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debbie-b
01-15-2013, 04:25 PM
The friday before Christmas, I had to go to see my primary, I had a bad cough. Of course it had turned into Bronchitis. He gave me antibiotics and it got better, within a few days.
The weekend of New Years Eve, I have had alot of pain, joint and muscle pain. I called the Rheumy and he told me to take Prednisone for 7 days, which helped with the pain, but I started to cough again. I was real short of breath.
This last saturday, I had to work from 6am-2pm. As soon as I got out work, I went to a Urgent Care, because I had a hard time breathing, not that I couldn't breathe at all, but it was hard to take a breath. My saturation was at 90 and I received a Nebulizer treatment, it improved my breathing a little and the saturation was at 93. The doctor thinks it might be walking Pneumonia and gave me more Antibiotics, which I will take the last one tomorrow.
I have been home from work since Sunday, but have to go back on Thursday. I feel a little better, but not much. I am still short of breath with very little activity.
My rheumy said that it takes awhile until I will be better and to give it time.
Now I have read that MTX can cause shortness of breath, I haven't been taking it since I got sick, three weeks ago.
I will see my rheumy as soon as I can and tell him that I want to stop MTX all together, since he lowered the dosage because of bad liver tests, it has not helped me whats so ever. So I am thinking, why put this poison in my body, if it doesn't help.
I am thinking to go back on Plaquenil to prevent further damage to my organs and joints, but no more MTX. He told me if the MTX does not help, he would start me on Embrel. I don't want any of that anymore.
Yes I do have alot of pain, but nothing has helped, except when I was on a high dosage of MTX.
I am so sick of all this.
I am not going to do anything without the rheumy's approval, but I don't want that crap in my body anymore.
Still short of breath and having to back to work on Thursday. I could cry.

Debbie

Sorry for the whining.

jolynnhughes
01-15-2013, 04:47 PM
Debbie, I'm afraid I can't help you much. I am still waiting for a firm diagnosis, so for now, I don't take any of that. I do know that people with chronic diseases often have to make tough decisions -- decisions regarding treatment and medications. Maybe your breathing problems are not from the MTX but rather from an infection that hasn't ever really cleared up completely. Those kinds of infections can be difficult to clear up, and sometimes it takes trying several antibiotics to find the right one. I hope you feel better, mentally and physically, very soon. Autoimmune diseases are so strange -- so many symptoms that come and go. I'll say an extra prayer that this one for you goes quickly and that you can continue to take the MTX that helped you with the other symptoms. Hang in there!

debbie-b
01-15-2013, 05:01 PM
Debbie, I'm afraid I can't help you much. I am still waiting for a firm diagnosis, so for now, I don't take any of that. I do know that people with chronic diseases often have to make tough decisions -- decisions regarding treatment and medications. Maybe your breathing problems are not from the MTX but rather from an infection that hasn't ever really cleared up completely. Those kinds of infections can be difficult to clear up, and sometimes it takes trying several antibiotics to find the right one. I hope you feel better, mentally and physically, very soon. Autoimmune diseases are so strange -- so many symptoms that come and go. I'll say an extra prayer that this one for you goes quickly and that you can continue to take the MTX that helped you with the other symptoms. Hang in there!

Thank you so much. You are right, sometimes it just takes a long time to get well, especially us lupies have a hard time getting well sometimes.

Debbie

tgal
01-15-2013, 07:02 PM
Oh Debbie my friend. My heart hurts for you. I am so so sorry that you are feeling this bad.

I know how frustrated you are right now but please don't make any rash decisions. Try and get to a place where you can breathe before you make decisions about taking or not taking meds. Remember that often the pain you feel and the outward symptoms are often just a small sample of what is happening internally. I know you won't do anything without talking to your doctor but I also know how frustrating and heartbreaking this disease can be.

Have they tried giving you symbicort (so) or something for asthma? Maybe an inhaler? I had the hardest time breathing early on (before my current level of steroids) and those helped me so much. Maybe you should try seeing a pulmanologist and have them try to help with the breathing issues.

Don't forget that we are here for you!

steve.b
01-15-2013, 11:19 PM
a little of my history, from a similar complaint.

i always had a small lung capacity, but large lungs.
i had trouble exhaling fast.
and i was always getting sick with flu like symptoms.

i tried eveything.
i would take double dosages of antibiotics for a chest infection,
as 1 was never enough to stop it.

one of the main causes was that i had inflamed and blocked synuses.
these caused all sorts of indirect problems.
once i had them cleaned, they would not cause bacteria infections in my chest.
they were resonsible for a lot of my inflamed chest muscles too.
i still have problems......
but nothing like before.

have you had your upper respitory system checked?
it may help

debbie-b
01-16-2013, 05:36 AM
Oh Debbie my friend. My heart hurts for you. I am so so sorry that you are feeling this bad.

I know how frustrated you are right now but please don't make any rash decisions. Try and get to a place where you can breathe before you make decisions about taking or not taking meds. Remember that often the pain you feel and the outward symptoms are often just a small sample of what is happening internally. I know you won't do anything without talking to your doctor but I also know how frustrating and heartbreaking this disease can be.

Have they tried giving you symbicort (so) or something for asthma? Maybe an inhaler? I had the hardest time breathing early on (before my current level of steroids) and those helped me so much. Maybe you should try seeing a pulmanologist and have them try to help with the breathing issues.

Don't forget that we are here for you!

Thank you Mari,

Yeah, I am on Symbicort and Proventil, neither of them help. I do have Asthma, but this is different, when it's from Asthma, the inhaler always helps, this time it doesn't.
Well, both the primary and the rheumy say, that I have to be patient, sometimes an infection can take months to heal.
About the MTX, I am just going to talk to the rheumy, to see what he thinks.
You know, I have had a dry cough for many months and the rheumy always asked at every visit, if I still had it, I told him I did and he would say, " we have to keep an eye on it". Well, now, that I also have shortness of breath, I have researched it and every time when I put in " dry cough, shortness of breath and lupus", this is what pops up, CHRONIC DIFFUSE INTERSTITIAL LUNG DISEASE. It looks like it goes hand in hand with Lupus sometimes.
I guess I have to wait and see, what the doc wants to do next.

Debbie

debbie-b
01-16-2013, 05:40 AM
a little of my history, from a similar complaint.

i always had a small lung capacity, but large lungs.
i had trouble exhaling fast.
and i was always getting sick with flu like symptoms.

i tried eveything.
i would take double dosages of antibiotics for a chest infection,
as 1 was never enough to stop it.

one of the main causes was that i had inflamed and blocked synuses.
these caused all sorts of indirect problems.
once i had them cleaned, they would not cause bacteria infections in my chest.
they were resonsible for a lot of my inflamed chest muscles too.
i still have problems......
but nothing like before.

have you had your upper respitory system checked?
it may help

Thank you Steve,

I do not have any sinus problems, not that I know of anyway. But I will mention it the next time I'll see my primary.

Debbie

tgal
01-16-2013, 08:44 AM
Don't you love Lupus? NOT! We do love you though!

debbie-b
01-16-2013, 09:06 AM
Don't you love Lupus? NOT! We do love you though!

Oh Mari, you are so sweet.

Debbie

Shanna
01-16-2013, 03:39 PM
Have they checked to make sure you dont have fluid in your lungs?

SleepyInSeattle
01-16-2013, 04:28 PM
I have no good advice, but just wanted to say I am so sorry you're suffering with all this right now, and I am sending you lots of good wishes and (((((hugs))))). Feel free to come on here and complain anytime and let us know how things go....

debbie-b
01-17-2013, 04:35 AM
Have they checked to make sure you dont have fluid in your lungs?

The doctor at the urgent care said " There is no fluids in the lungs", she listend through the stethoscope.

Debbie

debbie-b
01-17-2013, 04:37 AM
I have no good advice, but just wanted to say I am so sorry you're suffering with all this right now, and I am sending you lots of good wishes and (((((hugs))))). Feel free to come on here and complain anytime and let us know how things go....

Thank you sleepy.
I have been whining and complaining so much to my hubby, I have to give him a break and whine to you guys.

Debbie

tgal
01-17-2013, 03:42 PM
That is what we are here for Debbie! We even serve cheese to go with the whine! LOL

debbie-b
01-17-2013, 05:50 PM
You just made me lol.

Debbie

debbie-b
01-19-2013, 07:38 PM
I am finally feeling better.
After this episode of not being able to breathe, I have decided, I would take my pain over not breathing. At least with pain, I can take some pills and feel a little better, but this
not not being able to take a good breath, is very frightning. It looks like you guys were right, it just took a second round of antibiotics, to make me better.
Thanks for always being here.

Debbie

steve.b
01-19-2013, 07:54 PM
I am finally feeling better. ........ it just took a second round of antibiotics, to make me better.....

this comment suggest that you have a possability of housing bugs.
i would reccommend talking to your doctor , dentist to find where the problem lies.
as i said, for me it was sinuses.
I had no other signs to suggest.
it was only with a doctor looking up there that we found the problem.
i also know others that have throat issues. they breed the germs there and need medical intervention.

jmail
01-20-2013, 09:28 AM
... I would take my pain over not breathing. At least with pain, I can take some pills and feel a little better, but this
not not being able to take a good breath, is very frightning...

Amen, sister!

It is definitely something to follow-up with your rheumy & pcp about. My docs are reasonably certain the lupus was attacking my lungs the last few years (but who can be certain of anything in lupus?). The pulmonologist I first saw for my lung issues a couple years ago was certain I'd had asthma since childhood, due to the condition of my lungs (after a breathing function test), but I hadn't had breathing issues until my fifties. As steve mentions, there can be other causes of breathing troubles, and that would include your blood, since your blood (with the hemoglobulin) is what "translates" the oxygen & carbon dioxide from/to your lungs & body cells.

debbie-b
01-21-2013, 05:43 AM
this comment suggest that you have a possability of housing bugs.
i would reccommend talking to your doctor , dentist to find where the problem lies.
as i said, for me it was sinuses.
I had no other signs to suggest.
it was only with a doctor looking up there that we found the problem.
i also know others that have throat issues. they breed the germs there and need medical intervention.

I will mention it to my doctor, but I think my problem is working with the public, I am exposed to hundreds of people and their germs. All that while on MTX, that is not a good mixture.

Debbie

debbie-b
01-21-2013, 05:46 AM
Amen, sister!

It is definitely something to follow-up with your rheumy & pcp about. My docs are reasonably certain the lupus was attacking my lungs the last few years (but who can be certain of anything in lupus?). The pulmonologist I first saw for my lung issues a couple years ago was certain I'd had asthma since childhood, due to the condition of my lungs (after a breathing function test), but I hadn't had breathing issues until my fifties. As steve mentions, there can be other causes of breathing troubles, and that would include your blood, since your blood (with the hemoglobulin) is what "translates" the oxygen & carbon dioxide from/to your lungs & body cells.

Thank you.
I have had a huge bood test done last week, I should get the results today. Like I have said, I also have asthma, but this time the inhaler did not help.

Debbie