PS don't fail me now: anyone been treated w/ hormones for inhaled steroid resistant allergic asthma

[giamari23]

Hi All,

Has anyone had the experience of suffering from adult onset severe allergic asthma that is resistant to inhaled steroids and has been treated or had treatment tailored with sex hormones (anything from estrogen, progesterone, testosterone, DHEA-S or anything else)?

I know a lot of you have been generous in sharing your life experience, good and bad, and I'm coming to you now for help to identify people with experience in what I'm going through or help in locating doctors dealing in this treatment.

It's a long shot but so far I've not a lot a lot of success in writing to various research labs, none of my doctors ideas are working (this is my 3 or 4th in almost 10 years) and I've lost almost a decade to a sprawling set of medical conditions that doctors have been unable to resolve.

Being not unfamiliar with perplexing situation I've taken to reading journal articles and have noted research in the association of sex hormones and asthma in immunology journals. Given my constellation of medical conditions this seems consistent and likely to work, and also tracks with the escalation of other symptoms I had. My doctors are unresponsive to the information I bring forth and with a very long medical history its a long wait to get in places, especially with maintenance medications.

So my ultimate goal is to identify someone who has had this experience and look into who they have seen OR, conversely, find someone who is familiar with this subject matter in this particular vein of treatment so I can make my way to that location.

If people are willing to share and don't want to respond on this post directly just let me know and I can work something out.
If this post does not garner much information I will most likely reach out to the mods to remove it that is acceptable.

Thanks for reading and listening.
Gia

 

[MaisOuiMadame]

I'm sorry you are dealing with this!! I have no advice, but wish you the best of luck and hope someone else can chime in!! Bucketloads of healing dust!!

 

[missy]

I am very sorry you are going through this.

I have no personal experience to share with you about this specific ordeal but have you reached out to functional healthcare providers? Those who join eastern and western medical philosophies and who treat the whole person vs symptoms?

Also have you reached out on facebook and searched for groups that might have info to share? I have found (surprisingly) FB to be a good source of info regarding health issues and I would not be surprised if you could find a group on FB that might have helpful info and similar experiences to share with you.

I hope someone here who has gone through something similar will chime in with useful info for you.
I wish you good luck and good health and hope you can find what you need to make that happen.


ETA: A quick search on FB provided this:
https://www.facebook.com/search/top/?q=steroid resistant allergic asthma&epa=SEARCH_BOX

 

[smitcompton]

Hi G,

I have a lung condition that requires constant observation. The Drs refer to it as asthma. During my many yrs of having this new meds have come on the market. Once I changed meds and had a vast improvement in my breathing. However, thru the yrs, other new meds that came on the market and are used for treatment did not help me to achieve better results. Steroids were prescribed more and more. I was so sick from them that even when I was recently hospitalized for my breathing problems I refused to take those new advanced medicines. My failure to take them was blamed for my slow recovery. I can't take the new steroids.
I have stuck to my older new med(at the time), one which does contain a steroid, but has never effected me as these other steroids do. Now, I assume, that you have an inhaler for quick short term use as I do, and I use this inhaler which is albuterol every 4 hrs --three to four time a day. The inhaler that contains a steroid that I use is Qvar, which I use every morning--2 puffs, and again at 8 o'clock in the evening--2 puffs. I have never ever had a reaction to this med, but I think it is becoming passe as there are new meds on the market that they try giving me.

I get quite sick myself on steroids and I have heard that is not unusual. I don't get sick on Qvar.
I feel for you. I try to keep it simple. I've stuck with Qvar. I hope you find something. My biggest improvment came by seeing a lung specialist. Now I just use my GP.

Annette

 

[lyra]

I wish I could help. My husband has asthma and has 3 specialists working on his case. Unfortunately, he has to use steroidal inhalers and medications. He has shown some improvement, but they told him the next step would be biologics. I don't know how that works with asthma, what type they might prescribe and what delivery system. I take a biologic for my auto immune diseases and arthritis, through infusions. They are heavy duty meds. I haven't heard of the hormone treatment. He was on testosterone boosters for a while, but it didn't seem to help anything.

 

[LightBright]

Before you try sex hormones, can you test your 25(OH)D levels and get them up to around 55-70ng/ml? I supplement with about 5,000 IU D3 per day in the winter, to get those kind of levels. You can read about Vitamin D levels and steroid resistant asthma via Google search. I personally would be afraid of taking sex hormones because of the cancer risk. There is a risk, even if your family doesn’t have any history of endocrine cancers, you could trigger something unexpected and horrible, as I did. At the least, if you decide to go the sex hormone route, take all lumps and changes especially during the first five years of taking them with exceeding caution. Good luck and I hope you feel better.

 

[Karl_K]

i have adult onset asthma but its not as far as I know resistant to to inhaled steroids.
My problem is that every time I find a med that works the insurance stops covering it and have to find something else.
That seems to happen every 6 months. I went for months with nothing more than a few times.
It takes 8 months to get an appointment with a pulmonologist here so getting decent treatment sucks.

I will send out prays that you find something that works for you.