Lymphoma and Sjogrens

[Jemorgen]

Can anyone please speak to the connection between lymphoma and Sjogrens? About 18 months before being diagnosed with lymphoma last August I started experiencing dry mouth and eyes. An anesthesiologist suggesteda Sjogrens connection. My dentist was also concerned about Sjogrens. I mentioned it to my hem/once and my gp but no one has seemed to think it’s an issue. To date, I’ve done nothing because I was focusing on my new CLL/SLL diagnosis. Now I’m wondering if I should be pushing the agenda. Thoughts?

[Newdawn Administrator]

Hi Jemorgen,

There a few of us on here with this issue and interestingly, I replied to another post this morning with this information;

‘There’s is an increased risk of developing a Non Hodgkin Lymphoma (of which CLL is one) with Sjogren Syndrome. By age 80, it’s been calculated at a 8% greater risk for men and approx 5.4% for females.

I’m believed to be a classic case because my SS developed well before the CLL with severe dry eye and joint pain. It was actually the dry eyes which first took me to the GP. However the link wasn’t made.

Some of the side effects of Ibrutinib treatment appear to mimic Sjogrens but of course aren’t the auto-immune condition. That would require a blood test, lip biopsy and/or tests with a Consultant Ophthalmic surgeon.

It’s very hard to definitively diagnose and eventually two Ophthalmic Surgeons, the haematologist and a maxillofacial surgeon told me I was a classic case. Joy of joys! 😏

My eyes have become slightly drier since starting Ibrutinib but I have to hope the mouth ulcers don’t develop.

When I was in the Day Unit receiving IVIG, I noticed some of the chemotherapy patients being given prescribed meds for mouth ulcers and mouth conditions so it’s worth asking the specialist.’

In honesty, I haven’t pursued this issue to its full conclusion because it’s sometimes a diagnosis based on clinical indicators and elimination of other possibilities. However, you can ask for testing and there’s lots of information on the net about this. This maxillofacial surgeon declined to do a biopsy on me for fear of causing infection.

I started in my late thirties with severe nodal arthritis in my hands which I believe is attributable to an auto-immune episode (based on research I’ve read). I’ve done the rounds of rheumatologist, eye surgeons, max-facial surgeons and have come to the conclusion that as Sjogrens isn’t curable, I’ll just deal with the symptoms.

Some SS symptoms intensify CLL symptoms and when I had an ultrasound for my significant lymph nodes in the jaw, I was lucky enough to have a radiologist who was also a SS sufferer so knew what to look for.

The important thing is to look after your eyes and teeth because excessive dryness can cause corneal scaring and tooth loss. I use Hyloforte eye drops on prescription and you can be given a replacement mucosal gel for your mouth (which I’ve found unpleasant).

I know there are SS people on her who will advise you further including products to use. You’ll find limited understanding amongst many medics and they don’t seem to take it seriously enough even though the side effects can be distressing and uncomfortable. Some call it Sicca Syndrome but I understand that to be without the auto-immune component.

Do you suffer bad joint problems because usually it’s a Consultant Rheumatologist who cares for Sjogrens patients?

Best wishes,

Newdawn

[Jemorgen in reply to Newdawn]

Thanks very much for your response Newdawn. What you wrote helped me identify what for me was the key point. Do I really need to have a definitive diagnosis or can I just continue addressing any symptoms? Essentially I just need to address the symptoms and be aware (and keep my gp and hem/once aware) that SS may be a factor in my overall health.

I have had some tearing of my cornea that seems to resolve each time with no scarring. I have dry mouth, particularly at night and my dentist is on top of it. Fortunately I do not have the joint pain. Nor have I started any treatment yet.

Thanks again

Jemorgen

[marcyh]

Newdawn has given you some info about the autoimmune/Sjogren's link to lymphoma (which includes CLL). I'll add my own experience and some ways to treat the symptoms.

My dry eye problem started before my CLL diagnosis ('06) and my ophthalmologist suggested Sjogren's. He recommended eye drops so that's all I did at the time. I also found out what a torn cornea feels like 😣. So far, I'm managing with Systane gel drops in the morning and at bedtime.

In the past few years my Sicca (dry) symptoms and various other autoimmune symptoms have ramped up, bouncing from place to place in my body. I have had the traditional testing which includes labs (ANA) and the lip biopsy (considered the gold standard for dx) which are all negative. A Sjogren's diagnosis is indeed elusive and SS sufferers say the important thing is not getting a diagnosis but treating the symptoms.

For dry mouth it's wise to invest in a water flosser (WaterPik Ultra is recommended) and I use it several times a day. Good oral hygiene is more important than ever with a dry mouth since we have to do with reduced mouth-sanitizing saliva. At night, Xylimelts (OTC, pharmacy) are the most palatable, in fact pleasant. I try to stick with one at bedtime, but I keep Biotene gel beside me for extra moisture when I wake up with cottonmouth. You can ask your dentist for samples to try. Xylitol products are pricey but don't have sugar or an aftertaste. At mealtime, food sticks so it helps to drink more - sip, swish and swallow.

It becomes a way of life, looking for the best ways to cope. I never know when the next arthritic bump will appear or the next strange symptom. It can affect organs as well so I try to be mindful. The Sjogren's Forum is a good place for more conversation and info.

All the best to you. For some, Sjogren's can become debilitating so I feel fortunate.

Marcyh

[smilemaker in reply to marcyh]

I would like to add a few more suggestions for products to ease the symptoms of dry mouth syndrome. Moisyn, CTx2 Spray, Spry Moisturizing Mouth Spray (formerly Rain), GC Dry Mouth Gel, MI Paste Plus and MI Paste One toothpaste all are designed to help with the impaired production of saliva. They provide a protective coating for teeth and oral tissues. These products all have an acidity level of 6.7 or higher which is important so as not to cause damage to enamel on teeth.

[Jemorgen in reply to smilemaker]

Thanks Smilemaker. I’m not familiar with most of those products so I’ll check them out.

[Jemorgen in reply to marcyh]

Thanks Marcyh! It’s good to get affirmation that SS is about managing symptoms. I’ve already adopted many of your suggestions, such as Systane gel drops and the xylitol mints. I’ve not been overly fond of the xylimelts but they live beside my bed for occasional use. There’s another xylitol product I get - tiny mints - that I use more often. I’ll give some thought to the Waterpic.