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littleone13
11-20-2008, 12:18 PM
Hi my name is Eva. I am 23 years old. I have had lupus since I was 17. About two or three years ago I was diagnosed with pulmonary hypertension, not knowing what could have caused it but the lupus. I am basically here because I would like to meet some people that have lupus like me.

KathyW1958
11-20-2008, 12:32 PM
Hi Littleone13,
Welcome to the site. My name is Kathy. I have SLE, Lupus and well have had it for years. I will be 50 in December. There are a lot of good folks that come in here.

I am wondering are they able to control the Pulmonary Hypertension with medication? I sure hope so. I just want to welcome you to the site.

Hugs,
Kathy

sick n tired
11-20-2008, 09:11 PM
Hey littleone13,

Nice to make your acquaintance. How were you diagnosed when you were 17? It is great that you had the dx when you turned up with hypertension, though.

I look forward to getting to know you better...so welcome. :lol:

SandraC1983
11-20-2008, 09:54 PM
nice to meet you girly .....im sandra im 25 married two kids. what about yourself.......... hope you have a good one

god bless

Oluwa
11-20-2008, 10:57 PM
Hi Eva..

Welcoming you with a tight hug...squueeze...

We have a wonderful group, family here to meet. Chat up, read about...ask, jump in, advise, share.. We all learn from one another.

See you on the boards...again, welcome.

Be well...sweet dreams.
Oluwa

littleone13
11-25-2008, 11:54 AM
Hi Littleone13,
Welcome to the site. My name is Kathy. I have SLE, Lupus and well have had it for years. I will be 50 in December. There are a lot of good folks that come in here.

I am wondering are they able to control the Pulmonary Hypertension with medication? I sure hope so. I just want to welcome you to the site.

Hugs,
Kathy

Well it's good to see that people can live awhile with the lupus. My doctors have told me that I could live long if I just take care of myself. It's just so hard sometimes. :( I mean since year 1998 something has been wrong with me. In '98, I had my appendix taken out, 2000-2001, I was diagnosed with lupus. Since i have been diagnosed with lupus, I have had my right great toe amputated, my left kidney removed, right foot amputated, was diagnosed with Pulmonary hypertension and am still waiting on right knee and hip replacement. I'm 23 and in a wheelchair. I have a four year old daughter, which they didn't think she would make it. As for the pulmonary hypertension, I am taking this $4,000 a month medication. We are testing it right now to see if it good for patients with ph. :?

KathyW1958
11-25-2008, 12:05 PM
Hi Eva,
I am sorry to hear what has happened to you with losing your right foot and kidney. I hope that you get over this bad time in your life and that life gets easier for you. I hope that the medication works for you and is good for the treatment of Lupus.

I have good days and bad days. Right now I am getting over a very severe cold and right in the middle of a flare that has my wrists and knees and legs hurting terribly. I just have to wait out and hopefully it will subside or I will be back at the doctors again. I am an old timer lol and yes it is definitely not easy to live with this rotten disease, but I do the best that I can. I am very lucky to even be alive. I nearly died in 1996 when the Lupus attacked the heart muscle big time. I got over that and well I am doing ok.

I hope that you are feeling ok today.

Hugs,
Kathy

littleone13
11-25-2008, 12:07 PM
Hey littleone13,

Nice to make your acquaintance. How were you diagnosed when you were 17? It is great that you had the dx when you turned up with hypertension, though.

I look forward to getting to know you better...so welcome. :lol:

When I started getting sick, I didn't know it was lupus. I was in crutches for a cracked bone on my foot and a sprained ankle. Then, I was going straight home from school and going strsight to sleep. I didn't go and do the normal things I would go and do with my friends. Then, I didn't have the energy to get up and go to even stand up and I couldn't even keep water in my stomach.

littleone13
11-25-2008, 12:10 PM
Hi Eva,
I am sorry to hear what has happened to you with losing your right foot and kidney. I hope that you get over this bad time in your life and that life gets easier for you. I hope that the medication works for you and is good for the treatment of Lupus.

I have good days and bad days. Right now I am getting over a very severe cold and right in the middle of a flare that has my wrists and knees and legs hurting terribly. I just have to wait out and hopefully it will subside or I will be back at the doctors again. I am an old timer lol and yes it is definitely not easy to live with this rotten disease, but I do the best that I can. I am very lucky to even be alive. I nearly died in 1996 when the Lupus attacked the heart muscle big time. I got over that and well I am doing ok.

I hope that you are feeling ok today.

Hugs,
Kathy

I am doing okay today. Thank you. Yeah my bones tend to hurt alot around the cold season. They hurt during the summer as well, but not as much. Have you ever been on remisison since you've had lupus?

KathyW1958
11-25-2008, 12:22 PM
Hi Eva,
I believe that I had several remissions as the disease was mild from the time that I was a child until I hit 35 years old. I mean I had seen doctor after doctor only to be told time after time that I was stressing and worrying needlessly and that I did not have Lupus. It was horrible. Unfortunately at the age of 35 I contracted a severe case of the Chickenpox and that is when my health went straight down hill and led to me getting diagnosed with Lupus and a host of other Auto-immune disorders. I believe the Chickenpox exacerbated everything dealing with the Lupus. After the Lupus started attacking my heart muscle they decided that there was something seriously wrong and I thus got diagnosed and put on several medications. I don't think that I will ever truly achieve a true remission, but you see the disease is cyclic big time between flares and remissions. I asked my doctor about one day getting off of the medications and he told me that in my case that will never happen. That was real depressing to hear, but that is life and I deal with it the best that I can. I think the biggest thing to avoid if at all possible is stress and boy with this illness that is hard to do sometimes. I hope that you can get into a good remission and that it lasts a long time with you.

Hugs,
Kathy

Saysusie
11-25-2008, 04:31 PM
Hi Littleone13;
I am Saysusie, one of the moderators of this forum. You've already met and been welcomed by some of our members and youve seen how kind and informative the people here can be.
I am so sorry that you've had to deal with so much at such a young age. Pulmonary Hypertension is definitely one of the common symptoms of Lupus. It results in inflammation of the lining of the lung. Lupus is a disease that can cause inflammation throughout the body :x Pulmonary Hypertension is much more common in young adults and is approximately twice as common in women as in men.
The main symptom of pulmonary hypertension is usually shortness of breath with everyday activities, such as climbing stairs. Fatigue, dizziness, and fainting spells also can be symptoms. Swelling in the ankles, abdomen or legs; bluish lips and skin, and chest pain may occur as strain on the heart increases. Symptoms can vary in range and in severity and you may not have all of the symptoms.
In more advanced stages of the disease, even small activities will produce some of the symptoms. Additional symptoms include irregular heart beat (palpitations or strong, throbbing sensation), racing pulse, passing out or dizziness, progressive shortness of breath during exercise or activity, and difficulty breathing at rest. Eventually, it may become difficult to carry out any activities if the disease worsens.
The most common medication used to treat Pulmonary Hypertension is Prednsione to reduce the inflammation. Other treatments can include:
* Oxygen — replaces the low oxygen in your blood.
*Anticoagulants or "blood thinners" such as warfarin sodium (Coumadin) — decreases blood clot formation so blood flows more freely through blood vessels. Note: when taking anticoagulant medications, it is important for you to monitor bleeding complications and have regular lab work to monitor the level of medication in your bloodstream.
*Diuretics or "water pills" [such as furosemide (Lasix)] — removes extra fluid from the tissues and bloodstream, which reduces swelling and makes breathing easier.
*Potassium (such as K-dur) — replaces potassium (an essential nutrient) that may be lost with increased urination when taking diuretics.
*Inotropic agents (such as digoxin) — improves the heart’s pumping ability.
*Vasodilators [such as nifedipine (Procardia) or diltiazem (Cardizem)] — lowers pulmonary blood pressure and may improve the pumping ability of the right side of the heart.
*Bosentan (Tracleer) — helps block the action of endothelin, a substance that causes narrowing of lung blood vessels.
*Epoprostenol (Flolan), treprostinil sodium (Remodulin), iloprost (Ventavis) — dilates pulmonary arteries and helps prevent blood clots from forming.
*Sildenafil (Revatio) — relaxes pulmonary smooth muscle cells, which leads to dilation of the pulmonary arteries.
Are any of the above medications the one that you are taking? I can't imagine having to pay $4,000.00/month for one medication.

I, personally, have lived with Lupus since 1985, so your doctor is correct: you can live a very long time, if you take care of yourself. We are here to help you to do just that. I hope that your medications begin to help you to feel better.

Peace and Blessings
Saysusie

HuntsmanMom
12-05-2008, 08:36 AM
My name is Tina. I am 38 years old and have two boys. One is 19, the other almost 17. I have been ill most of my life. Bad kidneys, CFS, Chronic Epstein Barr, Fibro, Lupus and within the last five years started having grand mal seizures. One dr. says, I have Lupus and have had it since I was at least 15 years old. The other dr. says my ana's show negative so I am just nuts. None of the medications that they have me on now help. It is almost like they just want to cover the syptoms, not fix them. I have horrible hallucinations day and night. When I stand up my vision and hearing go out. Within 4-5 minutes my vision is back but my ears will ring for hours. I am swelling now and don't know why. Is there anyone here that has anything simular?[/b]

sits_inthe_corner
12-05-2008, 09:53 AM
Welcome HuntsmanMom

You are not nuts, keep at them.

I've had possitive and negative ana tests, my mother had lupus and my sister is diagnosed with lupus.

I have swelling and rashes. My swelling is from sudden issues with joints through out my body.

Keep going back and ask for help with the swelling and the other problems.

I used to go two to three times a week untill my doctor clued in that the swelling wasn't going to magically go away, and NEITHER was I.

I'm now on plaquenil and arthrotec. Both these drugs have helped me alot.

They need to find a medication that works best for you. Keep at them.

It's your body and your health.

Lupus and other illnesses can affect us all differently. We do not all display the same symptoms. We do share alot of common ones. One person will have the same type of rash, another person will have the same swelling issues, and yet another will have other symptoms that you share.

Your issues with your vision must be addressed ... please keep pushing them.

HuntsmanMom
12-05-2008, 03:07 PM
I tried to reply but it didn't go through. If you get it twice sorry. You said my vision is needing to be looked into. I forgot to mention that when you are just sitting still, doing nothing, it looks like you are looking over the hood of a car when it is 100 degrees outside. You see the heat vapors. So heat vapors, stars and then when standing goes completely black but I am still very much conscience. I tremor severly and then all of the sudden it goes away. My arms, hand, legs and feet stay freezing and tingling like they are waking up.

They have me on MS Contin 100mg, Darvocet 600mg, Phenergan, Zanaflex, Toprol, Dilantin and Ambien.

sits_inthe_corner
12-05-2008, 05:22 PM
Gentle hugs HuntsmanMom

You really need to get pushy with your doctor's. It's unacceptable that they are not being more aggressive with trying to get to the root of your symptoms.

The doctor who wrote off the negative ana test needs to go back to school. Several of us here have had negative ana tests and then possitive and so on.

I'm not diagnosed yet either, but I'm still pushing. I am on medications now that are helping because I pushed.

I'm on a waiting list for another rheumy. You need to write down your symptoms in point form, take them into your doctor and make it known that you want to get to the cause of these symptoms. They are serious and need attention.

Where is your swelling?

HuntsmanMom
12-05-2008, 07:02 PM
I guess I am not good at this forum thing. I write and then it tells me to sign in again. I do and then it erases my message and starts me over again. I am sorry if they are going in duplicates.

My swelling is all extremities and my face. How long have you been ill? How did it start? Mine started basically when I was 15. I was signed out of high school and put on "medical leave". I got CFS, PTSD, Chronic Epstein Barr, Polycystic Kidneys and Ovaries, Fibro, SLE, (SLE diagnosed by the SS dr, no one else). I can't remember the rest, yeah you know about lack of memory probably too! Then my heart started giving me issues and I had gain green for 9 months from my gall bladder and didn't know what was happening. I know this is a drop in the bucket for some. I started having seizures again in August of this year. I drove my kids from Orlando two hours home in a fog and as soon as I put the truck in park, they said I fell out and seized. All I know is I bit my tongue so bad I couldn't hardly talk for two weeks. I look back now and have to laugh. It seems like the more I push my dr's the more distant they become. One ER dr basically laughed at me and said all you have is ............. so you need to suck it up and go home. I know they see more important things, but this is my life that is gone now. I haven't been able to work in six years. I just kept pushing and covering. Sorry for rambling. Just really haven't had anyone to talk to or that understands.

KathyW1958
12-05-2008, 07:27 PM
Hi Huntsmansmom,
Welcome to the forum. I hear where you are coming from. I was forced out of school my senior year due to the lupus and related issues. At the time I did not know that I had Lupus, I just knew that I was totally sick big time. Talk about bad experiences with doctors and ER's been there did that too. It was horrible. I would be treated like a hypochondriac big time and told time and again that I was stressing and worrying needlessly and that there was nothing wrong with me. It was not until I was 36 before I finally got a doctor to really listen to me and diagnose me and then it was nearly to late. I hope that you get the doctors to listen to you and help you. Do you see a Rheumatologist for your medical problems?

Hugs,
Kathy

HuntsmanMom
12-05-2008, 07:32 PM
I am sorry that you have had the same problems. I know it is a difficult thing to go through and be treated so badly. I was going to a Rheumy but he said here's 800mg of Darvacet and nothing more that I can do. I was on Prednesone for a little bit. It helped a little but made my face swell and my husband said I was sent from H$#@. I go to a pain mangement doctor, cardiologist and neurologist now. Still feel nuts like they try to make you feel. I was wondering, do you or anyone in this group have problems with lymph glands?

sits_inthe_corner
12-06-2008, 04:01 AM
I have had problems with lupus symptoms since I was in my late teens.

My main problems started a little over 2 yrs ago. My joints suddenly flared and have been very hard to get under control.

I have malar rash, butterfly rash, hair loss, fatigue. The problams that plague me the most are my joints and high white blood cell count that they cant seem to pinpoint what's going on.

I have a rheumy who thinks that lupus is just a catch phrase that doctors use when they don't know what's really wrong with you...so far she has not been able to pin point anything that fits the bill but she wont accept the possitive ana tests that I insisted be run.

I am on a list for another rheumy but it's taking forever.

My sister is diagnosed, she had seizures when she was in her teens and in her young adulthood.

She has been seizure free for many years now. I hope that continues for her.

When I was 14 yrs old I used to have "spells" where my joints would lock up and I would go numb from head to toe. I was hooked up to see if they could find any seizure activitie but of course nothing showed up.

These spells stopped when I was 21. I've not had them again. I'm 48 yrs old now.

HuntsmanMom
12-06-2008, 09:54 AM
It never ceaces to amaze me how ignorant the doctors can be. It is your body, you know what is going on. Yet they won't run the tests that need to be done. I think the medical profession is a money making business. One of my dr's called Friday and said that I have to come in for labs to test for Grave's and Huntington's. I think, like you, they grasp at straws and pick a name. I don't really care what they call it. Just at least have some compassion and help.
Today is not too bad. I have a migraine and am swollen from head to toe but thankfully I don't have to go anywhere today.

KathyW1958
12-06-2008, 10:03 AM
Hi Tina,
I think that you are right that the medical profession is a big money making industry and I think that that is why they do not try very hard for a cure for the illnesses that there is no cure for. Shoot if they cure you then they can not get anymore money out of you.

Another thing that I don't like is that they will tell you they are testing for one thing when they are actually testing for something else and then when they find out that you have a bad problem they spring it on you. That happened to me in May. I thought I was being tested for cholesterol and well nope got tested for Pernicious Anemia and vitamin B12 deficiency instead and unfortunately for me the tests for PA were positive. They should just be honest with you n the first place instead of springing bad news on you. What do you think?

Hugs,
Kathy

HuntsmanMom
12-06-2008, 10:10 AM
I am in total agreement with you. I am sorry to hear that you do have a positive result but it is a step in the right direction. What are they going to be able to do for you?

KathyW1958
12-06-2008, 10:58 AM
Hi Tina,
I will be ok. I just have to take vitamin B12 shots once a month for the rest of my life as I can no longer obsorb vitamin B12 from foods and the only way that I can get it into my system is by IM injection. I will be ok.

Hugs,
Kathy