CAN ANYONE ON MEPOLIZUMAB TELL ME HOW... - Asthma UK communi...

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CAN ANYONE ON MEPOLIZUMAB TELL ME HOW THEY ARE DOING ON IT PLEASE?

rainbowbrite33
rainbowbrite33
20 Replies

Hi all, I am currently in the process of fighting to be given a chance on Mepolizumab for my severe refractory eosinophilic asthma and chronic eosinophilia.

I have already delineated all of the details of that in my earlier post but it then occurred to me that perhaps I should also ask those who are currently being treated with Mepolizumab or any of the other biological treatments for SREA how they are doing on it. Are things much improved...or not?

Are people on it finding they’re having fewer acute exacerbations?

Is their overall quality of life improved after treatmebt with these new biological therapies?

I am very interested in hearing from anyone who has been or is currently being treated with Mepolizumab..or any other biological treatment for severe refractory eosinophilic asthma.

Many thanks and good luck to all.

20 Replies
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Margerita

Hi there

I do hope you are given the chance to have the treatment and that it improves life for you.

I too would be interested in hearing how anyone is getting on with Mepo. My case has just gone through MDT and I’ve been accepted for treatment which I should start in the next couple of weeks.

I’ll let you know how it goes for me.

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rainbowbrite33

Thank you for your reply. Delighted for you that you are going to be receiving the treatment after getting accepted. I am so frustrated as this treatment was promised to me by consultant whilst he was awaiting approval from NICE.

However, since he’s received approval it has been impossible to get to see him and he is not returning our calls and requests for an urgent appointment to discuss this treatment for my SREA going forward.

We are not going to give up as I am having in excess of 8-10 acute exacerbations of asthma as well as the full blown asthma attacks and can no longer have corticosteroids as I have developed cardiac problems as well as cataracts in both eyes.

Good luck with your treatment on Mepolizumab and I really hope it transforms your life as it has done for others on here.🙏🙏👌👌👍👍

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corinneyvonne

Hi rainbowbrite33 I have written a post about my experience on Mepolizumab but happy to answer your question. I have SREA and was having at least 5 exacerbations with hospitalisations per year. This drug has changed my life and I cannot shout this loudly enough. I have had thirteen injections now (one every 4 weeks) and no exacerbations at all. No steroids either. I still take Fostair but that had reduced by half and Montelukast at night. I am not sure I need these either now and will discuss this with my consultant. I have felt at times that I was getting a cold but nothing else. I now that I am so lucky 🍀 and count my blessings every day. I know that everyone is different and I believe that there are even different types of SREA. This is the reason that Mepolizumab does not work for everyone. However you should be given the chance to try it so I would keep asking consistently until you get it. It may change your life 🤞. My thoughts are with you 😄

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rainbowbrite33

Hi Corinneyvonne, thank you for your message. I am absolutely delighted for you and so heartened to hear how this treatment has completely transformed your life for the better. My gut instinct tells me that I really need to be given a chance in this treatment as my current treatment regime is simply no longer working and the acute exacerbations are getting closer together and are also getting worse.

What makes it so frustrating for my husband and myself is that we were promised that I could commence on this Mepolizumab as soon as NICE approval was given and that is over 2 years ago now.

We are absolutely determined not to give up as I know I fulfil all the criteria for this treatment and will keep on pushing for it. I feel it is my last hope.

However, the problem is that this consultant who is trying to avoid having to deal with our request for this treatment (after he personally told us about it & promised me it once approval was received!) is the only one authorised to prescribe it and therein lies the core problem.

We have even considered travelling outside our area but with all the cutbacks and cost of this medication that’s not looking very hopeful....😥😥😕😕

Well done you and stay well,and happy and enjoy feeling great Corrineyvonne 🌺🌸💐🌹

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Shellc

Hi I’m on mep , just had my 7th injection and just starting to feel it’s helping me although I don’t just have asthma I have bronchiectatsis too, along with the injection I have just my diet and cut out all sugar and grains , started taking high dose vitamin d . I’ve not had an infection since January which is good fir me, trying to come off steroids completely but that’s causing me low cortisol levels which is being looked into . I say give it a ago , incidentally I tried xolair before this fir 6 months but too many side affects

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rainbowbrite33

Hi Shellc,

Thank you for your message.

So pleased you’re starting to feel the benefits of Mepolizumab. You are so lucky not to have had an infection since January as I have been on countless courses of antibiotics this year..two different ones at same time in several instances..as well as high dose corticosteroids.

They thought I had bronchiectasis as I had all the symptoms of it and I had some scans but it transpired it was because the asthma was so severe and I had chronic eosinophilia as well.

Stay well and stay happy 💐💐🌸🌸🌺🌺

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amberx

Hello! I started on mepolizumab for SREA and have had 5 injections and my results haven't been so good so far. Still on 1 to 2 lots of steroids a month, doubled my Fostair inhaler dose to 2 puffs 4 times a day and had 3 chest infections. This most recent one 2 days ago had me at A&E by ambulance. When speaking with my consultant he has reassured me by saying it can take up to a year to start working but I think they're going to start looking into to other forms of treatment to go alongside it for the time being. I have heard lots of great things about it though and I am hoping the more injections I have, the easier it will get. But so far I'm just a little disappointed and disheartened, I suppose we all wish for a quick fix and that this injection would be the miracle answer for it all but only time will tell I guess. Just got to keep going ☺️

I hope you get the opportunity to have the injection and to see how it helps you. Fingers crossed for you! 🤞🏼

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rainbowbrite33

Morning amberx, I am sure you are very disappointed but hopefully things will improve for you on the Mepolizumab, either by itself or with some add on treatment. I think it’s amazing that they have these new biological therapies now which are much more specific and target the source of the problem. I personally no longer have the option of high dose corticosteroids so am desperate for a chance to at least try this treatment, particularly as it was promised to me!

I really hope that you start to see, and more importantly feel, a big improvement in your respiratory health going forward.

Thank you 🌺🌺🌸🌸💐💐

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perno12

Hi guys my name is Phil from Edinburgh, Im 54 year old and have suffered asthma virtually my whole life. Mostly chest infection, colds or exercise induced asthma i have seen and talked to virtually every consultant in Scotland :-) .... I have been on every type of inhaler , taking prednisone virtually every other month for the last few years, 40 mg doses over 5 days used to give me a bit breathing space !!! between attacks not now.

I am now on my 5th monthly nucala injection, i haven't had any prednisone in that time , only used 1 ventolin inhaler. I still take relvar and spiriva every day but im feeling so confident im pushing docs to try to wean me off these ! The only down side is im suffering sore bones especially in my back, shoulders and hips, but could have prednisone been masking these pains previously only time will tell

To conclude if you suffering from chronic asthma but you don't have any real known allergies then imho Mepolizumab is a treatment i would recommend

Hope this helps Phil

btw sorry for poor grammar, written English never my strong point

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rainbowbrite33

Hi Phil, your grammar is absolutely fine btw. I would love to be able to tell you what life is like on Mepolizumab but the sad truth is like yourself I am still fighting to be given the opportunity to try it!

They keep doling out high dose corticosteroids to deal with the inflammation & flare ups #1 because they do work & #2 most importantly for them they’re incredibly cheap!

I was promised it when they were awaiting approval from NICE & several Yeats on am STILL waiting😥😥😰😰

My FENO is very elevated @165 but still it’s the old tried & tested intra muscular injection of corticosteroids they always return to.

I have been extremely disappointed & frustrated by the lottery that is Mepolizumab as some very lucky people with SREA (severe refractory eosinophilic asthma) seem to have it offered to them without even having to ask & then there’s people like us who have to beg...and are STILL being kept waiting.

Good luck with everything Phil 👌👍

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perno12

Hi Rainbow, I feel your frustrations honestly i do , regarding my Asthma the Mepolizumab injections have changed my life even at this late stage. My Pk flows have gone from a daily average 180-220 with sats 94 at best , to 300 and 97.

How i sold it to my respiratory consultant was the cost of me being in hospital 4-5 times a year against the cost of injections, its so wrong we have to "beg" specially when it comes to our health.

ALL THE BEST

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Sparkimoore

Hi!

I’ve had 23 MEPOLIZUMAB injections so far, for v Sev asthma, just like you, but it’s not worked well for me. My eucinophils did drop at once from high hundreds despite being immune suppressed, to just 10, for over a year but my physical breathing was utterly unchanged. I can’t say how disappointed I am. Hopes were high. I WAS able to gradually reduce & fibally stop Mycofenalate meds, which were highly toxic, with really nasty side effects too, with blood results unchanged. The consultant then decided to start very gently reducing my Pred by 1mg/month & “see what happens”... and so started a slow deterioration. I managed to get down to 6mg & the weight loss started, Joy of joy, but I was told not to reduce further.

I deteriorated badly over Christmas. I had to go onto steroid rescue of 30mg & that’s the first time I’ve needed ANY rescue in almost 2YEARS! The improvement, that I’d usually bounce back with in 24hrs, took 8 DAYS & as steroid dose has now been reduced to 10mg, I’m starting to deteriorate slowly again. Mepolizumab has met its match with me it seems!

As my asthma is query assoc with EPGA/Churg Strauss Syndrome, the Cobsultant is TRIPLING my Mep dose, starting on Wednesday, hoping for a better effect. We will see, or I’m looking into the abyss again. Terrifying.

KEEP FIGHTING FOR THIS DRUG! If you meet the criteria for it, you SHOULD GET IT!!

Fingers crossed!

Bestest wishes

Rose

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rainbowbrite33

Hi Rose, I am so sorry to hear that Mepolizumab hasn’t helped you. Maybe they could try Reslizumab or one of the other biological treatment options?

I too have been investigated and tested for EGPA Churg Strauss as I have so many of the symptoms & they’re still checking the vasculitis stage.

I’m sick and tired of high dose corticosteroids as they’ve caused me no end of problems (albeit they have also got me out of serious trouble many times).

I have had posterior subcapsular cataracts in both eyes and had to have cataract surgery done privately as well as cardiac surgery.

I am wishing you well and I will keep fighting for my right to be treated with Mepolizumab or another Biological as I do meet all of the criteria.

Good luck!

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Sparkimoore

Oh I had the cataracts too.. Thanks to the steroids, & steroid induced diabetes, that they just can’t control. Add it to the list! I saw Churg Strauss /EPGA on Mystery Diseases on Sky & mentioned it to the drs but was fobbed off. Don’t quite meet the criteria. Over the years I’ve deteriorated if course, & we had new Resp consultant who knew what I was on about & did loads of tests. I had 3.75 but 4 needed for firm diagnosis. DONT RULE ME OUT FOR ONLY HAVING 90%! It’s terminal if not controlled. Was on Mycofenalate for 4yrs tog with the Pred & it had reasonable effect but suddenly virtually stopped working in March 2016. Miraculously my consultant got MEPOLIZUMAB 6wks later for me ahead of uk release as were in Jersey. He’s spoken about me going in Reslizumab or poss Ritoxumab but it’s been an utter NIGHTMARE to keep poking them to remind them this is CHURG NOT JUST DIFFICULT ASTHMA.. FINALLY they’ve decided, yes, she’s right.. I’m exhausted fighting my corner! If they suspect Churg for you DONT EVER GIVE UP FIGHTING for meds you should be having! Can I ask, are you immune suppressed?? So dangerous if you’re not. If you’d like to message me privately we could keep in touch via email. Rose

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rainbowbrite33

Hi Rose, it sounds like your doctor is a lot more proactive than the so called ‘asthma specialist’ I see. Because of the long term he d dose corticosteroids I have also had two heart attacks. When CS/EGPA was diagnosed I was prescribed immune suppressants...azathioprine. However they affected my kidney function & I developed an extremely severe case of shingles and they were followed by post herpetic neuralgia which I still suffer from. I’ve been told so many different things...I had aspergillosis & was put on Itraconazole...I was also on Montelukast to mention only a couple.

I would like to message with you privately but don’t know how to do that! 🙈🙈

Take care & GOOD LUCK for Wednesday 🙏🙏

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Sparkimoore

I’m not certain about the private message but think there’s an option at top of page to message.. oh what the hell, email me .. sparkimoore@gmail.com If I get thousands of bogus emails I will just delete.. look forward to hearing from you! Monteculast is actually linked with possibly causing EPGA! I was on it too, & suddenly told to stop it!

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Minushabens

The PM function is listed as ‘chat’ at the top if you wanted to use it & edit out your private details.

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Ticaboorhino

I have been on Mepo for over 4 months now. It has helped the lung and sinus secretions greatly. I was in what seemed to be continual asthma attacks. Worked through then with Albuterol and saline solutions through ia nebulizer. Secretions were like the hot matzerella cheese on a pizza. Very scary at times. Oxygen is good and breathing so much better. I am not experiencing side effects. Headaches, almost done. Terrible fatigue. Incapacitating at times and now my hair is falling out. It seems hard to know what to do. Frustrated. Off prednisolone.

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TuckBox2

Hi Rainbowbrite,

I have been on Mepolizumab since May 17, since I have been on it I had 1 asthma attack (June 17) this was in my gp surgery but was sorted by paramedics with nebulisers, this was probably because they stopped Omalizumab in February while waiting for mep.

I have not had any hospital admissions nor any exacerbations since, I have not even missed a day off of work due to asthma problems. The hospital are talking of me self injecting at home to save hospital visits.

When I started on the biologicals the first thing was I could stop my nebulisers (4x daily) and stopped Desloratidine and Uniphyllin.

I too had a Fundoplication 10 years ago for acid reflux, yes that did help a lot too. I am on Montelukast, Fostair, Spiriva, Salbutamol, Esomeprazole, Ranitidine + meds for blood pressure, statins etc. these have just changed as I had a heart attack 3 weeks ago.

I have my next injection tomorrow, will have to see what they about the heart attack.

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rainbowbrite33

Hi TuckBx2, thanks for your message. I am so pleased & delighted for you that the Mepolizumab is definitely improving your quality of life 👌👍

I have now been told because I have had two very bad heart attacks - in July 2016 & another one in July last year - the most appropriate biological treatment for me is going to be Benralizumab & I’m currently awaiting treatment with that🙏🙏

I have never been treated with a biological yet despite fulfilling all the criteria with having SREA (severe refractory eosinophilic asthma).

My heart attacks both required emergency surgical intervention and the first one in particular was horrendous ( LAD was completely occluded and my troponin levels were 936 which they told my husband & I afterwards meant I’d had the charmingly named ‘widow maker’ heart attack (or more precisely myocardial infarction as they called it!)

Good luck with everything & stay well 👍👍👌👌

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