Upped steroid dosage

[mollyaimee]

Hello all,

Following a severe allergic reaction to hydroxychloroquine, I’ve stopped taking that and my rheumatologist has told me to up my steroid dosage from 5mg a day to 15mg a day for 7 days to get the allergy under control then return to 5mg a day after the 7 days.

He then suggested that once the allergy is fully out of my system, we will think about appropriate treatments.

Has anyone else been in this situation before in terms of upping their steroid dosage or has anyone else experienced any other treatment??

Just curious as only newly diagnosed!

[Happykins]

Hi Mollyaimee, I had a severe reaction to hydroxychloroquine too after taking it for 10 days. I was then prescribed meparine which I've been taking for four years now.

I wasn't taking daily steroids at the time but I have 3 monthly injections of 120mg depo medrone - had latest one this afternoon This combination is helping, I still get flares but am able to do more.

Hope you get a new treatment plan in place soon xx

[mollyaimee in reply to Happykins]

Hi! Thanks for your response, it’s so interesting to hear from other people about their experiences! My rheumy hasn’t really mentioned what the other treatments are as of yet so I was just wondering what the other options are, how are you finding meparine?

I’ve had one steroid injection so far and it worked wonders!!

[Happykins in reply to mollyaimee]

On the whole, the steroid jabs have been fantastic - last time not quite as effective but hoping today's will work its miracle again

The mepacrine has made a huge difference to me, started to work within a month which I believe is quicker than hydroxychloroquine.

For 3 years I took 50mg/day (half a tablet) and this year it's been upped to half one day, whole tablet the next.

No real side-effects so far. The tablets are fluorescent yellow which gets deposited in the skin, so I'm transforming to a golden shade of tan from my usual paler than pale self!

Also my IBS seems worse at the moment, only just made the connection that it's coinciding with the 100mg days. So might ask about reducing slightly or changing the way/time I take it.

Mepacrine is unlicensed in UK for ctd & I think GPs cannot prescribe it without your consultant's say so. It's compounded by Boots & I've had no problem getting it.

I wasn't given any info regarding it, worth googling. In US it's called quinacrine or atabrine.

Be interested to hear what your rheumatologist thinks about it. x

[SHEILWEIL in reply to Happykins]

Molly,

I have had mixed connective tissue and lupus for about 20 yrs. I was feeling much better when taking hydro. until a few years up until I started experiencing swelling of my tongue after eating dinner. It took many visits to Th ER and Benadryl before I realized that I also took my hydroquoriquin w/dinner. It was better as soon as I stopped it.

My Rhumy said that he never in 50 years saw such a thing.

Best of luck😉

[mollyaimee]

That sounds like an effective treatment! My rheumatologist said that unfortunately hydroxychloroquine is usually the first treatment they use as it causes the mildest or least side effects and that other treatments were stronger so I’m not sure what he’ll try me on next! X

[Sarah74 in reply to mollyaimee]

Hello there

There’s no problem with upping your steroid dose for short periods of time.. in particular during illness. I’ve been given the green light to do this myself if I get an infection.. should help you feel a bit better.

I take myfotic acid.. which is quite a toxic drug but that’s as I have renal damage. They started me in 3 x 200 but over months I’ve managed to wean my way to 1 not 3.

Good luck x