Long-Haul Covid and Asthma Diagnosis (anyone)?

Posted by otter2154 @otter2154, Sep 24, 2021

I was horribly sick for a several months last year (Nov, Dec and into Jan) with severe Covid-like symptoms. My PCP would not see me in person because of the Covid symptoms and only offered pep talks through video chat … so I suffered through it all at home. Finally got to a pulmo in Jan and after testing he immediately diagnosed me with moderate persistent asthma (I am 57).

Fast forward to today and I am doing much better. Still working with pulmo group and through addition testing they have ruled out COPD, Bronchiectasis, lung cancer, ILD’s, etc. And my current spirometry results show “stunning” improvement per my pulmo. So he remains adamant in his asthma diagnosis.

Now he agrees that I likely had severe Covid late last year and the asthma is my gift that keeps on giving from Covid. He also says that at this point it really doesn’t matter what triggered my asthma (Covid or whatever) because my lungs are fundamentally fine and suggests that it’s pointless to dwell on what might have caused this. Anyway, my asthma is seemingly improving, very slowly, over time … I have a few good days, and then a bad one where my chest tightens-up, breathing feels labored, and I produce sticky, white phlegm (annoying and tiring). Has anyone else received an asthma diagnosis post-Covid, and if so … do you see it improving over time?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@pht1123

Hi SMD,
I hope this note finds you feeling better. I offer this advice not as a health care professional, but as a fellow asthmatic and asthma educator. (I am asthmatic since I was a child, but it has gotten worse as I have gotten older.) If you are young enough to still get your period, it could also be premenstrual asthma which is related to your hormones. Please consult with your provider for the best possible care. With that being said, just using albuterol every 4 hours is not good - as it does not help the inflammation in the lungs to improve - it is a rescue medication and could cause the elevated BP and increased pulse rate. There are many steroid inhalers or combination inhalers - and I have a pic attached for you. I have been using Budesonide nebulizer - every 12 hours. No matter which steroid inhaler you use, please remember to do good mouth care so you don't develop a fungal infection in your mouth. There is also a 12 hour albuterol nebulizer - Brovana - Arformeterol - which can be helpful. I know how difficult it is to constantly do nebulizers - making sure they are not too close together. Unfortunately, you may need to try different steroid inhalers - powder vs HFA - to see which is best for you. This can be costly as well - so ask your provider for samples if possible. If you are new on this asthma journey, it may be too soon to consider biologic medications (Dupixent, Xolair, etc.) There is also an old medication - Theophylline - which is a bronchodilator - and not a steroid. This is a possibility - but blood work needs to be done to make sure you are in the normal blood range for this medication and not toxic. Please consider raising the head of your bed with blocks or with large blankets under the top of your mattress. If you use many pillows, you may develop a pain in your neck.
Please feel free to write back and let me know how you are doing. Good luck.
Pam

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Thank you so much for all this information. This all started in January after I had covid. In May I started seeing a pulmonologist. He started me on Trelegy Inhaler and Singulair. I felt a difference right away with Trelegy. Five days later felt much better almost like new, however it really raised my blood pressure. (I also got AFIB from Covid, so I am am taking Eliquis and Toprol XL). I felt so good and didn't take anything like an inhaler for the next 5 weeks. But then the cough came back again. So he gave me Airsupra (which has Budesonide in it. The next day I broke out in a rash and high blood pressure again. He said in 30 years he has never seen that reaction and didn't think it was from Airsupra. He wanted me to take an inhaler that was just budesonide. I just couldn't knowing my reaction to steroids. I know the rash was from the airsupra. CT scan and x rays come back fine. So that's why right now I'm taking albuterol. And looking for a new doctor. I just didn't know if there was a inhaler that could work for the cough that didn't have the steroid being cortisone or the budesonide. I am 72 years old. The first time I had covid in 2022 I had a lot of inflammation and ended up getting cortisone shots in my knee (which that doctor listen to me and gave me less of a shot) and everything was fine. But then I went to a pain management person for my back and shoulder. Both time from the injection of cortisone I got a hives on my stomach. The exact place where this last reaction was located on my stomach from airsupra. Sorry this is so long..I really appreciated sharing your knowledge with me. Do you think there is any inhaler that could help me ? I think my next doctor I'm going to see will maybe be a ENT.

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@pht1123

A side effect of inhaled steroids is hoarse voice. If possible, see if there is an inhaled steroid which may be in a different form, which may help with the hoarseness. There are many available. Also, if you use a powder inhaler vs HFA inhaler, you may notice a difference. Inhaled steroids are recommended to keep the lung inflammation decreased and consistent. Everyone is different, but the basic premise is the same. Symbicort is a combo steroid med - maybe changing to a single med steroid inhaler will be helpful. Good luck.
(I speak as a fellow asthmatic and asthma educator).

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Thanks for that. I’ve been through quite a bit since then. I was able to go off for several months and did ok but still some nagging phlegm production after eating! Way too much acid production. Long story short I landed with allergy/ immunology who put it all together as a mast cell disorder and I’m now on cromolyn sodium liquid, a mast cell stabilizer to calm those babies in my stomach, 4x/day, Hr2 and H1 blockers. I use albuterol as needed. No inhaled steroid; no hoarseness. Just this week she prescribed Spiriva Respimat. I’ll pick it up today. An ongoing mess for sure. Long covid is cruel! But those mast cells seems to be the culprit. Histamines, cytokines in my case, pulmonary function is fine though, yay!

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@mimioto

Thanks for that. I’ve been through quite a bit since then. I was able to go off for several months and did ok but still some nagging phlegm production after eating! Way too much acid production. Long story short I landed with allergy/ immunology who put it all together as a mast cell disorder and I’m now on cromolyn sodium liquid, a mast cell stabilizer to calm those babies in my stomach, 4x/day, Hr2 and H1 blockers. I use albuterol as needed. No inhaled steroid; no hoarseness. Just this week she prescribed Spiriva Respimat. I’ll pick it up today. An ongoing mess for sure. Long covid is cruel! But those mast cells seems to be the culprit. Histamines, cytokines in my case, pulmonary function is fine though, yay!

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I'm so happy that you were able to find the culprit of your breathing issues. Good for you and your provider for being great detectives. It does make sense - with mast cells being the culprit. Glad to read that your symptoms have improved since you are on the right road to recovery. Good luck and feel better!

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@pht1123

I'm so happy that you were able to find the culprit of your breathing issues. Good for you and your provider for being great detectives. It does make sense - with mast cells being the culprit. Glad to read that your symptoms have improved since you are on the right road to recovery. Good luck and feel better!

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Thank you! Indeed it did feel like a lifetime sentence! All I can keep telling folks is be persistent and don’t give up! Mimi

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@smd0109

Thank you so much for all this information. This all started in January after I had covid. In May I started seeing a pulmonologist. He started me on Trelegy Inhaler and Singulair. I felt a difference right away with Trelegy. Five days later felt much better almost like new, however it really raised my blood pressure. (I also got AFIB from Covid, so I am am taking Eliquis and Toprol XL). I felt so good and didn't take anything like an inhaler for the next 5 weeks. But then the cough came back again. So he gave me Airsupra (which has Budesonide in it. The next day I broke out in a rash and high blood pressure again. He said in 30 years he has never seen that reaction and didn't think it was from Airsupra. He wanted me to take an inhaler that was just budesonide. I just couldn't knowing my reaction to steroids. I know the rash was from the airsupra. CT scan and x rays come back fine. So that's why right now I'm taking albuterol. And looking for a new doctor. I just didn't know if there was a inhaler that could work for the cough that didn't have the steroid being cortisone or the budesonide. I am 72 years old. The first time I had covid in 2022 I had a lot of inflammation and ended up getting cortisone shots in my knee (which that doctor listen to me and gave me less of a shot) and everything was fine. But then I went to a pain management person for my back and shoulder. Both time from the injection of cortisone I got a hives on my stomach. The exact place where this last reaction was located on my stomach from airsupra. Sorry this is so long..I really appreciated sharing your knowledge with me. Do you think there is any inhaler that could help me ? I think my next doctor I'm going to see will maybe be a ENT.

Jump to this post

So appreciate your sharing all this. Beyond your Toprol XL, are you on any additional beta blocker, ARB (angiotensin receptor blocker), calcium channel blocker, or ACE inhibitor either for your hypertension or AFib?

I ask because after 6 months of unrelenting post-COVID upper respiratory illness with periods of severe coughing, I am finally realizing that several of the medications I have been taking, on a maintenance basis, may have set the stage for my particular form of long COVID. (And btw, I am very close to your age, and I am lately experiencing drug side effects and sensitivities that I never suffered when I was much younger, a phenomenon that may also be affecting you.)

This week, I expect to receive a paid consultation with a terrific pharmacist who provides highly analytical medication therapy reviews, but while I await that appointment, I have learned that my ARB, in particular (losartan), has been found in multiple studies to produce the same risk of angioedema and related symptoms (bronchospasm, e.g.) as ACE inhibitors are already famous for producing, and so job 1 after my consultation is probably going to be replacement of my losartan. (In addition, my beta blocker, carvedilol, unlike metoprolol/Toprol, causes peripheral vasodilation similar to the vasodilation caused by ACE inhibitors and some ARBs, and so that will probably also have to be replaced, because it vasodilation generally contributes greatly to bronchospasm and also to the nasal blockage that is my worst symptom.)

It is well known that the peptide that causes excessive peripheral (non-cardiac) vasodilation (and, in turn, angioedema, bronchospasm, and nasal congestion) is bradykinin. Bradykinin behaves similarly to histamine, btw, but does not respond to the therapies designed to lower levels of histamine in patients with disorders like mast cell activation syndrome or histamine intolerance.

Best of all, my research is uncovering that in the early days of COVID, several important studies explored whether elevation of bradykinin in COVID patients might be contributing to the COVIDś most severe respiratory manifestations, and once this linkage was established across a number of patients, there was apparently some attempt to use bradykinin-reducing medications and supplements to bring levels down as fast as possible. I don´t know whether this line of research has continued and been applied to long COVID, but I would urge you to ask the next doctor whom you find to be clear-thinking and patient whether s/he would consider evaluating you for elevated bradykinin levels (that can then be treated appropriately).

My perfunctory research, so far, tells me that there are some well-established non-pharmaceuticals that can lower bradykinin levels. These appeal to me because once I am safely weaned from the blood pressure drugs that I believe play a big role in my now chronic upper respiratory illness and cough, I will need help in accelerating the normalization of my bradykinin levels, because it takes a while for bradykinin to normalize even after the offending medications are discontinued. The go-to items for this help are ginger, black tea, low/safe doses of Vitamin K, polyphenol-rich foods (like beets and beet root), and small amounts of aloe extract taken orally. (Because you have AFib, any supplementation with K would have to be very, very, very carefully considered, by your physician(s), in the context of the Eliquis you will be continuing and the features inherent in the AFib diagnosis itself.)

Godspeed to you in getting the answers and treatment that you need, and remember always that a hopefulness and even expectation that you will get lots better can do you no harm and could well increase your chances of recovery.

REPLY
@smd0109

Thank you so much for all this information. This all started in January after I had covid. In May I started seeing a pulmonologist. He started me on Trelegy Inhaler and Singulair. I felt a difference right away with Trelegy. Five days later felt much better almost like new, however it really raised my blood pressure. (I also got AFIB from Covid, so I am am taking Eliquis and Toprol XL). I felt so good and didn't take anything like an inhaler for the next 5 weeks. But then the cough came back again. So he gave me Airsupra (which has Budesonide in it. The next day I broke out in a rash and high blood pressure again. He said in 30 years he has never seen that reaction and didn't think it was from Airsupra. He wanted me to take an inhaler that was just budesonide. I just couldn't knowing my reaction to steroids. I know the rash was from the airsupra. CT scan and x rays come back fine. So that's why right now I'm taking albuterol. And looking for a new doctor. I just didn't know if there was a inhaler that could work for the cough that didn't have the steroid being cortisone or the budesonide. I am 72 years old. The first time I had covid in 2022 I had a lot of inflammation and ended up getting cortisone shots in my knee (which that doctor listen to me and gave me less of a shot) and everything was fine. But then I went to a pain management person for my back and shoulder. Both time from the injection of cortisone I got a hives on my stomach. The exact place where this last reaction was located on my stomach from airsupra. Sorry this is so long..I really appreciated sharing your knowledge with me. Do you think there is any inhaler that could help me ? I think my next doctor I'm going to see will maybe be a ENT.

Jump to this post

Low dose Trelogy is OK for asthma - and it is a combination med in the inhaler. Good luck with the ENT - maybe it is a severe allergy component which is setting off the asthma.
I had COVID last summer - and it knocked me out for 6 weeks. Had to increase steroids and eventually was able to taper down. I am steroid dependent and am very careful. I was sick in January (in hospital and on very high steroids). I am finally down on steroids - and working hard to decrease 1 mg per month - which is difficult, but I am hopeful.
Let me know how it goes.

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@pht1123

Low dose Trelogy is OK for asthma - and it is a combination med in the inhaler. Good luck with the ENT - maybe it is a severe allergy component which is setting off the asthma.
I had COVID last summer - and it knocked me out for 6 weeks. Had to increase steroids and eventually was able to taper down. I am steroid dependent and am very careful. I was sick in January (in hospital and on very high steroids). I am finally down on steroids - and working hard to decrease 1 mg per month - which is difficult, but I am hopeful.
Let me know how it goes.

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Thank you and Good Luck to you. If I didn't react to the steroids I think this cough would be gone. Didn't know Trelogy came in different doses. Maybe if I get a lower dose it wouldn't raise my blood pressure. Because for the 5 days I was on it, it helped so much. I love your outlook on everything...
Feel better, I'll be praying for you..

REPLY
@hrojzen0922

So appreciate your sharing all this. Beyond your Toprol XL, are you on any additional beta blocker, ARB (angiotensin receptor blocker), calcium channel blocker, or ACE inhibitor either for your hypertension or AFib?

I ask because after 6 months of unrelenting post-COVID upper respiratory illness with periods of severe coughing, I am finally realizing that several of the medications I have been taking, on a maintenance basis, may have set the stage for my particular form of long COVID. (And btw, I am very close to your age, and I am lately experiencing drug side effects and sensitivities that I never suffered when I was much younger, a phenomenon that may also be affecting you.)

This week, I expect to receive a paid consultation with a terrific pharmacist who provides highly analytical medication therapy reviews, but while I await that appointment, I have learned that my ARB, in particular (losartan), has been found in multiple studies to produce the same risk of angioedema and related symptoms (bronchospasm, e.g.) as ACE inhibitors are already famous for producing, and so job 1 after my consultation is probably going to be replacement of my losartan. (In addition, my beta blocker, carvedilol, unlike metoprolol/Toprol, causes peripheral vasodilation similar to the vasodilation caused by ACE inhibitors and some ARBs, and so that will probably also have to be replaced, because it vasodilation generally contributes greatly to bronchospasm and also to the nasal blockage that is my worst symptom.)

It is well known that the peptide that causes excessive peripheral (non-cardiac) vasodilation (and, in turn, angioedema, bronchospasm, and nasal congestion) is bradykinin. Bradykinin behaves similarly to histamine, btw, but does not respond to the therapies designed to lower levels of histamine in patients with disorders like mast cell activation syndrome or histamine intolerance.

Best of all, my research is uncovering that in the early days of COVID, several important studies explored whether elevation of bradykinin in COVID patients might be contributing to the COVIDś most severe respiratory manifestations, and once this linkage was established across a number of patients, there was apparently some attempt to use bradykinin-reducing medications and supplements to bring levels down as fast as possible. I don´t know whether this line of research has continued and been applied to long COVID, but I would urge you to ask the next doctor whom you find to be clear-thinking and patient whether s/he would consider evaluating you for elevated bradykinin levels (that can then be treated appropriately).

My perfunctory research, so far, tells me that there are some well-established non-pharmaceuticals that can lower bradykinin levels. These appeal to me because once I am safely weaned from the blood pressure drugs that I believe play a big role in my now chronic upper respiratory illness and cough, I will need help in accelerating the normalization of my bradykinin levels, because it takes a while for bradykinin to normalize even after the offending medications are discontinued. The go-to items for this help are ginger, black tea, low/safe doses of Vitamin K, polyphenol-rich foods (like beets and beet root), and small amounts of aloe extract taken orally. (Because you have AFib, any supplementation with K would have to be very, very, very carefully considered, by your physician(s), in the context of the Eliquis you will be continuing and the features inherent in the AFib diagnosis itself.)

Godspeed to you in getting the answers and treatment that you need, and remember always that a hopefulness and even expectation that you will get lots better can do you no harm and could well increase your chances of recovery.

Jump to this post

Thank you so much for this information. Where did you learn so much? Toprol XL and Eliquis are the only medicine I take for AFIB. I have heard the BP medicine can give you a cough. However, I have had this cough since January and didn't start AFIB meds until May. I do take H1 and H2 antihistamine (claritin and pepcid) because I had the covid rash. I also take Benzonatate for the cough daily. I am just so sensitive to steroids so I can't really take them. So far the only inhaler I can take is albuterol.

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@smd0109

Thank you and Good Luck to you. If I didn't react to the steroids I think this cough would be gone. Didn't know Trelogy came in different doses. Maybe if I get a lower dose it wouldn't raise my blood pressure. Because for the 5 days I was on it, it helped so much. I love your outlook on everything...
Feel better, I'll be praying for you..

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Hi SMD,
Thank you for your comment. Please go to the Trelogy website for more information. However, this may be interesting to you:

What should I know before starting TRELEGY?
Before using TRELEGY, tell your healthcare provider about all of your medical conditions, including if you have:

heart problems; high blood pressure; seizures; thyroid problems; diabetes; liver problems; weak bones (osteoporosis); an immune system problem; eye problems such as glaucoma, increased pressure in your eye, cataracts, blurred vision, or other changes in vision. TRELEGY may make your glaucoma worse.
or if you:

are allergic to milk proteins.
have prostate or bladder problems, or problems passing urine. TRELEGY may make these problems worse.
have any type of viral, bacterial, parasitic, or fungal infection.
are exposed to chickenpox or measles.
are pregnant or plan to become pregnant. It is not known if TRELEGY may harm your unborn baby.
are breastfeeding or plan to breastfeed. It is not known if the medicines in TRELEGY pass into your breast milk and if they can harm your baby.

I was prescribed Trelegy a long time ago - but I am allergic to milk, and could not take it. It is always good to check online for all drug interactions.
I usually check all the medications and interactions on Web MD Interactions site - just to be double sure they don't work against each other, are toxic together, etc.
Good luck. Pam

REPLY
@pht1123

Hi SMD,
Thank you for your comment. Please go to the Trelogy website for more information. However, this may be interesting to you:

What should I know before starting TRELEGY?
Before using TRELEGY, tell your healthcare provider about all of your medical conditions, including if you have:

heart problems; high blood pressure; seizures; thyroid problems; diabetes; liver problems; weak bones (osteoporosis); an immune system problem; eye problems such as glaucoma, increased pressure in your eye, cataracts, blurred vision, or other changes in vision. TRELEGY may make your glaucoma worse.
or if you:

are allergic to milk proteins.
have prostate or bladder problems, or problems passing urine. TRELEGY may make these problems worse.
have any type of viral, bacterial, parasitic, or fungal infection.
are exposed to chickenpox or measles.
are pregnant or plan to become pregnant. It is not known if TRELEGY may harm your unborn baby.
are breastfeeding or plan to breastfeed. It is not known if the medicines in TRELEGY pass into your breast milk and if they can harm your baby.

I was prescribed Trelegy a long time ago - but I am allergic to milk, and could not take it. It is always good to check online for all drug interactions.
I usually check all the medications and interactions on Web MD Interactions site - just to be double sure they don't work against each other, are toxic together, etc.
Good luck. Pam

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Thank you for all your help....

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