Hi all
I am 43 and I have just been diagnosed with Sjogrens and my rhym doc has put me on Plaquienil 200mg 2 times a day I have just started this med and I have another one that I take it is Indocin 50 mg I take 2 times a day also I have read some things online but that only scared me
I have just gotten married 5 months ago and I feel that this is alot for him to go through but he said that he is there for what ever happens
I am hoping that some one will be able to help with some of the questions that I have
thank you
Lisa
Hi Bratt and welcome to Sjogrens World!
I'm glad that you decided to introduce yourself to everyone here...as I said...we have a great group of people who are always willing to share information, support, and a few laughs from time to time! :)
Plaquenil (Hydroxychloroquine) is a pretty standard medication that most of us start on. I am on the same dose as you but worked up to it gradually....200mg up to 400 mg a day. It should help to alleviate some of your symptoms and fatigue but may take a while to actually begin to work (up to 6 months), so please be patient with it.
I am not familiar with Indocin, but hopefully others will come along with some information/experience with this medication as well.
Congrats on your new marriage...sounds like your new hubby is a great guy and willing to be there for you no matter what...a keeper for sure... ;).
Read all you can here and if you cant find what you are looking for...just ask...someone will always be around to help out if they are able!
Thanks Lynnmarie I have alot of things that I need to have answered but it seems that u are the only one that has responded I have had people look at what I have wrote but that is ok
I have read that Sjogrens will effect ur brain I was wondering if u have heard of that happening and what does it do to ur brain. I have the eye and the mouth and the swallowing problem along with the pain all over the place and I have noticed that I have had a hard time hearing also and I am tired all the time.
And I will be patient with the meds the doc had told me that it will take a while for it to work so I am prepared to wait it out I have had all these things for along time and I am glad to know what I have but at the same time I am affraid. I have read that dairy is something that is bad?
My feet and hands and knees and back all hurt bad is that due to Sjogrens also
thanks for the help
Lisa
It's very hard to say what is and what isn't sjogrens related...and each of us have varying degrees of these symptoms. There are some people that have very few and/or minor issues going on and others here who have more serious symptoms and issues they are dealing with. We are all different...so please don't feel afraid when you read something as that may or may not happen with you. It's a very individual syndrome.
For me I have some days that aren't very good and I hurt more or need to rest more and then I have other days that are great!There is really no predicting what each day will bring and worrying about it sometimes can add to your stress level which can make things worse for you. And believe me...I know its not easy to "not worry". Just try to learn all you can about sjogrens and how it is affecting your body and take each day as it comes.
There are many people here (myself included) who talk about "brain fog" or forgetting things/getting easily confused. A lot of people with autoimmune issues have this, but again it doesn't mean that you will necessarily get the same thing. Sjogrens affects us all so differently.
Please hang in there and I know more people will see your post and respond. And in the meantime you can use the search feature in the upper right hand corner. Just type in something you want to research and posts related to that will pop up!
I hope this helps some....
Hi Bratt and welcome! Though sorry you had to find us.... I am glad you did. This place is wonderful and you will meet amazing people. you can ask questions, vent, laugh with all of us, it is nice to know others understand. Plaquenil is a great start and does take some time to kick in. It is hard to say if your pains are the SJS or something else. Your Dr will help figure it out. Brain fog is a problem for some, not all... sometimes makes for funny comments and most often frustrating but not often so debilitating I think that you would have huge issues.
Hang out, read a lot, WRITE your questions for the dr's. Stay calm and know you will be okay!
Gayle
Welcome to the group!
Yes Sjogrens affects everyone different. Me I just got the dry mouth (led to teeth cavity problems), dry eyes and odd bloodwork. Oh and I got sinus or throat infections very easy. Others on these boards have had different symptoms. Also other autoimmune diseases like to piggyback with Sjogrens. I have Hashimotos (underactive thyroid). Others here have had reumatoid problems or fibro. Sorry you just don't know with Sjogrens.
While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.
With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.
Hi Lisa,
Sorry for your troubles. As said before, there is some brain fog (forgetfulness - even when talking, like trying to find the right words when conversating), there's another symptom of how it can affect your brain and that's inflammation in the meninges - not caused by bacteria or virus - but inflammation.
Another thing I've recently learned (during my last flare) was that it can cause anxiety attacks and sudden depression. So, chemicals are messed with in regard to the brain.
"Neurologic disease can affect any part of the central nervous system and the peripheral nervous system, which includes the autonomic nervous system, resulting in a wide range of neurological damage and dysfunction." ...excerpt from "The Sjogren's Book".
Hope that helps.
Thanks for all the advice that everyone is giving me. I was hoping that some one could tell me what a flare up is I am not sure and I might have already experienced one I am writing all that everyone has been telling me so that I can take it to the next doc appt, Today I feel like crap my hands hurt and they are tingley and I have pain all over and I have noticed that my throat hurts too and I feel tired alot I dont know if it is the meds that I have started or the Sjogrens
thanks to all
When people refer to a "flare" it usually just means that all of your symptoms seems to act up at the same time and go into high gear, making you feel worse than usual. Flares can just come up for no apparent reason or they can come around when you are running yourself down, are ill with something else, or just experiencing more stress in your life than usual.
Sometimes they are short lived and last for a day or two, and sometimes they go on much longer....again...its never the same for anyone and there is no model to compare it to. I guess you just learn to read your own body and learn what works best for you. When you are experiencing a flare....the best thing to do is to allow your body to rest as much as you can. Some times this is easy...other times not so much. We just have to do the best we can! :D
Hi Lisa! Welcome to the best place you could possibly come for help, answers, fun, and insight your doctors would never provide no matter how good they are! I've been around here just a little while and have learned so much and made a couple of good friends.
I'm a fibro/Sjogren's person. sjogren's is primary per the rheumatologist, but for the last week they are both kicking my b___!!
I'm going to break down and call the rheumy, see if I can get in next week. I haven't always felt this bad, though. A lot of the time I feel pretty chipper - having an understanding partner really makes a huge difference. Glad your hubby is there for you. Give him a gold star from all of us!
Keep coming back - someone is always here. The Forum never closes!
Diane
I read your post again and there was a question in there that I missed the first time around.
Your back pain and your extremity pain.
Sometimes my hands ache really bad and feel really swollen. I am 44, one year older than you, and I have arthritis - so some of your pain could be that too.
For me, diet matters. You will have to try different things to see what makes your body work best. Do a search in the search bar (upper right of this screen) and you will be able to find our stories on diets and how they helped or didn't help each of us. But again, my chemistry isn't your chemistry and visa versa. For me, dairy is bad, real bad, but you may be able to handle it.
Go some time without dairy products and see if that helps.
You do sound anxious, I was too when I first found out about this freak disease. I did a lot of research and got myself really worked up and flared! So do your best to manage your stress levels - it can make you sick.
What lynnmarie said about flares is true. They can also change from flare to flare - like and added symptom, or one symptom may not show up in that flare, but rear it's ugly head in the next one. This disease is random.
Take one day at a time. Simplify your life. Reduce your stress. The sjogrens foundation recommends a mediterranean diet - try that, see if it helps. And BREATH. Read up one day, then take the next day off and live. Alternate this and don't drown in it.
Do get a spiral notebook or something and start logging your symptoms and make sure you note your hormone changes, weather, diet, stress levels (mental and physical), etc. Doing this will help you analyze what are possible triggers for you and what foods disagree with your body chemistry.
Here's some good info on supplements and such: http://www.uspharmacist.com/content/c/10376/?t=mental_health,women's_health
Welcome agian, and take care.
iRaisin
Hi Lisa - welcome!
There is a wealth of information found here on the forum - as Lynnmarie mentioned, if there is something in particular you are interested in, just put that word(s) in the search box to the top right of this page and it will take you previous threads about that topic.
I've found the several books I own about Sjogren's are very helpful in answering questions. Here's a link to some books we have listed on this site: http://www.sjogrensworld.org/books.htm
I have several books, the three I use the most are: The New Sjogren's Syndrome Handbook, The Sjogren's Syndrome Survival Guide, and A Body Out of Balance. For myself, I find it helpful to have these books available as reference resources.
Not every ache and pain we experience is Sjogren's related. Some times, it's hard to determine "exactly" what it is.
Stress is not our friend, and it is not uncommon to experience increased achiness, etc. when we're under a lot of stress.
I hope you find this site helpful to you on your Sjogren's journey.
Bucky
lynnmarie and iraisin - ditto ;D
You will be fine, breath and learn all you can! Take notes and know you can ask, vent, learn and tell a joke, here- all you want!
Hi, Lisa! Welcome! Indocin is an anti-inflammatory. It works against prostaglandin. My grandmother used to take it for her rheumatoid arthritis (RA) back in the 1960s. I had horrible cramps, like having a baby every month, and took some; like magic, no cramps! I don't know how well it worked for Grandma, but it had to be better than the 30 aspirin she took every day! (I got her body, and I'm just glad that I got Sjogren's instead of RA. And I got her cast-iron stomach, too!)
I would suggest that you don't look up medications. There is something called the nocebo effect, where people who expect side effects get them even though there are no medications involved. http://en.wikipedia.org/wiki/Nocebo/
This disease is not trivial. Yet, too many people are more afraid of the medications than the disease. Take the medications, with optimism, keep notes on how you respond, and if something changes that you don't like, then and only then look up the side effects to see if you have one. It took a while to realize that I was no longer able to empty my bladder completely, and when I did I looked up the newest medication I was on, and waayy down on the list was "urinary retention." My doctor hadn't heard of that side effect. I changed my med, and it went away.
Congratulations on getting an actual diagnosis, and on finding us. Before you know it, you will be helping other newbies!
Sharon
Hi Bratt :)
Welcome to Sjogren's world.
You say your rheumy has put you on Plaquenil. Did he tell you to 'taper' on to it or did he just say to go onto the full dose straight away?
I was told to 'taper'. I was told to take half a tablet every other day for a week and then to take 200mg every other day for a week. After that 200mg one day and half a tablet the following day and on like that until I built up to the full dose.
Also - always take it with food.
I hope you find the site useful. It's certainly friendly and supportive.
Take care - Scottie :)
My husband wanted me to get a support group for this 'not-so-wonderful' thing that I have just found out I have. At least I know I'm not alone! Besides being so tired all the time (which no one wants to hear) - it's the constant thirst! I just began Plaquenil (which my stomach does NOT like!). I am going to take an Immodium tonight at bedtime - might help?
Today is my 69th b'day, so I guess I'm blessed in being older before coming down with this, but it sure ain't easy.
I would love advice, encouragement, what works and what doesn't -
What about Energy Drinks?
Thanks - Gayle
Hi Gayle!
Happy Birthday and Welcome to Sjogrens World!
I would like to suggest that you start your very own new thread under this section so that more people will see it and get to know you! This is a great place to come and learn that you are not alone in all of this.
Please read all you can here to learn about sjogrens and how to deal with the different symptoms of it and if needed you can use the search feature at the top of the page when you are looking for something in particular.
Hi Gayle,
Welcome and I am glad you found us! Nice your husband wants you to be with a support group! Smart man! You should probably ask the Dr about taking immodium. Constipation is such a problem with SJS too...
Welcome!
Gayle
Gayle-I would not do energy drinks unless your doc oki's it. I do caffeine in soda and do too much but i am afraid of those "energy" drinks. We are similar in age and you should ask your doc first. It may be fine, but I'm always afraid of these things causing a heart attack. Lucfy