Sjogren's Syndrome

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 

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

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

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

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

 

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.