ask to stick with conventional treatment - unless I learn something that convinces me otherwise.

Above Post was a sort of last ditch attempt to get additional feedback from anyone who might not have seen my earlier Posts on related topics.

Can’t recal if our earlier discussion included me mentioning dupilumab (not yet approved by NICE for Asthma but approved for Dermatitis). Developments on that MAB (plus one or two other new MABs, e.g. reslizumab etc) are worth monitoring as they seem to help shrink polyps as well as treat Asthma (as, by the way, very recent research also suggest Mepo does). However, unlike Mepo and Xolair, some of the newer MABs hopefully coming on stream soon, also seem to provide a degree of Lung Function Improvement (FEV). I appreciate that - although currently licensed MABs don’t seem to offer any improvement in Lung Function and simply treat symptoms, they ‘maybe’ can slow down any further deterioration in Lung Function (though whether moreso than conventional treatments, I don’t know).

Another thing about Mepo and the newer MABs is the absence of history on long term safety data. (Mepo was only licensed in 2015 I think, unlike Xolair which has been round for quite a bit longer).

Take care.

mmmp4cj2
mmmp4cj2 in reply to Matman

Hi Matman,

Dymista is fluticasone nasal spray with an antihistamine combined- useful if there is a trigger e.g. Pollen but in eosinophilic asthma I'd imagine Avamys would work just as well/better.

Re nasal disease with asthma- the same process is going on in the nasal mucosa as the lungs- so in theory you may find ANY of the biologics make some improvement to your disease burden in general.

I think if there is temporary relief at times- this suggests some of the lack of smell for you may be mucus/ congestion related as well as polyp related.

Regarding sense of smell- are you using Avamys 2 sprays to both nostrils? Also are you doing the "nocturnal non sniff technique?"- this was recommended to me by ENT consultant- worth looking this up- but basically chin to chest and aim the nasal spray to outer wall of nostril /eye- if you sniff too hard and you taste the spray it has gone in the wrong place.

Exercise returns some sense of smell for me - presumably to do with moving mucus and also increasing blood supply to the area.

It might be worth experimenting also with betnesol or fluticasone nasules- these are more systemically absorbed compared to sprays but less than pred and I have found some temporary relief with these. The usual pattern for me is course of pred- after 4 weeks smell goes then at a later point the asthma worsens so I have experimented with flixonase nasules if my asthma is ok but my nose is playing up . Flixonase nasules have 400mcg fluticasone in them ( 800mcg bdp equivalent) whereas most nasal sprays are significantly less than this .

Are you using prednisolone greater than 4 times per year currently ?

Matman
Matman in reply to mmmp4cj2

Hi MMM

Thanks for your response.

1. Nasal Sprays: Currently using Avamys and targeting the outer sides of each nostril with 2 Squirts. Will take the Chin positioning Tip on-board (cheers). There’s also another one ( beginning with ‘R’ I think) that is a mixture of constituents, which one ENT Registrar said I might want to try, will have to clarify name with my pharmacist.

2. Stronger Nasal Treatment you mentioned. Noted. Local Hospital Registrar has just given me a script for Fluxonase. More interestingly, he has also scripted me a simultaneous 3 Week Course of Doxycycline for my GP to approve as, he says, the One Week courses taken in the past may not have been long enough to make a real impact. A Grays Inn ENT Consultant I’m now also seeing mentioned that doxycycline is an antibiotic known to (temporarily at least) disrupt nasal polyps in some way - though I guess you already know that.

3. Biologicals. Certainly the case that - of the two currently offered Biologicals - Mepo can definitely help reduce polyp size to some degree per the Grays Inn In Speciast. My concern with Mepo is the fact that it’s only been a approved for two years and has no medium / long term safety data. As to the other, Oxolair, will look again at its profile but a few things have put me off it.

Also - as mentioned to Mark (above) - the main benefit with currently offered MABs seems to be symptom relief, but no Lung Function Improvement (with the possible exception of rislizumab that’s just been approved for Asthma, I gather). Appreciate ‘symptom relief’ is very important - especially for those whose symptoms are ultra severe / life threatening - but Immunotherapy (MAB) use is not dissimilar to using a sledge hammer to crack a nut - and is certainly not risk free (as attested to by the Patient Information Info for each Treatment, some of which refer to cancer risks). I might certainly jump at a MAB Offer if my currently severe asthma went from bad to ‘even worse’, or if I had some other very life threatening disease. At present, however, think I’m going to give conventional meds (with a longer safety record) a bit longer - as I seem a little better than last year.

4. One thing you may have info on (that I’d really appreciate knowing) is why no one has ever been able to tell me why my tongue (more often than not, daily) has a burning sensation. I’m careful about rinsing after Inhaled Steroids, and really don’t believe Inhaled steroid is the culprit. My online research into that symptom has revealed nothing I can relate to, and I’m sure the symptom is significant.

By the way, only recently discovered the private messaging function on this Site, so if anyone wants to share anything outside of the public forum, you can Message me as Matman there.

mmmp4cj2
mmmp4cj2 in reply to Matman

How is it going with the long course of doxycycline? Any help so far?

Geographic tongue can sometimes be associated with a burning sensation- cannot think of any reason why it would be related to your eosinophilic asthma unless there is any oral thrush

Matman
Matman in reply to mmmp4cj2

Hi

GP has approved the Hospital Registrars Script for 3 Week Doxycycline Course, but I don’t plan to start it until after Christmas because it’s one of those antibiotics where you really shouldn’t drink booze while you’re taking it (and the lead-up to Christmas makes avoiding booze entirely, simply too challenging).

Regarding the burning tongue / mouth, recent reading on Sinus Issues leads me to guess that this might be related to protein breakdown from T-cells, which - apparently - can give rise to a caustic acid type effect.

Declined / deferred offer of MABs when I saw my Consultant on the 20th Nov.

Hope you’re keeping well and thanks for your enquiry. Merry Christmas.

Hi, this isn't a direct answer to your question, but like you I have a problem with my sense of smell. I've had a recent improvement and thought my story might be of interest.

I had surgery for polyps 2.5 years ago and I've had problems with my sense of smell on and off, getting worse this year, despite taking Dymista regularly, which does help. Like you, any time i've taken pred since surgery has resulted in an improvement to my sense of smell.

After doing quite a lot of reading to get clinical evidence of what causes inflammation, I gave up sugar and alcohol on 1 November. On 15 November, I could smell for about 3 hours, which is the best in weeks. On 16 November, I got about 6 hours. Yesterday, I could smell pretty consistently from 7.20am to 9pm. Today, I've been able to smell very well since 8.30am.

I don't know how bad your polyps are - mine are currently not visible on examination of the nose including putting a camera up there - I know because I saw a specialist on Weds after trying a course of betnesol a few weeks ago which did help temporarily but then I lost the sense of smell again when I returned to Dymista alone. That was partly what spurred me on to try a non-medical option because the consultant said 'next step surgery and no guarantees'.

So... it's only been a few days, but it's the most consistent improvement I've had in my sense of smell without medication, ever. I'm hopeful.

I didn't drink much anyway and I like good quality chocolate, so I miss that. I miss marmalade on my toast... but it's worth it. Basically I eat a lot of fresh fruit and veg and try to avoid lots of added sugar in stuff I buy. I've stopped eating dried fruit too and drinking fruit juice.

I figure the reduction in inflammation will probably help the asthma too... though I've been in pretty good form that way since switching to fostair in February. My peak flow does seem to be about 10 better morning and evening lately if that's any indication.

Thank you. Appreciated.

Congratulations. Hope your recovery remains permanent.

Was it a single Article / Post - or info from several sources - that led you to the decision to cut out sugar and booze? (If a single article / post, can you provide a link?).

I guess as time progresses you’ll be able to Test what happens if you try reintroducing either or both, as any loss of smell on reintroduction - followed by recovery when you subsequently cut them out again - would provide further confidence that your sacrifice is worthwhile.

Will certainly consider giving it a go.

For reasons unknown, my sense of smell has (on one occasion at least) temporarily returned for a short period without Pred.

Has that happened to you before (without Pred) or is this month the first time?

Nothing else (like an infection or other incident / life style change etc) you could maybe attribute the recovery of smell to? Someone else on this forum said hard physical exercise temporarily returned their sense of smell, but only for an hour or two.

Not herd of Dymista so will check that out too.

Please also see my reply to Mark (above) as this may be of interest to you given similarities of our condition.

I share your love of Marmalade (especially Tiptree Tawny!)

Take care.

PS As you may know, there is a Private. Messaging Option that comes with membership of this Forum. Be good if you have time to update me in a few weeks time on whether your solution is still working well for you. (I struggled to locate the Messaging Option at first but if you pretend to start a Post but then use the drop-down menu under your Forum Name, you’ll find it.

PPS One thing that driving me bonkers is the constant presence of a burning tongue sensation (over 18 Mo this) that does NOT seem to be related to Inhaled Steroid use. Any Insight?

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