Sjogren's Flare with CKD

[Dana66CKD]

Anyone have these diagnoses? I thought was managing ckd stage II okay, but with Sjogren's flare up recently, the HTN episodes have begun again. Was doing okay with diet, then spike in pressure since 4/23/24 has changed everything! Current diet restriction & bp med, not effective for bouts of HTN & tachycardia; freezing cold, fatigue, insomnia, joint pain and swelling below eyes. Fluid retention is sign of further kidney function decline. With Sjogren's, I have inflammatory marker elevated always. Anyone have Sjogren's and are you managing both okay. Can't seem to get a handle... losing faith today.

[Darlenia]

I feel for you. Autoimmune conditions can be so unpredictable and hurtful - turning on healthy organs. While I have no experience with your condition, I simply wish to urge you to stay in close touch with your rheumatologist as well as your nephrologist which I'm sure you're already doing. Hopefully, your rheumatologist may soon find a new way to turn off those relentless Sjogren attacks. My son has psoriatic arthritis and my daughter has alopecia. My son's condition has occasionally brought him to his knees. And even my daughter's condition also has repercussions. It would solve a lot of suffering if all autoimmune conditions had a cure. Crossing my fingers that you find relief soon.

[Dana66CKD in reply to Darlenia]

Thank you Darlenia. I had new appt. with Rheumatology. She was very thorough. We discussed treatment. She seemed surprised I wasn't on any rx for this. Just managing symptoms, but 11 years later, they are getting worse/more frequent, so that may change?My sister has RA and was so debilitated till she started biologics. In remission now, so I🙏 for her good health.

I know there is at least 1 member in this community that also has Sjogren's, but can't recall whom. I hope to hear from someone & what their strategies have been to deal with both ckd & Sjogren's.

Hope your son & daughter also stay well 🙂

[allene7]

I have Sjogerns and ckd, and rheumatoid arthritis. What's amazing to me silly me I had no idea Sjogerns could have flares. Now I know what makes sense as to why I have some of the symtems I do. However I always assume that the aches and joint pains are always RA. I'm so sorry I have no advice for you, but you unknowinglyve me some new information.

It does not surprise me that I didn't know anything. Heck it was until I joined this page I learned so much about diet etc for ckd. Had I known when diagnosed maybe my RA would not have progressed. Diet is a big deal. When diagnosed I was probably stage 3 but was not even told to not eat red meat or watch the salt and I had no clue about seeing a renal dietitian.

Doctor's need to do better!

[Dana66CKD in reply to allene7]

Thanks for sharing Aliene7. So sorry you have Sjogren's, & RA, in addition to CKD. Having flare-ups more recently which sometimes confuses me with symptoms related to ckd. What I've read on Nih.gov, is the dx with Sjogren's can later include diagnosis of RA. Our inflammation markers are usually high. The RF (rheumatoid factor) is present since both are diseases of inflammation. So not unusual to have Sjogren's & RA. Not yet officially diagnosed w/RA myself. My older sister diagnosed age 68 w/RA. She's now 72 & in remission. No ckd.

Just wanted to know what other's doing for their flares? I tried acetaminophen since NSAID's not recommended with ckd. It helped. I slept better, woke up to less joint pain. Sometimes, 1/2 tab of 5mg/hydrocodone when entire body aches. I don't like taking pain meds, but occasionally it gets rough to cope.

Glad we can learn things on this site. I appreciate everyone's experience & knowledge.

Hopeful for better days to you. Take care 🙏

[allene7 in reply to Dana66CKD]

Thanks so much for sharing. I do take 2,5mg of Prednisone and 200 mg of hydroxychloroquine 3 times a week. Not much but luckily I believe the RA is in remission.

[Dana66CKD in reply to allene7]

Those are things I'm interested in knowing. Glad to hear your RA in remission. Is the hydroxychloroquine & prednisone safe for your current stage of CKD? Are both your providers on board with these meds & your ckd?

Wishing you continued health & well-being.🙏😊

[Dana66CKD in reply to allene7]

What stage ckd are you? I haven't had any discussion with my Rheumatologist yet about treatment. Have been holding off taking any meds. Maybe it's time to consider since flares more frequent now.. Thanks for sharing.

[allene7 in reply to Dana66CKD]

Yes, doctors are all on board with what I take for RA. I'm stage 5, no dialysis yet and have been on the transplant list for almost 3 years.

I cannot tell you to take medicine or not you need to decide what works for you and what your doctors say.

I choose to take meds RA stinks especially when your having flares. There are meds that can help and slow down progression. You need to probably talk with your RA doctor to see what may or may not work everyone is different.

Good Luck.

[Dana66CKD in reply to allene7]

I realize I need to speak with my MD's, just exploring different avenues to bring up at my future appt.'s.My sister has RA, but no kidney disease, so her situation less complicated.

Anyway, thank you for sharing your experiences and good luck with transplant list.

[allene7 in reply to Dana66CKD]

Thank you for the well wishes. I hope your able to get the help and information you need, Best of luck to you.

[GFFF]

Hi

I have CKD, Sjogrens CHD, osteoarthritis and others, keeping well is a fine juggling act!

Keeping one illness under control can sometimes lead to another flaring up, have you tried keeping a symptom tracker? Sjogrens flares can be anything from a mild inconvenience to totally debilitating, leaving me floored for days. Just a heads up that during a flare, bloods always show me as dehydrated or CKD decline, these are not true readings and often reset ince the flare is over x

[Dana66CKD in reply to GFFF]

Thanks GFFF. Good idea to do symptom tracker. I will try this. Getting harder to remember symptoms after they occur. Sometimes memory & concentration from flares make all recall much slower afterward.Encouraged to hear that flares /labs can change afterward. CKD is tough enough. Hard to hear when ckd labs decline. Certainly can see inflammation contributing to decline.

Thank you for sharing your knowledge & experiences. Stay well🙏

[GFFF]

my GFR is low 40s in a flare, high 50s when not. Not sure if its because I feel dehydrated in a flare or because I end up drinking 3.5 litres a day in flares which adds pressure to the kidneys.

[Dana66CKD in reply to GFFF]

Well, I went to have labs done today and my egfr shows decline, but I'm well hydrated, so hopefully it will improve. No protein in urine though. Urine output has decreased. I feel sad, but I know I have to continue managing my diet.

I sometimes ignore the pain in my wrists, hands or hips. Seldom take tylenol or hydrocodone, try to drink lots of fluid. Wish I could tolerate that much fluid, but it just won't fit in me. 80 oz/day is all I can take. Maybe that's why I had a decline, IDK. Been adjusting to this "new" normal for only two years. It's not enough to say it's been a challenge. Stay well long as you can GFFF.🙏

[Dana66CKD]

Update on Sjogren's flare: appears to have resolved for now, urine output about back to as before; nausea, GI distress gone. Egfr increased , so flare-up's do affect ckd.Thank you GFFF for sharing your experience with this particular issue.

Be well everyone.