Aa
Treatment?
I am a 38-year-old woman who was diagnosed with Sjogren's about 5 months ago. I have very dry eyes, mouth and lips. I am also suffer from fatigue, general body soreness which feels like the flu, and muscle weakness. I use serum tears, systane (over the counter), and restasis for the dry eyes which provides some relief. I take very good care of my teeth, use biotene products and chew a lot of gum (trident with xylotol) but still have decay and erosion. I take hydroxychloroquine (Planquenil) and NSAIDs but I don't feel that there's been significant improvement.
My question: Does anyone have any experience with taking biological drugs (Kineret, Remicade, etc.) for Sjogren's? There is a clinical trial going on in Norway currently that is using Kineret to treat the fatigue associated with Sjogren's. I wish there was something else that I could do to improve the way I feel. I miss feeling "normal" and wish I had some more energy. My Rheumy seems very conservative when it comes to treatment, and wants to stick with Planquenil.
My question: Does anyone have any experience with taking biological drugs (Kineret, Remicade, etc.) for Sjogren's? There is a clinical trial going on in Norway currently that is using Kineret to treat the fatigue associated with Sjogren's. I wish there was something else that I could do to improve the way I feel. I miss feeling "normal" and wish I had some more energy. My Rheumy seems very conservative when it comes to treatment, and wants to stick with Planquenil.
Hi S,
I hope you are feeling some better...I know if you are like me, I may feel a bit better one day, and then...BAM! down again...sometimes it even changes hour to hour...I agree that our medical situations could be worse...but, to me it is all relative...meaning your experience is just as important to you as someone else's is to them...and vice-versa...I have had a few blisters in my mouth...at the moment, I have 2 in my right nostril (eeyuuu...sorry...) and what is funny is that I totally did not equate the ones in the nose with the Lupus/Sjogren's...DUH.
My son also gets the mouth ulcers sometimes, in his case Dr. said probably stress related or from an injury like a chip cutting the area...a couple of things we have found that may help: we buy Rembrandt toothpaste for canker sores, and it does help...and we have an RX from the dentist-for I think it is Triamcinolone?? ( will check and let you know for sure) it is a paste-like med with a topical steroid in it...it forms a "protective barrier" over the sore area and seems to help it heal quicker...the other things that work is when we get one of the sores, we can call the dentist and he will laser it, and it heals it...and where it was should not get another one...this is not always convenient, tho for someone who may have to take off of work to go to the dentist, etc... I know those sores can be so painful...makes it hard to eat, etc... I guess we could look at the bright side...big lips are "in"...some people pay big bucks to get that look...lol...
I hope you are feeling some better...I know if you are like me, I may feel a bit better one day, and then...BAM! down again...sometimes it even changes hour to hour...I agree that our medical situations could be worse...but, to me it is all relative...meaning your experience is just as important to you as someone else's is to them...and vice-versa...I have had a few blisters in my mouth...at the moment, I have 2 in my right nostril (eeyuuu...sorry...) and what is funny is that I totally did not equate the ones in the nose with the Lupus/Sjogren's...DUH.
My son also gets the mouth ulcers sometimes, in his case Dr. said probably stress related or from an injury like a chip cutting the area...a couple of things we have found that may help: we buy Rembrandt toothpaste for canker sores, and it does help...and we have an RX from the dentist-for I think it is Triamcinolone?? ( will check and let you know for sure) it is a paste-like med with a topical steroid in it...it forms a "protective barrier" over the sore area and seems to help it heal quicker...the other things that work is when we get one of the sores, we can call the dentist and he will laser it, and it heals it...and where it was should not get another one...this is not always convenient, tho for someone who may have to take off of work to go to the dentist, etc... I know those sores can be so painful...makes it hard to eat, etc... I guess we could look at the bright side...big lips are "in"...some people pay big bucks to get that look...lol...
Dear C, Thanks for the response. I will look into the drugs you mentioned. I know that my medical situation could be much worse but sometimes I just get tired of dealing with this. Do you ever get painful blisters in your mouth or lips? I am having a flare up right now and it looks like I've a lot of collagen injected into my lips. Not attractive.
Hi,
I don't have any experience with any of the biological drugs as relating to Sjogrens that you mentioned. I was diagnosed with SLE with secondary Sjogrens in Feb. of this year. My Rheumy also put me on the Plaquenil, and I use the meds for dry eyes and the Biotene products to try and help with the dry mouth...tho I have a lot of troubles also with decay, especially around the gum line...I am so worried about the thought of having to have dentures before my time, and while I think I am doing everything my dentist has suggested, it is still a problem...
Regarding the fatigue, I wonder about a med like Provigil or Adderall? I don't know anything about them, but was just reading a different post regarding a person with MS taking Provigil, and now I am wondering about it in regards to the fatigue some of us with Lupus, Sjogrens, etc. have. Just a suggestion to maybe talk with your Dr. about it...I do know that it can take up to 6 months to note the full benefit (if there is any) of the Plaquenil...as I am only on my 2nd month, I can't tell any difference, either...yet. Good luck to you,
C
I don't have any experience with any of the biological drugs as relating to Sjogrens that you mentioned. I was diagnosed with SLE with secondary Sjogrens in Feb. of this year. My Rheumy also put me on the Plaquenil, and I use the meds for dry eyes and the Biotene products to try and help with the dry mouth...tho I have a lot of troubles also with decay, especially around the gum line...I am so worried about the thought of having to have dentures before my time, and while I think I am doing everything my dentist has suggested, it is still a problem...
Regarding the fatigue, I wonder about a med like Provigil or Adderall? I don't know anything about them, but was just reading a different post regarding a person with MS taking Provigil, and now I am wondering about it in regards to the fatigue some of us with Lupus, Sjogrens, etc. have. Just a suggestion to maybe talk with your Dr. about it...I do know that it can take up to 6 months to note the full benefit (if there is any) of the Plaquenil...as I am only on my 2nd month, I can't tell any difference, either...yet. Good luck to you,
C
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