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Danica01
08-09-2012, 01:09 PM
I have been treated for Lupus for so many years. Plaquenil made me very rashy so we decided we would do the methotrexate. I have been doing the injections for the pasat five years. Recently I have developed a huge issue with infections and since last September I have been on anti-biotics every day except maybe a month thrown here and there. We decided to go into Mayo to see if we can find anything that would indicate while my body is just not doing very well.

So, after the first round of blood work they said all my labs looked great and I am wondering if this means that the Lupus is in remission??? If so then why do my joints still swell in my hands and why is my body unable to fight off simple infections? I am still in a lot of pain and just feel yucky! The tests that cam back high were the P-ANCA, high platelet count, SED rate is at the higher end of normal at 29. They have also found indicators of Valley Fever. After two visits to Mayo, lots of blood and urine testing and chest x-rays I am moving on to the pulmonologist and ENT. I will see the rheumatologist one more time before she refers me out because Mayo is a diagnostic center. I am taking .7 cc of methotrexate every Thursday. We are going to start lowering it down to .5 cc. The last time I did this I got so sick so I am nervous about lowering it.

Through the last few months my better half Tim has had to live in Albuquerque and Chicago and will continue to have to do that until January 31, 2013. I am on short term disability right now and I am traveling a little bit from Phoenix to Albuquerque. This means all the appointments and everything involved I am doing alone and when Tim is here he is so busy training that I feel there is no time for me or to even talk about what I have been going through. I feel lost because I feel so yucky but everything looks pretty on the inside of my blood. I still have issues breathing and I think I am just sad. I went from working full time being home with Tim to not working at all to be alone without Tim. He is my best friend. He is now questioning if I even have Lupus because the blood work came back fine and I tried to explain to him that even though blood work looks great it doesn't mean it still isn't there. I tried to explain that it was just sleeping.

Don't get me wrong I have wonderful friends but you now how it is, you don't want to bother them with all the little things and you want them to come around so for me I put on my smile and trail away from anything that has to do with feeling bad. I feel more insecure now than I have ever felt during this fight with Lupus. Tim is out there traveling and I know he sees normal people and believe me, I am the farthest thing from normal at this point, hehehehehe!!!!! I just really needed to get this out of my heart and I am just hoping someone has felt these things before and will just be here. I just want to feel close to Tim, I want to stop all this testing and I just want to be able to walk around the block and not stop half way through because I can't breathe. When I am having a tough day I always look at Tim and say I am a sad panda today.......so I am telling you all I am a sad panda:-(

SleepyInSeattle
08-09-2012, 05:21 PM
What a bummer of a time right now - I'm sorry all this is coming down on you at once! :-(
You do sound like you have a good attitude through it all - does your doc know you are trying to handle all this alone? The office or a local hospital may have some services to make things a bit easier on you, whether it's transportation or whatever. Also, please let your friends help you sometimes - even if it's just to come over and watch a movie with you. Lots of times people WANT to help, they just don't know how. Sometimes difficulties bring friends closer, not push them away.
I think almost all of us can relate to your experience in one way or another...this disease puts us in some really uncomfortable positions sometimes, whether its having to change medications, manage fear and discomfort on our own, lose a job, lose friends, lose independence...it can be pretty depressing sometimes. It's tough to look at other people's relatively care-free, healthy lives and feel like such a SLUDGE. So yeah - feel free to complain to us - we understand!!!!
But also know that it won't ALWAYS be this way...things go up and down. Sometimes uncertainty is the worst part - hopefully a new medication regime will make you feel better, even if it takes some experimentation to get there. Keep working at it, and let us know how things go!

rob
08-09-2012, 06:46 PM
Hi Danica,

I'm sorry things are so difficult for you lately. I know about that "alone feeling" too, and I know it's no fun. It can make for some long nights of worry and fear.

Something in your post really struck me, and I'm not sure what it means, if it means anything at all. It could very well be just a coincidence, I don't know. I've mentioned to you before that both my home, and my business in Arizona used to be in Cave Creek, not far from Spur Cross Road. I lived there for 16 years, and I used to hike the exact same trails that you and Tim have. One of your pictures from your Day Hike Photo Album was taken about a mile from my house, and I recognize the gate with the barbed wire in a couple of your pics. I've literally stood in that exact same spot, and used to hike the same trails.

Not long after my last hike up around Spur Cross Ranch, myself and my friend who was on that hike with me got really sick, we both missed more than a week of work, and it turned out that we were both diagnosed with Valley Fever. After that I never felt the same again, and then, just under one year later, I was diagnosed with Systemic Lupus.

Arizona has a couple of so-called "hotspots" where autoimmune disorders, mostly SLE, are more prevalent. One area being down south in Nogales, on both sides of the border. It's just strange to me that you and I spent time outdoors literally in the exact same place, I had Valley Fever after having camped there, you have indicators of possibly having had Valley Fever, and, we both have Lupus. What are the chances?

I don't know, maybe there's no connection at all. My nights are sometimes spent wondering just how this all happens, how we get Lupus, and when a cure may be finally found. I guess I'm just thinking out loud.

Rob

steve.b
08-10-2012, 05:53 AM
danica,
yes there are others who know your pain.
my rhuemy is so happy with my results at the moment also.

i believe it is because my medication is at a good balance.

i still have lots of issues, and pain.
it is winter here in australia..... so i have all of the cold pains.
if i try to do anyhting that even slightly raises my body temperature......
my bowels havea very excited time.
i usually need a couple of showers, to clean myself up.
(so i know i am far from healed)

anyone who is results drive, does not see the problem, only the final picture.
if this picture looks good......then they say the problem has gone.
but actually the problem is masked by good medication.

Danica01
08-10-2012, 12:43 PM
You all are the best! Your posts put me back on the normal trail......well, that is what is normal for you and me:-) I love life and want to take in as much as I can while I am here. It is hard sometimes and scary and very lonely but just having you all here and knowing that someone is listening is so comforting.

SleepyinSeattle: The doctor I see the most does know about the situation. He sees Tim and knows us very well. He always asks how I am doing and how Tim is doing. Sometimes I don't feel as if I am being 100% honest. I tell him we are fine and Tim misses home and we only have a little over 5 more months to go. I should tell him that we are fine but sometimes I am not fine and I am afraid and lonely and feel like I have lost my world. Whew......just typing that made me feel good!!!!!!! You are right about friends. I need to take them up on their offers to help me. That will help with the weight of everything and like you said, it could bring us closer. I do have amazing friends and I need to stop being so stubborn and let them in even when I am trying to hold the door shut! I have a very good friend who just had a baby and her two pups are my favorite in the world. She has asked me to come over and stay with them once I am back in Phoenix. I can play with the baby, have some great one on one friend time and the pups are able to sleep in bed with me! I am going to take her up on it and just enjoy my time with her and her family. She is a biologist and her mama also suffers from auto immune issues so she is amazing to be around and to hear what she thinks about everything!

Oh my Rob! I remember when we first met and you telling me that! I didn't realize you had Valley Fever! I am telling you, as you already know, this is miserable and I have an issue of shortness of breath just walking to the bathroom! It seriously sucks the life right out of you! I have asthma and when that is acting up it tends to squeeze all of my lungs but this only squeezes the top parts. I was not prepared and was very nervous when I first had difficulties breathing a few weeks ago. The doctor just increased the steroids but I have to say nothing really helps this. Just lots of time and rest at this point. So, I was thinking about the last four weeks. When I got home from Albuquerque the last time.....mid July. I flew in and there was a terrible storm. Every day for about three days the winds would pick up, thunder and lightning were everywhere and the dust was horrible!!!!! The doctor told me that normally symptoms will start showing 6 to 20 days after exposure. That was during all the dust storms! I don't know if it is just a coincidence or has some bearing on the situation. I see the pulmologist on the 20th so I am very excited and hoping he can help me breath a bit easier. Until then just lots of rest. What did you do when you were diagnosed? You said nothing has been the same since. I have to say nothing feels right inside anymore and it seems like each system is struggling because I really can not breath very well.

steve.b: My doctor was so happy too and I just wanted to throw something at the wall and tell her no.......it hurts!!!!!! The knot on my finger is nor jewelry and it does not tickle, IT HURTS! Winters are always so tough on our bodies. The cold can just rip through you and make everything seem worse. You know, winter and summer are both like that for me. To much cold and I am sore and to much heat and I am sore! Mmmmmmmm.........I wonder where we could live and have it be spring and fall all of the time?!?!?!?!?! I understand the tummy issues. Once you are in a flare everything decides to go crazy and can get yucky very quickly! I have been suffering with severe night sweats right now. They are so bad that I told my doctor at 33 I am going through the change of life. It gets so bad that I will have to change my clothes in the middle of the night OR I just take them off without even knowing it! I have more anxiety when it comes to staying over at Tim's mom and dad's house because I swear they will open the door one morning to wake me up and they will see me......ALL OF ME!!!!! I hate it! You are right about the meds. Good meds will make everything look right. I sometimes think they need to review our files from beginning to end a few times during the year so that they can remember where we all started and how painful it was just getting to this point. Good meds are good meds but our bodies feel things that they can not even begin to imagine! I told Tim that I will only go down to .5cc of the methotrexate because of how bad it was the last time when I went to .3cc. I do not want to go to that painful place again and I am making the choice so I at least feel as if I have a say in what goes in to my body to fight this disease.

You guys really are the best and made me feel so much better. I am going to continue to rest until this lung goop clears out and hopefully the lung doctor will be able to really help me. I am sure there will be more tests and pictures needed so I have to put on my patient cap! I will keep you all posted over the next few weeks so that you know what the doctor days!!!!!

SleepyInSeattle
08-10-2012, 03:15 PM
Hey I just noticed Bactrim in your list of medications - many reputable sources (The Lupus Foundation, Johns Hopkins) say that bactrim (or other sulfa drugs) should be avoided because they aggravate Lupus and Sjogrens and other AI diseases....you might want to double-check about that, or try an alternative.

Here are some links with more info:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutfaq.aspx?articleid=379&zoneid=19
"Are there any medications people with lupus should avoid?

There are no absolute contraindications to needed and appropriate medications for a person with systemic lupus. Your doctor should watch for allergic reactions to medications, and watch for any connection between flares and estrogen or oral contraceptives.

People with lupus should be especially careful if they are prescribed sulfa antibiotics. These medications (Bactrim, Gantrisin, Septra) are often prescribed for urinary tract infections and may cause an increase in sun sensitivity and occasionally lower blood counts resulting in disease flares. There are also sulfa diuretics (water pills) such as Dyazide and diabetic drugs containing sulfa such as Aldactone. "

http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/
"Things to Avoid
(1)....
(2) Bactrim and Septra (sulfamethoxazole and trimethoprim)

Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. They are grouped as “sulfa” antibiotics because they contain a substance called sulfonamide. Bactrim and Septra are often prescribed for bacterial infections, especially urinary tract infections. They are also sometimes given prophylactically (i.e., to prevent infection), especially in people taking immunosuppressive medications. However, it is very important that you avoid Bactrim and Septra, because these antibiotics are known to cause an increase in sun sensitivity and lower blood counts in people with lupus, resulting in lupus flares. Several medications can be used instead of Bactim or Septra for the prevention and treatment of infection; perhaps the most frequently used substitute is Dapsone (diaminodiphenyl sulfone) to prevent Pneumocystis pneumonia."

Might be something to at least ask about....

Danica01
08-10-2012, 03:53 PM
Thank you so much for the information!!!! I actually no longer take it and I wonder if some of the recent issues were from the Bactrim!!!!! No more for me!!!!!

n.mac
08-12-2012, 10:45 AM
I myself am allergic to sulfa-I read some where that 20% of lupies are.
Funny none of my drs ever commented - just noted it in my chart and never pointed out its possible connection to lupus.

It is trully amazing the stuff I learn here-stuff the drs don't find important enough to point out!

magistramarla
08-13-2012, 03:38 PM
Hi Danica,
Sending you lots of gentle hugs. I think that it's a great idea for you to spend time with your friend and her family. Babies and puppies are the very best thing for improving one's spirit!
I've also found that being in any place that is either too cold or too hot (especially if it is also dry) makes me feel miserable. The place where we are living right now has a high of 65 year 'round and the moisture from the ocean is perfect for me. We'll be moving back to South Texas next spring, and I am dreading it. The brutal heat of the summer there is going to make me a hermit in my air-conditioned house.
When Tim finishes with his training, would it be possible for you to re-locate? I know that Rob seems to feel better up in Maine and I feel better in Ca.
Jeff and I will be plotting our escape from Texas as soon as he pays back some time to the office down there and we get our house sold.
Take care!
Hugs,
Marla