Update on my Auto Immune Stuff

The side effects of the prednisone are really starting to kick in now, and I am now definately ready to get off it! I had a check up with my gp last week and I have never ever had high blood pressure before, but my blood pressure was high which is apparently a side effect of the prednisone. I have also started putting on weight really quickly which I was hoping I may have avoided, but it has just started happening in the last 2 wks. BUGGER!

My face has been swelling more and more too and the other day I missed a dose and ended up having my neck swell up like a big huge goiter. It looked awful! I have managed to taper my dose by about 2.5mg with minimal side effects, no crash this time like I had when I tried to taper by 12.5mg without the plaquenil.

I think the plaquenil is starting to work a bit now, slowly but surely. When I am feeling unwell I am no longer having the pain I was getting, just the exhaustion and foggy head. I have no idea if this is common for autoimmune diseases apart from Rheumatoid Arthritus but I seem to get worse in humid whether. It explains why I had a flare when we went to see my parents at the coast at Christmas time and in our recent humid weather I haven’t been feeling quite as good as I did initially on the prednisone. I am however still feeling MUCH better overall than I did prior to the prednisone.

The best thing of all is that I am sleeping better at the moment, which I think is an effect of the plaquenil, because the prednisone actually made my insomnia worse, but the insomnia didn’t bother me as much as it did previously. I am actually able to stay awake and even design until 11pm at night which I haven’t been able to do for the longest time! And now, I am able to sleep when I get to bed as well, which is even better!

So right now I am feeling very hopefull that the Plaquenil is the answer for treating this thing which is making me so happy. It is such a relief. Finally a way to manage this thing and actually have a life instead of just live to work and get home and crash every day. At the moment I am trying to decide when to taper my dosage again, I want to do it as quick as possible but I don’t want to risk another flare either. Dean thinks I should take it nice and easy but the prednisone side effects are really doing my head in! Oh well, guess I will take it one day at a time for now and when I feel like I have been ok for long enough drop the dosage again.

3 thoughts on “Update on my Auto Immune Stuff

  1. barbara.vanden Heuvel

    I received a letter for Mr. Frans Hooijmaaijers in Oosterhout. The post wrote a remark on the envelope (unfortunately I had to open the envelope to see where it came from) that the person has left the adress. It seems that he has moved to an other country.

  2. Janine

    OMG Robin…just came across your blog. I have Crohn’s Disease and took prednisone a year ago for 5 month. I took 75mg a day and gained approx. 15 kg!!! It took about 3 month to get off prednisone as it has to be reduced slowly. Seriously auto immune conditions suck!
    All the best to you! Hugs!

  3. clikchic Post author

    Thanks so much for your comments about Prednisone Janine. So sorry for the late reply, I have only just worked out how to reply from wordpress! ROFL

    I have gained about 5kg on the prednisone.. sadly it seems like I still need it tho because I am tapering at the moment and the lower the dose the crappier I feel. I see my Rheumatologist today so will be interesting to see what he says.

    Thanks for sharing! :-)

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