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Sammy
04-09-2013, 07:30 PM
Hello,

Well after becoming a new member yesterday i was pleased to be able to relate some of my symptoms with other members. As i don't know anyone else with Lupus i have found managing on my own like travelling a maze in the dark. I should introduce myself properly. My name is Sam .. im 40 years old and live in Melbourne Australia. I was diagnosed with SLE 3 years ago. I am a Nurse currently working in a large public hospital. This has certainly worked to my advantage as i was able to see and be tested by some very good and knowledgable Doctors quickly.
I have a strong family history of AI disease on my mothers side, but certainly never expected nor even gave much thought to the idea that i would be where i am today. I was dianosed with Fibro about 20 years ago but never really new what it meant, only that my muscles hurt and i fatigued easily. Then suddenly at 37 two children later i started feeling terrible. I couldn't use my hands my joints were screaming at me, i couldn't walk up or down stairs and i could barely drive home at 4 oclock in the afternoon without wanting to pull over to have a sleep. I was burning up all the time, night sweats, tingling in my legs and feet, blisters in my mouth, lesions on my scalp, head aches, sore eyes, chest pain and extreme fatigue. My ANA readings went from 40 to 80 to 640+ within 4 weeks.
Anyway i am now on Meds. I was on Plaqeunil for awile but it gave me such tummy troubles that i stopped and now rely on Methotrexate 20mg. I have been up to 25mg but it has started to play havic with my liver. I would love to know if there is any other medication that people have tried. I do take NSAID's as required but am trying to stay away from Pred as much as i can. I am currently having a flare at the moment which as you all know can be very painful and frustrating.
When i have a flare i just get sooo hot my skin just burns yet i have no temp. Does anyone else have this?

Im so pleased to have found this site and would love to hear from anyone...

Sam xx

debbie-b
04-10-2013, 04:22 AM
Hi Sammy

Welcome to WHL.
How long have you been on MTX? It really helped me with the pain, but it took almost three months to work.
My face and ears are always hot, even when I am not in a flare, no idea why.

Debbie

tgal
04-10-2013, 08:55 AM
Hi and welcome to WHL! So glad that you have joined us. I can't really help you because I am currently on plaq, steroids and MTX and you nixed two of the 3 LOL. I know several other members have moved from MTX to some other immune suppressant drugs but I am having some major brain fog today and can't for the life of me think of them. I am sure they will be here shortly to answer.

Once again, welcome to our WHL family. We are really glad to have you!

Sammy
04-10-2013, 05:54 PM
Hi Debbie,

I have been on MTX for 2.5 years and yes it took about three months to work for me also. It has certainly helped me and i don't know where i would be without it. I start to feel pain ( more than usual ) a couple of days before my dose is due so i know i rely on it but what else can i do. My Doc has me on a pretty high dose and has mentioned sub cut injections if i need to go back up to 25mg so you get the full effect of the drug without any loss due to breakdown through the liver.
I'ts so interesting to hear that you feel the same extreme hotness as well, it is such a bizzare feeling and i assume with you also it only started to occur after you got sick.
Thank you so much for your reply, i hope you are feeling well and i send you big hugs.

Samxx

Sammy
04-10-2013, 06:14 PM
Thank you for the welcome it's lovely to finally be here. I will have to do some research into other immune suppressant drugs not thet MTX is not working but it's always good to be armed with knowledge.
Thanks again
Sam xx

debbie-b
04-11-2013, 01:02 PM
Hi Debbie,

I have been on MTX for 2.5 years and yes it took about three months to work for me also. It has certainly helped me and i don't know where i would be without it. I start to feel pain ( more than usual ) a couple of days before my dose is due so i know i rely on it but what else can i do. My Doc has me on a pretty high dose and has mentioned sub cut injections if i need to go back up to 25mg so you get the full effect of the drug without any loss due to breakdown through the liver.
I'ts so interesting to hear that you feel the same extreme hotness as well, it is such a bizzare feeling and i assume with you also it only started to occur after you got sick.
Thank you so much for your reply, i hope you are feeling well and i send you big hugs.

Samxx

Hi Sammy,

Unfortunatly, I had to stop MTX, because of my liver. Through a liver biopsy last year, we found out, that I have Autoimmune Hepatitis ( Lupus attacking the liver). My liver enzymes are always very high ( with or without MTX), so my rheumy had me stop the MTX, to give my liver a break. I am in alot of pain every day.
I don't know, what my rheumy is going to do next. At the moment I am getting a possible Parathyroid Tumor checked by a Endocrinologist. After that has been resolved, my rheumy has to think of something, some kind of treatment, that is easy on the liver, but brutal on the pain.
And yes, my hot face and ears started recently.

Debbie

Sammy
04-11-2013, 06:46 PM
Hi Debbie,

Sorry to hear that Lupus has attacked your liver. The more i read about this disease the more i hate it. However the people you have it and live with it give me such great inspiration. i don't think some people out there understand what it's like to have constant daily pain, have flares that make you feel worse ( if thats possible ) and have to go through mountains of tests and drugs that cause awful and life threatening side effects.
It's funny i was picking up my daughter from the in-laws the other day and i was so glad that they met me at the bottom of the stairs because i honestly didn't think i would make it up. I commented to my mother in law that i was pleased she came out as i was in too much pain to climb, her comment straight back was " well my feet are still sore from walking around the zoo "
Sometimes its just easier to say nothing to the people who have no clue. !!!

Best wishes with the Endo, sounds like you have a good Rheumy hopefully he will find the right path for you.

Sam xx