Questions for People with Sjogren’s Syndrome

posted in: chronic illness | 4

Day 19 – Questions I have for other patients

Immunity © 1994 Jane Waterman
Immunity © 1994 Jane Waterman

I suspect this is one of those really important posts where there are actually lots of questions, but I’m too brain-foggy to remember them all. So I’m going to post a few questions, and give myself permission to come back to add more as I think of them.

As a bit of background, I first became ill in 1990, and had my first clear symptoms in 1991. I didn’t get diagnosed until 2002, mostly on the basis of symptoms, inflammation and a Schirmer’s test – ANA and SS-A/SSB test were negative. I have Sjogren’s with wide-ranging systemic symptoms, and fairly early onset at 24 years old. I’m now 46.

Question 1: Did your illness keep getting worse as you got older, or did it stabilize? Did it only stabilize with medications?

I seem to have surges in disease progression. From sinus infections, to difficulty getting enough air while exercising, to chronic fatigue, to pain throughout my joints, to bronchitis/pneumonia, to UV sensitivity, to cutaneous vasculitis, to this constant pain in my right side the past 18 months: can I expect the Sjogren’s to keep getting worse?

Question 2: Can you identify a specific event or illness that triggered the onset of your Sjogren’s? What was it?

In mid-1990, I got a bad case of food poisoning from eating fish in a restaurant. A GP called it giardia, without running any tests. I was really sick with nausea and abdominal pain for 8 months and never recovered. Later, reading the story of Laura Hillenbrand’s struggles with CFS, I was astonished how much her story resonated with mine.

Question 3: Are you unable to take the most common treatments like Plaquenil due to side effects or because they simply don’t work? Are you unable to do anything in terms of medication to help ease the symptoms of your disease?

Plaquenil (and many other drugs including Prednisone) seem to greatly exacerbate my depression, and I find it impossible to get close to a therapeutic dose. I have come to a growing acceptance that there are no pharmaceutical treatments that can help reduce my symptoms, much less cure the disease.

Question 4: Even if you have clear evidence of the disease (including definitive blood tests) do you still have trouble making people understand the severity of your disease? Even when you explain things, do people just expect you to snap out of it and carry on as normal? What do you say to those people? Do you talk about your disease to other people or keep it to yourself?

I had an opportunity last year to give a talk on, what is to me, the importance of creating art to cope with disabilities. Even after explaining the limitations, including the body-shattering fatigue, people’s feedback seemed to imply that I’m just tired and if I rest I’ll be able to push through and do everything as normal.

Question 5: When I was first tested for the SS-A and SS-B antibodies ten years ago they  were negative. Is there a chance these tests will have changed since then, given the progression in the disease? Have you been diagnosed without these antibodies?

It’s just nice to get validation that there is more than one way to be diagnosed with Sjogren’s.

Question 6: Is your white blood cell count low or high? Do you have any diagnostic tests that are out of range, but different to what others seem to experience?

I’ve had an elevated white blood cell count since I got ill in 1990. When I read the stories of other people, many report having a low white blood cell count. I’m told that high means inflammation, but I’m confused why it’s different to so many others with similar symptoms. I’ve also always had high ESR and CRP, as well as elevated beta and gamma globulins.

Question 7: Do you have an elevated serum protein IgA? Is that indicative of kidney involvement (e.g. nephritis) or something else? Is this common with Sjogren’s syndrome?

Earlier this year I was given various tests to ‘rule out’ lupus. Most of the tests were negative (such as ANA and DNA ds). My serum protein IgA came back high (nearly double the upper end of the normal range) and the doctor never explained what it meant. They also sent my blood off to be tested for Lyme. I never heard back so I assume it was negative.

Question 8: Have you experienced pain in your kidney region, and did/does it relate to your Sjogren’s? What is the pain like, and do you have any ideas what I should look for, or if there’s any chance of remission from the constant pain?

I’ve had a sharp pain in my right side (well below my ribs) for about a year and a half. It is always there, and I feel like I’ve been kicked or punched in the side. I’ve started showing some increase in blood and proteins in my urine, but the doctors insist that it’s normal, and even appropriate for my age. Given the coinciding pain, I’m worried about some kind of kidney involvement from the Sjogren’s, even though the doctors say there isn’t any. The specialist said the blood/protein leakage would have to be ten times greater before they’d do a kidney biopsy. I’m 46 and I don’t want to have kidney damage because the doctors are always saying it’s normal. I’ve had that kind of negation before and it nearly killed me when I had internal hemorrhaging with ovarian cysts. I’ve had a long history of UTIs with the Sjogren’s, and what I thought were kidney infections with similar pain in the past that went away with treatment with alternative herbals (yellow dock). Yellow dock doesn’t work anymore on this type of pain.

Question 9: Do you still have some saliva flow? DO you have areas of your mouth that are moist and others that are dry? When you have to have dental work, do you find your mouth gets flooded with saliva?

I’ve always had strong ‘muscles’ in my jaw, but I wonder if the inflammation is actually the parotid gland swelling. I seem to produce saliva under my tongue, but not along the sides of my tongue. The last part of my question is prompted by a visit to the dentist yesterday. The strain on my jaw as well as having all those tools in my mouth seems to make me salivate. I don’t think they believe I have Sjogren’s because of all that saliva when I visit!

Question 10: Have you made any dietary changes that have greatly improved your Sjogren’s symptoms? What changes have you had success with, particularly with extreme fatigue when food preparation is difficult?

I tried a gluten-free diet once for several months and found some improvement in my symptoms, but found it was quite difficult to follow. Pre-packaged food with lots of preservatives really increase the Sjogren’s symptoms. My greatest barrier to improving nutrition is, as suggested above, finding the energy to prepare my meals from scratch.

Well, I’ll probably think up more questions when I’m not so tired, but these are the ones I can think of for now. I appreciate any insight other people with Sjogren’s may have on these and related questions.

Blessings,
Jane

4 Responses

  1. Annette McKinnon (@a
    | Reply

    I just found that my Gmail has decided that even some of my own posts are spam so I just saw this post. I wish I knew the answers to your questions. My Sjogrens is mostly characterized by dryness and not by systemic manifestations. The dryness is all over. I use pilocarpine (salagen) to be less dry. Without it my voice starts to diminish and I cough and choke a lot. For my eyes I am one of the people Restasis works in, along with a lot of other tips I found in dry.org.

    Do you ever massage just under your TMJ to stimulate saliva? At a conference I asked Dr Yepes if salagen would keep me from losing function in salivary glands and the answer was no. I did hear that there are usually some sal. glands spared. Up to 50% can still be functional and yet you feel very dry

    My sjogrens moves slowly and I think Humira slowed it somewhat

    I use hormones too. Dr Ann Parke spoke at one of the annual Sjogren's conferences and touched on this subject favourably so I am less concerned about the effects of hormones than I might be. That also keeps the UTIs down.

    My friend Lee says for Q5 that your tests may change over time. She also says that in some people (Q9) the saliva can thicken to the point where it won't flow but I think that is slow to happen

    • Jane Waterman
      | Reply

      Thanks for responding, Annette – I really appreciate it. It seems fairly random as to what will trigger Gmail to spam a mail.

      It sounds like you are on several treatments for the symptoms. I think I am a bit of a disadvantage in that my rheumatologist retired, and the internist I'm seeing here, while knowledgeable does not really think of treating symptoms. I've had so many bad experiences, I can't say I'm keen to see another doctor, so I'm just coping with over the counter stuff.

      Interesting that some saliva glands are spared. That seems to be my experience. I do have thick saliva under the tongue, and the sides are where it's dry. Do you still have some saliva production? I will try doing the massage – I'm always sore there so I tend to do that, but maybe I'm not doing the right thing – I'll google it. :)

      I had a surgical hysterectomy and was supposed to be on HRT, but the pill caused a lot of the problems that led to the emergency hysterectomy, so I wasn't keen to try it again. I know I need to do something as I'm probably too young to be losing bone density. Interesting you say it keeps UTIs down. I did not know that. I've had them my entire reproductive life. Infections seem to flourish in a dry environment.

      Thanks for asking your friend about some questions, and many thanks for your input too. I really appreciate it!

      Take care!

  2. Beth
    | Reply

    Question 1: Did your illness keep getting worse as you got older, or did it stabilize? Did it only stabilize with medications?

    I was diagnosed about 4 years ago, looking back I have had some symptoms for over 20 years (54 now). The only RX I take is restasis, I'm holding off for as long as possible on other drugs. I have been having worse symptoms as time goes on, defiantly not stable.

    Question 2: Can you identify a specific event or illness that triggered the onset of your Sjogren’s? What was it?

    I was under a great deal of stress when I was diagnosed, although I think the disease began many years earlier. I was diagnosed after my daughters death (car accident)

    Question 3: Are you unable to take the most common treatments like Plaquenil due to side effects or because they simply don’t work? Are you unable to do anything in terms of medication to help ease the symptoms of your disease?

    I have not taken any of the common RX, I am able to use the over the counter products for dry mouth and eyes without any problems.

    Question 4: Even if you have clear evidence of the disease (including definitive blood tests) do you still have trouble making people understand the severity of your disease? Even when you explain things, do people just expect you to snap out of it and carry on as normal? What do you say to those people? Do you talk about your disease to other people or keep it to yourself?

    I talk to a few people about my disease, I feel like it is not taken very seriously because I appear to be the picture of health. I've tried to express my concerns over the seriousness but I don't think the people I talk to think it's really any big deal, at best just a nuisance I have to deal with.

    Question 5: When I was first tested for the SS-A and SS-B antibodies ten years ago they were negative. Is there a chance these tests will have changed since then, given the progression in the disease? Have you been diagnosed without these antibodies?

    NA, I have the antibodies

    Question 6: Is your white blood cell count low or high? Do you have any diagnostic tests that are out of range, but different to what others seem to experience?

    My Rhumy just sent me to a Hematologist because of a Low WBC. It has been slightly low from the time of diagnosis, but had been even lower for a few months. By the time of my appointment with the Hematologist, my WBC was back up to the low normal. My Monocyte percentage was the only thing still lower then the normal range

    Question 7: Do you have an elevated serum protein IgA? Is that indicative of kidney involvement (e.g. nephritis) or something else? Is this common with Sjogren’s syndrome?

    I am at the high end of normal, I have not discussed this with my Dr.

    Question 8: Have you experienced pain in your kidney region, and did/does it relate to your Sjogren’s? What is the pain like, and do you have any ideas what I should look for, or if there’s any chance of remission from the constant pain?

    NA

    Question 9: Do you still have some saliva flow? DO you have areas of your mouth that are moist and others that are dry? When you have to have dental work, do you find your mouth gets flooded with saliva?

    I do still have some saliva flow, sometimes it seems like plenty. Yes, some area's feel moist and some dry, it can also change min to min, hour to hour. Yes my mouth has filled up with saliva with dental work.

    Question 10: Have you made any dietary changes that have greatly improved your Sjogren’s symptoms? What changes have you had success with, particularly with extreme fatigue when food preparation is difficult?

    I have slowly been implementing changes to my diet, I would like to be gluten free and rid of all processed foods. It is a big problem for me to come home after work and cook. I am going to have to come up with solutions to this, maybe more cooking on the weekends, or more help from my husband. My husband is willing, I just don't have the energy to teach him.

    When I am eating mostly whole real foods I notice that my pain is much better, I have not really noticed a difference in fatigue. My pain is in my hips and some tendons.

    • Jane Waterman
      | Reply

      Hello Beth,

      Thanks so much for answering the questions I posed. I find it extraordinarily helpful to hear how other people experience and manage Sjogren's.

      First, I'm so sorry to hear about your daughter's death. I can only imagine how difficult that was. *hugs* It certainly fits with what I've heard that often a "shock" happens that triggers the full blown illness. Like you, I'm sure I had symptoms earlier than the food poisoning that triggered it.

      In some ways I think it's helpful to be able to cope without meds if you can. The more knowledge I get, the more I realize that there's no such thing as a 'simple' med. They all seem to have side effects you don't anticipate.

      Indeed, people do seem to think it's just 'dry eyes and mouth', but don't realize the systemic forms can make life very difficult, even if you are able to put on a good face.

      Interesting – I've noticed low WBC seems to be more common. I've always been high, and sometimes very high. Certainly there are a lot of things that can affect WBC. Thanks for the info about IgA. My IgA is double the high end of the range. From what I've read IgA is associated with the mucous membranes, which I guess makes sense for Sjogren's.

      It's interesting that eating better doesn't help fatigue much, but it's good news it helps your pain! I work from home part-time and I still have trouble cooking. It's a real catch 22 if you don't have the energy. I'm going to try cutting out wheat as much as possible and see what improvement I get.

      Thanks again for sharing so openly. I really appreciate it, Beth, and I hope you stay as well as you can.

      Many blessings,
      Jane

Leave a Reply