Hi all ...... looking for some feed back on mepo ???
A bit about my history, I’ve been on xolair for 15 months but still are unable to reduce my daily pred (currently at 20mg daily) I’m not convinced xolair is working for me it was supposed to be the great white hope.... there’s been a mention of mepolizomab.
I also suffer with nasal issues, servere rynitis and polyps ...
my other meds are
Flutifrorn 250, theophylline 400mg,lansoprazol, loratadine, salbutamol. Ad cal-d3....
I’m fairly stable atm but been on high dose pred for some 2 years
P.s.... sorry about my spelling !!! Lol
Written by
Mark-f
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I was on Xolair for 4 years, it seemed to work well in the 1st 2 years, then I had a bout of pneumonia and things seemed to get worse, I was having lots of exacerbations, and having to take prednisolone for 5 to 14 days from 40mg up to 60mg and then weaning off. It seemed no sooner I was off preds, I was back on them again. I heard about Mepolizumab last November and I was told I would be put on it as Xolair was not helping me. I was quite ban in February this year and had 8 days in hospital, I was on IV abs and on 40mg pred for 3 weeks and weaned off. They stopped the Xolair in March and I had my 1st Nucala (Mepolizumab) in May. I have been having the 1 injection (Xolair I had 4) every 4 weeks, I have had no adverse effects.
I have had 1 bad day since I started this, I started coughing when I woke up and my wife said I should go to my GP. I went for an 11.50 appointment was GP examined me and could hear a slight wheeze and prescribed ABs, I was explaining what had happened, started coughing and could not stop. My GP ended up calling an ambulance to take me to hospital, the paramedics nebulised me in the ambulance and by the time I got to A&E things had settled down my PF had risen to normal level and I was sent home about 6.30pm.
I had my inhalers (Cyclesonide & Formoterol) swapped to Fostair 200/6 last October, that has helped get my PF back up, after a few weeks I have been getting 520+ 2 or 3 times a week rather than once or twice a month, where I was normally just getting 380 - 450.
Very interesting..... my xolair nurse and I are both convinced that it isn’t for me and it’s the high dose of pred that is keeping me stable and my sats at a reasonable level ...... I see my consultant in January for my 6 Monthly review I’m going to push for mepo......
They say this will help those with Eosinophilic asthma, and is dependent on eosinophillic levels in the blood, also having regular FeNo tests and depending on results.
My asthma nurse mentioned this test but she said there would be a good chance that would be inconclusive because of the prednisone affect on the immune system!!
I haven’t been off of pred for at least 2/3 years. 20mg daily is my lowest dose
Hi I just had my 6th injection. Have been on pred since 2004. For the last two years 40mg a day and needing iv steroids in hospital every few months. I am now down to 17.5mg of pred a day and getting the best peak flows ever. The Eosinophilic is effected by pred levels so normal mine would not have got me on the programme but I asked them to do the test last time I was in A&E having an asthma attack and then got a copy of blood results and gave them to my consultant. Good luck
Lost some of the drift in this thread. Are you still taking a Biological / Mab? If so, is it thumbs up or down for it?
I'm supposedly a Severe Eosinophilic Asthmatic (on Fostair 200/6 + Montelukast + Avamys Nasal Spray).
I'm currently looking into having Nasal Polyps removed under local anaesthetic - which I gather is now possible if the polyps are non fibrous (don't know if mine are or not). Sure it's them and sinuses infections causing many of my issues.
Hi mat ..... I’ve been on xolair for 15 months but been unable to reduce my pred below 20mg daily so the team at the Brompton have decided to discontinue it on me !!!
So mepo is the next step I’m hoping.
As for your sinus issues I had fes (functional endoscopic surgery) in 2010 to remove polups .... did help initially but I still have sinus/nasal issues including servere rynitis !!
The daily pred does help .... although I’ve had no sense of smell for about 5 years
Thanks for your reply. Sounds like you're having a tough time of it. My sense of smell has been coming and going. Gone at present. Did you have your sinuses done when you had you're op, or just the polyps? I known my sinuses need attention but gather there's no guarantee with the surgery, and that polyps can recur after it. BTW have you come across Dupilumab? Could be promising for the loss of Smell and certain kinds of Asthma but - being a Mab - it's going to be tough to qualify for, as all the Mabs cost an arm and a leg (five figures a year).
Hi..... Yes I had a full mot while they were up there .. Lol . Polup removal, septum straightened and sinuses opened up . I've heard that mepp is expensive and hard to get but I can't stay on pred forever surly ?? I'm 45 and already have to supplement with Calcium and vid D as I had osteoporoses confirmed after scan
Only asking because the asthma nurse specialist there mentioned there is also another new drug coming out. I don't know what it called but you might want to ask about that one as well
Hi Mark, have had 5 mepo injections and never felt better! On 3mg pred only plus usual meds...braitus(spiriva), relvar, salbutamol as well as azithromycin long term for bronchiectasis and slophyllin. No side effects and no flare ups since May.I've had problems with hearing in the past but this has cleared up. Had polyps operated x2 and these ok at the moment too.
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