Pulmo visit & frustration!!!
 

Hi everyone,
I went to see the Pulmonologist on Fri. She told me I have Interstitial Lung Disease. There are several things that can cause it but mine is either that it is related to the MG or that I am a smoker. She believes it is most likely from smoking. If that is the case then quitting will fix it. If it isn't then they will go in and do a lung biopsy in 8-12 weeks. She told me either quit smoking or you will end up on oxygen and die. I have known I needed to quit for a long time but something about hearing that come out of her mouth scared me to death. She put me on Prednisone and a preventative antibiotic for the next 3 months and I had labs done to rule out any other auto immune diseases. Don't know the results of those yet. We will then do a follow up CT scan in 8-12 weeks. If it was the smoking she said it will be significantly improved. I am determined to stop smoking and have only had 3 in the last 3 days. Although I realize everytime I have one the withdrawal starts all over. I am 42 years old and started smoking when I was 16 years old. Other than smoking I live a very healthy life style. I exercise regularly, eat and sleep right, take vitamins but yet the smoking defeats all of that. Ok I almost hate to even post this because I KNOW it is withdrawal talking and only those of you who were or still are smokers will understand this but I am asking myself if this is the best my life is going to be why am I giving the cigarettes up? I know that sounds pathetic and I am ashamed to even admit that but I swear I feel like I just keep getting blindsided with one thing after the next. Is this normal when you're first DXed to find out there are other things going on too? I am taking 40 mg of Pred every other day. I took it Fri. and again today. I do think my energy level is better but my darn eye is still soooo droopy! How long does it usually take for the Pred. to kick in? I was thinking it was fast acting but maybe they mean compared to the 3-6 months it takes for the Cellcept to kick in. I was thinking someone on here had recently quit smoking, Pat maybe? If so do you have any tips for getting through the first few days of nicotine withdrawal? I never dreamed the physical withdrawal would be so bad. I was so dizzy yesterday I felt like I could pass out! I am sorry for being such a downer. I know in my heart that giving up smoking is going to do nothing but make me feel better even if it doesn't help with the MG and lung disease but right now I am grieving for the life I used to have and want back so badly. I just needed a good rant today:mad: Thanks for listening.
Kendra

Kendra, does your NEURO know that you are trying to quit smoking? I know several MGers whose neuros have warned them NOT to do this -- that this could possibly put them INTO an exacerbation/crisis. (Yes, I KNOW that a doc saying "don't quit" sounds crazy -- but, anything to keep us from getting stressed, ya know??) I know that you NEED to do this for your lungs -- but, you are probably going to have to have help -- and have your neuro keep an EYE on you!

I can't help you with the Prednisone, sorry -- no experience.

Pulmo visit frustration!!!
 

Jana,
No my Neuro doesn't know about the smoking yet. I will call him tomorrow and see if he has any concerns about it. The Pulmo offered to write me a RX for Chantix but I was thinking that was something you couldn't use with MG. I have patches, maybe I need to use them for a week or so just to be on the safe side. Thanks Jana, I never thought of there being a problem even though I know the stress isn't good for me.
Kendra

Hey Kendra,

I know exactly how you feel...I smoke too...and I am so ashamed of it as well...I've been smoking since I was 13 (13-years now...so depressing), and I want to quit so badly...I have quit several times...But I get depressed, and then delude myself into starting again...

The first time I quit smoking, I was so irritable that I was a terror to be around...I only quit for a month and a half...I quit several times after that...Once for 4-months...It wasn't as bad as the first time I had quit, mainly because I realized that having ill-feelings about quitting was what was making me so irritable...The withdrawal from nicotine isn't as bad as it might feel, if that makes any sense...It's sorta mind over matter (and believe me, I hate it when people say that, but it really is when it comes to smoking). The hardest part is the psychological part...Think about it...We've been smoking for at least half of our lives...It's something that's always been there...We have to basically re-learn how to live life without these buggers...(If you haven't noticed, I'm in the quitting mode too...lol)...We have to re-learn how to cope with life's stresses on our own, without the help of our gross-tasting, stinky, expensive 'pals'...

I've found taht when I quit in the past, it helped to stop drinking anything caffeinated, because I associated these with smoking...Drinking tons of water helps too and brushing your teeth whenever you feel like smoking...You might even have to stop seeing people who smoke, at least for a little while, until you get a firm grip on your confidance in living a smoke-free life...

It's true that stress is bad for MG, but if you don't feel stressed in quitting, it will be good for your MG...Sometimes I don't smoke for a few days...My heart doesn't pound as quickly or as hard, in fact, I don't notice my heart symptoms as much, my hands and feet feel warmer, my skin tone is better, breathing is easier...That itch is there, though (the one that wants to be scratched by cigarettes)...The secret is to figure out how to relieve that itch with something else...re-learn a life without cigarettes...That's the secret...

-and you can do it! Don't be down! There are plenty of people who struggle with addiction, and it's not easy to overcome...Have faith that you can do it, and don't feel down about the past, when you started, it's the past- you can only control today (this is what I tell myself too)!

:hug:

I am sorry you are going through this as I too have lung problems and yes, am a smoker too, although a lot of the times I will just hold the cigarette, just holding it makes it easier than just "throwing them away"

I am like you in the fact I eat well, I exersize {well I did until recent setbacks won't allow for it} and I don't drink. So smoking was my only vice, I still have to take a drag now and then or I would lose my mind. I don't take Pred {due to allergy} but I can say pred makes you a bit "crazy" or it did me :rolleyes:

I am putting a post up about another lung issue you might want to look into.

And for all you other smokers, here is something to ponder.

My brother-in-law was a heavy drinker and smoker, when he was DXed with cancer he quit smoking and drinking and he got soooo sick that we all told him to stop quitting, that the stress on his body would kill him faster. I know I shouldn't say that but its the truth.

Hey Kendra,

I take prednisone and it makes me very dizzy...This could be the cause of yours, rather than the quitting...I never really felt dizzy after not smoking...If you're feeling really distressed about quitting, though, that might make you feel panicky and anxious...That happened to me...I have read that other people have felt dizzy after quitting...I think they thought that it was because blood flow increases to the brain and other parts of the body...Basically, your body is healing. :)

The main things I notice are brainfog, a bit of fatigue and the urge to smoke...

I've found that drinking lots and lots of water for the first few days gets the nicotine out of the blood stream faster...Rather than the typical 3-days it takes to get rid of the nicotine, you could be feeling better in a couple or less with lots of water...The faster you get rid of the nicotine, the closer you are to relieving the 'physical' urge to smoke...

I've done the patches in the past, during my first couple of quits...The patches were very strong and I found that it just prolonged the withdrawal, and was expensive...I also got palpitations from the patches (sometimes there is more nicotine in the patches than what you would normally smoke in a day, so it might be worse than smoking, in terms of nicotine).

hey Joan,

I know...The same thing happened to my uncle...He had been smoking since he was like 10 or something and got lung cancer when he was in his 60s...He could only go a day here and there without smoking, even after finding out about the cancer and the anguish he would go through during just one day was horrible to watch...He smoked until the day he died, after the cancer had spread to his brain...:(

Do you know what we all noticed, though? He would be okay, in terms of his memory and cognition (this is after the tumour had already spread to his brain), then he'd go outside for a cigarette, come back in, and he'd be different...He'd sorta stagger around the kitchen and he'd forget where he was and what was happening just prior to going out...I don't know if it was directly from the smoking of one cigarette, but it would happen every time he smoked...He had cut down a bit during the last couple of months before he died...

HI Kendra!

Sorry to hear what pulmy said. I was a 30 year smoker (have now been quit for 6 years! not easy, but doable)

When my neuro diagnosed me, I was asked if I smoke or if I had ever smoked. Then they immediately wanted to rule LEMS in or out - saying it was important to know before using steroids. I was sent for Cat scan and tons of blood tests and NCV and SFEMG and pulmonary tests. I was also advised that LEMS is quite rare - - more rare than MG!

But in smokers, sometimes LEMS can masquerade as MG. Anyway, my tests ruled out LEMS - leaving me with the dx of sero-neg MG.

Get your neuro on board with your latest info from pulmonary doc. Go over treatment plan. Then get neuro's input on how to go about quitting and whether or not to use a chemical modifier (Chantix, Welbutrin, etc.)

Yes, this can be scary - but you are your best advocate. And you are more than capable of taking an active roll in your treatment plan. Let us know how it goes with neuro.

Sue

I have never smoked and I think my place in heaven when I die, is secured by the amount of people who I have helped to stop smoking.

I can tell you, that cigarretes have something in them that makes them more addicting and it is much harder to stop smoking "cold turkey" then it was a few years ago.
and any abrupt change is not good for a person who is ill.

so, a few days ago, I discussed smoking with one of my patients. and in order to help her with it, I took a calender, that I use to chart down meds, and started writing the number of cigarretes she is allowed to smoke each day, with a gradual tapeing down.

and then when I looked at what I did, we both started lauging, as it appeared as if I was "perscribing" cigarretes for her. and I thought-wow, that's going to look great in court.

now, seriously, I am a great advocate of not smoking, but I think that the combination of taking pred. and stopping to smoke like that, can be overwhelming, and I would go slower with both.

I am not familiar with the medical details, but it doesn't sound like you are in imminent danger at this point. I do hope you do not have intersitital lung disease, but even if you do, it is not a matter of a few days.

also most neurologists would start pred. cautiously, as it can make things worse in some patients.

I think that going from doing nothing to "pouncing" on you like that, can in itself make you feel horrible.

so, I would just try to get them to slow down a bit, and hopefully communicate with each other.

after all you are the patient, so you should be the one in charge. :mf_swordfight:

Kendra,

I'm sorry to hear that. It was weird because like 2 days ago I was looking into my records and it said I have a very mild case of interstitial disease, although I have never smoked. They pushed it aside since I had bigger problems, but they never told me about it.

Anyways, I know this withdraw thing is a pain but if my grandfather stopped cold turkey, because of what his doctor told him, I am sure you can too. Just make sure you keep an eye on your MG.

I hope you feel better soon,

Stephanie

Sue,

Congratulations on quitting smoking...Smoking for 30-years, then being quit for 6-years- you're my hero! That gives me so much hope!

:hug: