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Sunset14
New Member


Date Joined Jun 2014
Total Posts : 13
   Posted 6/24/2014 8:54 PM (GMT -6)   
Hi Everybody,

I don't even know where to begin... I'm a little overwhelmed but trying also to keep a positive attitude thru it. On Feb 20th 2014, I was diagnosed with SLE... When I first received the news I was actually relieved, I mean after all .. I finally had a diagnoses. However, this was after years of being told, it was all in my head (which I'm sure we have all heard at some time or another) or that I probably had a few autoimmune diseases, but they couldn't figure out what. At once point I was told I was a very special case and they weren't sure if they would be able to help.

It took sitting down with my boyfriend who has severe RA and bechets disease and making a list and doing research to find out what I may have. I found a new primary care doctor who referred me to the many specialist I needed to see. He was seeing a wonderful rheumatologist and she was the Specialist I decided to see when I had positive ANA in my blood test result.

She took one look at my face and hair and diagnosed me then, without seeing the blood-work results and so on.. I have a very distinct butterfly rash (although not unattractive,its constantly there) as well as Lupus hair.. you know the look.. thinning ... balding..

I was also diagnosed with arthritis, though at this point not RA (however it runs in my family, so we are keeping a lookout for any signs). While going thru some test, she became worried at the lack or rotation that my hips could preform and decided to get lung, hip and spine x-rays. (Lung - because in the last three years I have had pneumonia twice). When the x-rays came back - low and behold there was nothing wrong with my hips, except a little wear and tear, we found out that I have broken vertebrae in my lower spine. Yes, a broken back..

Went to a pain management doctor last week, and I am told surgery will not help me because it has already healed itself (we don't know when or how I broke it.) and since the cushion between the two vertebrae has been gone, two of the bones have begun moving against each other causing more damage to my back.

2 and a half years ago, I started gaining an excessive amount of weight and knew something was wrong, sure enough my doctor at the time, diagnosed me with hyperthyroid and prescribed me medicine, however he diagnosed me improperly and I only found that out once I changed primary doctors.

In less than 5 months, I went from working as much as possible to being told, I can no longer do the job I have done for over 10 years.

In less than 2 years, I have been diagnosed with hypertension, hypothyroid, diabetes, arthritis, SLE, DDD lumbar, and of course with all this going on, you can probably guess, I'm a little depressed (though don't often show it) and I'm also experiencing neurological issues with my lupus, so in 2 months I go see someone for that.

I'm scared, because I have shown many of the symptoms of lupus for many years, however I was only just now diagnosed with it. I'm scared because we are just not really learned the extent of damage it has caused, and I am only 32 years old. I feel I'm too young for all of this to be happening. I at time become overwhelmed and sometimes just need people who are going thru or have gone thru the same things I currently am going thru to help me go thru it.

I am lucky tho.. I do have a wonderful boyfriend who accepts me for me. We are working on the weight issue that has developed because of the wrong diagnoses, and he helps me shop for wigs and hats for the lose and losing of hair. He helps remind me when I need to take the 13 - 18 different meds I need to take. I'm not going thru it alone, but even he doesn't understand a lot of what I am dealing with. I am hoping you guys do.

I hope I get to know all of you over time ... Thanks for letting me introduce myself

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/24/2014 9:27 PM (GMT -6)   
Hi and welcome to the forum. You bet we get it here, all of us have been through some or all of the stuff you've been through. We have members who are mild with cases and are medication free and then there are some of us who are really sick with the stupid disease. I happen to be one of the really sick ones and really can relate to you.

It's hard not to get depressed when you feel bad all the time. I've had lupus for 26 years now, I started showing signs of the stupid disease at age 17. When I was 23 a military doctor mentioned that I might have lupus, I had a positive ANA at that time and was feeling really unwell. Of course, being in the military we either moved every 4 years or my doctors would moved every 4 years.

So, it took the military doctors 13 years before they said yep you have lupus and began to treat my symptoms. I had periods of time when I was doing really well and things were good. I decided to have a baby in 1993 and after having my daughter things kinda slid downhill from there. By 2001, I was starting to be sick all the time again. I started on prednisone in June 2001 and haven't missed a day of the stuff since then. I've been on high dose steroids for over 14 years now. I understand about all the medications that must be taken daily, I take 22 oral medications daily, that doesn't include my short acting pain medication, or my antinausea medications, I also give myself a shot every day in the stomach. I take a shot of chemotherapy medication in my thigh weekly too.

It great that your boyfriend reminds you when you need to take your medications. Do you put them in a pill dispenser? I have a 1 week dispenser that cover 4 times daily and it works great for me. Anything, I may take away from my pill box. I carry those medications in my bag or set them on my counter. If I'm having issues with remembering things we keep a chart on the frig with the times I take my medications.

I know it's overwhelming when they start laying on all the different issues that we have. If you check my signature you'll see I've got a bunch of stuff too. My latest one is the T-cell LGL leukemia is is a leukemia that's common in folks with RA and auto immune diseases. Of course, there isn't a cure for this type of leukemia, they can treat me when my cancer active. Most patients live 5-8 years some to 10. Most patients die of infections and not the cancer itself. I truly understand your being scared about things. It's hard to cope with so much.

Lupus is so different from person to person though. It's known as the disease of 1,000 faces. Some lupus patients have mild cases and do not even require medications. Then there are folks that are really sick like me and are on a lot of medications.

Because I've been on prednisone so long I've broke my ribs over the past 1 1/2 years, I've had a total of 15 fractures, (some ribs I've fractured more than once) they fracture with me just bending over. It's hard to say why you broke your back (((hugs)))

How long ago did your start your medications to treat your lupus and what ones did your Dr put you on? Some of the medications can take awhile before you realize they are working. Like Plaquenil can take up to 6 months before you really start to see results as far as joint pain and fatigue go. Please feel free to ask any questions about this disease. Someone here will have an answer for you. We're not doctors but we've all been through something similar at some point in our disease.

This is a great place to come and vent if you need to. We all understand and support each other. Try not to worry to much things will hopefully improve for you really soon. Welcome and know that we all understand what you're going through.

Take care and I hope you start to feel better really soon.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Sunset14
New Member


Date Joined Jun 2014
Total Posts : 13
   Posted 6/24/2014 9:44 PM (GMT -6)   
Thanks Barbara..

My Rheumy originally started me on Plaquenil, as soon as I was diagnosed on the 20th of Feb. However, due to some of my other health issues, and the fact that I was getting sick from it. We decided to move on to methotrexate, which of course doesn't help with the already loss of hair.

I started it two weeks ago. Week one was no fun, I was feeling sick but in a complete different way then the Plaquenil was making me. This week seemed to be a little bit better, but because I already have digestive issues and gallstones as well) she said if I can't continue to take it orally, we may move on to shots, she is also thinking about prescribing acthar to go with it, if my symptoms do not improve when I go to see her again.

Because of how intense my flares she wanted to know if I wanted to start on prednisone, however, due to the fact of the weight issue currently, I'm trying to stay as far away from it as I can until I can get my weight to where it was two years ago.

Thanks again for the welcome :)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/25/2014 6:38 AM (GMT -6)   
Welcome, Sunset.
As I was reading your intro it sounded so much like me.
I injured my lower back in a car wreck, but refused medical treatment at the time. I thought I was just bruised up.
My back has hurt me since I was 23. The doctor says the L5-S1 disk is gone and my bones have fused together.

Lupus is a scary thing at first, but if you take things one day at a time it's not so bad.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/25/2014 7:13 AM (GMT -6)   
Hi Sunset and welcome :)

I was diagnosed in March as UCTD/lupus and am on the bad news train as well. Nerve damage, no disk left in my lower back, being told I can't do my job of 20 years anymore, hair loss, rashes, breathing problems and on and on and on. It's gotten so that I don't want to call the doctor even though I'm not doing well because I don't want to find out any more that's wrong with me. I imagine this too shall pass and it's like playing catch up with the damage that has been done that wasn't attributed to the disease at the time.

Anyway, I'm beat so I can't write any more at the moment but I wanted you to know that indeed we understand all that you are going through. You will find wonderfully supportive people here and I am glad you found us :)

Hugs,
Joie
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/25/2014 2:49 PM (GMT -6)   
Hey Sunset,

Give it time with the Methotrexate, the side affects should lessen with time. If not the shot form isn't to bad. I do them weekly and my daughter whose 21 can give them to me too if need be w/o a problem. I've been on the MTX for over 2 years now, I've taken every single drug out there for lupus, except for gold injections and none have worked well for me. I've even tried medications that are for RA and still not much improvement. The MTX is kinda doing it, however, the type of leukemia I have is also treated with MTX but at much higher doses, so I'm taking stuff at really quite high dose weekly.

I know that you're worried about the weight gain with taking prednisone, but if you were too make sure you watch what you eat and take in less than you burn, I think you would be alright to take it. Sometimes, you just need a dose of the predniisone to get you out of a flare up. Not all patients stay on a low, medium, or high dose of steroids for long periods of time.

Just give it a thought okay, I know for me, the best medication to work is prednisone. Did I gain weight, yes I did, but I've managed to drop 60lbs of what I gained in the past 2years and have kept it off. I still need to lose maybe 40 more, but I can't seem to get anywhere with that. The bit reason my doctors want me off this stuff is the other sides effects and what they are doing to me. Prednisone is a double edge sword, it saves but kills us.

I hope that your side effects lessen with the MTX and please do consider the prednisone, a dose pack maybe. Take care and I hope you feel better really soon.

Hug,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Sunset14
New Member


Date Joined Jun 2014
Total Posts : 13
   Posted 6/25/2014 10:27 PM (GMT -6)   
I'm definitely going to give it some time (the mtx). The side effects were not as intense as they were last week. Still nauseous a little, but not nearly as bad as last week.

I think in all honesty, its not even finding out whats wrong with me that overwhelms me, but the constant trips to what feels like millions and millions of doctors.

The other issue I'm having is sleep issues. I've always been an insomniac, but I felt that I was getting better. I weened myself off of Ambien and, with the help of my boyfriend, tried breathing exercises and that seemed to work for awhile, but now I'm having issues, not just falling asleep, but staying asleep. I'm guessing it has to do with the combination of medicines I'm on and have been thinking of asking about Ambien again. Good idea or bad?
DX- SLE, Arthritis, DDD Lumbar, Hypertension, Hypothyroidism, Diabetes, and MDD
Medicines - Methotrexate, Folic Acid, Hydrocodeine, Etodolac, Ibuprofen, Acetaminophen, tizanidine, Norvasc, Levothyroxine, Metformin, Glipizide, and Viibryd

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/25/2014 10:54 PM (GMT -6)   
At lot of lupus patients need something to help them sleep. Especially if they are on high dose steroids. So, asking for Ambien again wouldn't hurt you. There are other drugs out there if you don't want to take that one again.

Are you taking Folic Acid with your MTX? If not you should ask your Dr to give you some. It will help with your side affects. They also can give you an anti nausea medication for when you take it. I take Zofran from my nausea, but like I said I take my MTX at a pretty high dose now. My hair is falling out in clumps like it did when I was on cytoxan. I seem to have more and more issues with nausea and sores in my mouth. I'm very restricted to what I can eat now.

If your Dr is unwilling to give you an anti nausea medication, ginger is very good for calming the tummy. If I'm sick to my tummy and can't take anymore Zofran I'll sip on ginger ale and nibble on town house crackers. I did that too on the two times I had a bout with morning sickness. I was lucky during my pregnancy didn't have morning sickness, and never vomited while I was pregnant, until I went into labor. That is a different story however.

Yes, have a chronic illness can make you feel as if you're at the Dr's office all the time. I know last year SSDI request a list of me of all medical appointments I had from June 2012 thru August 2013. Lucky I keep detailed records, I pulled out all my old calendars and got copies from the military hospital. I put it all on a spread sheet and in the end I ended up with my average being I spend close to 22 days going to the medical center to see the Dr, go to therapy of some sort, do pulmonary rehab, PT, or see my therapist. I also was admitted 23 times for a total of 72 days.

When people ask me what I do for a living I laugh and say I spend my time at the Dr's. I try not to let it get to me. I didn't ask to be sick and neither did you. You're still a newbie in this and you don't know exactly how your disease is going to be all the time. Hopefully, once the get your flare under control you'll have a long period of you disease being quiet. Those are the times when you need to enjoy that you're not running to or calling your Doctor. Try to just focus on getting better right now and deal with each day as it comes.

You'll have plenty of folks here who understand and will support you. Trust me, even IF you ended up like me spending all that time at the Dr's office, you'll learn to laugh about it and move on. Every patient escort, medical technician, nurse and Dr knows me at the military hospital I go to. My family jokes that they can't push me in my wheel chair more than 20 feet w/o someone say, "Hi Mrs.........., how are you today."

Hang in the and I hope your MTX next week has even less side affects.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Sunset14
New Member


Date Joined Jun 2014
Total Posts : 13
   Posted 6/28/2014 12:37 AM (GMT -6)   
Yes, I was prescribed folic acid with my mtx. Nothing was prescribed to help with the nausea though. I'm not sure why, but I'll talk to my doc about it. I don't think she'd be unwilling to prescribe it. She's a really good rheumy and really listens to everything I have to say.

Yeah, the doctors all the time can be a real downer. Especially trying to remember if I have an appt. on the day someone else is trying to make an appt. with me. Made that mistake already lol. Gonna have to get a scheduler or something to help with that. Doesn't help that the memory problems mess with me there too.

I think I'll talk to one of the doctors about the sleeping aid, I'm also having major issues with light and sound recently. I already have pretty intense headaches, whether its migraines, tension or both. So the issues with the light and sound is really affecting me. Right now I typically put a pillow over my head to block out the extra light seeping in. However, the bf allows me to set the house up like a cave, so not too much extra light seeps in. We are talking about getting eye coverings for me, just don't know if I'll be able to sleep in something over my eyes like that. Any advice?

I'm very lucky in the fact that a lot of the specialist I see and my primary care doctor are all in the same building, so I'm sure I'll be getting the .. didn't I just see you last week comments and so on as well. LOL.. but if it means I'll start feeling better soon, I'll do whatever it takes.

I just had an MRI for my back on Thursday and will find out the results for that on the 16th of july. The xray showed the broken vertebra. I guess the MRI will show the extent of the damage. I go see the doctor for my thyroid on the first and I'm sure he'll be upping my dose on my meds. He called and left a voice mail stating there was still an issue with it. So we shall see.

Remaining as positive as I can, some days are harder than others...
DX- SLE, Arthritis, DDD Lumbar, Hypertension, Hypothyroidism, Diabetes, and MDD
Medicines - Methotrexate, Folic Acid, Hydrocodeine, Etodolac, Ibuprofen, Acetaminophen, tizanidine, Norvasc, Levothyroxine, Metformin, Glipizide, and Viibryd
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