Lena's story

[lenasavage]

Hello!
My name is Lena and I was born in Sweden but have lived in US since 1975. The last 20 years in Santa Barbara Calif.
In February 1917 I was having trouble getting over a cold, could not stop coughing. Got treated for pneumonia but only got worse. They thought maybe Valley Fever! I started getting nosebleeds, and my gums bled and when I started coughing blood my pulmonary doctor did a biopsy.
My right lung was a bloody mush but he managed to get a piece out to send to a Wegener specialist in Palo Alto. I ended up in the hospital a very sick puppy. And it was confirmed I had Granulomatosis Polyangiitis.
He sent me to a reumatologist here in town ( who luckily was a specialist in this disease! ) She put me on 1000 mg Prednisone and five hours of Rituxin!
So over the next nine months I was on Prednison slowly decreasing the dose and Rituxin three more times. ( I gained 20 pounds...nice red apple cheeks!)
Now I'm off Prednisone and do Rituxin every six months for the rest of my life.
I wish I could say I'm symptom free, but I still have coughing fits and my throat is always full of mucus. Have to sleep on four pillows not to wake up choking and gagging. My nose stays clear thanks to Flonase!
I have developed arthritis in my hands and have aching body pain on my bad days. Some days fatigue overwhelms me.
But I decided to stay cheerful ( I'm alive!) and keep painting and having shows. ( I'm a watercolor artist) And I'm able to play with my little grandchildren...that's the best part!
That is my story and if anybody has a trick to get rid of the mucus ( short of a plumber's snake!) please let me know!
~ Lena

[me2]

Welcome to this forum. I just want to make a quick comment on your mucous question. Most helpful to me (over the last 40 years) has been to rinse my sinus out with salt/soda water using the Neilmed bottle. The Neilmed bottle and salt/soda packets are available from Costco or online. I rinse twice a day and it makes a huge difference in how comfortable I am. It is recommended that you don't use Iodized salt. I used to measure out salt and soda on my own but I find the Neilmed packets to be so handy that they are worth the little extra expense to me.

I sometimes add Alkalol to the water. Not a whole bunch (it is pretty potent) but enough that it seems about right. It is called a "mucous solvent" and I believe actually does help remove mucous. In addition it is mildly antiseptic. And it just feels good. I also make eye packs from it when I have had eye infections or other eye problems and I cannot imagine my medicine cabinet without it. I'm sure I've used several hundred bottles at this point. I used to buy it by the case for a discount. These days I do not use as much.

[Pete]

lenasavage

Love the sense of humor. It will be most welcome's here -- as you are. I hope me2's advice about sinus rinses helps. The image of using a plumber's snake to clear it out is best left unseen.

I had sinus involvement at disease onset, but never did have too much in the way of an excessive mucous problem. I take 10 mg of loratidiene and 10 mg of phenylephrine each day - loratidiene in the morning and phenylephrine at night. They have helped keep my sinuses pretty dry.

Keep enjoying those grandkids. They help keep us young!!

[lenasavage]

Welcome to this forum. I just want to make a quick comment on your mucous question. Most helpful to me (over the last 40 years) has been to rinse my sinus out with salt/soda water using the Neilmed bottle. The Neilmed bottle and salt/soda packets are available from Costco or online. I rinse twice a day and it makes a huge difference in how comfortable I am. It is recommended that you don't use Iodized salt. I used to measure out salt and soda on my own but I find the Neilmed packets to be so handy that they are worth the little extra expense to me.

I sometimes add Alkalol to the water. Not a whole bunch (it is pretty potent) but enough that it seems about right. It is called a "mucous solvent" and I believe actually does help remove mucous. In addition it is mildly antiseptic. And it just feels good. I also make eye packs from it when I have had eye infections or other eye problems and I cannot imagine my medicine cabinet without it. I'm sure I've used several hundred bottles at this point. I used to buy it by the case for a discount. These days I do not use as much.


Is this where I reply? ( new to this)
I do rinse my nose and also use Flonase. I just wish it would help lower down! Someone suggested Pepcid, but not much changed. Still have a lump of Gorilla Glue in my throat.

[drz]

Muccinex can help thin the mucous. I take a generic form 2x a day and more if needed. I also find the SinuPulse machine to work better for me than the squeeze bottles. I also make my own rinse with 3 parts non iodize salt and one part baking soda. The machine gives a bit more volume in a more steady flow and you can adjust the pressure. I rinse once every day when things are feeling good and more often when I have a lot of post nasal drip, congestion, nose bleeds etc.

The lump in the throat and coughing and clearing of throat from mucous irritation is one of my most persistent side effects of GPA. Mine comes from the most nasal drip from excess mucous caused by damage to sinuses from the GPA and inflammation from the GERD which can also be aggravated by maintenance meds to help control the GPA. Some times the inflammation of the throat gets so pronounced that I get evaluated fora possible stenosis developing or swelling in throat like in an allergic reaction.

I avoid using any decongestants since they can have a rebound effect and make things worse. The most effective ones are generally limited access because of concerns they can be misused to make illicit drugs. The popular substitutes are not proven to be any more effective than placebos and can have nasty side effects.

https://www.jwatch.org/na39054/2015/09/17/phenylephrine-no-more-effective-placebo-nasal-congestion

I take Protonix (40 mg tablets) 2x a day to help control the GERD. Flonase helps with bloody discharge and another one my ENT gave me to help GPA patients is a saline nasal gel spray. I have the Ayr brand and NeilMed and you can get both over the counter in any drug store that carries them. The Alkalol addition also helps and gives a nice cool refreshing feeling. I also use only a small addition to the rinses since it feels strong and is expensive too. It also comes in a spray that I have not used but this could be worth trying too.

[seied]

Lena,

Wow. You're so talented!
I hope you don't mind me sharing a link to your art for everyone here to enjoy.


Ed.

[NatriceRomeo]

Welcome Lena,
I know I feel quite blessed to find a group of people whom understand. I have to tell you I have had this disease half my life & it never occurred to me to look for a support group! I hope that you find comfort here as I have!
Natty


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[Masha]

Hi Lena,
Welcome! I don’t know if there is much I can add to what has already been said. Like drz I also use the Sinu Pulse machine. It has an attachment for the mouth, which I find helps the throat. I also use liquid night time Mucinix for colds and coughs. Before bed I rinse and gargle with a dry mouth rinse. If I find myself coughing in the middle of the night I get up and do it again.
For the leg pain I take a nightly bath with Episoak Epsom salt. When it is really bad I wear tights to sleep.
My doctor (Duke) also has prescribed Bactrim 3x weekly. I am slowly decreasing the dreaded prednisone. My previous rheumatologist had me on it for three years. Talk about pie face and weight gain! But the longer you are on it, your own system stops producing cortisone and becomes dependent on the prednisone. It has taken me all summer to go from 10 mg to 8 1/2. When I tried decreasing in the past, I went too fast, lost teeth and had flares. The only way to be positive about the bloated face is that I don’t have any wrinkles. Between that and the dental implants, I am an uptick for senior citizens.
I do have a hole in my septum and I don’t know if that will end up as a saddle back. I won’t worry. If it does I will take the advice of other members on this site and get big glasses, make it into a fashion statement.
I looked up your web page. WOW! Your watercolors are gorgeous. You are so talented.
Santa Barbara is a beautiful city. Many years ago, I lived in Los Gatos. That is where I learned to knit, which has proven to be a great thing on my down days. I always take my knitting to infusion.
All of the supplies that I mentioned including the tights or compression stockings can be found on Amazon.
You live in a great place, have a positive attitude and a ton of talent, so just keep having at it.
Stay with us on this site. There is always more to learn. And as you’ve seen from the responses many who are here to help and support.
Masha

[annekat]

Hi, Lena,
It's been bugging me for a few days that I didn't manage to reply to your post. Welcome to the forum! Of course, you have already received a wealth of knowledge and feedback.

First of all I have to say that I, too, found your artwork online and am very impressed by it. I was an art and design major but never could get the hang of watercolor painting. You have mastered the technique and your results are not only exquisite, but a lot of fun, the way you depict a variety of people as well as floral compositions.

I would just add one more thing about mucus management. I use a supplement called NAC, short for N-Acetyl-L-Cysteine. It is an amino acid and can be found at Super Supplements and The Vitamin Shoppe, as well as online. On the label it says other benefits than what I use it for. It has been found to be an excellent mucus thinner which may help with various mucus issues. Its chief benefit to me is in loosening that chunk of stuff in my windpipe that I'm always trying to cough up, whether it be from post nasal drip or secretions in the bronchial tubes. I think it works better than Mucinex, for me, anyway. I take 600mg twice a day, and it may take a couple of weeks to start working. It helps to drink a lot of water with it, as it does for Mucinex, too. Some possible side effects have been mentioned here by people who've researched it, so you might want to do the same. I haven't noticed any ill effects myself, and my pulmonologist approves of it, though I was the one who mentioned it. It has been a great relief having these things come right up without having to spend a lot of time coughing. I know others who swear by it, too.

If Mucinex works for you, you might as well stick with that, though you can use the generic, and I would suggest the liquid version, as someone did above. The generic name is guaifenisen, and if looking for the liquid, it may be labeled as expectorant. Be sure it is pure guaifenisen with no added dextromethorphan, a cough suppressant that has a rebound effect and can make things worse. Best wishes to you!

Anne

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[me2]

Hi Anne,

I forgot about NAC that you have mentioned before. The reviews online sound like it works for a variety of things. Guifenesin does not seem to help me much so I just ordered some NAC to give it a try. Thanks for jogging the memory.
Anything that could change my mucous output would be pretty amazing. If it seems to help I will mention on the forum.

Kirk

[annekat]

Kirk, somehow I'd thought you had mentioned NAC before. Guess not. I have a lot less mucus since my sinuses have eroded and nothing can collect there anymore. But I still have some, and the problem of it collecting in my trachea and being too thick to easily cough out. I hope it helps you, remember, may take a couple weeks, 600mg twice a day.

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[vdub]

Hi, Lena! I'm not on here as much as I should be anymore. It means that things are going well for me. However, your comment about developing arthritis in your hands intrigued me. I have also developed arthritis, but thought that it was just an old age thing. I never thought it might be associated with wegs. My rheumy has also told me that I might have psoratic arthritis. Anyway, you can see that the joints on some fingers are beginning to bend and the bones on the tips must be eroding, because the fingernails are becoming sharply rounded. Its all just kind of a big pain.


2659

[annekat]

vdub, that is interesting. I have arthritis at the base of one thumb, just below the wrist, and can see it starting on the other one. There is what I would call a knot on each. I know this is related to making pottery, and my rheumy says it is osteoarthritis, the wear-and-tear kind. I believe him, and was figuring the only other type of arthritis I might get would be rheumatoid arthritis. You have mentioned psoriatic arthritis before, and I just looked it up and saw that it, too, is a rheumatic disease and may also involve the skin. I will spend more time learning about it. I'm sorry that your fingers are flaring up, and hope it is not too painful and can be controlled with meds. I think my nails look a little rounded, too, but no finger deformities beyond the two "osteo" knots I mentioned before. (The left one is painful mainly when making pottery.) I have always kept in mind that people often have more than one autoimmune condition, and since there's been RA among my relatives, I figure I'm a natural for it. Now maybe I'll mention the psoriatic variety to my rheumy and see what he says.

All that being said, I'm glad to hear that you are doing well enough that you don't have to think about WG a whole lot and have taken a little vacation from posting on here much. Nice to hear from you, though!

Anne

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