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#51
Living With Sjogren's / Re: GFR
Last post by Carolina - March 03, 2025, 04:38:42 PM
Yes, Linda is right.  I became worried when I heard some friends talking in a concerned way about a 'low' GFR.  I checked mine and is had been 'low',52, since 2010...but my research found this is normal for my age, then 68.   In 25 years my GFR has never gone lower than 52, but has often gone much higher.  In November 2024 my GFR was 90!  I'm now 83.

You didn't mention either your GFR rate or your age.  If you are 25 you may have a problem. Take some deep breaths and try not to be too stressed.

I am one those who started with Sjogren's in 2002 and then developed a host of autoimmune problems. I found the Sjogren's World forum in 2010 and it saved my sanity and I learned so much that I learned enough to diagnose new symptoms and the 'conditions' so the doctors can treat them or at least validate them.

Now I am now totally disabled.  And still I don't worry.  I'm lucky to have Medicare and a Supplement, so the 50 gram IgG infusions I have every 4 weeks, billed at $27,000 each time, are completely covered, including the nurse who supervises for the FOUR hours each infusion takes. Fortunately Medicare even pays for the nurse to come to my own home!

Did Sjogren's cause this?  NO.  But my body went on to develop many rare autoimmune problems.  Autoimmune problems like to 'invite' their friends to the party, but this is fairly rare.
 
Relax, enjoy the trip.

Elaine

#52
Living With Sjogren's / Re: GFR
Last post by Linda196 - January 13, 2025, 04:07:36 AM
This is a good example of not assessing your health based on one isolated lab value. There are a number of things that can lower GFR(glomeruler filtration rate) and the most common are age and gender, to the point that ranges of normal are sometimes given in altered scales based on age and gender.
Men
Men have a higher GFR than women, with a mean of 100 mL/min/1.73m2 until age 35. After age 35, GFR declines linearly, at a rate of 6.6 mL/min/1.73m2 per decade.
Women
Women have a lower GFR than men, with a mean of 88.1 mL/min/1.73m2. After age 35, GFR declines linearly, at a rate of 7.7 mL/min/1.73m2 per decade.

A lowered GFR on it's own, in the absence of any other altered renal (Kidney) values, isn't diagnostic, but in the presence of things like protein in the urine or symptoms of renal disease, it could mean early kidney disease and should be followed up.

There are also a number of things that can lead to false low values ( the eGFR is an estimated value) like large muscle mass ( body builders and atheletes ), recent increase in exercise, a diet high in protein, or sometimes even the time of day a blood sample is taken can affect the GFR calculation.

Having said that, precautionary measures like increased fluid intake and non-nephrotoxic diet are always a good idea, as long as you don't overhydrate and cause imbalance with electrolytes.
#53
Living With Sjogren's / GFR
Last post by lighthouse33 - January 12, 2025, 06:03:49 PM
My GFR is reduced. My nurae practiinerfound this with regular blood test. From what I've read it can be associated with Shogren's kidney disease. I will discuss it with my rheumatologist in June. So it looks like the Sjogewn's may be attacking my kidneys. I am to increase my hydration and avoid nephrotoxins. 

Also just had my six month vision exams. Didn't do good on the visual field test. And I'm now borderline for glaucoma. Hr said he would probably start me with medication for it. I assume he will in 6 months.

I've been pissed off since getting the news. I finally had my life where I wanted and now this.
#54
Living With Sjogren's / Re: Omega 3
Last post by Scottietottie - January 07, 2025, 04:56:06 PM
Hi  :)
My ophthalmologist advised me to take Omega3 capsules every day.
Take care - Scottie  :) 
#55
Living With Sjogren's / Re: Methotrexate Injection, wh...
Last post by Carolina - January 03, 2025, 11:16:53 AM
I had methotrexate injections for about two years.  I had no apparent side effects.  The reason for the Methotrexate is that is allows you to taper from prednisone (that's one of the uses of methotrexate).  Unfortunately, my liver enzymes became elevated which is a sign that my liver was affected.  I did take the folic acid, but that liver problem continued, and I stopped the methotrexate.
.
I now take Leflunomide.  Leflunomide is in a class of medications called disease-modifying antirheumatic drugs (DMARDs). It also may affect the liver, but it doesn't seem to bother me.  I am withdrawing from the prednisone very nicely, which is why I take it. 

Many many people take methotrexate very successfully.  You're in the right place for support and information, Debbi

Elaine
#56
Living With Sjogren's / Re: back soreness, nausea and ...
Last post by trc1962 - December 30, 2024, 06:54:37 PM
Hi, I do have reflux that comes and goes and when it is active I usually OTC to help, but occasionally take a preventative that is a prescription. I do not have heart issues, but I realize that back pain can mimic heart issues so I will see my primary to rule that out. I do not do much caffeine, no coffee and only herbal tea usually. I think too I take nortriptyline in a small dose and I was off it a few days while it was refilled, and the pharmacy screwed up and it was delayed. Nortriptyline helps with pain and perhaps not having it ramped up my pain some. Thank for the input!
#57
Living With Sjogren's / Re: back soreness, nausea and ...
Last post by Linda196 - December 28, 2024, 03:03:22 AM
I do have a couple of questions for you, and remember we aren't able to diagnose, just make a few suggestions based on personal experience.

Do you have any history of gastric issues like reflux or gall bladder?
Are you taking any "stomach meds" like antacids or acid blockers?
What's your caffeine intake like?
Do you have any cardiac history (symptoms like this can be caused by cardiac problems but are usually more sudden and intense, but can be "nagging" in the case of previous heart problems)

Also, remember that women with heart disease present differently than men, and the symptoms can often be almost interchangable with those of gastric problems and should probably be checked out with your doctor.
#58
Living With Sjogren's / Re: back soreness, nausea and ...
Last post by trc1962 - December 27, 2024, 09:27:45 PM
I have done some reading myself and I think it might be myofascial pain syndrome. It helped when I took a hot shower. Hopefully it improves in the next couple of days. The discomfort can be bad and I will need to not get over tired and stressed or it may move in long term.
#59
Living With Sjogren's / back soreness, nausea and fati...
Last post by trc1962 - December 27, 2024, 06:26:12 AM
Hi, hoping someone can give input to what I am dealing with. For the past few weeks life has been too busy. Im a teacher, Christmas and everything piled on and I just kept pushing. I have felt this weird exhaustion that sets in late in the day, usually after dinner and I feel nauseas, chilled and achy, when I go to bed I feel better and somewhat rejuvenated by morning. I am now on Winter break and it has worsened, I also have a tender area on my spine between my shoulder blades and it feels warm and again the weird nausea, muscle pain and fatigue. I have been awakening at 5 am sometimes, which is frustrating as I can sleep in some. Today I woke up because the sore area on my spine was bugging me. Any ideas?
#60
Living With Sjogren's / Omega 3
Last post by araminta - December 17, 2024, 04:34:43 AM
Just posting to say that I think this has made a difference to my eye dryness.   I am vegan so never eat fish, however several months ago I started taking algal oil, which is rich in Omega 3.   My eyes used to end up red every evening, however they are much better these days.  I still use eye drops (Evolve), and Xailin at night.   However I think the algal oil has made quite a difference.   Just mentioning this in case some of you might not be getting enough Omega 3 in your diet.

I hope you all have a happy and peaceful Christmas.