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It's been 2 years... how far have I come?

352 Views 19 Replies 15 Participants Last post by  BigSis
Warning: You probably won't care but it made me feel better to write all this down.

I saw my rhuematologist yesterday. It has been 2 years since I first saw him and was diagnosed with SLE. Right around that time I joined this site and it has been wonderful. I started thinking about the last 2 years and what has happened (disease wise... everything else would take a book!)

I've now been on plaquenil for 2 years. The doctor said yesterday it isn't doing anything for me as far as he can tell but he doesn't want me to go off it just in case it is doing something we don't know about.

I've been tried on more nsaids and pain medication than I can remember and because of heart and lung disease all but 1 nsaid (mobic) and 1 pain medication (darvocet) has been ruled out. Just my luck, the 1 that works is about to be taken off the market.

I've had more kidney infections, pleurisy, pneumonia and flares than I care to even think about.

I've been on steroids then off steroids, then steroids shots, then back on steroids, then off steroids and now been told to try 2mg a day and see if I can handle it (I get severe depression from them) because I'm in so much pain and my inflammation level is so high I can't hardly stand it.

I've now got high blood sugar, high blood pressure, Lots of edema, brain fog hair loss. I believe most of this is due to medications and not sle.. then again what do I know?

Methotrexate was supposed to be the miracle drug and has now been ruled out due to a hereditary problem.

A wheel chair and oxygen are now standards in my life.

I asked him yesterday "Is all this from a bad flare or is my disease getting worse?"

He looked at me sweetly and said "both"

Yesterday he put me on gold tablets and now perhaps that is the miracle drug. Other drugs were ruled out because my blood test came back showing my liver was "off" (he didn't say what or high or low)

This has been the ?progress? of two years. I can't wait :scaredy: for the next two years.
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Aww Brenda it must be drving you mental. You have a great doc there thank goodness....

I'm wondering how much stress you have been under? I know that stress is a real baddie for me, I can't tolerate even the smallest conflict as it makes me so weak and my desease runs riot. I haven't any medical knowledge as I am newly diagnosed but I will say have a look at your environment, your activity and stress levels. I know with ten or so yrs of no treatment the only way I coped was to reduce stress or eliminate the source and rest as much as I could. Now I work 12 hr days am getting worse again rapidly but I know what's doing it . I think or some of us, treatment can be half the battle not saying if you are the same but maybe worth having a lil look at the other things going on.

Hope your feeling better as you read this. xxP
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