Feeling discouraged

[BookNut]

I had high hopes for my new treatments. The good news is they still work for reducing the post nasal drip and helping me get the gunk out of my lungs. The bad news is they have not prevented yet another flare. I am now getting less than two weeks after a pred taper before another asthma flare. i am so frustrated. We had our granddaughter visiting this weekend, and planned a lovely day in a cute nearby town on Skanaeatles Lake. I managed to go for the tour boat ride...but could not go shopping with my granddaughter. Just too short of breath. By the end of the day, my asthma meds were not doing their job and i was having a hard time forcing myself to go three hours between asthma nebs. I guess I am going to have to do what I have been resisting...go on long term prednisone. I started my usual taper today when I got back. I couldn't hold out any longer, since the short walk from my car to my living room left me gasping for air. I sent a message to my doctor asking her what she recommends as a maintenance dose. Grrrrr!! I am feeling very sorry for myself right now. It seems like I will never be able to do the things I have wanted to do in retirement. And I feel sorry for my husband. We are always having to change our plans because I am sick....again. Sorry for the pity party. I will feel better eventually. At least I will once I get over the pred rage that will show up in the next few days. Oh well. I have extremely constricted breathing, chest pain, and 40 mg of pred. I highly doubt that restful sleep is in my future! Thanks for being there for me.

[Pete]

Sorry to hear you're flaring again. You mentioned that your symptoms appear after you taper off pred. What is your starting dose? Do symptoms appear on the way down?

I've been at 2.5 mg for about two months with no issues. I'll drop to 2 mg when I return from vacation in a couple of weeks. I'll hold there for at least a month before dropping again.

Hope you get some long term relief soon!

[Debbie C]

Jacquie...vent away...I'm sorry you were unable to enjoy the day with your grand daughter,but I am sure you will get better and still be able to enjoy your retirement.
So you are on 40 mg of pred,what were you down to? They said this this was going to be a terrible year for pollen..do you think that could be a problem ? Hope you feel better soon

[BookNut]

Thanks Pete. The pattern is that I will continue to feel crappy for the first week of a taper. The second week I will gradually get better. Then I have a week, sometimes two feeling good...followed by a 3-4 day precipitous drop. I have resisted going back on for as long as a week...but that often lands me in the hospital. So, as they say, resistance is futile.

Maybe I will be able to get along on as little as 2mg. Will see. Maybe of I can at least get well enough to walk regularly and keep the weight off and the sugar levels from rising.

[BookNut]

Thanks Deb. I am on a continuous round of pred tapers...so I start at 40, work my way down to none, have a week or so of feeling good...and then start all over again. The time between taoers has shortened considerably in the oast two years. this is taper number 10 in about 13 months. The last taper started at 60. When I am in the hospital, I have been on as much as 125 mg a day. Crazy. At least..crazy is what I am when on that much high test!!

[Debbie C]

Maybe like Pete said you do need to take it more slower.Thats a lot of tapering down in 13 mos.

[renidrag]

Sorry to hear this Jacquie, no fun not being able to do what you want, especially at retirement, in the same boat. I also feel sorry that my bride doesn't do some of the things she wants to do.
Good luck on the taper and hope for good things for you soon.
Dale

[Alysia]

Dear Jacquie, I hope that you did have a peaceful night after all. I am sorry that you suffer so much. I think that maybe you better remain with the pred. I cant do without my 5mg. if you can reach, slowly enough, the 5mg, its better to stay there. My wg doc says that it is the level of the body's production of it. If it do the trick, let it do it. Although we prefer to be without our pred, sometimes there is no choice. Dr. Phil would say: "it is what it is".
Did you try for the allergies meds from the anti histamin group ? Its very popular in Israel. availble as Fenistyl drops.

[BookNut]

Thank you Dale and Alysia. I do plan to give the 5 mg a whirl and hopefully it will be enough to prevent asthma exacerbations for the most part. I was so sure the cause was my never ending post nasal drip and mucus on my lungs. The saline solution and NAC pills did such an amazing job of clearing that out that I was hopeful to have found the answer. No such luck. But at least I have found something that helps with my congestion....

[annekat]

So sorry to hear this, Jacquie, and late in responding. I tend to agree with Alysia that you might be better off remaining on a low dose of pred indefinitely rather than tapering completely off and then restarting the whole cycle again. It would be nice if you could get by on as little as 5mg. and I would hope not more than 10mg. In the meantime, there must be some other answers for your issues than just taking pred forever! I share in your discouragement and hope you can feel more optimistic at some point.

[BookNut]

So sorry to hear this, Jacquie, and late in responding. I tend to agree with Alysia that you might be better off remaining on a low dose of pred indefinitely rather than tapering completely off and then restarting the whole cycle again. It would be nice if you could get by on as little as 5mg. and I would hope not more than 10mg. In the meantime, there must be some other answers for your issues than just taking pred forever! I share in your discouragement and hope you can feel more optimistic at some point.

Yes...that will be the plan I am sure. I probably can maintain on 5 mg, as that is usually the last step pf my taper. I wonder of there is anything that will boost the adrenal glands? Prednisone dependence happens because prednisone takes over their fuction and makes them "lazy". Seems like there should be some way to prod them back to work...the lazy oafs!

Thanks for your well wishes. I will get over my funk eventually. I just had bigger ideas for my retirement than spending 75% of it in my living room!! Thank goodness for iPads and internet forums like this one!! At least I can stay connected!

[annekat]

Some feel the adrenals can be prodded by certain alternating methods of pred dosing. So, as an example, instead of taking 5mg. per day, you could take 10mg. one day and zero the next. I've heard of at least one person who has done this sort of thing with good results, and maybe it is worth some consideration. I wonder if your docs would think there could be any value in it.

[Dirty Don]

My adrenals were boosted/brought back partially by massaging them lightly for periods of time. Can't remember who suggested it or where I read it, but it seemed to help as the first time off pred I failed miserably. 2nd time was a success. Good luck.

[BookNut]

Thanks Anne and DrZ. I will bring these ideas to my doctor and see what she thinks. I don't even know where the adrenal glands are...so not sure about massaging them. Might be an excuse for me to go for a massage!!

[Pete]

Adrenals ride on top of the kidneys. Now, you can have a DIY massage. ;)

[annekat]

Adrenals ride on top of the kidneys. Now, you can have a DIY massage. ;) Now to find exactly where the kidneys are... upper part of lower back, right under the ribs? I imagine just a general, gentle but thorough massage in that area could do some good!

[Dirty Don]

Just under the ribs...

[Jaha]

Booknut,

Sorry you are down again, nobody likes to not be able to do the things that they plan or used to do easily. I haven't been on here for a while, have you gotten a confirmed dx yet? I am just wondering why you are going up and down on Preds, so drasticly. It seems to me that, the up and down stuff alone could cause you to have bad side effects and emotional lows. We need to remember, that we aren't specialist and to consult more closely with our doctors, on these things. Good luck to you

[BookNut]

Thanks for your response Jana! I guess you could say that I have encountered the downside of having many doctors treating me. I mainly depend on my asthma specialist. She has always referred to my gradually worsening condition as "my asthma-like" illness. She keeps looking at possibilities because my responses to treatment are atypical. She referred me first to an immunologist who mis-diagnosed me with Wegeners. That's how I came to be here. Then she referred me to both a pulmonologist and an ENT. The problem there turned out to be a combination of a rather dismissive pulmy and the fact that he is in a different hospital medical system than my asthma doc - so information does not always transfer to her records seamlessly. The pulmy diagnosed asthma and MILD bronciectasis - but the diagnosis of bronciectasis did not carry over to my asthma doc. The pulmy insisted that the Bronchiectasis was too mild to cause much trouble. I think the problem with him is he treats mostly patients with end stage respiratory problems, so I look pretty good to him. I have written him off after my last visit. My husband had to bring me in a wheelchair because my breathing was so bad. We got nothing new from him and, at the end of the visit, he said, "Well - I don't think I need to see you so often now. Once a year should be sufficient." Grrrrrr.

Anyway - the next time I went to my asthma doc, she took one look and called an ambulance. While in the hospital, a nurse suggested that I try saline solution in my nebulizer. It worked so well - that I began to research what conditions it is used to treat. I discovered that it is a common treatment for Non-Cystic Fibrosis Bronchiectasis. That opened a whole new path of treatment....especially since now my asthma doc knows about the Bronchiectasis.

I was feeling very encouraged with the new med - n-acytlcysteine - and the saline nebs. But I ended up going downhill again. Hence the feeling of discouragement.

I seem to have become quite dependent on the prednisone. Just can't make it without it. So - after this taper, I am going to stay on 5 mg and see if that will keep me well. I am also looking into methods to make my adrenal glands wake up and do their job. The good news is that the new pills have definitely taken care of the sinus and post nasal drip issues. That has GOT to result in improvements to my lungs.

So at least I have a plan.... - 1) Reluctantly giving in to long term prednisone. 2) I will keep my ENT and consider sinus surgery if needed, and 3) I will fire my pulmy.

Thanks for reading all this - if you are still awake! :rolleyes1:

[Pete]

All in all, it looks like a good plan. Here's hoping it works well!

[BookNut]

All in all, it looks like a good plan. Here's hoping it works well!

Thanks Pete!!

[annekat]

Jacquie, are the new pills you are referring to, that have taken care of the sinus and post nasal drip issues, the N-acetylcysteine? I assume so. I keep forgetting to try to get than when I'm in town.... not going to the right places, and found out yesterday they don't have it at Safeway. I know where they probably have it. Your report on it sounds great, although I'm sad that it's not preventing all your problems and you still need the pred so much.

I have just started trying Chestal, a homeopathic cough syrup, mucus thinner and loosener, which was recommended by Debra C. on here. I'm reserving judgement on the homeopathic part, as some think it is quackery and I really don't know. But after a couple of days of using it, I feel pretty good and have a lot less feeling of mucus in my windpipe making me SOB. Whether it is really because of that, I have no clue. I have my doubts, given your past and current history, whether it would do a lot for you. But I do like that there are no crappy ingredients in it.... I was looking at a bottle of liquid guaifenesin expectorant, which works somewhat for me, and it is full of stuff like high fructose corn syrup, red dye, artificial sweeteners and flavorings, and god knows what else! I know that red dye is a big problem for you.

Well, just a little ruminating. I want to fire my pulmy, too, but he's the one treating my WG! I see him next week, and I'm on the verge of making a decision to look for another doc, preferably a rheumy, to start with. I hope I have the gumption to do it! There just aren't many in this town to choose from, is the problem.

[BookNut]

Anne...Yes, it is the n-acytlycysteine.brand name is NOW. It IS available on Amazon. I have not looked other places...but suspect it might be hard to find.

I will look into the Chestrol as well. I do not know much about homeopathy. My much admired and loved Aunt Mage from England was a big fan. I saw the results of one remedy in action. There is something she used called Arnica. A neighbor came over once when I was visiting. She had fallen the day before, and the entire outside of her upper arm was hideously black and blue as a result. aunt Madge gave her some arnica pills. They were about the size and appearance of tic tacs. The very next day, she came back to show us. the entire bruise had turned a very pale yellow. It was amazing to see!

I think you should definitely try another doctor. It is SO important to find someone you trust who listens and is willing to be a partner in your health care. Go for it!!!

[annekat]

Thanks, Jacquie. I know of some places in town that sell the NOW brand, but whether they'd have the n-ac, I'd have to see. I think I've seen it before at Super Supplements, if not somewhere else. It's just in a part of town I don't go to much. In fact, I hate driving anywhere anymore. So maybe ordering it on Amazon would be the ticket.

The spelling is Chestal, and I got it at a Rite Aid store, and it is available on Amazon for less, but without any shipping charges factored in. Even if it didn't help your mucus situation a whole lot, let alone your asthma, it might help soothe whatever cough or throat irritation you have. It is pleasant tasting, made with honey, and contains nothing but the homeopathic dilutions of several herbs. I have heard of arnica quite a bit for muscle aches, bruises, etc, and know one can buy creams and things containing it. It wouldn't necessarily be homeopathic, depending on the type of preparation your aunt got, but could have been. I'll trust your Aunt Madge that it was. I have done some research on homeopathy in the past, and the explanation for how it works is pretty strange. So I need to investigate some more.

Thanks again for the pep talk on the doc! My biggest fear is probably a blood test showing kidney involvement, and if that happens, I think I'd switch for sure. This guy is far from being either a kidney doc or a WG doc. But I hope that doesn't happen and I still switch.

Anne

[BookNut]

I am finding a variety of products under that name...but only one with the homeopathic designation. It is a more expensive than the ones not designated homeopathic. Both seem to have good quality ingredients list. I will see if I can find both in Rite and so I can compare them easily. So nice to see they are dye free as I turn the color of a boiled lobster if I have anything with red dye in it!

[annekat]

Here is the site for Chestal and the company that makes it: Chestal Cough Syrup (http://www.chestal.com/) It looks like all their products are homeopathic, and they explain some about the process. It involves specific, exact dilutions of plant materials, which are supposed to work better than just the plant materials themselves in full strength form. That is the part that is hard for me to understand, why that would work.

[drz]

You sound like an excellent candidate for an evaluation or at least a consultation with some experts at some world class facility like Mayo. I know they have an extensive network now for such consultations and ii might be nice to get an outside opinion to help confirm the best treatment plan for your problems.

[kaysee]

Sorry to hear you are feeling bad again Jacquie. I hope you get on top of this again soon. Wishing you the best.