View Full Version : Sharing my story with the community ^^

09-30-2011, 06:39 AM
I am Cynthia, female and single. 29 years old.

It is nice to be around people who can understand what I am going through, also may benefit from your experiences.
So, I will tell you my story with this disease.
My problem started when I had swelling in the hands, feet and the neck with severe pain in joints.
I couldn't open a bottle or a door easily or move without the pain.
I lost my appetite for long time and didn't eat properly for 3 months.
I feel something more than fever like my blood is boiling hot from inside and anyone touching me can feel it too with internal shaking very noticeable from the outside whenever I pick or move something or even talk.
I think I renal colic.
I have lack of sleep and weakness in the eyes.
I have abnormal heart beating rate and my blood pressure keeps on dropping and feel faint and dizzy most of the time.
I feel like Rheumatism pain that keeps on coming and going in my joints throughout my body.

I went to the hospital and the doctors there suspected in my case. After the urine and blood tests which I will upload pictures of them, the doctors said it is Kidney Inflammation, but after more investigation, they said it is something related to the immune system and sent me to the Rheumatology Clinic until they diagnosed me with SLE.
Then, I had to stay in the hospital for three days. They used to give me injections of Prednisolone with high rate through the vein until the swelling was gone.
And I requested to go home and they let me, prescribing for me:

Prednisolone 70Mg which was high quantity, I couldn't handle it.
Gasec-40 I took only for one day because my body collapsed later on.
Rofenac 50Mg,
Calcium 600Mg,
Azaprin 100Mg,

After couple days, I felt my body was collapsing with high heart beats and internal shaking and all except for the swelling which had been gone for long time.
So, I went to another hospital because I wasn't comfortable with the results of the old one, and they made me stay there for a week. Until I insisted on them to go back home, and they let me go after prescribing:

Prednisolone 40Mg they kept of decreasing it every month till it become 10Mg, and remained like that so far
Calcium 500Mg,
Immuran 100Mg,
I Alpha 0.25Mg,
Plaquenil 200Mg, Which I stopped taking after my last appointment with them.
Riaproxen Naproxen 250Mg,

I came back and my condition was stable for like 6 months, although the pain was there.
So, I occasionally if not rarely take some other medicines which are not part of the prescriptions given to me, which are:

Sapofen 600Mg,
Rofenac 50Mg,
Voltaren 50Mg,

I take them whenever I can't stand the pain I am having with my bones. Until lately, the swelling of my hands and feet started coming back again with all my health problems and I am afraid that everything I have went through for 8 months so far with all the medications and appointments and prescriptions and the diagnosis were all wrong. I am losing hope going back and forth to the hospital.
What can I do?

09-30-2011, 09:14 AM
First let me welcome you to WHL. I do have a question though. Why did you stop taking the plaquenil? Plaqenil is a first line drug that helps so many. It takes the drug 4 to 5 months to really work but for many it makes a huge change

09-30-2011, 07:31 PM
hi cynthia, and welcome to our cyber family.

can i ask what country you are from.
we have people here from many corners of the globe, everyone is welcome.

running girl
09-30-2011, 08:01 PM
Hi Cynthia,

I'm sorry, I can't offer any advise, just a warm welcome. You've been through an awful lot and I hope you feel better soon.

I gain a lot of strength from this lovely cyber family. There is also a ton of good information on the threads.


09-30-2011, 11:49 PM
Thank you tgal for the welcome,
About Plaquenil, the doctor actually removed it after 1 month without telling me why or anything. But I do believe Plaquenil is related to the skin rash or something like that which I didn't have. But after all the main problem I have right now is the swelling of my hands and feet, if they can go away, I can be happier to deal with all the rest of my issues.

Thank you steve.bryce for the welcome,
I am from England but recently moved to the Middle East. Glad to know that people come here from all places, it somehow makes you feel stronger than the disease! I hope to be.

Thank you running girl for the welcome,
I am feeling better already being around here and reading other people fighting along with me. ^^