early morning waking with severe stomach cramps

[mconit6]

Basic facts:- male, age 65, fit and only other ailment is CAD which has been kept under control without surgery.

I was positively diagnosed with Sjogrens in 1996 having had the symptoms for some 4 years proir to diagnosis. Since 1996 my flare-ups have become longer lasting and more severe. At the moment my titre is 1:5120 homegenous pattern; positive anti-ro and anti-la. Bloods look good except for slightly above normal raised Ck and CPK which the specialists (the London Lupus Centre) have put down to my exercise regime, even though I haven't excerised for over 6 weeks. The flare-ups tend to follow my annual monthly holidays to the Far East where I conbine surfing with culture tours. First sign of imminent flare up is pain in my thumb as though I had hit it with a hammer, followed later (about 3 weeks) with general malaise and finally dry and scratchy eyes. Normally a flare up lasts for about 3 months and I go through this twice a year, the next time is usually September. This current flare up has been the worst and I have been put on Plaquenil 200mg daily. Since starting this I have woken up at about 4am eacm morning with stomach cramps and nausea but never any sickness. At the moment I have found that the only way to relieve the pain is to apply a heated blanket to my stomach. By about 11am the pain passes and i am 100% OK for the rest of the day. Strange.
Other than red eyes I also have Lupus nails on three fingers, definitely not fungal!! Has anyone else suffered from stomach pains specifically after recently being put on plaquenil? My other meds which I have taken for at least 12 years without any side effects are Simvastatin 40mg,Candesartan 4mg and 75mg enteric coated aspirin.
Is there anybody out there than can shed some light on what is going on?
Michael 

[JannaLee]

Ugh Michael,

Your plaquenil story is quite common.

The good news is that most everyone who goes through this eventually stops having the nausea when their body adjusts to the medicine.

Couple suggestions I learned from this fine forum:

If you want you can lower the dose and then slowly build it up.  That usually will help you to adjust without the stomach problems.

Always take it with a bit of food.

Split the dose and take twice a day instead of one large dose.

Finally, if it gets unbearable, call your doc and ask for a nausea medication like Phenergan to help with this.

On a side note, your trips abroad sound way cool!  I sure hope you can get your Sjogren's to stop punishing you afterward!

Welcome to the group!
Janna

[Scottietottie]

Hi Michael 

Welcome to Sjogren's world! 

Janna's given you good advice about the Plaquenil. Be patient with it too. It can take literally several months before you really notice a difference. (The cramping should stop way before that!!)

Take care - Scottie 

[Linda196]

Hello and welcome, Michael.

As you've already seen, the gastric problems are common with Plaquenil, and the suggestions for starting out on it are very good, and help most people. The other good news is that the problems tend to lessen over time and eventually people seem to tolerate Plaquenil very well.

I'm in awe of your expeditions, I'm lucky if I can manage a sedentary week away in a hotel with hot and cold running room service. It's a very good thing that I enjoy a short stroll on the beach in the evening, because it costs me dearly! An exercise routine sounds wonderful, too, and I hope to get back to one, someday!

[irish]

Micheal, Welcome to Sjogrens World. I am amazed that you can even have the energy to do this trip. However, has anyone ever told you that sjoggies don't do well when exposed to the sun. The sun will throw many people into a flare. Most of us need to keep covered up when in the sun and use sun lotion with high spf liberally on our exposed areas.

If I went to the beach and just sat for 1/2 hour I think they would have to dig a hole 6 foot deep and bury me cause the next day I would be sick as heck.

Good luck with your Plaquenil and hang in there as everyone reacts differently and sometimes it takes longer that you expected for it to kick in. Irish

[harrigan]

Hi Michael - I started plaquenil 4 weeks ago and am still having stomach problems from it - cramps and urgent need for the loo.   I've also had some nausea and dizziness but am gritting my teeth to get through side effects and hang on a few months for the benefits to kick in.  Hope this works for you too.  Keep posting, Ailsa

[ErinG]

Hi Michael,

I have been on Plaquenil for about a month now as well, and I'm still experiencing stomach issues.  My main complaint is the gas I get around bedtime.  I always take my doses with a meal but I still get gas and cramping every night.  It has seemed to get better over the last week, but with all the over-eating I did for the Easter holiday the last 2 nights have been rough. 

I hope you find relief soon!

[mconit6]

Thanks to all of your inputs re my problems with plaquenil. I will simply stick with it and see what happens after 3 months. I had my normal monthly tests results  come through last week. They still show a 1:5120 titre homogeneous pattern with positive ANTI-Ro and ANTI-La. All blood work fine except for mildly elevated (above normal) CK and CPK levels, same levels as I have for the past 11 years. Maybe those levels are normal for me. As to what might spark the flare-ups; I believe you are correct, it's going out in the hotest time of the day on my surfboard. From now onwards I will smother myself in factor 20 SPF cream!
Thanks to all.

Michael

[irish]

Michael, I just wanted to let you know that using sun screen doesn't really help all that much in regards to the suns affect on us sjoggies. I read an article that explained how the sun on our skin actually was able to cause changes in our blood. Seems like the rays must go deep despite the sun screen.

My dermatopathologist told me to use sun screen even when I am inside to protect my skin plus prevent AI issues. When I get in the hot sun even with my SPF 50 lotion I get a burning, crawling feeling under my skin that is really unsettling and makes me feel ill and stressed out. My immunologist told me what the medical term is for this but I forgot. I will have to ask him the next time I see him. Good luck. Irish

[TerriJ]

Michael,

I tried Plaquenil for about 3 wks. and ended up stopping because of stomach pain.  I really want to give it another go though.  I didn't have too much nausea.  Mostly just pain in my stomach and loss of appetite.  The pain in my stomach was so bad it would wake me up in the night. I already have a sensitive stomach, but I'm desperate to find something to help with the SJS.  I hope you can stick with the Plaquenil.

Your travels sound exciting.  I agree it's amazing you have the energy to do a trip like that let alone surf!!!  That is marvelous!  As far as the sun goes, I've gotten to the point where being in hot sun for too long makes me down right ill. 

Best regards,
Terri