[kate88]

Well, this is fun.....(much sarcasm)

Thursday night I woke up with pain radiating from my back to my chest and was unable to breathe. Went to ER, and they did chest x-ray and looked for blood clots. Found nothing. Oh, and they did a simple ekg.

My rheumatologist wanted me to start coming off of my prednisone, so I reduced from 40 to 20 mg Saturday. Breathing got worse yesterday, almost felt like I was going to pass out, when I walked farther than I should have.

And, not my legs are not working properly. Extreme weakness. When I try to lift them, it's like I am lifting dead weights.

I haven't been formerly diagnosed with lupus, it's just one of the suspects.

Anyway, anyone with breathing difficulties and then have their walking severely impeded.

I have two feet of snow at my house (which this doesn't normally happen in Seattle, and we have crappy city preparations for this.) When it snows in Seattle, seriously, some groceries stores shut down, and snow plows are not plentiful. My friend couldn't buy milk yesterday. Oh, and my husband and I discovered that our chains don't fit our tires, and we don't own a proper snow shovel, because it doesn't snow like that here! To get to the doctor, I may be calling on the kindness of neighbors or calling a cab. Or if I keel over, here's hoping the ambulances will respond. My husband's work has shut down today, so that's good, at least he is around to help his 28 year old wife who feels like she's 85 today. My poor husband deserves several medals from this weekend, this has to be taking a toll on him. But, you know, he's a guy, he doesn't complain.

For those of you who live in snowy climates, that last paragraph was mainly for amusement on the ridiculousness that is Seattle when it snows. I am trying to find irony and humor, but not laugh too hard, cause it hurts.

I am suppose to schedule a more advance picture of my heart and vessels today, and again I'm 28, this feels like something I should be doing 40 years from now. My PCP said I had costocondroitis, but the chest pain isn't improving and my rheumatologist said go back.

 

[Jirel]

I would think that going from 40 mg to 20 mg in one day is too much too fast. Even though I was only on 12 mg my doctor had me do 12 mg one day, 8 the next and then 12 again for a week before droping down to 8 permanently. And that's a mear 4 mg difference.

 

[Maia]

I agree with Jirel - and think that kind of drop could be responsible for some of your symptoms. The most I've ever dropped is 5 mg at a time. It depends on how long you've been on prednisone too... as to how much you can safely drop and how quickly.

I hope that's all it is... costochondritis and the big pred drop made things worse. Let us know how those tests turn out and in the meantime take care of yourself as best you can.

 

[Nutty]

Oh, please be careful. I've been in a wheel chair since June because of prednisone. It's is very rare, but a fast increase or decrease of prednisone can cause nerve pain and muscle weakness in your legs. I had pericarditis and I went from 8 mg to 80 mg in less than 2 weeks...I was in the hospital for 5 days. A couple of days later I woke up with the most excruicating pain in my knees. I have not walked since then. I'm 95% of the time in a wheel chair and I use a walker to make potty trips and that's all.

I don't think you should ever decrease more than 5 mg at a time. When I was reducing my prednisone, it was 2.5 mg for a couple of weeks and then reduce again by 2.5. When I got down to about 15 mg, I could only reduce it by 1 mg for the month. When I got down to 8 mg, that's when I got the pericarditis.

So, I would really recommend that you decrease by smaller amounts. I can't tell you what would work for you, but it has to be smaller doses. I know I accidently decreased my prednisone by 5 mg and I was so sick. If I forget to take my pills in the morning, by early afternoon I'm extemely tired and feeling miserable and my lung pain came back...that's the nature of prednisone.

Good luck,

Annette

 

[lazylegs]

Hi Kate,

Yesterday I caught part of the Seattle football game on tv. Those snowflakes were huge. Please be careful if you go out.

Costochondritis can be very painful. Certain movements will take your breathe away. I hope it is that rather than something with the heart.

Take care,
Lazylegs

 

[kate88]

Yea, I hear you guys on the prednisone drop

I was following doctor's advice on that prednisone drop. Made it to the doctor safely today. Neighbors and husband dug our car out of the snow.

That being said, I think that was way to big of a prednisone drop. As I come down, I am going to only decrease by 5 mg this Saturday.

I don't get to have an echo until Friday, but on a flip note, the family doctor I went today was the head of internal medicine at the hospital my rheumatologist works at. My normal family practice doctor closed his doors due to snow! I haven't been happy with my family practice doctor, and this head of internal medicine (her husband is a pulmonologist in autoimmune research) and she seems to work very well and closely with my rheumatologist. My suburbian family practice doctor-doesn't have the means to deal with me. So, I think consolidating my care under one hospital is going to happen and will improve my over all care.

Yea, so this costocondroitis, does this improve over time? Does it happen to people with lupus? What causes it? I guess I am wondering how long this is going to impede me....like if I try to go to work, am I just going to slow the process to being myself soon? Trying to walk around causes problem. The person i saw today just did tests, and was going to call me, when she had results.

I am inside now, just taking it easy. I guess I will just continued to be monitored. My walking problems have been problematic before now, this is not a new problem for me. On or off prednisone, sometimes my legs just don't work. I have had no answers from my neurologist. Unfortunately, I know from my work experience in Seattle, that sometimes things take a while to show up on an MRI. I work with MS patients and I know that they can have walking abnormalities for a year or more before an MRI shows the lesions that cause the problems. That being said, I just don't know what is causing my walking problems and maybe i will never know. All I can do is just continue to take steps that make sense.

While our imaging is great-it is not super sensitive to pick up abnormalities when people are actually at the beginning of their problems. Working with 230 MS patients has taught me that.

 

[KarolH]

Kate,

I can only add that I think also you dropped way too fast. Pred is always tapered down. I sure hope you get feeling better. This is scary.

 

[Jynnieneal]

breating problems

I know whenever I decrease my prednisone, whether it be 20 or 5 mg I always experience breathing difficulties and muscle pain. This last time in Sept. I was finally reduced to 5mg, and ended up in the hospital intibated and in an induced coma for 2 weeks. I had to go through acute rehab to learn to stand and walk again. I am finally walking with a cane. I am still on 3 liters of oxygen. I went to John Hopkins Dec 11 and again was admitted to the hospital, because of my breathing difficulties, and coughing up blood. Again I reduced the prednisone the prior week. I am now on 60mg of prednisone. I am not sure if the reduction of the medication and the breathing difficulty go hand in hand. They say I am still in a life threatening flare and we need to control it. They are starting me on cytoxan, and we will see where this leads me.

You are 28 and I am 38. I know what you feel like since I have have been suffering from all these ailments for the past 8 years, but was only dx with lupus 2 years ago, and dx with hypocomplementic urticarial vasculitis 3 years ago. Good luck and just hang in there. It is not normal to have that much difficulty breathing or if you cough up blood. That is what the doctors at John Hopkins told me.

Jyneal

 

[adorable]

chaest pain... difficulty in breathing....

kate,
that pain , radiating from back to chest and associated with difficulty in breathing.... before everytime i experience that i really dont know what to do then somebody told me try to breath in a clean plastic bag then lay flat on to your bed with out a pillow, it was an experience and doing that helps a lot.
take care...

 

[Lily]

Hi Kate,

How quickly you reduce Prednisone depends on how long you have been on it. If it's only 2 weeks or less then it's not unusual to taper quite quickly and at first in big increments.

Sorry you are having so much going on with no clear answers yet, I hope they get to the bottom of it soon.

Was your pain radiation in your upper back?

love
Lily

 

[kate88]

I was only on prednisone 40 mg for 10 days

In response to the last question, I was only on prednisone for 40 mg for 10 days, and then when it didn't seem to address everything it was being used for, my rheumatologist told me to drop to 20 mg.

Breathing difficulties are still present, and I have been on 20 mg since last Saturday.

The sharp pain that instigated me going to the ER started in the back and went to the front. They checked me for a blood clot, as I said before but couldn't find any in my lungs. Tomorrow I am having an echocardiogram, at the request of my rheumatologist, so that's good.

The walking problems seemed to go back and forth. Last night I had the worst migraine that I have had in probably years. Normal medication wouldn't work, and I started vomitting continuously, so my poor mother and step father drove me to the ER at 5 am on Christmas in a blizzard no less. I can't win. We let me husband sleep, mainly because he has already been loosing sleep, because he's worried.

I take a baby aspirin now everyday, because of that weird chest pain.

I still have blood and blood casts in my urine. My rheumatologist gets back into town Monday, and I know she is going to send me to a nephrologist for pictures of my kidneys. It's so weird, I have abnormal UA's consistant for weeks, but my blood work barely shows anything abnormal.

Here's hoping the echo show's nothing or if it is something, then let it be easily treatable.

I am having evoked and visual evoked potential tests after the new year, to see how the nerves behave in my brain and spinal cord and eyes.

Just a guess, but I think after the first couple weeks of January, there are going to be a lot of answers given.

By the way, the ER stopped the migraine, and gave me fluids. We still managed to have a really relaxing Christmas with my husband and parents. We postponed Christmas dinner until Saturday, so that my in-laws who live 70 miles away could drive in better weather, and all of us had a very pleasant time eating pizza and playing rock band on x-box 360. And, we all took naps too. My family has been really supportive, those who know what's going on. My mom is concerned, but seems to be taking in everything in remarkably calm manner. I feel bad that their Christmas was less than ideal, but I am so glad they are here right now.

Well, anyway, I am actually feeling alright for the moment, and I am going to enjoy that moment while it's here.

 

[Lily]

Hi Kate,

I'm sorry to hear you landed back in ER ((((((((((hugs)))))))))). It seems they are being reasonably thorough though and hopefully you will be a little closer to finding out the cause soon. :hug:

The reason I asked about whether the pain was in your upper chest is that gall bladder problems can cause really severe pain which can radiate from back to front. I would hope they are going to check that out for you with an ultrasound if even to just rule it out as a possible cause?

Do you have any white cells in your urine, or protein? Usually a doctor would want to rule out other causes like your bladder before jumping to conclusions that this is originating from your kidneys. Especially if you have only really had problems for a couple of weeks.

It's quite common for many Lupies to get blood and even some protein in urinalysis and not have any blood abnormalities. It's certainly been true for me, I nearly always have red cell casts and some protein which comes and goes and varies in severity. I have had thorough investigations with a Urogynaecologist to rule out bladder as a cause. They have also made sure my heart is ok.

They watch the red cells and protein closely and I now self monitor at home too. If it doesn't subside over a few days (the sun ALWAYS sets mine off) or if the protein is a high number they will usually do a 24hr urinalysis. That usually comes back with some blood and red cell casts but overall is ok, minimal protein. They worry if it gets over 150 in a 24hr period. This has been going on for years now with me and is improved on Imuran but not gone completely. At the same time it's not alarming enough to do anything else about right now.

Good luck and do let us know how your other tests go too.

love
Lily

 

[nicky00]

Sounds like a bit of a jump to me.

Have been for a month on 45mg for the first week and tapering by 5mg every three days.

Reading your post suprised me.

Nicky

 

[nicky00]

Sounds like a bit of a jump to me.

Have been for a month on 45mg for the first week and tapering by 5mg every three days.

My first thought was that if the Pred is a synthetic corticosteroid that replaces what you have in your body then dropping too quickly even if you still have alot must be a bit of a shock to your system surely...( I know dropping suddenly can be dangerous)??

Reading your post suprised me.

Nicky

 

[onetay]

Kate,
It sounds like you are going through a lot right now. The lupus is a funny beast but if we all take it one step at a time then we will all make the best of what we have. I am glad that your migraine went away. I have them all the time and if the imitrex shot does not work I have to go to an er and they give me a shot. I feel for you because migraines are so painful.

I to had a one time large amount of pure blood in my urine. The doctors were very concerned as I had a hyst. when i was 22 years old. They ran every test and still to this day they don't have a clue what caused it at all. I only tell you because like me they may not find an answer to the problem. I wish you the best in finding out what the problem is.

I am glad that your time with your family was not destoried by health problems. If you need to talk I am here for you anytime.
Tammy

 

[kate88]

good news about the Echo

Well, there is nothing wrong with heart according to the echocardiogram, and I am extremely relieved.

For whatever reason, I just have chest tightness, and I imagine it's going to go away. Interesting comment about the gall bladder-I never heard that before.

I feel like such a hypochondriac, but I know logically weird stuff is happening to me.

Basically, I have just had blood and red blood cell casts in my UA (no white cells or any indication of an infection, no bacteria from a culture). I was checked for kidney stones, and they couldn't find any with a CT.

Sounds like people with lupus, commonly have abnormal UA's, and unless things reach a critical point (like with protein showing up in a certain amount), that's when you need more monitoring.

I am feeling much more calm about stuff. I really don't want to have life altering problems, as I am sure no one does.

As far as the prednisone drop, as one of the moderators point out, sometimes I think Rheumatologists will risk a big drop, if the patient has been on prednisone at a higher dose (like 40 mg) for less than 2 weeks, if they think that the prednisone might be doing more harm than good.

Either way, I think my body noticed the drop, it sucked (felt like ****), but I don't think I am going to have go through that again, and the plan will be to drop my prednisone from now on just by 5 mg.