Sjogren's Syndrome

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L and L's Mom
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/23/2008 9:52 AM (GMT -7)   
Hi, I am new to this site.  I have been taking medication  for connective tissue dieases for 8 to 10 years. Sjogren's Syndrome was the first diagnosis, was started on Plaguinil and Celebrex.  A little over 3 years ago, was hospitalized with high fever for over 3 weeks, leaving the hospital without knowing the cause except the fever began to come down with prednisone.  The doctor would refer to it as my connective tissue disease.  I have been on prednisone since that time and had reduced to 2 and a half daily as my SED rate was reduced. Every thing that happened since, the doctor would say "that goes with Sjogren's": losing my sense of taste and smell, area of my feet becoming numb, etc.  about 6 months ago, I had about got past going---fatigued, nauseated, and constantly felt like I would pass out.  Blood work revealed low Lymphoma.  I know that Embrel, Humira can lead to Lymphoma, and in rare cases, Sjogren's can lead to Lymphoma.  Has anyone developed Lymphoma taking Plaquinil? or other Arthiritis medicines?  Thanks, L and L's Mom 

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/23/2008 6:25 PM (GMT -7)   
Hey there.. welcome to the forum! Unfortunately, I do not have Sjogren's, but I know there are a few people on here that do.. I am on Enbrel and have been on it for almost 3 years.. so far, so good.. no lymphoma! :) Are you still on plaquinel and celebrex? Hang in there and keep us posted! I'm sure others will be along shortly! Take good care, Duck
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 2/25/2008 9:03 AM (GMT -7)   

Hi there.  and welcome to HW.  I think you'll find it a wonderful resource filled with caring people who have both personal and professional experience on these types of topics.  I have RA, and recently have been dx with secondary sjogren's.  My rheumatologist started me on plaquenil, but it did nothing at all for me.  He added enbrel, and five months later, I started taking mtx with the enbrel.  Right now, I'm taking all three drugs, but I've cut my plaquenil dose in half and will eventually phase it out altogether, as it is not necessary when you take enbrel and mtx.  Interestingly, my eyes started bothering me in a major way right around the time I cut my plaquenil dose in half.  Coincidence?  Probably, but I'll keep an eye on it anyway (No pun intended). 

In answer to your question, I don't believe that plaquenil has been associated with lymphoma, but having connective tissue disease in general, and sjogren's specifically, puts you at risk (although as you pointed out, it is rare).  It is something that concerns me as well, and now I'm wondering if using a biologic (like enbrel) increases the lymphoma risk even more in someone with sjogren's?  I believe there is someone else here that developed a low-grade lymphoma from taking enbrel, so perhaps they could offer more specific information.

 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


L and L's Mom
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/25/2008 9:52 AM (GMT -7)   
Thanks, Elcamino
I have searched for causes of Lymphoma--contact with chemicals was what my internal Dr. thought, I first thought Quinine might still be in Plaquenil, but phar. said no, but after researching Sjogrens which is the front door to most arthritis, it stated that it could lead to Lymphoma---might as well accept it.  With low Lymphoma, there is no treatment,
which bothers me as the Drs. say I have lost 60 percent of the blood's ability to make white and red cells.  I am fatigued most of the time, but have been diagnosed with Hypro-low blood sugar and have not gotten it under control yet.  I shake a lot and have very little energy much of the time. Would love to talk to someone who has the low Lymphoma.  Is there something you can do to help the situation? 
L and L's Mom

jbollinger2005
New Member


Date Joined Mar 2009
Total Posts : 10
   Posted 3/3/2009 1:56 PM (GMT -7)   
hello i am new my name is jennifer, i was diagnosed with thyroiditis in june of 2008,then in september of 2008 i was diagnosed with sjogrens syndrome and last month with crohns disease, it is a constant battle with mouth sores ,indigestion and dry mouth, dry eyes, all these problems at 24 i would have never thought. but i am dealing with things the best i can .it is getting really hard to function ,especially taking care of 3 young children .i just hope that someone out there understands and is willing to listen thanx

Boroboy
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 3/3/2009 3:04 PM (GMT -7)   

Hi there,

I too suffer from Sjogrens Syndrome, had the paper test done a few years back. I'm also a long term suffer of Ankylosing Spondylitis. I beleive Sjogrens to be a by-product of my Ankylosing Spondylitis. I also suffer from chronic prosatitis & now chronic iritis. Again I believe all to do with my malfunctioning immune system.

I was also taking Remicade for around 5 years, which helped my AS, but none of the problems I have mentioned. Infact my iritis & prostatitis came about whilst on the Remicade.

I may be trying Humira in the future.

Best wishes.

George.


L and L's Mom
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 3/11/2009 7:38 AM (GMT -7)   
After 18 months from dx for Lymphoma, I started RituxanX8 in Jan. I finished yesterday, Mar. 10 and have received 7 Procrit shots. Blood count had dropped to 27 before treatment and yesterday was up to almost 34. Dr. says my problem develop from IGM def. Anbodies became coated or compromised and were not doing anything for me to fight infections and evidently to produce red blood cells. I read online where with Sjogrens, you were 44 times more likely to develop Lymphoma than the normal population. My daughter, a rhimatic spec. says 40 times. I am concerned that at least four of the new Arthritis meds say at the end of the ad that they may cause Lymphoma and one says other cancers. Prayerfully, I hope you improve, especially with small children to take care of and that this treatment works for me. L and L's Mom

haditall
New Member


Date Joined Mar 2009
Total Posts : 6
   Posted 3/27/2009 3:16 PM (GMT -7)   
Hi! I'm new to this forum so I have some catching up to do. I was dx'd with RA in mid-late 90's and was told I probably had had it for several years before they figured out what I had. My bloodwork was negative - I'm a-typical for a lot of things. I also have Sjogren's which also had to be dx'd with symptoms rather than blood. I have all negative ANAs. I was on prednisone for the 1st year with methotrexate. Also Celebrex and Plaquenil. I also have multiplex & phr neuropathy, carpal tunnel in my left arm, small vessel disease (high stroke & clot risk), multiple back problems, bladder problems, and have developed diabetes recently. I tried Enbrel for about 8 months a few years ago but it didn't help. I was taken off methotrexate for a while when they found 2 small granulomas in my lung but was put back on Trexall a year or two ago. I have recently had to stop the plaquenil because of 2 bad back-to-back visual field tests. We're hoping the eye damage will reverse itself.

Eye damage is enough of a blow right now, but I'm surprised to learn that I may be at higher risk for lymphoma since I have both RA & Sjogren's and have been on so many meds for so many years. (I take 10 different RX's for multiple problems.) My doctor is talking about putting me on Orencia or Remicade and I don't know which would be the best (or worst!) Has anyone out there tried both of these after being on Plaquenix & Trexall? I take Evoxac for the Sjogren's & that has been a lifesaver. My mother had RA, Sjogren's, osteoarthritis, and diabetes so I am my mother's child! My neuropathy is moderate. I have a hard time telling cold from wet with my feet and take Trileptal for the "shocks & jerks".

After my last visual field I took a radical step and have quit all my meds except the Trexall once a week and the Evoxoc. I know I'm not supposed to without telling my doctors but it's getting to the point that I don't know if the new symptoms I develop are side effects from the drugs or new problems. I have had a cough for a few months now but I do see a lung specialist (mild interstitial lung disease also). My doctors don't know whether some of my problems are the result of my RA or if the RA is being aggravated by the other problems. Vicious circle! I'm only 61 but some days feel like I'm 90. Good thing I don't look it!

L and L's Mom
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 3/28/2009 7:37 AM (GMT -7)   

Hi Haditall,

I guess all this is "in part" passed on to us.  Like you, my Mom had most of my problems.  She had Per. Neuopathy from her knees down so that she could not walk the last couple of years she lived. My Neuropathy developed after Shingles, which left me with PHN.  about 8 months ago, developed severe pain on the opposite side, but with out breaking out.  The feet were already fairly numb, but with the side pain, became so painful I could hardly sleep at night.  After about 3 months, I started to improve.  Surprising,  the  pain and numbness in both hands improved to where I just have mostly burning and itching occasionally.  The feet are another stroy.  I have had the nerves checked in legs and ankles- just borderline. Th onc. tell me that my NHL was caused by the IGM antibodies not fighting for me anymore.  I guess you would call it a IGM deficenancy.  The Rhum. had told me earlier that I had a IGA def.  The Immune system breaks down. I've just turned 69 and developed most of my problems around 60.    L and L's Mom

 


just me 1950
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/19/2011 10:10 AM (GMT -7)   
Hi to all,
This my first post. I feel for every one of you. I don't have any suggestions so far. I have lupus SLE type, Sjogrens and herpes. The herpes is giving me fits. I stopped the Valtrex a couple of yrs ago because of expense. Currently use lysine, zinc and vitamin e. Also have pain in buttocks and thigh that I think is part of the herpes. Any thoughts on a more effective treatment for the herpes?

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 2/25/2011 9:21 PM (GMT -7)   
to L and L's mom : I know plaquinel has very little side efffects if any. I have SLE, and others and Sjogrens is something i am currently being tested for as it is very common as a secondary Auto immune or third. common dry eyes (there are two great artificial tears otc.) dry nose with sores ( thing that works best for me is Ocean nasal spray otc and dry mouth.. Biotene has tons of products that help.. oral balance is a saliva substitute that helps and u want to use a fluoride rinse daily like act to protect your teeth. (hygienist) I can not use oral balance i tried but it does have truvia or a sugar substitute and for me that causes migraines.

I have not heard of a connection between lymphoma and Sjogrens as a typical thing at all. But I am not a Dr. I just have many illnesses. I do know however how closely linked all of your salivary and lymph glands in the neck are related. I don't know how they are treating you, i am treated with a weekly does of methotrexate a fairly high dose and monthly infusions (for lupus) which in turn tends to help with the other Auto immune conditions. I know with Sjogrens it is easy to develop candidiasis which is like thrush in a babies mouth... easily treated just bothersome... and the dryness can be unbareable at times.

Try not to be to discouraged.. I have been sick over 15 years. and i get discouraged but I am pretending not to for you : ) the energy thing.. there is a drug called provigil it is typically used for narcolepsy .. i am tired and hands hurt typing is a mess... I know that it can help get people throu a day and when there is no cure for things it is finding the balance of quality of life vs quantity for me. I go to physical therapy and massage. this actually is kinda painful but i do feel it gives me energy. I find routine helps. I do not sleep well but i try to be in bed and up even if i feel crapty the same time every day... and then i take a nap every day . I tried all sleep meds they do not work for me.. I do take klonipin at night and that has been a saving grace and i do get a bit better sleep.

I am sorry i have no real answers ... but i do have a long history of trying things once, twice and trying nothing at all and feeling at the edge. Please know there is a purpose for you, try to find the simple joy in a day even if it is trivial to someone else.
panther (cuz i pant when i breathe... ) fern my thoughts are with you and I hope that you are able to find some highs more than lows and things to distract you from health as i feel my health is a constant pain in my rather chunky tush.
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