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Gabrielwriter
12-30-2007, 09:28 AM
Hello everyone! I am a 48 year old female who after 12 years of various symptoms was diagnosed with SLE. I think the hardest thing for me was getting a diagnosis!! I am an Registered Nurse who developed the classic butterfly rash 12 years ago and developed hair loss at the same time. Only my sed rate was elevated at the time, and my g.p. mentioned lupus but decided against it since my ANA was negative. Here 12 years later and a horrendous summer, I developed joint pain in wrists and ankles, extreme weakness and fatigue, and my doctor kept saying "I don't know what is wrong". Convinced that something was wrong and thinking back to the lupus, I took all my lab results to a friend who is a very good MD. He took one look at my lab and listened to my history and says yep you have lupus. However, I am one of the less than 10% who do not have a positive ANA. He started me on prednisone to get me through the holidays until I can get into a rheumotologist. It worked for a couple of weeks, and now the pain is back full force. Any suggestions?? Is it common for prednisone to not work in Lupus?? Thanks for listening. I look forward to reading your posts. :o

Numpty
12-30-2007, 10:55 AM
I haven't gotten as far as a diagnosis yet but I just wanted to leave a message to say welcome to the forums! There are lots of people here who will be able to answer your questions! They're a godsend! :)

tintin28
12-30-2007, 12:57 PM
Hey Gabrielwriter~! My own experience is that Prednisone really helps with the fatigue, fever and the energy level. However, I still get my usual joint pains while on it.

The weird thing I found about the joint pains is that if I stop using the joint because it hurts then gradually the joint will lock up even more. I read somewhere that the joint pains are partly caused by deposits in the joints--and using the joints will actually help to relieve the pain by clearing out these deposits. Not sure if the mechanism is correct--but I know for sure that some moderate exercise on the painful joints can help...

Gabrielwriter
12-31-2007, 07:52 AM
Yes that is what I noticed, emotionally I felt better and the joint pain subsided for a few days but came back. Not sure if the risk of the prednisone are worth it? Will check other options. thanks :lol:

Saysusie
12-31-2007, 10:01 AM
Hi Gabrielwriter: Welcome to our family!

Prednisone works on many other aspects of Lupus, not just joint pain. Your doctor friend did a good thing by giving you the prednisone. However, you probably need some NSAIDs or Plaquenil to help with the pain and the inflammatory process of Lupus. Most people are familiar with over-the-counter, nonprescription NSAIDs, such as aspirin and ibuprofen.
NSAIDs are more than just pain relievers. They also help reduce inflammation and lower fevers.
Prednisone is primarily an immunosuppressant. The immune system protects against foreign bacteria and viruses. In some illnesses (such as Lupus), the immune system produces antibodies, which become overactive and causes undesirable effects. These illnesses are referred to as "autoimmune diseases". Prednisone suppresses the production of these antibodies. This suppression can make it slightly harder for you to fight off infection but also stabilizes your immune system which is overactive due to your autoimmune disease (Lupus). So, it is not a good idea to stop the prednisone because it is not helping you joint pain...it is doing much more important work!
NSAIDs are anti-inflammatory drugs. These drugs are used to help with the joint pain. Antimalrials also help (they are very beneficial in the long run, it just takes some weeks for you to notice the benefits. It is for this reason that they are given in conjuction with NSAIDs and immunosuppressants).
Call your doctor friend and ask if he will prescribe some anti-inflammatory medication for you also, until you can see you rheumatologist. Here is a list of NSAIDs:
Generic Name Brand Names
Aspirin Made by several companies
Ibuprofen Motrin®, Advil®, Motrin IB®
Naproxen Naprosyn®, Aleve®
Nabumetone Relafen®

COX-2 inhibitors are a special category of NSAIDs. These medications target only the COX-2 enzyme that stimulates the inflammatory response. Because they do not block the actions of the COX-1 enzyme, these medications generally do not cause the kind of stomach upset or bleeding that traditional NSAIDs do. COX-2 inhibitors also do not offer the same kind of protection against heart disease.

COX-2 inhibitors include:
Generic Name Brand Names
Celecoxib Celebrex®
Rofecoxib Vioxx®*
Valdecoxib Bextra*

I hope that this has been helpuf to you. Please let us know if you need anything further!

Peace and Blessings
Saysusie

Gabrielwriter
01-01-2008, 06:49 PM
Saysusie,
Thanks for the information! I have been taking Ibuprofen and Naprosyn as I needed it. I added a baby ASA as well for heart protection as well as inflammation. I have also added Omega 3 and Flaxseed as I have read this are both good for inflammation and protecting the heart. I had already planned on asking for Cox-2 inhibitors as I feel the other NSAID's I take are just not cutting it. Sometimes it is not a good thing to be a nurse, but on the other hand, I can go in armed with information! My current Dr is great and doesn't get offended when I ask him about various things I have read, etc. Thanks again for the information!

Saysusie
01-02-2008, 07:51 AM
I am a strong advocate for us being well-informed and educated patients. Many times, we are the only ones that we have to speak up for our treatment. So, I commend you for knowing what you are talking about and going to your doctor armed with information and knowledge. You are lucky that you have a doctor who does not let his ego get in the way of dealing with an educated patient. Many of us are not so lucky :?

Please keep us informed about how you are doing and what medications are working for you. In the meantime, come to us at anytime with any questions you may have or if you just want to share!

Peace and Blessings
Saysusie