I know you appointment was yesterday and I was wondering how it went for you. I am sure you are feeling pretty wrung out with all the travel and the stress of trying to figure all this out! Know you have loads of folks pulling for you here and please update when you are rested up.
I hope you are feeling my wishes for strength and energy as well as a lighter path for you to follow!
Ditto..............And another DITTO!
Ditto 4 I heard from our friend earlier today.. She is quite tired and has been run through the gamut of testing.... I'm sure she'll update when she gets a chance... I believe tomorrow she will travel home again...
Shug... Thanks so much for sharing all of this.... I appreciate you letting us in on one of the things that can potentially happen due to this disease.. What we need to fear! if you will... and why we need to medicate.. I will honestly say that I was seriously considering seeing how I would be without any meds... I've had RA all my life.. and for the most part had no need to heavily medicate before 2007.. I had some bad days.. and some destruction but all minimal... and I seriously was working toward convincing myself that I could get by without it once again... Shug... Thanks so much for sharing all of this.... I appreciate you letting us in on one of the things that can potentially happen due to this disease.. What we need to fear! if you will... and why we need to medicate.. I will honestly say that I was seriously considering seeing how I would be without any meds... I've had RA all my life.. and for the most part had no need to heavily medicate before 2007.. I had some bad days.. and some destruction but all minimal... and I seriously was working toward convincing myself that I could get by without it once again...
I have firm diagnosis: secondary renal amyloidosis. My right kidney is worse than my left. I have a hæmodialysis port (inserted yesterday), and will begin HD 3X week. Meanwhile, I have had a cardiac catheterization, which, thankfully, did not demonstrate any sign of amyloidosis, fine-needle liver and thyroid biopsies, and nearly every scan, x-ray, and gamma-blast known to modern science.
According to the physicians, amyloidosis secondary to RA, is caused by unmoderated inflammation. Then, as the renal disease progresses, the inflammation becomes even more difficult to moderate. I am in the “early stage” of the renal disease, which I am told is the good news. Thus, the first order of business, so to speak, is to get inflammation under control. I have has a couple of loading doses of IV dexamethasone, and will have a couple more, and beginning on Wednesday will be taking 80 mg of prednisone for 8 days; 60 mg for 6 days; 40 mg for 4 days, and then 20 mg for 20 days. Once a week blood tests will be drawn and if the inflammation markers are not decreasing then I have a standing order for IV dexamethasone and enough twenty mg prednisone tablets for 30 days at 80 mg should that be necessary. The “team” said that more than 80 mg of corticosteroid should be given IV, so I am bravely supposing that once the taper hits 20 mg/day that my inflammation markers will be in an acceptable level.
Enbrel is the drug of choice for treating renal amyloidosis complicated by RA AND for RA complicated by renal amyloidosis. I had my first 50 mg injection on Friday. I will continue with the Arava, but drop the MTX for at least 90 days, and discontinue the Plaquenil. I have spoken with two different nutritionists and admit to being more than a bit overwhelmed by the constraints of a low protein, low ash diet. Or, as the one nutritionist said, “This in not a die-it, it is a live-it.” I am sure that once I have been able to mentally digest “everything” that has taken place these last few days, the live-it will be less befuddling.
I send each of you my very best wishes for a wonderful day. Cheers, Shug
WOW, Shug - you've joined me on that bronco ride. Thankfully, it was caught early. Many times there's no warning signs. What symptoms were you having? A low protein diet would be very difficult to follow. Will a low protein diet cause other health issues? I'm assuming you can have some protein daily, how much? I'm sorry, I know I'm full of questions but it's that medical devil I have living inside my brain! If the Pred. makes you grouchy and sleepless we're always here for you. I love the nutritionist's definition of diet....great one liner to get the patient's attention. Here's a toast to beans......LindyGoodness Shug-best of luck with your treatments. Sounds like you will be quite busy for awhile- hope it's all successful for you. How are you feeling?
[QUOTE=LinB]WOW, Shug - you've joined me on that bronco ride. ... A low protein diet would be very difficult to follow. Will a low protein diet cause other health issues? I'm assuming you can have some protein daily, how much? I'm sorry, I know I'm full of questions but it's that medical devil I have living inside my brain! If the Pred. makes you grouchy and sleepless we're always here for you. I love the nutritionist's definition of diet....great one liner to get the patient's attention. Here's a toast to beans......Lindy[/QUOTE]
Low protein is, for starters, 30-35 grams/day. I am going to start taking a keto-amino acid supplement and will be monitored closely for any protein deficiency. Let me see if I can format a very short list from one of the handouts I was given…
meat - 1 oz 10 gms
cheese - 1 oz 10 gms
black eye peas - 1/4 Cup dry 9 gms
kidney beans - 1/4 Cup dry 9 gms
pinto beans - 1/4 Cup dry 7 gms
pasta - 2 oz uncooked 7 gms
soy milk 8oz./ 140ml 6 gms
peas - 2/3 Cup frozen 5 gms
potato - 5.5 oz 4 gms
bread - 1 slice/oz whole wheat 3 gms
rice - 1/4 Cup uncooked 3 gms
corn - 2/3 Cup frozen 3 gms
[quote]Thankfully, it was caught early. Many times there's no warning signs. What symptoms were you having? [/quote]
This saga actually began a few years ago with an elevated BUN and serum creatinine. In short order, I have some lung congestion and lower extremity pitting edema. I saw a nephrologists who did renal biopsies and the diagnosis was a rather non-specific “membraneous nephropathy”. I responded well to a short course of IV and oral corticosteroids and once I started on MTX and Plaquenil my kidney function was improved as the inflammation came under control. (or so I thought...)
A few months ago I again had an abnormal serum creatinine and elevated BUN. I discontinued the NSAIDS that I had been taking and did two 24-hour urine tests that were marginal. I saw the nephrologists who did an ultrasound, ordered weekly blood and urine tests and put my status as “watch closely”. When I was in Mexico, and upon retruning, I started having lower extremity edema, my blood pressure skyrocketed and in the space of two weeks my total cholesterol (a hallmark of renal amyloidosis) went from 160 to 220 to 680. The nephrologists scheduled me for biopsies and, as ‘they’ say, the rest is history.
[quote]I'm sorry, I know I'm full of questions but it's that medical devil I have living inside my brain! [/quote]
Lindy, like you, I have so many questions about this whole situation. In answering questions, I am given the opportunity to examine what I think I know, what I should know, and determine what I have not yet learned. Asking and answering questions is, in my experience, the prime learning tool for both asker and answerer. I may not answer immediately, but I will answer to the best of my ability.
Cheers!
INFLAMMATION seems to be the culprit in all of the RA complications. All the more reason for everyone to keep fighting for the medications that keep inflammation at bay. I have to keep remembering my mantra, "I fear RA more than I do the drugs".
Wouldn't it be wonderful if RA 'played by the book' and gave each of us fair warning and a concretized path to trod? I *think* that the comorbidities of RA are at least as frightening as the RA itself. On retrospective, even more frightening.
Those potentialites are, or at least should be, the motivating factor is seeking the most potent therapy suited to our various 'conditions' and heeding the messages our bodies send to us---if inflammation markers are not decreasing and erosions are occuring, it is time to seek a new or a additional therapy for getting the inflammation under control. Sooner is always better than latter, but if it is latter be aggressive; very aggressive!
Inflammation, as Lindy points out, is the scurge of RA. I have learned that the hard way. If my experience can forewarn even one person and encourage them to begin or to maintain ADEQUATE therapy, then the experience has not been wholly personal nor fully particular.
[quote]What WAS I thinking??? Oh Shug, blessings dear one. What you've written is so true. Inflammation is the scruge of RA and many of us are perfect examples of what inflammation can do to our organs, not just our joints.
I met early this morning with the team and was relieved to be told that the biopsies on my thyroid and liver demonstrated no evidence of amyloidosis. Yeah! I was given another stack of handouts to take home for reference (I mailed a box of other handouts and readouts home on Monday. I think I will do the same with these…)
The pulmonologist said that the nodules were “typical RA nodules” and that he did not feel that a biopsy would provide any addition information and that even a fine-needle aspiration biopsy would leave a scar and that he was more concerned about that that the exact composition of the nodules. He carefully went over the signs and symptoms of pulmonary involvement and recommended a yearly (YES!) follow up as long as I remain asymptomatic.
I “think” I have a better handle on the low ash aspect of the prescribed live-it. No nuts, no seeds, no milk (however, aged cheese is OK), limited amounts of whole grains and legumes (no more than once a week), fish rather than meat… If I had to guess, the ‘problem’ I will have is in limiting phosphorus. I keep telling myself that I am a reasonably intelligent woman and I will get this live-it under control. I need to STOP obsessing about it.
I again want to thank all of you for your from-the-heart support. I wish I had the words to tell each of you how much your care and concern mean to me.
Prosit! Shug
YAY!! I haven't said much but I have been following your "saga" and am very relieved and happy to hear your good news. All in all going forward.... this is pretty good, Shug!! I know you have your kidney issue to deal with as bad as that is..... but to know that nothing has happened in other organs or is "normal for RA, aka nodules" We can be pleased..
Linccn, thank you so much. Yes, there has been more good news that the other kind and I too am very relieved and happy and thankful.
It is so good to be home...it 'feels' like I have been gone for a very long time rather than just a few days. My canine companions gave me a heartfelt welcome and Bob momentarily dropped his taciturn demeanor and we cried in each others arms.
My Monday, Wednesday, and Friday HD sessions have been scheduled and just a few moments ago the dialysis center called to confirm. Unfortunately, the only times they had available were afternoons, but as Lindy said, I have new books to keep my mind occupied and keep me awake. My sister bought me a portable 'disk player' and a handful of books-on-disks (which are still at the bottom of my backpack) that will, I am certain, prove to be a bonanza in that the earbuds will help to shut out the constant background noise and I will be able to wear my darkest shades to tame that horribly intrusive clinical flourescent lighting.
[quote=babs10]... but to know that nothing has happened in other organs or is "normal for RA, aka nodules" We can be pleased.[/quote]
And we are! Well-pleased and confident.
Thanks everyone, Shug
I love reading good news! It's so good to finally be back in the loop and then to read this....Well, it just made my day
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