Medication Roulette begins: I'm back from my rheumy... - LUPUS UK

LUPUS UK

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Medication Roulette begins

Silvergilt profile image
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I'm back from my rheumy after a referral from my GP. It was a bit weird tbh - he decided to try planequil but said almost in the same breath that he didn't think it would help a lot; he said he wanted to try me on some newer medicines but gad to go through protocols before he could do so. He wants me back in 3 months and if I hit the markers then I will be trialled on a new medication. "Or the planequil could work", he added, but not with much enthusiasm.

Guess we will see, I sort of felt he was a few inches away from saying the L-word but he won't commit yet. Till then, guess we will see what the side effects will be. Send tea.

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Silvergilt profile image
Silvergilt
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Chapter profile image
Chapter

I would think that if he was a few inches away from saying the L -word, then what is the harm of starting you on Plaquenil while you are waiting for him to decide? My first

Rheumi started me on Plaquenil and Prednisone (my face was out of control) right away and she did not have a "for sure" diagnosis. The next Rheumi pretty well has treated me the same - they follow the symptoms and treat accordingly. Good Luck with your meds!

Silvergilt profile image
Silvergilt in reply to Chapter

That was sort of my thought, my only issue was he seemed pretty certain it wouldn't be too effective and is just getting the boxes ticked before he puts me on something else, I'm not sure what he has planned. My main qualm is summer holiday is coming up and my son is autistic, I need to be full on as his carer and having side effects get in the way is always a bit eek - methotrexate was an adventure O_o.

We shall see how I roll, I'm a bit meep wondering if he is thinking Rituximab will be next, but that isn't something I'm going to think about just yet.

kazp profile image
kazp

30 years on and I am still playing this game !! As my body changes along with Lupus and vice versa.

We are all the same BUT so very different with our treatments, you'll find what works in the end but it will take time.

take care

Silvergilt profile image
Silvergilt

And it gets weirder; my GP, who was formerly a rheumy, thought I would still be on sulfasalazine and Plaquenil together in the hopes to maximise effectiveness. His brows shot up when he read the letter back that I am on plaquenil only. Rheumy seems to be ticking protocol boxes to get me cleared to get on other medication. In the meantime my Vit. D is too low -even though I am taking the maximum strength Vit. D capsules I could get, so I'm being prescribed extra uber Vit D. Will see how I roll.

I guess I am just counting down till September for now, when I have my review.

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