[DnA]

Hi

Just wondering if anyone else had problems with loss of appetite and weight loss while on plaquenil.

I had my dose increased to 400mg a day about three weeks ago, and since then I have no appetite whatsoever. Weight is falling off me at a rather alarming rate - at least half a stone a week. I know that I should be eating, but was shocked when I worked out that I'm struggling to take in more than about 500 calories a day. If I'm not hungry I don't bother cooking cos I know I won't eat it, and if someone else does the cooking I still only manage a few mouthfuls. If I manage to eat anymore I seem to get chronic diarrohea.

Anyone else had similar problems, or advise on how to eat when not hungry?

Thanks

Sammy

 

[cath]

HI Sammy,

I'm sorry you are feeling unwell. Yes, your weight loss is quite alarming. Have you seen your doctor about it?

I never had this problem with plaquenil, so can't offer advice there, but I do think you should ask your rheumy about it. It would be a real shame if you had to stop it, but you can't lose hald a stone every week for too long either.

One way to get maximum calories for minimum effort is to drink them - thick shakes and smoothies made with full fat yoghurt, honey, full fat milk , icecream and fruit, even eggs (if you like that!!) whatever you think you might fancy.

Also try eating small amounts frequently for example 3-4 hourly 6-8 times a day.

I wonder if it is worth asking your doctor about trying something like immoduim to settle your digestive tract a little. Most of these side effects diminish with time, so hopefully this is a tempoary hikkup for you and lot a long term one.

Hope you feel better soon,

X C X

 

[sharon1953]

half a stone??

How much is half a stone in lbs?

 

[Clare.T]

Plaquenil can cause loss of appetite and I agree that losing weight at this rate and suffering diarrhea is not healthy and might mean you become ill nourished and dehydrated. I suggest lowering the dose, going back to the original, until your tum has settled down then very gradually increasing it to give your body the maximum chance to adjust to the higher dose. If you can't take more, then Quinacrine UK Mepacrine could be the answer to getting greater antimalarial pow. In fact it can be more effective than Plaquenil alone
As you know people should ideally consult their doctors before making any changes to their meds. If you can't contact him to get his consent you could send him a letter explaining what you propose to do. It isn't likely that there is any reason why you shouldn't.

Good luck with it !

Clare

Sharon - Half a stone is 7 lbs.

 

[annada]

Hi Sammy

Just my two cents worth, ( although the dollar exchange might = to 1/2 that by now)

I too have a weight loss problem, am takeing Plaquinil 400 x 2 daily. It sure does a number on my stomach too. After a bout with the stomach flu last week, I probably weigh 96 or 97 lbs. at the moment, considering I am 5'5" tall and very thin boned, well, you get the picture.

Clare has some very interesting information,,THANKS CLARE !!!!!
MY Rhuemy, ( which is another post ) says he doesn't think it's available in the U.S. but I'm pretty sure someone from florida was taking it. I could be mistaken tho.

Get well soon Sammy and thank you again Clare.

annada

 

[Lily]

Hi Sammy,

Sorry you are suffering so, it's no good going on like this. I would be contacting the Rheumy and explaining the situation, they will probably suggest a slower titrate upwards as Clare has mentioned, but it's best to check. I hope that you body will get used to this increased dose given time, usually that is the case but I wouldn't let it go on too long :hug:

Hi Annada,

I guess you meant your dosage was 200mg twice a day, not 400mg twice a day

love
Lily

 

[annada]

oops

:lol: well just call me crazy, yeah I did mean 200mg twice a day total 400mg. Gee, it's rough getting it together anymore and if I did I'd forget where I put it!!!!!!!!

Hi Sammy, don't get me too wrong, it wouldn't be any wonder if I was skinny would it!

Thanks Lily and hugs to you both.

annada

 

[DnA]

Thanks for all the advice - brilliant as usual.

Unfortunately I'm living away from home at the moment so don't have access to my regular docs! I do have an appointment on 15th August when I will discuss it.

I find massive weight loss quite scary as I used to be anorexic and did go down to 7 stone about 15 years ago - I'm 5' 6'' and large boned so not good! As I've dropped quite significantly below my ideal weight, I'll pop into a drop-in centre tomorrow to discuss it. I agree that weight loss at this rate (now over 2 stone) can't be healthy or be doing my health any good. I have felt dizzy quite alot over the last week.

I've gone back down to 200mg a day, like Claire suggested and when my stomach feels better I'll increase the dosage slowly and if the weight loss is still an issue I'll have to try to get the meds changed.


Thanks again for all your support - what would we do without this site! Non-lupies just don't understand!

Sammy

 

[Clare.T]

I hope your tum settles down soon! You shouldn't get any flack from your doctor as lowering the dose is just what any sensible well informed person would do in these circumstances. "These circumstances" being the very harmful side effects and that we are talking about Plaquenil.
I am not surprised you feel dizzy and such! You can start building up your strength with some of the food items Cath suggests, whatever goes down easiest not forgetting good protein but possibly not going overboard on the animal fats. I suggest having a very little, very often.

I suggest that you discuss with your doctor how to contact him for advice just in case there are times when you have urgent need. You should have a contact number to his secretary even if you were at home.

Feel better soon!
Clare

 

[Flibble63]

I get raging stomach problems whenever I go over 200mg of Plaquinel a day even with a slow titration up I can't get over 200 mgs. My Rheumy says that is Ok because even a dose of 200 mgs is helpful. I remain fairly stable on that dose and have for years. Good Luck.
Laura

 

[Surferboy]

Hmmmmm! Now Plaquenil was the drug I would have chosen (had my consultant prescribed me anything )

But I have severe weight issues to begin with. I'm a male, 6:10, 9 stones.

I struggle at the best of time to keep my weight at 9 stones. I eat loads but think I just have a very high metabolism!

I'm now worried that if I begin to take Plaquinel my weight problems will get worse. I really cannot afford to loose any more weight :worried:

 

[greenhaggis]

((((Sammy))))

This is one drug so far that has not upset my tummy - I wish you luck in finding the answer and hope that you stop losing that dramatic amount of weight.

Since taking plaquenil (started Dec 2007), it has been easier to gain weight - it seems my metabolism has slowed down, now I have to eat less!

Prior to that I either stayed the same weight or lost it dramactically and was still eating loads! My husband is 4 stone heavier and most days my intake would be greater than his! :lol:

Saying all this I'm not yet in the overweight bracket.

Lesley

 

[Lily]

Hi Surferboy,

I lost an enormous amount of weight and very quickly because of out of control Lupus (that's not uncommon). Once it was stabilised with Plaquenil that weight came back on and I was feeling a lot better too So it's not all bad news, each of us is different.

love
Lily

 

[Surferboy]

Phew! I weighed myself last night and have actually dropped below the 9st mark So Lily your news is exactly what I needed

 

[shorty67]

weight loss

From one lupy to another, I've been on the same meds since 5-05-08 and lost about 20lbs, its has slow down a bit. I talked to my dr. and it's one of the main side effects.

 

[Lily]

Hi Shorty,

Weight loss is listed as a rare side effect, not a main one, trust you to be rare :lol:

love
Lily

 

[onetay]

Hi,
I was on plaq. and your body has to adjust to it and that can take some time. A side effect is diarrohea. Try eating lite things several times a day, even if all you get are a few bites. It is nice if you like cheesey things(it's a joke but maybe not a good one). I would try fixing a full meal and over the day try a few bites throughout the day. I do know the medicine works better and is not so hard on your body if a little food is taken with it(for me it worked that way). If you are eating very little than what you do eat has to count so eat healthy so to speak. On the possitive side if this posting gets out there are a lot of women that are going to want to know what you are on to loose weight because they can't loose an ounce.lol. Hang in there in time it will get level out if it don't then call your doctor that medicine might not be right for you.
Tammy

 

[Surferboy]

I can almost agree with the weight loss.

When I was on the plaq I lost almost 1/2 stone.

But when I came off it I have put on a bit of weight.

I didn't have any diarrohea or stomach problems though.

 

[candice454]

weight loss

You talk about quick weight loss. But how much and how soon did you get these affects? I just got on the meds myself because the lupus is attacking my body again. And causing skin spots and red line on forehead. and i am getting an upset stomach still drinking milk or eating something and right after i have to go to the bathroom

 

[Jessica1]

Hi Candice and :welcome: to the forum,
This is an old thread so I will close it now. If you start a new thread you're likely to get a better response as some of the members from this thread haven't been here in a while and other members will share their experiences in response to your question.
Best wishes,