Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: SS Lady on March 28, 2016, 09:20:25 PM

Title: Plaquenil questions
Post by: SS Lady on March 28, 2016, 09:20:25 PM
Hi Folks,
I have been reading, as many do, before a definite dx. I have M.S., Sjogren's,
Hypothyroid, and SICCA. I started 200 mg Plaquenil about 12 days ago. As soon as I take it within 2 to 4 hours I want to sleep.  I am nodding off while reading, or watching T.V., etc. In 5 minutes I jump up and walk to stay awake. Now I take it later in the evening at 8 pm and my L.D.N at 10 pm.  Does anyone else get an almost Narcolepsy (example how it feels) effect while starting Plaquenil? Thank you in advance, SS Lady
Title: Re: Plaquenil questions
Post by: Inflagirl on March 29, 2016, 07:24:30 AM
Hi there

I don't remember getting these symptoms while on Plaquenil, only a slight headache which wore off eventually
Title: Re: Plaquenil questions
Post by: cccourt1942 on March 29, 2016, 07:33:39 AM
I don't either SS.   We are all individual.  There have been some strange, yet real, reactions of members of this forum alone.  The only thing I would question is why were you given this drug without a SjS dx.  There are two camps in the field of rheumatology regarding this treatment.  But whichever the thought, it is for SjS.  (for as much as I know...I am JUST like you----just a person managing my symptoms!!)

Hope you adjust to it.  My very first thought would be to decrease it to once a day for a week or so.  Let your body adjust.  THEN try the 2nd dosage per day. 

Welcome here...and hope you have a great day.
c3
Title: Re: Plaquenil questions
Post by: kmhcpt on March 29, 2016, 05:52:41 PM
I eased into the plaquenil.  My Rheumy suggested starting on 200 mg for one week.   Then increasing it to 400mg.  You may want to try that for a week.   Worked well for me.   I had no issues at all with feeling tired from taking it.   
Title: Re: Plaquenil questions
Post by: Scottietottie on March 29, 2016, 06:01:24 PM
Hi  :)

I eased into even more. My rheumy said to start with half a tablet evry other day and to work up to the full dose over the course of a month.

Always take with or after food!

Take care - Scottie  :)
Title: Re: Plaquenil questions
Post by: Kathy57 on March 29, 2016, 09:30:16 PM
Plaquinil never made me sleepy but in the beginning, it gave me GI upset.  I had to learn to tolerate it.  Now, I just make sure that I take it with food and I'm okay.

It took a while for it to kick in but I can definitely say that it has made an improvement in my life.

Hang in there.

Kathy
Title: Re: Plaquenil questions
Post by: Sharon on March 30, 2016, 11:16:16 AM
It made me fall asleep almost immediately, so I took it at night.
I couldn't continue taking it after a week because it caused me severe muscle pain,
but even after stopping it, it seems to have actually cured my insomnia!   ???
Title: Re: Plaquenil questions
Post by: SS Lady on March 30, 2016, 06:36:36 PM
Thank you all for your replies. Let me clarify some misconceptions. I was diagnosed with Sjogren's many, many, months ago and given the script for Plaquenil 200 mg, one pill a day. My Rheumy said run it by your Neurologist for the Multiple Sclerosis.  She said I can take it, but call the compounding Pharmacist to make sure it goes well with the Low Dose Naltrexone (LDN). He said, it's okay together. This took time for me to get started on it. My Rheumy started me *only 14 days ago on 200 mg, 1 a day* and after about 10 days on it I wanted to sleep within 2 to 4 hours later. It really helps with the joint pains already and the swelling. I see the Rheumy at the end of next month to discuss how I'm feeling. He has had me on 5 mg, then 2 mg of Prednisone for the past year.  I take both 200 Plaquenil and 2 mg of Prednisone to date. I get stabbing head pains also for two years (lymph nodes.)      Does anyone get head pains???? I did get a tiny headache when I first stated Plaquenil, but that was not the same and it's gone. I'm so confused about the sleepy issue. My doctor is out of the country right now so I have to wait for his suggestions end of April.
Title: Re: Plaquenil questions
Post by: cccourt1942 on March 31, 2016, 07:48:33 AM
no.
c3
Title: Re: Plaquenil questions
Post by: SunshineDaydream on March 31, 2016, 07:57:03 AM
Plaquenil did not cause me to get tired after I took it. On the contrary, it got rid of fatigue and I was able to stay awake more. I also did not get headaches or head pain after taking Plaquenil.

I couldn't tell from your post whether you reduced prednisone before starting Plaquenil or at the same time. Sometimes people experience flare or side effects as they taper down prednisone dose. Do you take Plaq and pred at the same time / together or at different time of day?
Title: Re: Plaquenil questions
Post by: bloodless on March 31, 2016, 09:36:38 AM
All good and nothing bad from plaquenil. I've taken for 6 years.
Title: Re: Plaquenil questions
Post by: Sjocool on March 31, 2016, 04:57:16 PM
ss lady, I take plaquenil, started out with stomach issues, but it has gotten better. My doctor has increased my dosage to 400 mg. I also get sharp stabbing headaches, also known as ice pick headaches. I asked my Dr about them, because they come on so suddenly and last only about 5-10 seconds. But boy, are they painful. She said it's probably just a spasm.. Do yours last long? How often do you get your stabbing headache?
Title: Re: Plaquenil questions
Post by: SS Lady on March 31, 2016, 05:18:17 PM
Hi SunshineDaydream, I reduced the Prednisone slowly to 2mg. He said try to reduce if you can or go up again. I got down to 1 mg last Dec. 2015 and all was calm, then I had a Multiple Sclerosis Relapse. My Neuro put me on a high 100 mg taper to 5mg (two weeks). Meanwhile the Sjogren's kicked up, she said, it is like a cascade.  One can trigger the other, Rheumy agree. So I managed to get to 5 mg, 4, 3, and then 2 mg over time. So symptoms calm, not the dryness, and joints hurt again. I was tempted to increase the Prednisone, but I had the okay to start the Plaquenil script I was about to try. So I did, and it helps with only two weeks on it. I just get sleepy. I take it at 8 pm and it helps kick in for bedtime and Prednisone in the morning. Thanks for asking. Good thought.