View Full Version : hi to all
05-10-2008, 02:09 PM
hi i have registered with this site on behalf of my sister who has been diagnosed with lupus 4 years ago, She has now been told that it has started to effect her kidneys, the last 8 weeks her lupus has been getting worse and worse and she can now hardly move as her joints are so painfull and swollen, She is hardly able to walk and is unable to do anything for herself, also recently she has collapsed and ended up being admitted to hospital. she discharged herself after a few days because she was so fed up. Today a lump appeared on her forehead which as gradually grew over the day and is now about 2 inches across although she has not banged her head. does anyone have any idea what is going on and what could she expect now as she is so scared of not knowing and we are all really worried about her.
05-10-2008, 02:53 PM
Oh my heart goes out to you both.
Welcome David and Gina.
There are many possible reasones for the lump. It's difficult to even guess with out seeing it. Her best bet is to have a doctor look at it.
As far as her joints being sore and the swelling ... sounds like she is having a bad flare.
Why did she sign herself out of the hospital? I know it's frustrating just waiting for information, but if her kidney's are affected then she needs medical assistance. If she is having trust issues with her doctor then she should ask for a second oppinion.
There are many here who are familier with kindney and lupus issues. Hang tight, I'm sure someone will be along soon.
I'm so sorry to hear of your sisters suffering, and I pray it's just a flare that will pass soon.
If you are not familier with the term flare, it's means the lupus has been triggered into high gear; whether by medications or a reaction to something else, even stress. They can last a couple days or a couple of weeks or a couple of months.
Rest, proper diet, and calm is what she needs. I'll keep you both in my thoughts. Please let us know how things are going.
05-10-2008, 03:40 PM
thanks for you message, kelly who is my sis,her gp keeps putting everythink thats wrong with her down to her lupus, i,e she has blisters all over her mouth at the moment she is not eating right through this, in 8 weeks she has gon for a size 14 to a size 8 witch is not good,looking at kelly at the moment it's like your looking at deth wormed up if you know what i meen, againg thanks
05-10-2008, 05:15 PM
yes I do know what you mean. My sister has lupus as well. She had been in remission for many years now. 4 yrs ago she started getting really sick and losing weight.
She put it down to lupus and was slow going to her doctor because she didn't want to face the possibility of the lupus being active again.
I met her for lunch one day and she had been shopping for clothes. She was very excited because she found a pair of jeans to fit her...they were a size 0 :shock:
I freaked! She's tiny and always has been but she's 4ft 11 and usually takes a size 5. To shorten this up abit. It wasn't the lupus it was ceiliacs. Turns out she has both. Ceiliacs is an intolerance to wheat or gluten which comes from wheat.
The sores on and in the mouth are common to lupus. Very painful and I can understand her not wanting to eat. But there should be medicated ointments she can use to help numb it.
I've mentioned on this site and have had a few say they have experianced the same thing. I was thinking about the lump on your sister's forhead....last spring I got in my car and I felt zing/burning on my neck under my ear. When I touched the spot with my fingers I was suprised to find a golf ball sized bump. At first I thought it was a spider bite. There where baby spiders all around my back door when I came out. So I though one the little *#$%@ darlings bit me.
On and off over the past year it will flare up again. Right in the same spot. It's not a hive or a rash. It's a lump. Hot sore and hard. Takes a week to a week and a half to go away.
When I showd my doctor, she just said weird....hmmm.
:roll: loads of help there.
There is a post here by one of our other members, Oluwa, about lupus rashes. There are photos .... you can take a look...warning it aint pretty. But it did help me to identify a couple of the rashes I get. I'll look up where it is and edit this message to let you know how to find it.
If you click on WeHaveLupus.com Forum index uptop there to the left and look under Lupus web site links you find a post called Skin Disorders, Malar Rashes and ect Photographs. Click on that and you can look and see for yourself. I was scared to look myself but I did, and I'm glad I did. Face the enemy and all that...know what to look for. That's not to say she will get all of these rashes or as sever. And there are treatments for them.
Mostly what she needs from you right now is your love and support and understanding. There's nothing worse then feeling miserable and not feeling like anyone is on yourside.
Good luck to you both...and check back here often ... this is a very active board and I'm sure the others will be much more helpful than I have been.
Gentle hugs to you sister Kelly.
05-10-2008, 05:33 PM
thanks again sits_inthe_corner i would realy like that as i wnt to get as much info on lubus as i can for her, i offer her to join her self but as she is swolen up and her jounts are realy stiff she couldent yype many thanks again
05-10-2008, 05:40 PM
You are welcome to look around, under the symptoms board most people will put the issue they are dealing with as the title of that post.
Saysusie is rich with information. Pay close attention to her posts and her responses to questions and you cant go wrong.
05-10-2008, 05:43 PM
thanks will do
05-10-2008, 08:10 PM
cure4lupus.org has good info. Most my info comes from here, webmd and that sight. I have FMS, not lupus as far as it seems right now, but familiar problems that you can find info for. Sorry for your sis, and the pain of having to watch her go through this. Your a good bubby to your sis.
As SITC says, Saysusie is so full of helpful knowledge. She seems to have an answer to most anything you need to know. I rarely look elsewhere anymore.
Fact I seen, that May 10 is World Lupus Day. I learn something new every day :D . Didn't know it had a day :shock: .
05-10-2008, 08:59 PM
davidandgina, welcome and I am so sorry to hear about all of this. Lupus is a terrible disease and can cause so many many horrible things to happen. I know first hand about the frustration side of things, but please tell your sis to hang in there and find the right doctors to help her through this. With the right mix of meds this can be controlled and she can get her life back. I along with many people here are proof of that. I wish you both the best of luck and everyone on this forum is here for you anytime!!
05-11-2008, 02:41 PM
Welcome! So sorry your sister is having such a rough way to go lately. :(
The bumps you and sits are talking about (especially sits) sounds like a swollen lymph node. The only reason I know about that is because I used to work in a medical lab and had a knot similar to what you two describe come up in the middle of my head on the left side. The girls in the office worried over it until one of them finally got one of the docs to take a look at it. He told me that that's what it was and it just meant I had an infection somewhere and gave me some peniciline.
Right now all the ones in the base of my head and on my neck are swollen up huge, but that's another story and one I'm freaking out a bit over.
05-11-2008, 06:38 PM
How wonderful that your sister can rely upon you for support! That is such a gift to anyone with lupus. I am sorry you are all suffering. SITC is right...your sister needs to be under medical supervision, especially if the lupus is affecting her kidneys and particularly during this flare. Tell her to keep fighting the good fight and to keep looking for the right physicians to assist her. Perhaps you can share this website with her so that she can see that many people here will offer comfort and support through her difficult times.
Best of luck to you. I will keep you family in my thoughts and prayers.
05-12-2008, 08:22 AM
I am so sorry that it has taken me so long to respond to your post. But, as usual, the caring and knowledgeable members here have made sure that you were welcomed and that you were given excellent advice. Particularly about the fact that it sounds as if your sister is in the midst of a pretty serious flare-up right now and that she is also suffering from mouth ulcers (a very common symptom of Lupus). I, myself, had a chronic case of mouth and nose ulcers to the point where I, like your sister, was totally unable to eat. My ulcers were also in my scalp causing me to go almost completely bald.
My doctor prescribed Plaquenil and Prednisone. Have either of these medications been prescribed for your sister? If not, perhaps she should speak to her doctor about them. Also, Predinsone is also prescribed to deal with kidney problems in Lupus. The disease is called Systemic Lupus Eurythematosis. Systemic means that the disease can affect ALL parts of our body (our skin, our joints, our muscles, our internal organs, our blood, etc.) Now, whenever lupus affects any of the above parts of our body, that particular affect has its own name. For example, when Lupus affects the kidney, it is known as nephrits. To complicate it even further, there are several ways that lupus can affect the kidney, so there are different types of nephritis that we can suffer from.
At any rate, let me give you some information about the medications that would most likely be prescribed for those problems that you stated your sister is suffering from:
One of the most common features of lupus is mouth ulcers. This often occurs during flares along with increased joint pains, rashes and hair loss. there are simple treatments available such as antiseptic mouthwashes and sometimes steroid lozenges or paste . Occasionally the ulcers can also appear in the nose and sometimes, vaseline cream or steroid paste or nasal spray can be used if necessary. In most people with Lupus, low dose steroids (such as Prednisone) and/or tablets such as hydroxychloroquine (Plaquenil), are all that is required to heal these ulcers. Very occasionally ulceration of the mouth or nose can be more severe and if it does not respond to these simple measures. In that case, there are more specialist drugs available.
Some people with lupus can develop discoid skin lesions which are slightly elevated, red areas of skin. The term discoid came from their appearance of looking like red coins or discs on the skin. Similar lesions can occur inside the mouth or nose and occasionally they can also ulcerate. Depending on the type of lesion, steroid paste and antimalarial tablets such as hydroxychloroquine and/or mepacrine are often used to treat this type of lupus disease.
In healthy people, the immune system protects against foreign bacteria and viruses. In Lupus, the immune system produces antibodies, which become overactive and cause undesirable effects (our body attacks itself thinking that healthy tissues are unhealthy). These illnesses are referred to as "autoimmune diseases".
Prednisone is a synthetic hormone commonly referred to as a "cortisteroid" (Nothing at all like the anabolic steroids that athletes use) Prednisone is very similar to the hormone cortisone, which the body manufactures naturally in healthy people. In part, prednisone acts as an immunosuppressant, it suppresses the production of these antibodies which are attacking our body. This suppression can make it slightly harder for patients to fight off infection but, more importantly, this suppression can stabilize the over-active immune system in Lupus.
Lupus is a disease that often presents itself as inflammation: in our joints, muscles, internal organs, etc. As I mentioned earlier, each area that is inflamed, due to Lupus, has its own name. For example, inflammation of the heart is called Pericarditis, inflammation of the lungs is called Pleurisy (and, each of the above have different symptoms so there can be different kinds of pleurisy and heart disease in Lupus). However, Prednisone is one of the drugs used to also help to reduce the inflammation caused by Lupus.
TREATING KIDNEY DISEASE:
As I mentioned earlier, Lupus nephritis is kidney disease that is caused by lupus. Lupus nephritis is a result of inflammation in the kidneys that is associated with an overactive immune (defense) system. Again, it must be understood that there are many forms of kidney disease that are referred to as lupus nephritis. Each form is distinguished by characteristic patterns of abnormalities that are usually defined by a kidney biopsy. In addition to the numerous unique forms of lupus kidney disease, other types of kidney diseases that are not from lupus can sometimes occur in a patient with lupus. While treatment for lupus nephritis can sometimes be initiated without a kidney biopsy, more often, a biopsy is done before starting treatment. Thus, when the blood tests and the overall state of the lupus disease so require, the biopsy can define the cause of the kidney disease when it is in question. The biopsy can also guide treatment when it demonstrates the presence of such severe kidney damage that a favorable response to potentially toxic medications is unlikely. the treatment for individual patients with lupus nephritis depends not only on their own particular form of kidney disease, but also on the manner in which lupus is affecting other areas of their body, their overall health. As I mentioned previously, prednisone is usually the initial treatment for lupus nephritis. The immune suppression medications that are used to treat lupus nephritis include azathioprine (Imuran) and cyclophosphamide (Cytoxan). Also, mycophenolate mofetil (Cellcept) has been used successfully to treat lupus kidney disease.
Please know that Lupus is a disease that is fraught with what we call the "Relapse/Remission" syndrome. That means different things for each of us, but in general terms, it means that there are periods of time when the symptoms of our disease are not as serious and then there are periods of time when our symptoms are very serious and even new ones appear. This is part of the disease and almost all treatment is geared towards avoiding those periods of relapse (also known as flare-ups) or at least making them manageable.
You are doing a wonderful thing for your sister by helping her and by learning as much as you can about her Lupus. We are here, whenever you need us, to give you advice, support, comfort, information and understanding. I wish you and your sister the very best!
Peace and Blessings
I can't really add anything to the excellent advice and info that's been left for you here. I will say that having a person who is supportive and caring like you are towards your sister can make all the difference in the world to a Lupus patient. Lupus can be a very lonely, frustrating disease. Help from a caring friend can go a long way towards getting the disease under control. Lupus can be very bad, but it also can be managed in many people. I'm glad you found this place. Welcome to both of you.
05-30-2008, 03:37 PM
sorry its been so long since i got back to you all but been careing for my sis quite alot she seem to be on the mend a little now her ulcers are going and she is eating again the lump on there head has diserpierd but docters are puzzled at was it was will try to keep you informed on ther futer progress many thanks for your help and infomation you all help me alot speek to you all ass thanks again dave
05-30-2008, 04:55 PM
Good to hear from you, I'm glad your sis is perking up a bit. We will keep her in our thoughts.
06-02-2008, 09:11 PM
I am, also, glad to hear that your sister is doing better! Thank you for keeping us informed! Hope to hear from you soon with more good news!
Peace and Blessings