Gefiliciteerd Oma! & Update

Today is my Oma’s Birthday! I wish I could be there to wish her a Happy Birthday in person! So Oma, sending you lots of Happy Birthday thoughts across the oceans! Hartelijk Gefiliciteerd met je verjaardag Oma! Ik hou van jou!

I had a follow up appointment with my Rheumatologist yesterday. I was kinda hoping he would tell me to stay on the Prednisone until the Plaquenil has had more time to work because I really feel like I need it. The lower my dosage gets the sicker I start to feel again. I knew I was sick, but I didn’t realise just how sick I was till I started to feel normal again.

My thought processes are slowing again, which is so frustrating.. I am getting a foggy head and very forgetful. That had all stopped on the full dose of Prednisone and it was WONDERFUL to be thinking clearly! I have been making really stupid mistakes at work which is not going down very well. I am trying hard to do well but my brain just won’t work!!! The tiredness is coming back.. slowly.. but I am getting back to needing naps again on the weekend, which I hadn’t needed for a while. My joints are starting to hurt again and feel stiff, as well as my back and spine feeling sore and stiff especially in the mornings. My skin is getting soo itchy again. I am getting headaches again, which stopped on the full dose of prednisone. I had always dismissed the headaches as just one of those things.. but it looks like it is connected.

So back to the doc visit.. he wants me off the prednisone as it is not good long term. I know it isn’t.. because I have heard so much stuff about it, and I am gaining weight on it, getting high blood pressure, and my cholesterol has gone up on it. But I just FEEL so much better on it. So basically he wants me to keep tapering the dose, and wants me off it entirely by the time I see him again in 3mths.  He says I need to give the Plaquenil at least another 3mths which makes sense from what I have read as it apparently takes 3-6mths to work. He said if the Plaquenil is not working by then we can discuss other stronger immune suppressant drugs to try which by his expression was not an idea he was keen on, but at this point I don’t feel I have a choice. If the Plaquenil doesn’t work.. I just won’t be able to keep functioning the way I was. 

My blood work again was inconclusive, only showing inflamation again, still even with the prednisone. He said I obviously have some sort of systemic inflamatory disease.. but he just can’t tell me what. [thanks to my very unhelpful bloodwork!]

I can feel all the symptoms slowly coming back and it is an unpleasant reminder of how crappy I was feeling. I so don’t want to go back there as it is no way to live! Not to mention the fact I would not be holding on to my job much longer!!

So I am trying so very hard to think positive that the Plaquenil will start working it’s magic very soon… fingers crossed!

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