What type of supplements?

[CMNK12]

Greetings,

  I hope everyone is staying healthy and has had an enjoyable holiday season. I have

been contemplating adding some natural supplements to my medical regimen. I already

take vitamin D3 5000 units . What else can I take to help with pain, inflammation and

my dry eyes? My eyes have all of the sudden become the Sahara desert for the last 3

months. I'm using gel drops and punctal plugs and they still hurt and burn. Anyone else

feel my pain?

I've had Sjogrens for 15 years. I'm on Rituxan and just added cellcept. Have low dose

prednisone and plaquenil to help manage but I feel like nothing really helps anymore.

I spend most of my days in pain and I'm thankful that I just made it through another

day. I would really like it to be better than this because I just can't imagine it going on

like this. Any help would be greatly appreciated.

In your debt,

CK

[meirish]

I see that you just added the Rituxan and Cellcept so chances are they have not kicked in yet. I have been on Cellcept and that does take a few months---like 4-8 months I have heard as the ball park figure before it kicks in. My son is on Cellcept also and it does help his fatigue. He had to stay on a low dose for some years as it gave him insomnia and he has just now increased his dosage.

As far as the supplements go I would not start anything until you check with your doctor. You are also taking Plaquenil ( I am on that also) and I am thinking that you may want to hold off on starting any supplements for awhile. All these heavy duty meds can cause stomach issues and supplements do seem to cause enough stomach upset or after taste on their own.

I can understand your need to want something to decrease the dryness. Have you tried getting a personal humidifier and placing it by your chair and or bed as needed. This does help give moisture for the nose, mouth and also the eyes. The humidifiers that are smaller and portable really do better with distilled water as the humidifiers don't need such heavy duty cleaning. When I was first diagnosed I was going through such a dry time and I spent a lot of time by my personal humidifier. I had a small one made by Hunter that uses a 20 oz water bottle that has been cleaned well. Worked really well. I have had some years with less dryness and am now having increase in symptoms again. This sjogrens changes it mind and symptoms vary over the years.

Are you on the Restasis for the dry eyes? It can be very irritating when one first starts it. It really helps to have your eye doc order steroid eye drops for a couple of weeks prior to starting the Restasis. This helps decrease the inflammation so doesn't burn as much.

Also, using an eye drop about 15-20 minutes prior to Restasis and about 20 minutes after the Restasis has been known to help some people get adjusted to it at a less stressful rate. I have heard of some people storing their Restasis in the refrig in a closed container (small plastic disinfected  margarine container, etc). Let the drops adjust to room temp for a little bit and then apply to eyes. The coolness is supposed to help. Always chaco with your eye doc before doing anything different...which I am sure you are aware of.

Just out of curiosity...have you had to be on antibiotics at all lately or had to use antibiotics in your eyes?? I have had such sore eyes with some redness. My eye doc said I did not have infection in the lids or eyes. However, I ended up being put on an antibiotic for 10 days for my sinuses and infection in my nose. My eyes have improved quite a bit. Not back to ormal but music less discomfort.

Now...I can't prove that I had any infection in my eyes, but antibiotics are generally able to decrease the inflammation that we have with some of our autoimmune symptoms. Strange but very true. I always feel better autoimmune wise when I am on antibiotics. Cant be on them all the time but sometimes it is a welcome relief. You might want to talk to your eye doc about this aspect and see if there is a possibility of high inflammation/infection in your eyes that might improve some. Sometimes just a lower dose/less days can help by decreasing the inflammatory disease in our bodies. Good luck and I hope you can find some comfort.

Also, place warm clothes on your eyes. You can buy cheese cloth at Walmart material *(dry goods) department in packages of several yards. Can cut out a small amount that you can fold over several times and then soak in boiled water that has been cooled down. This helps your eyes be more comfortable and draws the circulation into the area which also helps.

Also, the chance of getting infection from a rag that gets dirty and is heavy and holds in the germs is less. Easier to throw way the cheesecloth after a certain amount of use than to  wash a cloth in the washing machine with other towel, etc that might contain bacteria that could be a problem. Not saying that you or anyone else has bad hygiene, but it is hard to use good technique when taking care of our eyes. Even using bleach to disinfect out loads of taels, etc is hard. Really hard to get the bleach out of these rags and can be irritating to eyes. Good luck. meirish.