View Full Version : Newbie lupie here

12-01-2008, 03:42 AM
Hello everyone,
wow a new site to get my teeth into, i have been looking for a place like this to share my stories with and ask advice etc,

my name is Jane im 29 and i live in the uk, i got diagnosed with FSLE september 07, at the time i had a very obvious malar rash across my face it was really sore and itchy (i have pics), ive always been ill my whole life in and out of hospitals, 2 previous DVT's both in my left leg, aches pains just the general really, and getting told by drs "but theres nothing wrong with you" (im sure everyone nos what im talking about?!) i got put onto hydroxychlorequine 200 bd to start with and had steriod injections to take down the swelling of my face, this all worked wonderfully until april 08, i then got another rash and went to see this wonderful man who is now my consultant, and he started me on pred tablet form, unfortunatly i had to stop taking it as it gave me a stomach ulcer, so i was just taking the plaquinil up to september 08 i got really ill and went into a flare ive been off work since this time as the flare isnt going anywhere, my consultant put me on methotrexate 7.5mg and some other meds to help with taking it, im suffering from a right old back pain at the moment and can only stand for 5mins at a time before collaspsing, anyway i dont think ive missed anything out my memory isnt what it used to be, any questions id be happy to explain more, thanx x

12-01-2008, 07:04 AM
Hey there, im also from the UK :D Where abouts are you? Im in Manchester which really doesn't help as its so cold and wet!! Im starting on planquil (sp.?) in a few weeks when my appointment gets sorted. How have you found holding a job down with the illness? I graduate in a couple of years and it is a concern for me :S

12-01-2008, 07:29 AM
Welcome to the site. I am not from the UK, I am in the United States in Southern Georgia. I am glad that you found this site as there are a lot of good folks that come in here with a vast wealth of information and compassion.

My name is Kathy and I have SLE, Lupus and a host of other auto-immune disorders.

It's sad that the Prednisone adversely affected you like that as it is a good drug for short term use. I hope that your other medications are working for you.

I hope to get to know you and that you keep posting.


12-01-2008, 09:26 AM
supergiv:- im currently on long term sick, i had to drop my position and everything i was so gutted id been at my placement for nearly 7 years, and i love my job, but this back pain is so painful, i have been taking plaquinil for a year im on 400mg a day, which is the highest dose, it was good at forst but i think my flse is a little bit more progressed nowadays, im in hertfordshire which is also blinking cold and wet doesnt help matters lol x

kathy:- thanyou for the nice welcome, i intend to stay here for a while im still kinda new to the whole lupus only a year since i found out i had it, but i hope to increase my dose of mtx soon, so i can feel much more benfits from it, unfortunatly i cant take any anti inflammatories (sp?) coz of the warfarin im on also lol hmm.....anyway thanx again x

12-01-2008, 12:32 PM
Hello Iseedeadmonkeys (hilarous moniker :lol: )
Welcome to our family here which is, as you've probably noticed, a global family. I'm glad that you found us and that you've decided to stay here for a while.
Methotrexate is one of the immunosuppressant drugs used in the treatment of Lupus. It is used when Prednisone is not effective and/or if the patient does not respond well to Prednisone. It is also referred to as a "steroid-sparing" drug. It does take some time before you will really begin to see the benefits of the Methotrexate, but it has been known to be very beneficial to many Lupus patients.
Part of the process of Lupus is an over-active immune system (known as an auto-immune disease). Autoimmune diseases are illnesses that occur when the body's tissues are attacked by its own immune system. The immune system is a complex system within the body that is designed to fight infectious agents, for example, bacteria, and other foreign invaders. One of the mechanisms that the immune system uses to fight infections is the production of antibodies. Patients with lupus produce abnormal antibodies in their blood that target tissues within their own body rather than foreign infectious agents. Because the antibodies and accompanying cells of inflammation can involve tissues anywhere in the body, lupus can attack and affect every part of your body - tissues, muscles, organs, etc. as lupus can cause disease of the skin, heart, lungs, kidneys, joints, and even the nervous system.
Methotrexate suppresses the auto-immune process in Lupus and, when used with NSAIDs for pain, and Plaquenil for fatigue, joint pain and dermatological problems, symptoms can generally be controlled and managed.
I hope that you are able to feel some relief from your symptoms soon. We are here to help you in any way that we can.

Peace and Blessings

12-01-2008, 06:42 PM
Hi iseedeadmonkeys and supergiv;
I am in the United States. Northern Ohio to be exact. I have only been placed on short burst prednisone (medrol dose pack) three times since diagnosis. This last time, I got really mean on it and was told that was a side effects. I don't think I want to be back on that med again. Also, it helped very little this time.
I do take Plaquenil and it seems to help a little. My doc tried upping the dose to 2 pills daily, but I got massive headaches from it. I have headaches all the time anyways, but they were much worse.

Good luck in your search for answers.

12-02-2008, 06:51 AM
im thinking im gonna have to go to back to the drs and just bite my lip and ask for the injection thing again i think its steriod based? but i really didnt want it in my system after getting tht ulcer from it, but im in so much pain with my back its so uncomfortable, and popping co-codamol like they are going out of fashion lol :? now all i have to do is up my mtx but i just found out my consultant appointment isnt til feb lol i dont think i will last till then, im back on the hot baths 2wice a day now,

12-02-2008, 08:46 AM
Hi Isee,
I feel bad for you and hope that you can get into see the doctor as nobody should have to be in constant pain. I hope that you get to feeling better.