Sjogrens worse in the winter?

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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 1/6/2009 11:30 AM (GMT -7)   
I have to admit that I don't know as much about Sjogrens as I should, but I have noticed that my sjogrens symptoms are a lot worse lately.  My mouth is still pretty dry even with evoxac and my eyes feel like they have sand in them all day long (1st thing in the morning is the worst).  I didn't know if the winter dryness can make sjogrens worse or if this is all part of my flare.  I'm guessing that if my lupus is flaring then my sjogrens could be too. 
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/6/2009 11:58 AM (GMT -7)   
Hi Hippi,

My sjorens was truly out of control in November, first part of December, I was driving my opthomologist crazy because my eyes were so dry and felt as your do, like I had sand in them. I constantly had to have a drink in my hand or a mint or something, because my mouth was so dry. Finally, my rheumy suggested I ask my optho. about restasis, and boy what a relief! It has helped more than any over the counter eye drops or artificial tears. I use the restasis twice a day, first thing in the morning and then right before bed. You might ask your docs about it, might be of some help to you.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Piffle
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/6/2009 3:06 PM (GMT -7)   
Hi
I struggle more in the winter with my sjorgrens then I do other times of the year. But I also feel I flare more in the winter then spring and fall. Summer is just as bad as the winter is for me. I still work and am constantly sucking of sugarless candy, have drinks in hand. I have tried staying away from food that can be drying also such as sodium and caffeine. Try asking about Restasis eye drops and see what your doctor says. I hope you get some relief soon.
Piffle

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/6/2009 3:43 PM (GMT -7)   
Hippi, I feel awful. I didn't realize that you have sjogren's. Your post says that you were diagnosed in '06 but all this time I thought you just had lupus. I don't know the answer to your question, but I'm so sorry you're having so much trouble with it, in addition to having your lupus flare. You're due some relief, girlfriend!
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/6/2009 5:11 PM (GMT -7)   
Thanks everyone. I also have constantly been sucking on hard candy and sipping on something to drink. about 2 years ago I used restasis and it did help some with the dry eyes, but my prescription plan didn't want to pay very much toward it, so I quit using it after a while and switched back to the gel tears. The Evoxac was helping some with my eyes too, but lately not as much. I may have to ask about the restasis again.

Pat, to be honest, I don't think a lot about my Sjogrens unless it gets really bad like it is now. Things were a lot worse with it before I started taking Evoxac. I hope some relief is in sight soon - I think this is one of the worst and longest flares I've had.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/6/2009 6:06 PM (GMT -7)   
Hippi,

Sjogren's can cause joint pain and fatigue as well as a host of other problems. This could certainly explain why you've been feeling so bad. I wonder if your lupus ad sjogren's are flaring at the same time. What a double whammy. I hope you can get to your doctor and get some relief. You've suffered too long.

Love,

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 1/7/2009 10:06 AM (GMT -7)   

PattyLatty and others.  I went look forward what I needed to know without to create another topic.  I was wondering if Sjogren's has the same effect as Lupus, and how can we know which one it is.  Evidently the joint pain and fatigue happens with Sjogren's just like Lupus.  so does plaquenil also work for Sjrogren?  I am not so sick that I can hardly do anything at all,  but I do not know if Plaquenil is working as good as it was in the beginning.  Hopefully I can see the Rheumy on the 23rd, so that I can ask him these questions.  If I can remember it.  my response to doctors is not good, and I never remember all the things that i wish to ask them about.

Thank you for sharing this.

Hester


Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/7/2009 10:51 AM (GMT -7)   
Hi Hester,
 
I understand what you mean about not being able to remember all the questions you wanted to ask the doctor when you go to your appointment. I used to get so mad at myself when I would leave the office and suddenly remember "crud, I forgot to ask_________." So, I bought a journal at the craft store, they have them in the $1 bins, I think they have them at the $1 store too, anyway, now I keep it next to my laptop, then when I read things on here or think of a question I want to ask my doc I write it down. Before I go to the doctors appt I review all my questions and organize which one's I really need to discuss with the doctor and take my journal along with me. Then when I'm at my appt. I make notes of important details the doctor tells me and things of this nature. This way everything is in one location and I can always find it!
 
You might give it a try, it's certainly saved me a lot of grief! turn
Cheers!
Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 1/14/2009 10:19 AM (GMT -7)   

Hey Melissa,

I have been jotting things down, and trying to get them into some kind of order to take them with me when I see the doctor on the 23rd.  Hopefully I will have it completed and in ordered.  and I hope I do not forget to  take them with me when I see the doctor.

Thanks much for your support

Hester


Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 1/16/2009 2:34 PM (GMT -7)   
Hester, I keep a symptoms list on my computer so I just have to do updates as I feel changes. I was unsure about plaquenil working until the Dum-Dum(aka my Rheumy) pulled me off it and imuran and sent me into a huge flare. I will not go off it again. It was horrible. The fatigue, the joint pain and an attack of hives that was worse then I'd ever had. Good luck and God Bless.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/16/2009 7:44 PM (GMT -7)   
Hippi, I am like you I don't much about Sjogrens either. I live in the South (GA) and I have noticed over the last couple of days my lips are extremely dry and so are my hands. I haven't noticed my mouth being dry but I usually have candy or something to drink with me. Like you I am in a flare, I had my labs done a couple of weeks ago and my WBC is lower than usual, I've had a lot of fatigue, muscle and joint pain.

I hope you find some relief soon! Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

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