New Here and Need Info on Some Treatments

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JennyMM
New Member


Date Joined Apr 2017
Total Posts : 4
   Posted 4/2/2017 3:14 PM (GMT -7)   
Hi All,

Have Sjogren's since 2013, pretty nasty. Early on in addition to the common dryness issues, pulmononary issues presented themselves. In addition to Plaquenil I have been using some more natural treatments including Helminths that have been recommended by a Functional Medicine doctor I also go to. These treatments have held the issues in check so far but my Rheumatologist is recommending I drop them and go on Cellcept. I have read about it, but not so sure about it being as safe a treatment as I have been using so coming on here to ask members their experience is using it. Did you have any side effects, it so what were they? How well did it control disease activity? Like I said, my current protocol had been containing the Sjogren's without further progression and would hate to have that change. Thank you in advance for your experiences and recommendations.

J

Post Edited (JennyMM) : 4/2/2017 4:17:04 PM (GMT-6)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7519
   Posted 4/2/2017 6:07 PM (GMT -7)   
Cellcept was the best thing that ever happened to me! It put my SLE Lupus into remission!!!

The only side effect I had was my hair got a bit thin - but it's since come back and it was well worth it.

I would certainly try whatever my rheumy recommended if I had pulmonary issues - that's nothing to play around with.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

JennyMM
New Member


Date Joined Apr 2017
Total Posts : 4
   Posted 4/5/2017 12:21 PM (GMT -7)   
Thank you, Lynwood, for the reply of your experience with Cellcept. The Pulmonary issues started before I even knew I had any disease, really odd since the doc said it normally shows up later in the disease progression, not at the beginning, but autoimmune issues are unpredicatable to say the least. Things right now are steady, there has been no progression since I went on my current natural protocol, so I look at it as rocking the boat if it change to something else, who knows, even though it worked well for you if may not for me and could cause progression which sometimes is tough to contain again, besides, suppressing the immune system can cause problems down the line. I really hate to fix what is not broken, if for some reason I was progressing then I would look at it differently, but as it stands it is a potential risk. BTW, how long have you been on Cellcept and in remission and what dose did you use? My Rheumy explained all are different, but suggested in the 2000-3000 mg range is common. Thanks so much for the taking the time to answer my questions!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7519
   Posted 4/5/2017 2:46 PM (GMT -7)   
Cellcept dosage... I had to go look mine up. I was on 3000 mg AM, and 3000 mg PM, for 18-20 months around 2007. Unless you are taking it after organ transplant, it's really not recommended for longer than that.

And yes, it's hard to say which of the medications might work for a given individual. Of the 3 meds Imuran, Cellcept, and MTX, which are offered at about the same level of illness, Imuran did nothing for me, Cellcept was a miracle, and I didn't have to try MTX. Other Drs offer them in a different order, it's always a mystery which will help someone and why.

However, in 17 years of dealing with auto-immune, your comment is the first to imply any of these meds can make things worse permanently. They are taken for a few months and closely monitored, with too many side effects or no improvements they are immediately stopped.

"Suppressing the immune system can cause problems down the line".... um, no, we have OVER ACTIVE immune systems, suppressing them back to NORMAL levels isn't going to cause trouble.

You sound pretty set in your opinion, so I almost wonder why you are asking others?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

JennyMM
New Member


Date Joined Apr 2017
Total Posts : 4
   Posted 4/5/2017 4:56 PM (GMT -7)   
Thanks for the followup, that is a lot of meds, 6000mg daily? You don't take it anymore? So if it puts you in remission you can stop taking it? Totally confused on this. As far as the comment about issues down the line, I know these meds can cause it. A friend has RA and used Methotreaxate for some time and ended with Lymphoma. Also lots of literature online about these causing bad infections and cancer too, so it is hardly a secret. I really doubt they get the dose perfect and you have a balanced immune system, it will most likely be too much or too little suppression. I very much appreciate you taking the time to respond to me each time, but curious that no one else has, it this drug not usually used for Sjogren's? I always heard of Plaquenil being used and I am currently on that one, but was not familiar with Cellcept at all. Why can't things just back to the way they were, being healthy and not needing any of this junk! Thank you very much, Lynwood, for helping out with my questions.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7519
   Posted 4/5/2017 7:20 PM (GMT -7)   
Yes, if it puts you in remission you stop taking it.

Cellcept, Imuran, MTX are generally used for Lupus, not so much Sjogren's - at least not as far as I know, but we don't have that many Sjogren's members. Most of the Sjogren's members we do have their Sjogren's is secondary to Lupus, which makes it act a bit differently than the serious main issue of Sjogren's, which can mess up ALL the bodies mucus membranes.

MTX and RA is a TOTALLY different set of circumstances than Cellcept and Lupus. Humaria can cause medication-induced Lupus, I know, which then supposedly clears up if you stop taking them.

These meds all act differently - Plaquenil inhibits disease progression. Prednisone helps control inflammation. Cellcept, Imuran, MTX all are immune suppressants. (Although personally I consider MTX to be in a different class than Imuran/Cellcept, and am glad it was never suggested to me, as I may have turned it down.)
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 4/5/2017 8:23:25 PM (GMT-6)


JennyMM
New Member


Date Joined Apr 2017
Total Posts : 4
   Posted 4/6/2017 4:42 PM (GMT -7)   
Thank you Lynwood for explaining it all to me, lots to consider. To be honest, though I do not have Lupus at this time and hopefully not later either, I think Sjogren's and SLE are pretty much the same, lots of overlap between them, though Lupus can be more problematic with its kidney issues. I will keep doing my research on this issue and not the doctor rush me into anything. Lots of good info on this site and with the help of others like yourself I will come up with a good gameplan. Luckily things are OK right now, so I do not have to rush it, will keep researching your past files for more info. Thanks again!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7519
   Posted 4/6/2017 5:50 PM (GMT -7)   
No, they are quite different. Keep reading!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Life4Me
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 4/16/2017 1:15 PM (GMT -7)   
Hi I was just diagnosed with Sjogrens and I am going to a Rheumy that I am not happy with, looking for another. (New Jersey) I have dry mouth, dry nasal passages, dry eyes, dry hands and feet, body burning, hands burning, and sometimes I get these electrical shock type feelings in random places, possible Nueropathy. First push out the door she gave me Plaquinal and told me absolutely nothing else. I learned more from the Smart Patients website.

I have not taken the med yet, but I am taking Vitamins, ( I am concerned about eye problems associated with Plaquinal) & I heard it can cause & lead to blindness. I am so fearful of drugs as I know how we take them for one thing and it erupts something else in our system. But I so want to suppress the Sjogrens in anyway possible, with as little of side affects as possible. I am on a Gluten Free diet, and no sugar diet now. Hungry for something sweet and miss my favorites, but don't want to loose all my teeth. I have already had 2 implants, 3 crowns.

I was going to go to a Functional Internist but he wanted 3000,00 up front! He is the only one in my area. I just cannot afford those kind of costs.

I am curious to know, what herbs/vitamins did he put you on? If you don't mind sharing, I would love to have the opportunity to ask a Nutritionist or my Rhemy or just learn about them for my own peace of mind and knowing it is an option. I am working on getting an appt with a Nutritionist who may be able to help me.

I heard of Autoimmune- X, just don't know if it is any good. From Digestacure.
I have also heard of Low Dose Naltrexone.
But cannot find anyone who has used either one.

I would love to hear about how you are doing and your Functional doctors recommendations. Thank you so very much. I would always consult with a dr before taking anything, but this helps provide me with additional information. Thank you so very much,

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7519
   Posted 4/16/2017 4:22 PM (GMT -7)   
Plaquenil has been used for malaria for decades, and in the last 20 years, for several auto-immune diseases - it is a disease suppresant - and is actually quite safe. It does NOT cause blindness. It may cause some changes in your eyes, thus you need to see an ophthalmologist once a year for a visual field exam. If any changes are detected, stop Plaquenil and your eyes will return to normal. My ophthalmologist is in practice with 25 others, been in business over 20 years, and he said only once did they even see a hint of an issue with Plaquenil.

Check out Biotene products for addressing dry mouth issues.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 4/16/2017 5:28:28 PM (GMT-6)


Life4Me
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 4/16/2017 5:06 PM (GMT -7)   
Thank you so much. smile Have an easy night, and I hope one day they find a cure. I have 2 sons and I pray they don't get this.

Life4Me
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 4/16/2017 5:12 PM (GMT -7)   
I will continue to check back to this link to see if anyone else comes on and has good information in regards to my questions. Thank you so much for caring.
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