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Discussion Starter · #1 ·
These kinds of medications look likely to be next the next step for me as Plaquenil is not a benefit - have been worse using it.

What I would like to know is do they replace Plaquenil completely or are they taken alongside?

OR do you take steriod sparing meds with another type of anti-malarial!

Thanks!

Lesley
 

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Hi Lesley :)

They are taken in addition to Plaquenil as they act in a different manner and give additional benefits. Nowadays multi-therapy is very common.

Do you think that Quinicrine (Mepacrine) would be an alternative to Plaquenil for you?

love
Lily
 

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Discussion Starter · #3 ·
Hi Lily,

Mepacrine may be a possibility (couldnt remember the name -thanks Lily)!

I see my Immuologist on the 7th July so will ask him to re-assess my medications - in the meantime have just been prescribed with Pred again.

Since last finished with Pred (7wks ago) I have been suffering with many symptons with no let up. In denial again and trying to cope like people without Lupus. I'm off on holiday next week (for a week) and had to get real with how I was feeling an admit to myself I would not be going away unless I started on the Pred again.

Waiting for results of Porphyrin test (photosensitivity) - there are lots of mediactions that are not usuable if test positive with this.

Awaiting results also for biopsies taken during a gastroscopy for celiacs, b12, iron etc!

Lesley
 

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Hi Lesley,

Yes, when plaquenil is not sufficient the other meds are added alongside and it is the finely tuned balance of those meds that has to be worked out for each of us individually. Just as the disease is complex, so it getting the right combinaton of meds for some people.

If you are having to go back to pred so often then it would probably be most beneficial to try something else in your little cocktail. You'll rattle a little more but you get used to that :rotfl: It's better than rusting!

hugs to you, sorry things are so down for you for the moment,
:hug:
Katharine
 

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Hi Lesley

Im not sure how long you were on Plaquenil but it took a good 10 months for myself to see any improvement.

Once I had reached the 'benefit ceiling' that Plaquenil gave me I asked to be put on Mepacrine ( St Thomas Hospital in London follow for some a Mepacrine and Plaquenil regeime and I was recommended to go on it with Plaquenili because of the additional benefits they told me they had found in patients they treated there.)

The good thing about Mepacrine, unilke Plaquenil it takes only a few weeks for you to see the maxium benefits , so you know very quickly if it is working or not.

Of course the benefits may take longer should you be on a very low dose with a slow build up to a higher dose.

At the moment I am on 400mg Plaquenil per day, and Mepacrine for my first month is 100mg per day.
Apart from having a bad few days lupus wise whilst on the new medication I have experienced vast improvements which Im so pleased about.

Good Luck

Nicky
 

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((((((Lesley)))))))

Sorry to hear you are feeling so yucky right now. I really hope things improve soon and you start to feel more like your old self.

Be kind to yourself.

Sending you gentle hugs, :hugbetter:

Pam xxx
 
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