Hello. I'm 54 and was diagnosed with CLL 6 years ago, currently under W&W.
In the past six months I have been experiencing "new" symptoms that seem similar to Sjogrens' and which my haematologist does not think related to the CLL, namely: joint pain, dry eyes, abdominal bloating, shortness of breath, constant rhinitis and mucus buildup. This comes on top of worsening fatigue.
Has anyone with CLL experienced similar "other" symptoms and subsequently uncovered a diagnosis of Sjogrens or other similar autoimmune condition?
I was wondering whether to have a Rheumatology test done. Yours, Lapo
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Lapo
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Yes, unfortunately I’m suffering many of those symptoms Lapo and have been told from my symptoms that I’m a textbook Sjogrens case. However, I’m also thinking of going for the Rheumatoid factor test. My joints are becoming progressively worse but the haematologist doesn’t take much interest in this. There is a clear link between SS and NHL (Non Hodgkin Lymphoma) of which CLL is one. I don’t want to go into too much identifiable information however on an unrestricted post.
My eyes are the worst affected and I use hyloforte eye drops many many times a day and a lubricating gel in them at night.
I’m sorry to hear you are experiencing the same issues and realise how difficult it is to obtain a definitive Sjogrens diagnosis. It’s essential to look after your eyes and keep regular dental check ups. This link is very helpful;
I have developed dry mouth. Been about 3 weeks now. Very bothersome. Also getting pain in my right eye as well as dry eyes. Had double vision in left eye...Eye Dr. Said it was dry eye and recommended eye drops. Thinking I have Sjogren's Syndrome. CLL diagnosis in June
My mum has had Sjogrens maybe 25 years.. It has taken its toll on her, including her teeth.
One thing I'd be sure to do myself (and I have my fear of familial Sjogrens in mind, if it comes to that.. Initial SLL diagnosis carried small relief - I did not have swollen salivary glands..).. Well, I'd use a small 'mouth freshener' size spray bottle containing colloidal silver as a method to moisten my mouth whilst also safely killing bacteria..
..my opinion is that low doses are thoroughly safe.
I too have been experiencing excessive dry mouth and eyes (at age 54 coincidently) and achy joints. My hematologist sent me to a rhumatologist to be tested for Sjogrens and Lupus. Thankfully all tests returned negative! I do have many swollen lymph nodes and my WBC has climbed to point where treatment is nearing (I’ve been on W&W for many years now) so I believe my saliva glands may be impacted. I also think my dry mouth symptoms (the most bothersome) was being aggravated by using a mouthwash with a high alcohol content. I have switched to Biotene mouthwash which has helped a bit and have become quite religious about getting in a good 45 minute walk everyday which is helping the joints - at my age it’s hard to know what’s “normal” in terms of minor aches and pains! But no Sjogrens or Lupus despite all the symptoms. Hope this helps!
Hi, PCara90. Thanks for your sharing your experience. May I ask where your WBC is at? Are you thinking that your symptoms are CLL related? I too am using alcohol-free mouthwash but that does not seem to make any difference; neither do eye drops to my dry eyes...
My WBC measured a few weeks ago was 98.8k. I started to notice a change when my counts hit the 60-70s (maybe a little earlier). My dry mouth symptoms do seem to coincide with flare ups of my CLL. Of course, everything flares up when my glands swell and flare, so who knows for sure. I have always been prone to sinus troubles so there may be a connection there as well. It's really only an annoyance at night and upon waking in the morning. My tongue seems glued to the roof of my mouth at times. Getting rid of the alcohol mouthwash definitely helped but I'm still much dryer than in years gone by. I also have to remind myself to drink plenty water and stay hydrated - that helps too.
Hello, I am in wait and watch and also have dry eyes and dry mouth. I think they need to do a survey on all of us to see how many of us have that. Also, I do not take any medication at all so I know it is not the medicine.
I have been on W&W for 6 years and have had enough of being told NOTHING I experience is related to the CLL ; the worse part is that my GP likes to say that EVERYTHING is related to the CLL. Either way nothing happens. Truly, W&W...
I was diagnosed about nine months ago and am on WW, no medication. I too have recently experienced coughing up mucus, runny nose, and more fatigue than usual. Not sure if its related to CLL. I don’t go back to my oncologist until late summer and hope to find out more then.
Unfortunately Sjogren’s is a auto immune disease like RA and like many autoimmune patients who have mixed connective tissue autoimmune diseases some 20% can test negative for any of the markers. Us CLL/SLL patients can easily have other diseases.
Yes i have sjogrens as well and am experiencing all symptoms you are dealing with—dry mouth, eyes, joint pain and constant sinus issues and post nasal drip. I’ve seen ENT doc said not infection. Ive been on watchful waiting for 11 years, but am getting close to needing treatment. I empathize with you,
Wow! I don't often meet folks like me, who have both CLL and Sjogren's. I got my Sjogren's ("SS") diagnosis about 6 months prior to my diagnosis of CLL, although I'm sure the CLL was already there, and probably the SS as well. With regard to my SS symptoms, my major one was profound fatigue. Several times I went to the doctor thinking that I had the flu. I just ached all over my body and could hardly drag myself to work. Each time blood work was done with no definitive results. Finally, after a couple of years my RA factor showed up as being elected. I was referred to a rheumatologist who did more blood work. The rest of my auto-immune factors were borderline, but he diagnosed me with SS based on my symptoms: the fatigue, achy joints, extremely dry eyes and dry mouth. I was put on Plaquenil which of course does not treat the "sicca" (dryness) symptoms. For that I used LOTS of different kinds of eye drops, and suffered from horrible mouth sores that were the most difficult elements. For a very long time I could only eat bland, "un-sharp" foods and as a result lost almost 20 pounds. When the CLL diagnosis came along, prompted by enlarged lymph nodes, I was already quite depressed. I am now on Imbruvica (over 2 years) and doing extremely well. Once I had been on Imbruvica for a while my fatigue improved dramatically and now I no longer need a 2 1/2 hour nap every day. My doctor thinks it was the CLL that had caused my profound fatigue rather than the SS. So today, to answer your question, I do still have a lot of issues with dryness...eyes, mouth, sinuses. This past winter I had 3 sinus infections, and yes, LOTS of mucus in nose and throat. As a result my hematologist had me get IVIG infusions. Helped a lot. The other symptoms you mention are not familiar to me. I do have extreme IBS, which I'm convinced is another one of those autoimmune dysfunctions partly caused by extreme dryness in ALL of our organs. I wish you luck with all of this! My best advice would be to find a hematologist who specializes in just CLL. As far as the SS goes, I have yet to find any doctor who knows much at all about it, let alone how to treat the symptoms. Have all the tests you can, but be aware that with SS it's all trial and error. Best...Karen
I was on calcium with magnesium until my pharmacist picked up on the fact that I was buying calcium capsules with magnesium. Using calcium without magnesium has greatly helped my IBS symptoms (calcium tends to be constipating, therefore the combo). I'm a firm believer in making friends with my pharmacist. They can spot things a doctor misses and can help with opinions.
Hello. I've just found this thread. I too have sjogren's and cll. How are you feeling today? I'm currently tapering prednisone due to eye issues, ptosis with a contralateral retraction and proptosis. Please may i ask, is the imbruvica for sjogren's or for your cll? Has it taken away or reduced the aches and fatigue?
Hello! I have been on Imbruvica for over 3 years for my CLL and I am in what you might call a "remission" although they don't really use that word for CLL. As you know, there isn't a cure although they are getting close! I was diagnosed with CLL about 6 months after my SS diagnosis, and wouldn't be surprised that the two are related. I am 17p deleted and so at greater risk, which is why I'm on Imbruvica. I don't suffer as much from fatigue as I used to, and my hematologist thinks it was more from the CLL than the SS. As far as aches go, I never know what to blame anything on, as I have pretty bad osteoarthritis in all my joints. I am 69 years old and live in NY State. Do you mind me asking your age?
Thanks for your reply. I'm 48. I have rheumatoid arthritis in my jaw, i don't know if its anywhere else. I believe my cll is currently just confined to my blood and am worried about the sjogren's impact on the cll progression. Have you been told anything about that? Thanks Angela
Hi again. No, I've not really had that issue addressed by anyone. But I have seen several places where the connection between SS and CLL has been all but established.
Thanks for the reply. I'm guessing that a standard haematologist won't know much about the two conditions together. I'm waiting a referral for the sjogren's i think. Ive lost track a bit on who is doing what at the moment!
Thanks Karen for sharing your journey so far. My haematologist does the best she can: i realise this is a complex, if not impossible, set of symptoms to make sense of. One day, one symptom, at a time.
I too have been on WW for 5 years and last year had 20 dental appointments, I have always been a regular and kept up good dental hygiene, my haematologist, blames it on the CLL, It is now thought I too have Sjogren disease
It was my dentist who suggested I may have Sjogren's as she was struggling with the dryness of my mouth and lips; seeing her every three months these days.
My dentist sent me to the Ent who discovers my SLL after lymph node removal 3 years ago and I have all those symptoms as well I’m 49 and starting Ivig tomorrow bc of autoimmune neutropenia... wishing you better days ahead xoxo
Here's another CLLer with a slew of Sjogren's and autoimmune symptoms but with negative blood results. My sicca symptoms appeared long before CLL along with dry skin and nails, chronic post nasal drip and phlegm. But in the past few years it's been relentless - increased dryness, fatigue, peripheral neuropathy, joint pain, vertigo, hair loss, inflammation, heat/sun intolerance, shortness of breath (since improved) - every year something new and fascinating! To help keep my mouth healthy I use xylitol and Biotene products. A xylimelt lozenge every night works well for me. A dry mouth is extra sensitive to spicy foods. Tell your dentist if you have dry mouth symptoms. They have samples and give good suggestions. A Sjogren's diagnosis can be elusive. Treating the symptoms is important. My hematologist isn't interested in any of it and my GP thinks I'm too "body aware." Sigh...
I would be a bit dismayed if my GP said that to me. I personally NEED to be aware of my body and its signals and symptoms. I am the only one who lives in my body and I alone am it's best advocate.
Yes, I was diagnosed with SLL thirteen years ago and at the time had been living with rosacea all my life. But in the past couple of years have been diagnosed with several more autoimmune diseases. I also have metastatic neuroendocrine carcinoma and tumors removed from my parathyroid. I've lived a healthy lifestyle my entire life, whole food and mostly pescetarian in my adulthood. (I occasionally have a cheeseburger or hot dog when invited to.)
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