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

358 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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Hello Brenda and (((((((hugs)))))))

I'm so sorry to hear that you're in this frustrating circle of events and please don't worry about offloading, we DO care :hug:

I think in fact that many here can sympathise with you greatly and you have managed to put into words what many people feel.

I am lucky not to have the same extent of problems that require too much wheelchair use and no oxygen but I too have been wondering recently if I am not simply trying to row a boat with one oar(paddle) and going around in circles and yep, for me too, it's coming up to two years of treatment.

I have had a good week this week and I'm really enjoying it, you never know, this time it might last a little longer.

Sorry I can't actually DO anything for you :grouphug2:

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