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Jodi1983
09-07-2011, 12:24 PM
Just wanted to introduce myself. I am 27 year Female diagonosed with Lupus August of 2008. I also have Gastroparesis that they claim was Lupus induced diagnosed August of 2010! Everthing has been pretty calm just fatigue and joint pain, until the last three months! The last three months everything has just been going crazy and so it continues! Started with inflammation in my chest wall, fever, severe fatigue, and drastic joint pain. Dr said i was having a flare put me on 30 mg prednison daily, was on that for 6 weeks, and the last two weeks were great then he went to winging me off and once i was down to 15 mg per day severe fatigue, extreme muscle weaknessin arms and legs, hands and arms shaking/tremmors, left eye lid jumping, fever, and joint pain started happening. Also Glucose high, Glucose in Urine, High heart rate 130 - 154, Dr though it might be Hyperthyroidism, but the test for that came back almost normal, slightly high but nothing of concern. So now the Dr doesn't want to increase my Prednisone due to the high Glucose so he has dropped me down to 10 mg, and the remainder of the symptoms are just getting worse! Waiting a call now to see where we go from here!!!! A little discouraged at this point, 3 months of fighting this has wore me down!! So i figured i would join a Forum for support. Sorry to ramble on my first post of intruduction just alittle disgusted and do not know where to turn at this point. Just for an FYI i am also on methotrexate 15 mg weekly, Domperidome 10 mg before every meal, Tramadol 50 mg 3 times a day, and Diclofenac as needed- This messes with my stomach so i can't take it much!

Elo
09-07-2011, 03:57 PM
Hi Jodi!
I used to live in NOLA, myself, and find myself missing it (:
Though I'm sure that the weather would be horrible for me now that i'm sick (not counting the winter, of course).
Welcome to the forum! Most of us come here when we're frustrated, or looking for people we can talk to who know what we're going through, so you've definitely come to the right place! (:

I can't say much for your medications though, as i'm not yet diagnosed, nor taking any medications.

I hope you enjoy and feel comfortable here ^^ Feel free to open up new threads and rant or ask questions any time you need to - it's a really great group here.

steve.b
09-07-2011, 08:34 PM
hi jodi,

sorry i have no advice for you at present.
my mind is out of kilt.

but i did want to say hi

hi

debbie-b
09-08-2011, 05:18 AM
Hi Jodi,

Welcome to WHL. I am glad that you have found us.
You will like it here, everyone is very nice. We are all in the same boat, so we do understand what you are going through.
How long have you been on Methotrexade? The MTX has helped me, after about 3 months.
My biggest complaints are joint pain, muscle pain and weakness, fatigue and brain fog.
If you have any questions, just ask.

Debbie

tgal
09-08-2011, 06:22 AM
First I want to welcome you to WHL. We are so glad that you found us! I completely understand what you are going through because I am in the process of being weaned off of steroids (60 mg a day) and when I hit 20 I want to shoot someone. I figure if I have to hurt that badly then someone can join me LOL (I really am joking...maybe )

I have all of these wonderful things I would usually say but I am really distracted today so I will just stick with welcoming you to the WHL family! I look forward to getting to know you

Jodi1983
09-08-2011, 10:12 AM
Thanks everyone for welcoming me to WHL! Rheumatologist just called and i have to go in to see my Primary Care to rule out infection (I was just at primary care Friday)before he will do anything further! GRRRRRRR, So tomorrow morning off to the PC and hopefully some answers!!!

TGal,
I know exactly where you are coming from with the pain, in a weird kind of way it can be comforting to know that you are not the only one living in severe pain daily! LOL

Debbie,
I have been on Methotrexate for a little over 2 years now! It was working good, but these last 3 months nothing seems to be working. Prednisone helped, but caused all kinds of other issues, so i don't know what will be next!!! I was also on Plaquenil for the first two years and it didn't help much so they added the Methotrexate then took me off the plaquenil after about a year on the combo!

tgal
09-08-2011, 02:44 PM
It is VERY nice to be around people that understand what you are going through! It is not that we want anyone to be as ill as we are but if they have to be anyway.... how about we become friends LOL

prothumos
09-13-2011, 07:38 PM
Hey Jodi,
Your heading caught my eye - I'm new to the board but am from Pass Christian, Mississippi. I visit NOLA frequently to see my rheumy at Ochsner. And that's where I wound up last Tuesday night (via ambulance) after having my first ever grand mal seizure in the Target in Slidell.
I'm with you - I'm disgusted and frustrated and......I'm tired of having "new things" happen to me and then my rheumy throws in another diagnosis/illness. I get that all this stuff is related and overlaps, but geez, how many different diseases can one have at once, lol?
Hang in there!

Robin

Saysusie
09-13-2011, 08:06 PM
Hi Jodi;
First, I would also like to welcome you to our family. I am so glad that you found us :-) However, I am sorry to hear that you are in a flare and that nothing seems to be working right now. Unfortunately, what you are experiencing with your tapering of Prednisone is a familiar story. Often, when tapering, patients find that their symptoms return, worsen, or new ones appear. It is at this point when you and your doctor should discuss a maintenance dose of Prednisone. This could be the lowest dose that prevents symptoms. Many Lupus patients have remained on a low dose of Prednisone (aided by a low dose of Methotrexate) for sustained periods of time in order to manage their symptoms. This low dosage is often given throughout the flare-up period and then can be lowered again (tapered) when the flare has subsided.
Perhaps you can discuss this possibility with your doctor in order for you to get past this current flare. I do hope that you are able to find some relief soon. Please know that we are here for you :-)

Peace and Blessings
Namaste
Saysusie

tgal
09-14-2011, 07:15 AM
Hey Jodi,
Your heading caught my eye - I'm new to the board but am from Pass Christian, Mississippi. I visit NOLA frequently to see my rheumy at Ochsner. And that's where I wound up last Tuesday night (via ambulance) after having my first ever grand mal seizure in the Target in Slidell.
I'm with you - I'm disgusted and frustrated and......I'm tired of having "new things" happen to me and then my rheumy throws in another diagnosis/illness. I get that all this stuff is related and overlaps, but geez, how many different diseases can one have at once, lol?
Hang in there!

Robin

Hi Jodi! Sorry to be a bit late but I wanted to welcome you to WHL! I too have seizures with my Lupus. I know how scary this whole thing is but at least you are not alone anymore.

When I my neuro figured out that I was having seizures (I was having night time and absence long before my Tonic Clonic or Grand Mal) I couldn't even get my original Rhuemy to admit that my seizures had anything to do with my Lupus. He called it a secondary disease!

I look forward to getting to know you and here is wishing you a pain free day!

Jodi1983
09-14-2011, 07:11 PM
Thanks everyone for the welcoming! Just for an update the craziness continues! LOL went to my primary care on Friday and my heart rate and blood pressure was high, she referred me to a cardiologist that day, EKG came out o.k., but blood pressure and heart rate are fluctuating drastically and they are not sure why! I have never had issues with blood pressure, but i guess i do now! So on to more test with the cardiologist, while mean while my Rhuemy is scared to do anything to treat the flare(i am still on 10 mg prednisone and 15 mg methotrexate) until they figure out why my heart rate and blood pressure are fluctuating so much, so the days are just miserable! Blood work should be back tomorrow and hopefully it will give us a clue of what is going on! One day blood work comes back fine, then the very next day everything is sky high, then the next its all back to normal, same with blood pressure and hearth rate, except these two things go up and down by the hour! My Rhuemy is convinced there is something other than the Lupus going on in my body, so until he knows what he doesn't want to take the chance of raising any of my meds and it causing other issues!

Robin, so sorry to hear that you are going through a rough time as well. All the new symptoms and miserable days do get old very fast! I try to be a positive person and to most they would say i deal great with it all, but inside it breaks you down after a while! Look forward to getting to know you!

tgal
09-14-2011, 08:44 PM
Thanks everyone for the welcoming! Just for an update the craziness continues! LOL went to my primary care on Friday and my heart rate and blood pressure was high, she referred me to a cardiologist that day, EKG came out o.k., but blood pressure and heart rate are fluctuating drastically and they are not sure why! I have never had issues with blood pressure, but i guess i do now! So on to more test with the cardiologist, while mean while my Rhuemy is scared to do anything to treat the flare(i am still on 10 mg prednisone and 15 mg methotrexate) until they figure out why my heart rate and blood pressure are fluctuating so much, so the days are just miserable! Blood work should be back tomorrow and hopefully it will give us a clue of what is going on! One day blood work comes back fine, then the very next day everything is sky high, then the next its all back to normal, same with blood pressure and hearth rate, except these two things go up and down by the hour! My Rhuemy is convinced there is something other than the Lupus going on in my body, so until he knows what he doesn't want to take the chance of raising any of my meds and it causing other issues!

Robin, so sorry to hear that you are going through a rough time as well. All the new symptoms and miserable days do get old very fast! I try to be a positive person and to most they would say i deal great with it all, but inside it breaks you down after a while! Look forward to getting to know you!

Please keep us posted on what the test results are. This is a crazy disease and you never know what those tests will say! Just make sure that you take care of yourself while the docs try and figure it out!

amethystchic
09-15-2011, 04:32 PM
Hi..welcome to WHL!! So sorry to hear that you are going thru so much with your lupus!! The people here are so amazing to chat with and get advice! Well, I just wanted to say hi..btw I live in New Orleans too...Algiers!! Take care..I hope you feel better soon!!

Jodi1983
09-16-2011, 07:41 PM
Just for an update, Dr's can't find anything going on in my blood work other than my Lupus flaring! So today my Rhuemy raised my prednisone to 20 mg daily and increased my methotrexate to 20 mg weekly! Hopefully this will start the course of getting me out of this flare! fingers are crossed!!! I still have some further testing with the Cardiologist this Friday, but praying everything turns out fine! Has had a very rough day, but staying positive that this will only be short lived for the time being! Thanks everyone for the support and advice! It is so nice to have a place that i can talk about how i am feeling and what am i going through and feel like i am understood! Don't get me wrong i have a very supportive Husband and family, but with them not living with the disease it is hard for them to totally understand what you feel on a daily basis!

Amethystichic,
Thanks for the welcoming! I actually live in Marrero! Look forward to getting to know everyone on the site. The support and comfort so far have been great!

Nonna
09-17-2011, 12:11 AM
Just wanted to say Hi and welcome, and give you some encouragement. I'm just finishing a fustrating flare, that turned out to be the result of my allergies. With this disease anything can happen. You just got to stick it out and this is the best place to do it.
Hugs and Good Thoughts
Nonna

prothumos
09-24-2011, 11:20 AM
Hey Jodie,
Just a quick nte cause my spelling/thoughts are horrible today. I too have heart problems, well, maybe not heart "prlbems" but my rate flucturates like craxy. I'd ben feeling horribly weak and didn't know why and one day my mom (who have afib) stuck her heart monitor on me - my heart rate was 145. Took a halter monitor to fitue it out. They put me on toprol, then increased the dosage a couple months later and it's worked like a charm - no more heart rate gallopoing from one end (wlos) t the other (fast). My rheumy said not uncommon at all to see problems like that. But it sure has made my life a lot better to have a normal, constant heart rhythem. Hope you're having a great weekend and i look forward to talking to you more.
Roboin

debstar
09-24-2011, 03:12 PM
Hi Jodi,

Just wanted to say Hi and hope you will feel better real quick smart!

You have come to a wonderful spot for support emotionally and mentally and it will help to have so many people here that can realte to what you are going thru.

Looking forward to getting to know you more.

Take care.

Debs

Jodi1983
10-03-2011, 07:03 PM
Sorry to be a little late posting back, It has just been a rough spell! Still fighting this flare! Had an appointment today to get heart test results from Echo, and had a few minor issues, but nothing major. Holter monitor showed heart rate ranging from 62 to 147. Cardiologist thinks that the fever that i have had for almost 3 months could be the reason of my heart rate fluctuating, so he is going to repeat the test in a couple of months when my Rhuemy has this flare under control. Rhuemy stated at last appointment that if nothing has changed by my next appointment which is this Thursday, that we would try some new meds. So i guess for now i am just waiting to see what new meds he wants to try. I will defiantly post after Thursday when my meds are changed to get some feed back on what ever he wants to start me on. Currently i am still on 20 mg Predisone and 20 mg Methotrexate. Thanks again everyone for the welcoming and warm thoughts!

howsabout
10-07-2011, 05:32 PM
I'm super new and haven't posted an introduction yet but I also live in New Orleans, on the lakefront.

Lol small world. I did want to say that I think I may have found the best rheumy this side of planet Earth though in case you ever want a name. Also, a neurologist who happens to practice on the Westbank in case you ever need one of those.

Jodi1983
10-15-2011, 07:29 PM
Hi Howsabout! I am very happy with my Rheumy, he really listens and is doing his best, this flare is just being very hard to deal with! LOL He started me on Humari this week so hopefully that will start to give me some relief! But I am curious as to a name! :o)

SO for an update still in this flare! Still running fever - 3 months of constant fever non stop is getting old very fast! Still fell horrible! Sick and tired of being sick and tired! LOL As i stated just before my Rheumy started me on Humari a couple of days ago, so i am now taking 20 mg MTX per week, 20 mg Predisone per day, 100 mg Tramadol 3 X a day, 10 mg Domperidome before every meal, and 40 mg Humari once every two weeks! It has only been two days since i started the Humira, but no change yet! My Rheumy stated it may take a little time to know if it's gonna help! So once again i am being positive and hoping this is the relief i have been looking for!

Anyone have any experience with Humira??? How long does it take to start working? Side effects? Etc....