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Sjogrens Topics => Living With Sjogren's => Topic started by: jonnell on May 04, 2009, 04:16:11 AM

Title: mom needs advice on Plaquinil
Post by: jonnell on May 04, 2009, 04:16:11 AM
Ok here it goes Jenna has been on Plaquinil for 2 weeks.   She is currently vomitting, diaharrea, pain in stomach and very gasey.  Rick and I did a lot of research last night and found out these are all side effects on the drug.  She also has a UTI .   She has missed 2 days of school already because with the swine flu thing going on if the got sick in school there would be a panic.  My question to all of you is the benefits of Plaquinil worth the side effects should I try to endure these symptoms or is it worth taking her off the medication.  She hasnt had it all weekend because she is on antibiotics for the UTI and I dont want to mix them.   Thank you all for your help and support,   Hugs and Kisses Jonnell and Jenna                                           PS  I know I should talk to Rhumy but doctors are so for medicine and they dont like to hear about the side effects
Title: Re: mom needs advice on Plaquinil
Post by: Babs659 on May 04, 2009, 04:26:54 AM
Hi.  It could also be the antibiotics causing those side effects.  Are you giving her the Plaquenil after she eats?  It should not be given on an empty stomach.  I don't seem to have any side effects and I'm on 200mg twice a day.  It could take a few months before she seems better, but I understand it's worth the wait.  Good luck!
Title: Re: mom needs advice on Plaquinil
Post by: HL in NY on May 04, 2009, 04:29:21 AM
Hey Jonnell & Jenna,

I don't have any real advice, but I've got support. I've just been on Plaquenil for a week. We could be 'Plaq buddies'. :D So far, I've just had some stomach pain as a side effect, but I did take the advice a lot of the folks here recommend and am only taking 1/2 my dose for a few weeks, and I take it in the evening with dinner.

I've seen that the bad side effects sometimes take a few weeks to show up, but "knock on wood" I'm okay so far.

Hugs!

Heather
Title: Re: mom needs advice on Plaquinil
Post by: jonnell on May 04, 2009, 04:37:15 AM
Heather,  That is a good idea I might try cutting her dose in half and see if that helps.  Ive read some nasty side effects for plaquinil in children.  This is a learning experience if nothing else.  Thank you.    Hugs and Kisses   Jonnell and Jenna
Title: Re: mom needs advice on Plaquinil
Post by: Linda196 on May 04, 2009, 04:44:38 AM
Jonnell, if I understand correctly, the abdominal symptoms started before Jenna started taking the antibiotic? If that's so, it probably is the Plaq, as those are very common symptoms. Did you start with partial doses (difficult to do, I know, when your full dose is probably half a pill!), always give with food and split the dose if necessary? I remember you were having trouble getting her to take it in the beginning, but can't remember exactly how you were giving it, sorry.

The good news is, these symptoms usually relax once someone has been taking the drug for a while. Bad news is, a little kid doesn't have the reserve of an adult, and vomiting and diarrhea take their toll very quickly.

Maybe you could try giving her a few days after the antibiotic treatment is done (right now they could be caused by the antibiotic, because the side effects of Plaq don't usually last more than a dew days after the last dose), before starting the Plaq up again, to see if she gets over the symptoms, and if they start again with the drug. Meanwhile, keep her fluids up, and maybe give her one of the electrolyte balancing formulas designed for children...pedialyte is one that comes to mind, and it can be mixed with juice to make it more appealing (and cheaper!)
Title: Re: mom needs advice on Plaquinil
Post by: jonnell on May 04, 2009, 05:52:05 AM
Linda,  Thank you very much for the advice.  Her symptoms did start before the antibiotics that is what sent us to the er they ran some tests and found a UTI but I dont think UTIs cause diaharrea or stomach pains.   I was crushing half a pill in her chocolate milk with choc syrup.  Im going to wait till her antibiotics are over give her a week and then start again like you said.  I hate to give up on the plaquinil all together.  Hugs and Kisses  Jonnell and Jenna
Title: Re: mom needs advice on Plaquinil
Post by: missyb on May 04, 2009, 07:37:13 AM
oh this poor little thing  :'( it's terrible all this nonsense she has to have,  I'ts hard that she has so many things going on at once, makes it's hard to tell,. I probably would call the Dr and just fyi them what is going on, and that I'm cutting the meds in half.
Title: Re: mom needs advice on Plaquinil
Post by: jonnell on May 04, 2009, 12:35:31 PM
Thanks for the support missy it is hard.     Hugs and Kisses Jonnell and Jenna
Title: Re: mom needs advice on Plaquinil
Post by: TerriJ on May 04, 2009, 01:27:13 PM
Oh, poor thing!  I took Plaquenil for about 3 wks.  I started slow with 1/2 pill a day and worked up to 1 pill.  After taking 1 pill for over a week I woke up in the middle of the night with terrible stomach pain.  It also affected my appetite.  I got better after going off of it.  It is really too bad that it takes so long for it to show if it will be affective or not.  If I knew it was going to make improvements I would have more incentive to try.  I am going to give it another go at some point I think, but I'm kind of reluctant.  It is nice to hear that the symptoms can abate after taking it for a while.  I hope Jenna might be able to try it again at some point.

Terri

Title: Re: mom needs advice on Plaquinil
Post by: jonnell on May 04, 2009, 03:34:44 PM
Terri,  Yea its hard to stay with it when your little girl is rolling on the floor with stomach pains and vomitting.  But Im going to try again after she gets over her urinary tract infection.  Jenna has such a hard time in the summer it is very hot and humid in Jersey and she is just miserable in the heat,  so I hope the medicine will help her.  Hugs and kisses   Jonnell and Jenna
Title: Re: mom needs advice on Plaquinil
Post by: KYMOM on May 04, 2009, 06:03:26 PM
Jonnell, I have not advice on the plaquenil.  I just wanted to tell you that I was thinking of you and sending Jenna good thoughts and a big hug.  I am so sorry that the two of you have to go through all of this.  I know how hard it is to see your child suffer and know that there is nothing you can do to make it go away.  Roxanne
Title: Re: mom needs advice on Plaquinil
Post by: JannaLee on May 04, 2009, 06:42:18 PM
This is a real tough question.

I think you should consider long and hard before making a decision to stop Plaquenil and only after talking it over with her Rheumatologist.

But it's not going to hurt anything to stop it now till she's feeling better.

Love, hugs, and smooches to Jenna and Jonnell!
Title: Re: mom needs advice on Plaquinil
Post by: lynnmarie219 on May 04, 2009, 06:57:36 PM
Sending lots of hugs to you and Jenna...I'm so sorry that she has to go through this at such a young age!