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Hi I am Samantha, i have Lupus and lots of different add ons. Things in the last few years have gone from what I thought were really bad but my Lupus is out doing itself at the moment. 4 weeks ago i was in a high dependancy unit that was so scary I could not breath for myself I just lay there fighting for each breath even with a mask that blow oxygine into me so fast i felt like i was in a wind tunnell. I now have damage to my lungs that wont just get better.

Now Lupus has moved on to my kidneys i am on my second does of anti biotics (again) to get on top of another infection.

It has been non stop or at least it fels like that for the last 5 yrs.

Is this the pattern that is to be expected, i used to get told by one of my doctors that it may subside but they dont say that any more.

Any advice would be nice.

Samantha
 

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Hello Samantha and welcome :)

I'm sorry to hear that you have been having such a rough time of it for the last few years.

I'm afraid no-one can really answer your question as to how thing will pan out for you in the future. The only predictable thing about lupus is its unpredictability :(

Some people can go through a rough time and then finally get their meds sorted and gain newfound stability. I suppose it really depends on where you are with treatment, what has been tried, what is to be tried... what your docs say...

I hope the antibiotics look after that infection properly.

I'm sure you'll enjoy being here and can benefit from the great support and advice here on the boards.

hugs :hug:
 

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Hi Samatha,

Welcome to the forum.:) It is nice to meet you.
You have been threw so much with your lupus.:hug:What a scary time for you unable to breath.

What meds are you on? Has your doctor tried changing any around?

Katharine is right the only thing about lupus is that it is unpredictable.

This site is full of caring members who are willing to share their experiences.
Take care,
Lyn
 

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I just want to add my welcome and (((HUGS))) for all that you have been through!

I am glad you are here and hope we can help you in any way possible

Stephanie
 

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Hi Samantha,

Welcome to the site.

I am sorry to hear you have been so unwell. I have not had your type of lung or kidney issues so can't help you there, but would like to offer you support :hug:. Maybe someone else will come along and share their experience.

Take care,
Lazylegs
 

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Hi Samantha and welcome to the board.
While I cannot offer any advice on your kidney problems, hopefully I can help with the lung problems.
I have interstitial lung disease in both lungs, plus asthma. As you said, with ild there is no chance of recovery. However, even tho you are short of air now, with time your body will adapt and adjust. I can rarely get a peak flow reading above 350, and most times it is under 300. It took a lot of work to get my body adjusting to the lower oxygen level, but it has happened for the most part.
I live at the top of a hill, so my yard/garden is pretty much either going uphill or downhill. I find if I am making a lot of trips up the bank, I can begin to trigger an asthma attack. I keep an inhaler with me most of the time when I am outside. Proactive self care will go a long way to making you able to live a more normal life. If you aren't already seeing a pulmonologist, you may want to see one for a consult.

The one thing to remember is that "there is life - in, with, and through lupus.
Sally
 

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Hello Samantha

Just wanted to say welcome to the site. I am sorry that you have been so ill, it must have been very frightening. I really hope that things improve for you soon. Let us know how you are doing.

Deb
 

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Discussion Starter #8
Thank you

Hello and thank you for your kind welcome.

I have been on quite a few drugs over the last few years from Morphone to Paracetamol as I am sure you have all been. The cocktail I am on at the moment seems to have the day to day stuff ticking over but as with anyone of us we have good days and bad.

Below i have listed the medication I am on and the dose, I only have the name on the box sorry. I no that they may be called things in different countries.

Adalat 30mg, Amitriptyline 200mg, Bisacodyl 10mg, Dantrolene 225mg, Hydroxychloroquine 400mg, Nitrazepam 5mg, Omeprazole 20mg, Pregabalin 600mg, Tramadol 400mg, Diazipam 30mg, Citalopram 60mg, CO-Amoxiclav 375mg x 3.

I use 2 inhalers and have steroids added orally as required.

I am waiting for 3 lots of results to come back firstly another lung function test, an ultra scan - looking for gall stones and finally tests from my neuropsychologist for my memory.

I am doing better as far as breathing is concerned the lady who mensioned the bod getting used to less oxygin I think that is what may be happening.

Thank you for your posts again i look forward to reading others experiences.

Regards,
SAmantha
 

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Hi Sam,
Hi and welcome to the site. It sounds as if the lupus is really giving you a time of it. This is a wonderful place to get support and advice from. There are a lot of caring people here. I am so sorry that you are having a hard time right now. I am sorry I don't have more advice for you at the moment, hang in there and we are here for you if you need us.
 

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Discussion Starter #10
Ahhhh when will I get a break

:mad: Hi its Sam again,

I had to go and see a doctor on Sunday I had a crushing sensation round by ribs and by skin felt terribly bruised and tender. I was worried I was heading back into the hospital.

I am still at home thank goodness and this time I have Shingles I just am not getting a break at the moment and I feel so low.

I feel really crushed at the moment.
Sam
 

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(((Sam)))

You have gone threw so much.:( I haven't had shingles but I have heard they are very painful.:hug:

I know it sometimes feels like we are not getting a break. We all have been there. You have all of us here that you can talk to or vent we understand.

Love,
Lyn
 
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