Possible Lupus diagnosis

[phorsenuf]

I just got home from seeing my new neurologist and he is sending me off to see a rheumatologist. He thinks I may have Lupus. He also thinks that that is what's causing my heart and lung problems and probably responsible for my stroke way back when. My dad and sister were just diagnosed with it in the last 6 months. I have another sister with it as well but it has never given her issue.
I was reading through some Lupus websites and going through the symptoms and saying yes, yes, yes, yes. I did have an elevated ANA panel many years ago but the repeat one was normal and I don't even remember another one after that.

So does anyone here deal with Lupus. Can you share what you go through. I see the Dr on Monday. I was also thinking of calling my pcp to see if she could order a blood work up before Monday so I could have everything in hand.

 

[sparks19]

My step dad was diagnosed with Lupus last year. His seems to be rapidly progressing and they aren't exactly sure why so it's been an adventure finding the right medications for him.

He's still not on quite the right ones yet. The first ones didn't really do much of anything for him and then they put him on another type (I can't remember the names) and it helped with some things and not the others. They told him he needed to take steroid meds but he had to get his blood pressure down first.

finally got that down and they gave him the steroids which made him blow up like a balloon. he swelled up so badly, he was retaining so much water.

Now they are doing these treatments that are kind of like chemo treatments. He goes and sits there for a few hours and they give him an iv and pump these meds into him. They say that these treatments are going to change his life so here's to hoping.

When they were still trying to figure out what was wrong with him they kept saying it was pneumonia, then they had to do a surgery to clear fluid out of his lungs and they just kept saying "well now it's this so take these meds, oh now it's this so lets do surgery, now this so take this, lets do that" but they weren't getting any closer to an answer. My mom went online and looked up his symptoms and she was lead to a lupus website and she did the checklist and he had all but one of the symptoms.

She urged the doctors to test him but they just wouldnt'. kept saying "no can't be that... it's this" she was insistent. After his second surgery my mom went to his surgeon and told her about it and handed her the checklist of his symptoms. She had him tested right away and sure enough... LUPUS.

So we are all still new at dealing with this too. still trying to figure out what works and what doesn't.

he has good days and bad days and this latest treatment is supposed to all but eliminate the bad days (so they say) so fingers crossed.

Um sorry this ended up so long LOL I guess I had a lot to say. So I don't have much to offer in the way of advice because we are still figuring it all out ourselves but I'm more than happy to learn along with you

 

[leight]

I have been living with a Lupus diagnosis for nearly 10 years. I rarely have elevated ANA panels- it is not the only test to qualify lupus.

When I was in the Northeast, my lungs were the biggest issue or symptom I displayed. I was frequently getting pneumonia-4-5 times a year and was diagnosed with asthma because of it. I treated symptoms and wasn't on any true meds for lupus- I didn't want steroids.

Due to the constant lung issues, we moved to the south. I have had pneumonia only once in the 6 yrs we're here, but get pleurisy once or twice a year. My main issue related to the disease now is nephritis. My kidneys are now affected and I have anemia because of it. I get shots twice a month to help with that and am on prednisone daily.

Each case of lupus is so different that it is hard to say how you will be effected but since our bodies are basically attacking our own organs it can be scary and even debilitating. I sometimes wonder if the medicine causes more damage than the disease or if its becoming a vicious cycle. But it is chronic condition that I live with every day- and count myself lucky that I can treat the symptoms. Its very important to be comfortable and confident in the plan of treatment with your rheumatologist. If the 1st one doesn't instill confidence find another.

Feel free to pm me with any questions.

 

[ClarabelleCowFan]

Just wanted to send a hug!

One of my close friends and my sister have lupus. They both have different symptoms. My friend was diagnosed in her early 20's and has been in and out of the hospital and takes a whole cocktail of medications. My sister wasn't diagnosed until she was almost 50.

I hope the doctor can give you some answers and hopefully some medications or therapies that help relieve your symptoms.

 

[SingingMUA]

I was diagnosed with Lupus a little over 3 years ago. I ended up hospitalized with a DVT and Pulmonary Embolism, and the investigation into the cause of the clots led to my diagnosis.

My case is relatively mild. I suffer with joint pain (mostly my knees and wrists) and fatigue the most. Also photosensitivity (I use 100+ spf sunblock), random low grade fevers, insomnia, and the fact that I'm prone to blood clots.

I will take blood thinners (warfarin) for the rest of my life. I also am anemic and have a Vitamin D deficiency, so I take iron and 50,000 IUs of vit d once a week, and 4,000 IUs once a day. I take Celebrex for joint pain, Plaquenil twice a day as an immunosuppresant, Trazodone for insomnia. I don't have any real organ involvement, outside of my blood vessels and the clotting issue (which I believe are considered organs).

The problem with Lupus is that things can change at any time. A relatively mild case can take a sudden turn for the worse, and a very severe case can end up in remission. It's a very unpredictable, but definitely manageable disease.

To illustrate differences in severity of cases, my cousin (who I actually considered a sister) passed away 6.5 years ago from complications from Lupus. She had major organ involvement and had had a kidney transplant. She was 30 years old when she passed away, the same age I was when I was diagnosed.

I was understandably freaked out when I was first diagnosed, but I have learned that each case of Lupus is different, and management of the disease is key. Not taking care of oneself and such can lead to a worsening of disease activity. I find that when I really take care of myself, my quality of life isn't really affected at all. But at the times when I don't do everything I should (most notably, keep a pretty strict sleeping/resting schedule), then I start to have flares.

It is possible to live with Lupus and still really enjoy life. Sometimes, you may have to modify the way you live it, but you'll still be able to fully enjoy it.

Good luck on getting to the bottom of what's going on with you. Please feel free to PM if you have any questions.

 

[Wishing on a star]

OMG! I can only send

I did have a Lupus scare once. We think it might have been a 'triggered' lupus attack. My ankles were so bad I could barely walk!!!

 

[phorsenuf]

Thank you all so much for the replies. I have to say I am quite nervous. All these years I was being watched for MS and that didn't scare me as much as this does.
I've been doing a lot of reading up on the effect of Lupus on the heart and lungs and wow! It's all making such sense now. All these issues I've been having and them being unexplained are making sense now. The nodules in the lungs they found 8 months ago, the heart attack hitting out of the blue, the shortness of breath and the ongoing chest pain, battles with pericarditis and even my thymus issue. All related to Lupus. It's such an eye-opener.

I know reading too much on the internet isn't a good thing but I'm learning so much and like I said, so much is coming together, but it scares the crap out of me. But it is what it is and if it is indeed Lupus at least we'll finally know and come up with some kind of treatment plan. Hopefully the heart and lungs won't get any worse from it!

 

[PrincessKsMom]

Just had our Health Fair at work today and there was a representative from the Lupus Foundation of America here. In case you need the contact info: Lupus Foundation of America, Inc., 2000 L Street, N.W., Suite 710, Washington, D.C. 20036, Phone: 202-349-1155; www.lupus.org.

Hugs and prayers that all turns out well.

 

[phorsenuf]

Saw my PCP and she sent me off for lab work. depending on how that comes out I'll go to the Rhuematologist. Hope to hear something by next week. I hate waiting!

 

[PrincessKsMom]

We'll wait with you.

 

[LuvOrlando]

Hang in there

 

[WDWBarb]

I'm going through the same thing with my DD. We see the Rheumatologist this week. I've lived with sheer terror in my heart for more than a year now, getting to a diagnosis.

Lupus is treatable and most patients lead absolutely normal lives.

But I know how you feel.

 

[chell]

HUGS! I know how stressful the testing and waiting process can be. My ANA has been off for nearly 20 years now and I'm supposed to do a full panel every year to keep an eye out for Lupus. My mother has it, as does a close friend. For the most part they both live normal lives.

 

[phorsenuf]

Thanks all! I know that having Lupus isn't a death sentence or anything, it'll be nice to know though if it is the cause for my heart and lung issues. Then at least they will be able to know how to treat me. Plus it will be nice to finally have answers!

WDWBarb- I hope you get the answers you need soon.

 

[Mom&RN]

Saw my PCP and she sent me off for lab work. depending on how that comes out I'll go to the Rhuematologist. Hope to hear something by next week. I hate waiting!

Let me start by saying I don't care how your lab work comes out you should see a rheumatologist!! It certainly won't hurt and a lot of PCPs have only very basic knowledge about lupus and other autoimmune disorders. You really need to see a specialist.

I have been diagnosed with lupus for approx. 15 years now and looking back over my fairly complex medical history I have definately had lupus since my late teens. Being diagnosed with lupus did many things for me, not the least of which was prompting me to go back to school and become an RN. I am currently going to school to become a Nurse Practitioner.

Lupus can be really scary as it is a disease marked by episodes of flare (when the disease is active) and remission (when the disease is silent). I pray for remission and cope with it when I flare. I have not allowed it to prevent me from doing anything I want to do, I sometimes just have to approach things differently than an average person.

Getting a good rheumatologist is the best thing you can do. I have had three different rheums since I was diagnosed and they have all been GREAT. If you take good care of yourself, find a good doc, take your meds and behave (most of the time ) you'll do great.

I'm sending you a big hug because I remember how scared I was when I was first diagnosed, and yet relieved at the same time because what was wrong with me had a name.

If you'd like to pm please do. I have done quite a bit of research on lupus because 1 - I have it and 2 - I am a nurse. Take good care of yourself!!