Just got home from the ER

[deeindiana]

After being sick for five days I finally couldn't stand it anymore and went to the ER. It is sort of like flu symptoms but without a fever: waves of faintness (that darkness you get around the edge of your vision) and anxiety, stomach pain, yellowish diarrhea, headache, pain behind my eyes, my arms & legs feel weak. I thought perhaps I had the flu, or low blood sugar, or was anemic -- but my real fear was that it was the plaquenil. I've been on a dose of 200mg for 3 1/2 weeks and am just starting to notice a slight improvement in my mouth pain

The ER doc checked me over: pulse & blood pressure good, EKG good, blood work good.
The only thing he could guess causing my illness is the plaquenil. He looked up the drug and said that my symptoms match all the possible side effects. I'm supposed to stop taking it and call my Rheumy on Monday.  He wasn't sure how long it would take the medication to get out of my system to see if that helped me feel better.

I can't believe this!

What will the rheumy do? (he is 4 hours away, so it will just be a phone conversation)  Is there a "test" to see if the plaquenil is the culprit? Could the ER doctor be wrong? (he freely admitted that he wasn't familiar with plaquenil but couldn't find anything else wrong with me) Would a smaller dose help?
What if I have to stop taking it?! Is there another drug that can help or am I doomed?!

I just want to cry!! It seemed like I was just starting to see some results!
Deb

[jenji]

I heard there is one other medication, but I don't know what its called. There are also corticosteroids, but I don't know anything about it yet. I may have to go off Plaquenil also, so I am just starting to investigate. I share your concern - I hope there is another med out there.

[Katybarstool]

Deb

I'm so sorry this is happening to you. We all lay so much store by Plaquenil, that to find it doesn't suit is like losing hope. I pray that you will feel better soon.

Kathyx

[inga]

Please do not be so concerned about not taking plaquenil.  If you have neuropathy, plaquenil is an itch inducer.  If you are negative on ANA, I would seriously pursue a skin biopsy for neuropathy, because what you describe is exactly what dysatuonomia feels like....then again, there isn't much they do for it and Plaquenil isn't for neuropathy pain.  Depending on the CAUSE of your Sjogren's or Sicca Syndrome, Plaquenil may not even help at all.

There are other drugs if you have inflammation....lots of them.

I hope you feel better soon.  Usually IV fluids help a lot.

[Joe S.]

There are alternatives that you can take.

[deeindiana]

Joe & inga: There ARE alternatives? Thank goodness!  I googled for substitutes for plaquenil but nothing came up.
Does anyone know how long it takes the plaquenil to get out of your system? I've already missed several days of work and would like to shake this soon. I'm tired of being sick...
Thanks for the info and good wishes, everyone.
Deb

[sewandsew]

I had the same symptoms after 4 weeks of plaquenil.  The rheumy said to stop taking it.  No problem quitting.  The new rheumy has not suggested a replacement yet.

[wally]

The same thing happened to me but it was after taking methotrexate. I still do not know for sure if it was the drug or not. I feel your pain. Hang in there. Wally

[Joe S.]

Magnesium, Flaxseed, Inositol, Goldenseal, B12, D3, Alpha Lipoic Acid, Acetyl L Carnitine, Reiki, Reflexology, Meditation, Carrot Juice, Tonations

[Cricket]

Joe
I don't want to sound to stupid, but could you breakdown all the things in  your last post and tell me what they are good for.  The Reiki, what is this and how do you do it, what is it good for?  I know I am asking alot but would greatly appreciate it.      Cricket

[anita]

Why can't it just be a virus?  Most that posted here having problems with plaquenil had side-effects right away...not 3 weeks later.

[deeindiana]

The ER doctor didn't think it was a virus because I haven't had any fever.

I googled the side effects of salagen (which I've been taking 4 weeks) and noticed that it also has side effects similar to what I've been experiencing: dizziness, weakness, stomach pain, headaches, etc.  Man...how am I supposed to know what is causing this? I don't want to stop taking everything. For the first time in months I finally have some saliva and snot!

And all this has caused my panic attacks and agoraphobia to flair up again, despite being on Zoloft (or else my symptoms now include something that "feels" like panic). A rush of fear wakes me in the morning and I battle it all day too.  egads...I'm a mess physically, mentally and emotionally. I wish I didn't live alone... 

At this point I don't know if anyone is still reading this thread, but I must confess something humiliating. It actually felt good to be in the ER. I hate/distrust doctors and consider hospitals a scary place. But I have been feeling so sick and scared... My nurse was kind, and it felt good to be helped onto a bed and covered with a warmed blanket. It felt good to have experts checking me out instead of being home alone with a computer trying to self-diagnose. It felt good when the nausea medication took away the stomach ache I've had for five days. And it felt so darn good to lay there knowing that if I pushed the call-button that someone would come. How pathetic is that...? 

I am sobbing so hard I can hardly see the keyboard. I was terrified to start all this new medication but I gathered my courage and shoved them into my mouth -- and it actually seemed to be starting to help my SS symptoms. Then out of the blue I get so sick I can barely function and the ER doctor is only guessing that it is caused by the new medication.

Sigh... Okay. Time to buck up again. Time to wipe away the tears and keep trying. Time to count each little blessing (such as, for a change, I actually have tears to wipe and snot to blow) and remind myself that there are people who love me, even if they aren't in the next room hooked to a call-button. But God, it's hard.

I certainly couldn't admit this to anyone in person. If anyone is still reading this, thanks for listening.
Deb

[anita]

Deb

Sometimes it's nice to just feel like we are being taken care of, so i understand your feelings.

I would only stop one of the meds at a time (which ever one is helping the least) and see if your side-effects subside. If they do, then it was likely that medicine.  if not, then it might be the other.  If you STILL have problems, then it was something else.

I would still touch base with your GP for his advise.

I wouldn't think that all stomach bugs have to include fever.  I hope what ever it is, that it resolves soon. 

Take care,
Anita

[valene2009]

hey Deb
I was reading your posts and i relate. i do hope you get to feeling better. i am so so sorry..
i am glad you went to the ER. that does suck about plaquenil..i too have just started it about 3 weeks
ago but have only moved up to 200mg... i have been having dry eye flare ups.. not sure why..

anyway,  i went to the ER this summer when the heatwaves struck and i was severely dehydrated and i too
felt "GOOD " being inthe hospital.  doctors and nurses taking care of me.. i felt "safe"..

it is scary--and sometimes the more we get on the computer the more confused we get.. you said you
go to a Rhemy 4 hours away?  My eye specialist is over 2 hours away .. and of course i have to be driven
there..it is so frustrating.. feel free to message me ...
i hope you get to feeling better soon.... From what i have heard you can just stop taking plaquenil.. i would
assume it would leave your system fairly quickly

[Rayven]

Our immune systems are already haywire.  To me, not having a "typical" immune response to something (in your case, a virus) would not be noteworthy enough to rule something out if it was going on in my body.  I've had plenty of episodes of illness where I didn't spike a fever, and other instances where I have.

And if my doctor says he doesn't know about a drug and has to look it up in a book just like the rest of us, I would be extremely cautious in following the advice to alter the dose.  You know you've had difficulty with fears about this drug.  We all know it here too, and that's OK.

But I would caution you not to let this fear ultimately undo the good you could be doing for yourself.

Yes, there are other treatments, as people have posted.  In my opinion, you need to come to terms with your fear of this medicine so you can help yourself through this.  It MAY be the plaquenil.  Obviously others have had tolerance issues.  But you're prone to becoming a self-fulfilling prophecy this time and a truly objective opinion from someone who DOES know what the drug is would be much better for your health and sanity, in my opinion.  You truly need to explore this fear either yourself, or with a counsellor or other advisor you can trust.

There is no shame in feeling relief and comfort that others are available to take care of you.  Many of us, I'm certain, wish for just one day of being able to lay there with people who care surrounding us and available while we have one job, to rest so we can heal.

Be strong, Deb.  Take a breath.  Stop googling  Call your rheumatologist.  Seek some peace.  Pet a cat.  Whatever it is that brings a balm to your heart and mind.  We're here for you too.  B R E A T H E.