Desperate and worried

[Ted201]

Hi. I don't write much but read the posts often and find them amazing - so considerate and informative. My condition has deteriorated and I want to query this amazing group to see if any advice or similar experiences to draw from. Please forgive long post.

Background:

63 yo Male in US. Mild asthma since 10 yo. In 2006 worsened such that I started Symbicort and montelukast and did well; Ventolin as needed but not often. Able to exercise regularly.

SIX years ago had periods, often lasting 3 months, where a short cold would knock out my ability to exercise entirely. I didn't have wheezing/mucus per se; more a TIGHTNESS like a belt around my chest.

THREE years ago, I started needing Prednisone (4-6 short bursts per year) to get me through. Each year at least once I would flare when at low Pred levels (5mg) and then start over again (and again) resulting in 2-3 months on Pred once per year!

My eosinophil levels in 3 blood test since 2018 were high (480 - 720) and IgE higher than normal range ( 186-223).

I started Fasenra (benralizumab) in March 2020. Must say I found the efficacy to be very good. Weaned off prednisone. Stopped Fasenra after 4 months as I had 3 infections in short period. However, I had 8 months, 4 of which was after Fasenra discontinuation, that I rode my bike everyday 10miles rigorous (unheard of). No Pred; no Ventolin. Just controllers Symbicort, montelukast etc. So grateful.

Fast forward Dec. 26, 2021. Small cold and now I'm incapacitated. Taking Symbicort, montelukast, QVAR, Ventolin a lot, Pred daily for 3 months already - got as low as 9mg/day and now back to 15mg. NO wheezing, no phlegm, just TIGHT CHEST and INABILITY to do basic things (wheeling trash to curb knocks me out).

Starting Dupixent (Dupilumab) on April 6, 2021 (300mg). So hopeful.

- WHAT AM I MISSING? Does anyone have this situation that when feeling good can do rigorous exercise and when not good can't do more than sit on couch??Such a dichotomy.

- Do people have this situation of good SpO2=98, good peak flow 550, no wheezing, no phlegm, but TIGHT CHEST to the point you can't operate minimally despite all the meds?

What are your experiences with MANY prednisone days per year (25-50%)? Ps - amazingly I don't have any adverse effects from Pred! remarkable. But I know I'm destroying my body. Probably need a bone density test. Taking Vit D.

Again sorry for long post - needed to give full picture. THANKS SO MUCH!!!!

[fallon12]

Hi Ted, your situation sounds so similar to mine. I thought I was crazy and some how making myself worse or imagining how bad I was. I’ve had severe asthma for 25 years. I’m on 10mg pred for about 8 years also had bio chemical injections. On my second type as 1st was to strong. This one not working so waiting for new one around May. I’ve gone from working full time to part time and now not at all. All in the space of about 6 years. I used to walk everywhere and go to the gym 3 times a week. Now I’m so breathless with short walks and no more gym. I don’t get the flem and cough but the chest tightness and breathlessness and the feeling of fatigue is driving me crazy. I used to have a zest for life now I’m just trying to get through each day with out nebs or hospital. I keep trying everyday to keep moving to get fitter and be healthy and some days are better than others. My doctors are great and encouraging. They assure me I will get better than I am now. But they don’t know why I have so many high doses of pred or antibiotics. They just say I have brittle asthma and I am allergic to quite a few things. Unlucky maybe. But still can’t give up and will keep trying. I really hope you get the help and advice you need. Thank you for posting its amazing how similar our asthma shows it’s self. Best of luck.

[Ted201 in reply to fallon12]

Hi Fallon12 - thanks for writing and so sorry about your suffering too! It's great to share notes with people that understand. You mention high doses of Prednisone - would this be during flares, and if so how many would you have in a year? I found that I had several over the past 3 years; most resolving after a 2 week burst but once each year lingering for several rounds of up and down yo-yo stretching for 2-3 months! Arrrgh. Also - did you consider (or maybe try) biologics?

[Ted201 in reply to Ted201]

ohhh -maybe by biochemical injections you mean biologics such as benralizumab? or maybe you mean something else. Sorry if I misunderstood.

[fallon12 in reply to Ted201]

Hi Ted, yes I mean biologics I’m on benralizumab at the moment. It doesn’t appear to help or make a difference I can notice. I have about 6 high doses of pred a year due to flare ups.I have a slow reducing dose 8,6,5,4,3 and stop at 2 that’s 10mg a day. I have a 5/6 days on each dose or else I don’t respond. I do have a lot of side effects from pred. I hate being on steroids. Once a year it can take me 3 to 4 months to get over an exacerbation. Other times at least 3 to 4 weeks. I usually end up in hospital 4 times a year. This year in lockdown I’ve only been in once as I’ve not been in work or outside much. So a good year really.

[Ted201 in reply to fallon12]

Fallon - aha - I get it and sounds familiar. Sharing notes with you is really helpful to me - thank you so much.

[fallon12 in reply to Ted201]

Really sounds like we struggle with very similar asthma issues. I really wish you well.

[gillbee in reply to fallon12]

Hi mine is been getting worse no wheeze, tightness, have been on xolair injections for 3 yrs and consultant looking to move me on different injections if esophils over 0.3 but the problem is weaning off the pred. I have had dysfunctional breathing added to my diagnosis because as work who nursed in the hospital where I’m admitted and consultant is. It’s embrassing and I feel weird and just want to get out of there. I am on alvesco, fostair, atriovent inhalers twice a day fenofexadine, montokelist and home nebs. I use to cannicross with my dogs but some days bearly walk to the kitchen. I started doing mindfulness, Pilates and using a cough stimulator. All these seems to help my asthma. When I’m feeling tight I pucker my lips like ready for a kiss and break out as much as possible. Breathe in through my nose and long pucker breaking out. This helps the tightness and reduces the need for ventolin. As you say if sats maintaining at 98% I’m no oxygen comprised. These breathing excerises, mindfulness and cough stimulator has really helped me.

[Itswonderful in reply to gillbee]

Hi gillbe I am sorry to hear that you have been feeling so poorly. Sounds like you have come up with some good strategies. Please can you say more about the cough stimulator?

Thanks and best wishes.

[gillbee in reply to Itswonderful]

My respiratory nurse and respiratory physiotherapist said the reason for the tightness is because there is TOO MUCH air in the lungs. If I have tightness but no desaturation I use this to help me expel more of the air out of the lungs without medication. It helps to bring up stuff from deep in lungs but also to help with the tightness that comes with short of breath.

[fallon12 in reply to gillbee]

Hi Gilbert, thank you it sounds like you are going through a hard time . I will try the breathing exercises for sure. I’m always getting tight chest and breathless and I don’t always get the wheel. Thank you for advice .

[Ted201 in reply to gillbee]

Hi Gillbee-thank you for sharing your story! I am making it a goal to do breathing exercises as you say. One takeaway for me is that many of us are on MANY meds and still struggle. I was beginning to think my pulmonologist was just cavalier and throwing a lot of meds at me without taking the time to decipher what is really going on....but I see many of us are in this boat. I hope it works out for you and you can lower or get off the dreadful Pred roller-coaster!

[gillbee in reply to Ted201]

Thank you I am down to 19mg pred daily now. It’s annoying because I can go down 5mg a week from 40 to 20mg then reduce 1mg a week. So it takes ages to get off.

[hilary39]

Hey there! So sorry to hear you're so miserable. I hope you break out of this flare soon!!

I can completely relate to this issue of having had lifelong asthma and then having it unexpectedly get worse and being dependent on several courses of prednisones each year. I've had asthma since I was 8 and am now 40 and have had a lot of ups and downs the past decade in particular.

I can't always predict when bad asthma flares will strike though they're almost always related to allergens and many of the really bad ones have been related to environmental issues (e.g. a move to a moldy floor at work; moving into an apartment building here in France filled with cats [in the states I was always able to live in pet-free buildings because I'm terribly allergic but they don't exist here. Fortunately, we just bought a house so now I can completely control our environment and it's helped hugely.])

Sometimes I have a flare that'll last for months and months and require somewhat constant prednisone. I was actually on prednisone so often that I unfortunately developed adrenal insufficiency. With how much you've been taking it, it may be a good idea for you to get your cortisol checked just to make sure it's ok (if you haven't already). I'm amazed how many doctors and pulmonologists prescribe boatloads of prednisone without mentioning developing AI as a possible side effect (it means I have to take hydrocortisone several times daily or my body won't have enough cortisol and will start to shut down--it's a crazy and dangerous condition, several of us on this board have it).

Has anything in your environment changed? Have you tried taking magnesium? It relaxes muscles and has helped me.

And yes I have had a super tight chest and felt miserable with a normal peak flow. That's usually because the peak flow only measures the large airways and asthma often manifests in the small airways which can only be tested by spirometry.

Hoping you find relief soon!! Take good care-

[Ted201 in reply to hilary39]

Really great info Hilary! Yes-cats are terrible for me- I always have to ask before going anywhere about the pet situation (sometimes it works to my advantage - ha). By virtue of the comments to my post I'm really getting a better perspective on my situation and that it's not a complete one-off, and how people are coping/managing. Also - I will do the cortisol 🤞. take care and thanks again.

[Pebble14]

Hi Ted, sorry you're having such a hard time. I am asthmatic (since I had pneumonia ten years ago) and I have recently switched from Clenil to Symbicort and it has really helped with my breathing and got rid of wheezing which I have suffered with for many years.

I can't recommend yoga enough! I have been doing just 20 minutes a day, and it has changed me. At first I really struggled with a basic routine as I just couldn't breathe. I'd be out of breath with just a few movements. But I stuck with it and did what I could on the bad days, even if it was almost nothing. I have found that over the past year since I started, I now can do a whole 20 minutes with no problems breathing at all and I feel much stronger, healthier and happier. I can even go for brisk, long walks, not like the crawling and struggling I had a year ago. There are so many free yoga workouts on YouTube, just find one that starts you off on a gentle routine, even a 10 minute one, and then you will find it gradually improves. But stick to it daily, I think that's really important.

Also, to everyone on this forum, please do try this as I thought I would never get to the point I am now. The great thing about yoga is you can do it at home, you can pace yourself, and monitor your own progress by seeing how you manage the same routine every day, through your ups and downs. My downs have disappeared and now I am even practising more vigorous routines on some days.

☀️

[Ted201 in reply to Pebble14]

Hi Pebble- Early in the pandemic when I felt much better, I tried Yoga and I realized how amazing it could be and at so many levels. For whatever reason, I kept opting for kettle bells and bike riding. Now for months I've been incapacitated so biking (for now) is out,,,,but I can see that Yoga could make a lot of sense, starting slow and building as appropriate. It's a great recommendation and I must make it a point to do yoga (as you say) and breathing exercises (as others have pointed out), to build up my conditioning again. Thanks so much for your considerate recommendation!

[Pebble14]

Hi Ted, yes that's what started me off, the pandemic and lockdown (and fear of catching/dying from Covid). I combine the breathing with the yoga moves and that is really helpful too. You're very welcome and I hope it transforms you! Last summer I was struggling to breathe, even walking across a room felt scary and impossible. That was the last time I took Prednisolone and I hope it's the last. Good luck with your routine!

[corinneyvonne]

Hi Ted hope you are well again. I was on Mepolizumab until last October when suddenly things started to go wrong again. Usual symptoms….. Anyway after a 12-month struggle started Dupilumab yesterday and was wondering how you were doing on it? Feel really off today but they gave me the max dose yesterday so understandable. Any advice would be appreciated 🙏

[Ted201 in reply to corinneyvonne]

Hi Corinneyvonne - Sorry to hear Mepo stopped working 🥺. That's got to be rough after many years of success with it. Well I can say that Dupilumab has been nothing short of a miracle for me! (Hoping that it stays that way 🙏). I started 1.5 years ago. Within 2 weeks of starting it I started feeling better. After 4 months I was completely off steroids and continue to be off steroids. I also stopped using Qvar and I must say in the 1.5 years, I used my rescue inhaler maybe twice for 2 days each time!! I'm going to the gym and walking extensively. This after being couch-bound with bad chest tightness and so many meds for the better part of several years prior....I'm in the US and am seeing a great pulmonologist in NYC. I truly hope you have similar results! Dupixent as it's called here pulled me out of the doldrums. I take 300mg autoinjector pen once every 2 weeks. I also am on 2 puffs twice a day of Symbicort 80/4.5 (which was also reduced down from 160/4.5 about 6 months ago). HOPING THE BEST FOR YOU. ps - I tried Fasenra (targets IL-5) for about 8 months before Dupixent. The efficacy was very good but I got several infections and also eye pain and discontinued it. None of that for me with Dupixent. I'm convinced my issue is/was IL-4, IL-13 related.

[corinneyvonne]

Hi Ted thank you so much for your encouraging reply. It is lifted my spirits as feel a little overwhelmed today. I am also keeping everything crossed that I have similar results to you. Mepo was wonderful until it suddenly stopped working but life is never straight forward as we know. Have booked a month in Goa in February on a Yoga retreat so fingers crossed. Take care of yourself and thanks again 🤗

[Pipsqueak77 in reply to corinneyvonne]

Hi corinneyvonne/Ted201

Hope you don’t mind me jumping in here but am really interested in your chat…thoughts?😊

I am currently on Benra ( approx 2yrs) it has been fantastic however in the last 6-8months I have had 2x hospital admissions and several infections.

Both myself and hospital team are worried that it’s not working so well anymore and my consultant has offered me to try Dupilumab instead.

But I am really concerned and worried about moving to two weekly injections and also about any effects. I just feel like all I do is take so many meds just to breathe…☹️ my daily routine is already a chore.

Apologies for feeling sorry for myself but was hoping you both might share some friendly words/advice?

Corinneyvonne 🤞 you feel better soon and that Dupilumab works for you and Ted 🤞it keeps working as well as it is!!

Thanks 😊

[Ted201 in reply to Pipsqueak77]

Hi Pipsqueak- well it sounds like my experience with Benra as well- it was working great on the efficacy but I had 3 infections in a short period that I strongly attributed to the biologic. So I discontinued Benra and started Dupilumab. There are similarities between the two but also an important difference in that they target different interlukins (Dupilumab is IL-4 and IL-13; Benra is IL-5). All I can say is that the Dupilumab has been working wonders and fortunately I have had none of the adverse effects (no eye pain and no infections). If your drs think it’s worth a try I wholeheartedly would give it a go. Every 2 weeks was something that I preferred because if I wanted to discontinue it I could more easily than having 2 months of drug in me. Anyway- it’s worth giving it a go and I hope you have the results I’ve had!!! I use 300mg . Good luck 🍀

[Pipsqueak77 in reply to Ted201]

Hi Ted

Thanks for your reply..

Yes I know you are right about giving it a go but I have worries. Silly I know!

They did mention about conjunctivitis and eye problems as being quite common? So great that you have not suffered with this. Do you think you’ve had any side effects?

Thsnks!👍😊

[Ted201 in reply to Pipsqueak77]

I'm keeping my fingers crossed but I have not had side effects w/dupilumab. No eye pain and no infections. It's been 1.5 years. Fortunately there are several choices of med now so it's natural to try a different one if the one you have been on is problematic. Also - personally - I don't mind at all the once every 2 weeks injection. It's so fast and simple. I do have to think about it if I'm traveling, but being able to keep it at room temperature for 14 days if necessary makes it work fine. And also I know you feel like you are on so many meds....It was exactly that way for me too - and it wasn't even working so well...just keeping me alive I felt. But I was able to get off most of them. Keep us posted on your progress. Wishing you the very best!

[Pipsqueak77 in reply to Ted201]

Hi Ted

Thanks for your advice and encouragement!

I hope things continue to be good for you🤞🤞

I will keep in touch as things progress..

😊

[corinneyvonne in reply to Pipsqueak77]

Hi just replied to your other post. I think it is important to try something new if your current regime is not working, especially if you can access other treatments. This is a fantastic position to be in as it took me 12 months of kicking and screaming to get them to agree. This is despite the fact that everything was telling them that Mepo had stopped working. I have side effects on Mepo and suspect it may be the same with Dupil but I would rather be able to breathe than anything else. For me it is an obvious choice and would try anything to get back to my old self. Yes I know this will never happen but I am forever the optimist 👍

You sound like you have a great relationship with your hospital team which is wonderful so just keep talking to them until you start to feel more comfortable. Unfortunately we all know the definition of madness 🤦😁.

I am sending you positive vibes and am here if you need to talk. Love and light 🤗

[Pipsqueak77 in reply to corinneyvonne]

Hi

Yes.. you are completely right.. I am lucky to be offered (sorry to whinge..!) but I guess I am just so disappointed that the Benra which worked so well initially seems to be ‘wearing off’. I feel as if I’m giving up too easily… maybe things will get better again?🤷‍♂️

I am sorry that you had to fight so hard.. why was that if you qualified for Mepo you should for Dupilumab? 🤷‍♂️ It seems a straight swap to me? In fact I think NICE quote lower levels of eos required for Dupilumab than Mepo?

Anyhow… you are on it now! So 🤞🤞

Thanks for your good advice! I just have to take it now!!

😊👍