LUPUS UK

SOS! fLare

I have been symptom free with my lupus for about a year and now all of a sudden out of nowhere my joints are still swollen and painful. the connective tissue in my scalp and neck (throat) are sore and I'm getting an ulcer on my tongue. I'm trying not to panic but I'm super upset! during my remission I finally got off prednisone, lost 100 pounds, got in shape and felt wonderful. I am desperate to do something to stop this in its tracks!

7 Replies
oldestnewest

Even if you do have to go back onto pred - it IS possible to keep weight gain in limits, even avoid it altogether. Cutting carbs drastically on its own DOES work and there is a thread on here somewhere from some ladies who have lost weight whilst still on pred using the Slimming World plan so almost no carbs isn't the only approach.

I can't help with the lupus flare I'm afraid, don't have it and don't know much about that aspect. I posted to encourage you not to despair - pred is not all bad.

2 likes
Reply

Thank you. I will try not to be so afraid of pred. It wrecked havoc on me when I was on 20 per day for years. It was so hard and took so long to get off of it. The doc is prescribing a medrol pack for the flare. Hopefully the taper works.

Reply

What is a medrol pack please??

Reply

Methylprednisolone-a corticosteroid. I'm not sure how it differs from prednisone. It usually comes in a pack that gives you 6 or so days worth with the dosage slowly tapering down.

1 like
Reply

Thanks.

1 like
Reply

It is prednisone with an extra bit of structure, a methyl group, which is supposed to make it more effective. And also can add to the side effects!

The Medrol "pack" is a very US thing, the USA often dispenses medications in what they call "packs" where the contents are the exact length of a course (say 5 days worth of antibiotic or steroids with reducing dose for a flare of asthma) rather than a month's supply of tablets (28 or 30).

Reply

Oh, okay! Thank you! It has really helped me feel better today (first day). Too bad it is not changing the underlying disease action though.

Reply

You may also like...