Hello! My name is Lisa. I am a mother of two boys (14 and 19). My 19 year old was just diagnosed with Sjogrens. His main complaints are dry eye and fatigue. The doctor is checking his liver enzymes because they are elevated. We r hoping that is due to the supplements that jake takes. He is big time into physical fitness, works out all the time (even though he is tired!) some of the supplements even the fish oil can mess with ur liver, so we r hoping the enzyme elevation is due to that. I was surprised though that the rheumatologist didn’t start him on plaquenil. He said that with jake being only 19, the side effetz could b harmful to him. I am on plaquenil, I have lupus (was dx 2005). Do u think that jake should have been started on that? Can that keep the sjogrens from progressing? Any input would b soooo much appreciated. I am a concerned mom.
Hey...If he is still being tested and they are working through supplements that he is taking, the doc may be waiting until he has all of the information too. A young persons body is still developing too. Do you feel that the doc is being responsive to Jake otherwise? I would pose the question to him or ask for a more specific answer as to what the game plan is going to be. No matter what, you want a doc that you feel is truly listening and addressing concerns.
Good luck and please keep us posted on how he is doing.
Thanks so much! Well I know the doc said that he thought the plaquenil was too strong for someone jakes age. I mean, I know it can affect the eyes and I’m not sure what else. Mayb I will just wait the 10 days until ALL the bloodwork comes back! Im jumping the gun I guess!!! Just a worried mom. Thanks so much for ur input!!
Hi Lisa,
I know you must be very anxious, but I think your Doctor's decision to wait for the test results are a very good idea. It seems like the right way to go. He wants to look at things, before taking any further steps.
I think you need to follow the lead of the Rheumatologist for now, let him try to determine the cause of the elevated liver, he would know best about Plaquinil for him. Give him a chance to get to know your son, and for you to get to know his Doctor, I'm all for caution with treatments, especially for someone so young.
I'm glad you're here with us, and that you posted.
Sending my best to you and your son,
SK
Hello its a bommer that ur so is so young to Sjogren’s. I haven’t heard of people that have SJ using Plaquil. I myself use it for Lupus @ I have SJ. If he is having dry eye he should see an eye specialist w me my eyes just was so painful that I had plugs put in. And the other thing is I use plaquial which can cause loss of eye sight. So I actually see to eye surgeon 1 for dryness @ for loss of vision due to plaquial hope this gives some insight
Thanks so much both of u!! @SK, good advice! I know I am getting the cart before the horse, I’m just anxious. @mic3132, I have lupus as well and I had plugs put in my tear ducts. Best thing I dod!! Jake is going to an eye specialist on the 30th. I guess I will just keep praying about the remaining bloodwork!!! I’m very happy to have found this forum!!! Have a great weekend peeps!!
Hi, Lisa,
I thought that SS does not progress. At least that's what several rheu have told me.
Since my diagnosis in 2009, I have less of the symptoms now. I hope this will be in
your son's situation.
I use Systane for the eyes, Eclipse gum(peppermint), Cerave skin products. Always use sunblock and coverup in the
sun. I learned from myophthamologist that there is a new procedure that can help with the dry eye. The larger cities
have this machine that does it. My eye doctor is at Jules Stein at UCLA. When I go for my next appointment I will ask her
about this procedure.
2akitalover
Ohhhh I sure hope that it doesn’t progress!! That would b great!! Were U ever on plaquneil?
Be very careful about taking medication,,,,, I have had SS for 21 years now and do not take any medication at all, every time you take one pill it has side effects,,, and taking it for years and years lead to more side effects,, My SS has developed more slowly not taking medication A good diet of eating only what the sun grows and some fish or meat with that,,, is a lot better than medication at this age,,
2akitalover
Yes I will not jump at the chance to have him on medication! If his liver is involved, I’m sure more measures will have to be taken. Thanks so much for all the input!! I will post ab update after the blood tests results which should be at the end of the week!!!