My list of questions

I saw my rheum today for our usual appointment. Last month was very rough as I tried to recover from an illness that prevented me from eating and drinking. I was treated for dehydration for the third time this past Monday at the local infusion center after my neph freaked out over my condition. They ran a ton of lab work on. Weds and sent it to my rheum for today’s visit.

Here’s my questions:
I am really positive I was in a flare a few weeks ago when I had crushing fatigue and couldn’t walk across the room without needing to rest. She said my markers do not indicate that my Sjogren’s is active. Can you experience flare symptoms and not have it show on labs?

Have you ever heard of a marker that says you have a tendency to allergies? I have Had this run before it was never positive until this week. With Sjogren’s being an autoimmune disease could this have recently changed?

I know I had another question but I can’t remember it. Maybe one of your responses will trigger the thought.

Hi Cassi… sorry to hear you are going through it still but I am glad to see you here. I am going to pass along what the docs have told me for those things…..not sure if it will be totally on-point to what you are asking but I hope it helps.

First, you can definitely have no markers and be in a flair up. I've totally been there. Also, as far as RA levels, etc SS can be present & active without those levels being elevated. Its a side note but people should know that in primary SS specifically, if you have an elevated RA and it suddenly drops to nothing, it is an early warning indicator to start looking out for lymphoma. If you always run at a 0 (like me) you have no early warning and have to really rely solely on knowing your body and calling attention to symptoms. Its def more dangerous.

As for allergies, I have never heard of a marker for tendency to allergies. i have had the blood workup done that tests a whole slew of allergens and that says a lot but not one particular marker. My allergy/asthma doc has said that a) being as they are both autoimmune, allergies and SS can trigger each other and b) odd pop up issues like rashes, etc are very common for the same reason. I have personally found that I didn't start with asthma and food allergies until after SS symptoms started. And my seasonal allergies (life long) have gotten worse over the last several years too. I also have more issues than ever with contact reactions. I can't imagine anyone saying your system can't change when it comes to allergies. Especially being a Sjoggie.

I am relieved that your Neph pays so much attention. We all need at least someone on our team like that. Hope you are doing better now!

Thanks enjoylife
I just remembered the third question. I had two cat scans of the abdomen last month. One was done the first night I was in the hospital and they gave me 4 glasses of barium(I think). The second was done over one week ago and I was only given two glasses to drink. I can’t have IV contrast due to my advanced kidney disease. In fact I was told that this kind of test was contraindicated in patients like me for this reason. Without the contrast results are not reliable.

Well, I picked up my hospital records to give to my GI doc and sat down to look over the reports. In both CAT scans I was told they were negative for anything wrong. To my shock the first report which I was told was negative talks about my shriveled kidney which I already know, an enlarged liver, spinal stenosis and a few other things. None of this was mentioned in the second scan. My first priority is to resolve my GI issues with my new GI doc who is a professor at the local med school. If anyone can help, she can

But, has this happened to any of you that you learned of info that you should have been told?

I have heard more than a few people here mention things like that ….major issues being glossed over, not mentioned or left out entirely. I will let them share directly but sadly, you aren't alone in that. I sincerely hope the new GI gets it together. The list of issues you mentioned def sound like they need to get to the bottom of things for you.

Hi Cassi,

Sorry you're not getting far with this. I'm sorry but I just don't have enough education to answer your questions. In my opinion, this is a question for someone who has gone through nursing school or med school. We have members who have accomplished both and I hope that they can respond to you.

I hope you can get this sorted out very soon.

Wishing you well,


Yaa.a.a! I was several visits later told, that, by the way your labs are positive for MCTD also. There is no real follow though for the patients directly. They are all so busy crossing there t-s & dotting their i-s in your file they forget to tell you. Only what they are allowed to prescribe to is relevent. Hisss… shame on the doctors!

Well said Sally Medina :slight_smile:

My lab results are always different , my thyroid is low… Whites are high or low… ANA and SSB and SSA are always positive… Vit. D and anemia alwaus show low … But my labs are like ping pong ! Ughh its just soo unfortunate that there isnt any easier way to figure this crap out… I hope it gets better for u with your new GI …

I'm sure that your nephrologist is watching your potassium and sodium levels. Low levels of either of these can cause severe fatigue like you had.

Can I ask..what is MCTD?