New nephrologist & startling new advice

[Athena]

I have just seen a wonderful new nephrologist. He has confirmed the dreary picture that there are no new treatments or clinical trials that are on the horizon that can offer CKD patients a means to halt or stop progression of this dreadful disease. But he did offer something that I could try. Apparently there has been studies and an unpublished human clinical trial on the natural herbal supplement Curcumin (Turmeric). It has been shown to halt liver fibrosis and there is now some evidence that it may also in a similar way help attenuate kidney fibrosis. He didn't specify any doses or any other specifications. I am now planning to see my trusted pharmacist for some advice about how this may best taken. But the Neph said that it is considered quite safe.

Any advice, experience or thoughts on this?

[kickingandscreaming]

I've been taking it for years and have no signs of fibrosis attenuating.  It is a very good anti-inflammatory and has many other medicinal properties.  But it is very un-bio-assimilable, so make sure to get a version that is.

[Simon Dog]

There is a trial that shows some promise for slowing down FSGS, although odds are that is not what you have.

nephrologynews.com is an interesting site, more targeted to professionals so the articles are not dumbed down.

A rather amusing article is the analysis of what workload a neph has to carry to meed the goal of $500K net annual income while taking 9 weeks of vacation a year.   The way I read the article it is impossible to keep up the suggested workload, and most nephs will have to settle for $350K or so a year.

[solid98]

A rather amusing article is the analysis of what workload a neph has to carry to meed the goal of $500K net annual income while taking 9 weeks of vacation a year.   The way I read the article it is impossible to keep up the suggested workload, and most nephs will have to settle for $350K or so a year.

Figures. Pre Dialysis, my neph visits were 40-60 minutes. Now that I'm doin' the PD, I can't get more than 3 minutes total with him on clinic visits and have been told to never try to call his office to schedule an office visit.

[Simon Dog]

Figures. Pre Dialysis, my neph visits were 40-60 minutes. Now that I'm doin' the PD, I can't get more than 3 minutes total with him on clinic visits and have been told to never try to call his office to schedule an office visit.

Now that I am on D, I work through my clinic or by contacting the neph directly.   The only time I deal with his office is if I need help from his secretary scheduling some sort of test.     The exception was one time I was called to his office so he could check a wound (non-dialysis, but it was blocking fistula surgery).    He told me "no charge, it's included" when I stopped to pay on the way out.

[iolaire]

Figures. Pre Dialysis, my neph visits were 40-60 minutes. Now that I'm doin' the PD, I can't get more than 3 minutes total with him on clinic visits and have been told to never try to call his office to schedule an office visit.

Now that I am on D, I work through my clinic or by contacting the neph directly.   The only time I deal with his office is if I need help from his secretary scheduling some sort of test.     The exception was one time I was called to his office so he could check a wound (non-dialysis, but it was blocking fistula surgery).    He told me "no charge, it's included" when I stopped to pay on the way out.

They refuse to talk to me at the nephrologists office and say everything needs to go through the dialysis nurse.  When I was trying to figure out how to get a MERSA test for travel dialysis I had hoped the nephrologists office would help but they would not.

Where that really fails is on new medicine that need pre approval or refill orders.  The practice is electronic so pre dialysis all medicine orders were done electronically. Now the nurse calls in every order, but then if a medicine needs pre approval (or a refill) the faxes the pharmacy go into a black hole at the nephrologists office.  It took about 1 month for me to get setup on my sensapar and go through the pre approval process.

[KatieV]

Where that really fails is on new medicine that need pre approval or refill orders.  The practice is electronic so pre dialysis all medicine orders were done electronically. Now the nurse calls in every order, but then if a medicine needs pre approval (or a refill) the faxes the pharmacy go into a black hole at the nephrologists office.  It took about 1 month for me to get setup on my sensapar and go through the pre approval process.

I'm going through that too now!  My Sensipar was delayed for a couple months for pre-approval red tape.  Finally I started on 30mg; it was later increased to 60mg without any problems.  But now, they increased it to 90mg and it's still stuck in red tape!  I am very frustrated - my PTH is 2500 and the doctors have started talking surgery.  But they wanted to try the 90mg first.  It has been almost a month and I still don't have the meds.  Next week I'm drawing my monthly labs.   

[cassandra]

I'm going through that too now!  My Sensipar was delayed for a couple months for pre-approval red tape.  Finally I started on 30mg; it was later increased to 60mg without any problems.  But now, they increased it to 90mg and it's still stuck in red tape!  I am very frustrated - my PTH is 2500 and the doctors have started talking surgery.  But they wanted to try the 90mg first.  It has been almost a month and I still don't have the meds.  Next week I'm drawing my monthly labs.   

When my PTH started rising again, my dose was doubled, but before I started using the 60's daily, I first did 2x30 on alternate days. That helped too. Maybe that's worth a go, as you have your bloods next week?

Love and luck, Cas

[Athena]

I've been taking it for years and have no signs of fibrosis attenuating.  It is a very good anti-inflammatory and has many other medicinal properties.  But it is very un-bio-assimilable, so make sure to get a version that is.

Thank you K&S. So what do you mean about it being un-bio-assimilable? Does that mean the normal capsules that complementary medicine makers sell is virtually useless? If so, the funny thing is that that is what I kind of suspected. If something sounds too good to be true, then it usually is! If you have any further advice about how to best consume this supplement, I'd appreciate it.

It is a popular cooking spice used in certain cultures.

[kickingandscreaming]

I use this one. http://www.lifeextension.com/magazine/2007/10/report_curcumin/page-01

[Athena]

I use this one. http://www.lifeextension.com/magazine/2007/10/report_curcumin/page-01

WOW! Thank you! But if it's so much more potent due to its increased absorption, shouldn't guys like us with kidney disease be a little bit wary or nervous? The Neph seemed to suggest that even in high doses, curcumin seems to be safe. I'm going to speak to my trusted pharmacist tomorrow about this.

[kickingandscreaming]

It's a food and has been used for eons.  You WANT the potency.

[Fabkiwi06]

I'm going through that too now!  My Sensipar was delayed for a couple months for pre-approval red tape.  Finally I started on 30mg; it was later increased to 60mg without any problems.  But now, they increased it to 90mg and it's still stuck in red tape!  I am very frustrated - my PTH is 2500 and the doctors have started talking surgery.  But they wanted to try the 90mg first.  It has been almost a month and I still don't have the meds.  Next week I'm drawing my monthly labs.   

When my PTH started rising again, my dose was doubled, but before I started using the 60's daily, I first did 2x30 on alternate days. That helped too. Maybe that's worth a go, as you have your bloods next week?

Love and luck, Cas

Keep pushing for them to raise the Sensipar before they consider a surgery. They raised mine slowly (it took FOREVER) until I was up to 90mg and it finally worked. My PTH was 1200+ but the last labs it had finally dropped to 306.

[Athena]

There is a trial that shows some promise for slowing down FSGS, although odds are that is not what you have.

nephrologynews.com is an interesting site, more targeted to professionals so the articles are not dumbed down.

Simon, thanks. I went to that site but couldn't find anything on Curcumin. Could you please find the news of the clinical trial and post it here?

[Simon Dog]

[Simon, thanks. I went to that site but couldn't find anything on Curcumin. Could you please find the news of the clinical trial and post it here?

Not sure about "curcumin", but here is the article about the FSGS trial: http://www.nephrologynews.com/investigational-treatment-focal-segmental-glomerulosclerosis-shows-promise/

[Athena]

Thanks for that Simon.

[Athena]

I think I'm once again becoming a bit of a victim to complementary medicine's grandiose advertising. I've come across some 'evidence' that curcumin may also assist in lowering LDL cholesterol or increasing HDL cholesterol. It seems this supplement seems to cure just about anything (obviously not!).

K&S, can I just ask how long you've been taking this and what stage of CKD you were at when starting it? How has it seemed to help you? I'd love to hear from anyone who's tried this supplement.

[kickingandscreaming]

K&S, can I just ask how long you've been taking this and what stage of CKD you were at when starting it? How has it seemed to help you? I'd love to hear from anyone who's tried this supplement.

I don't remember. It's been years and I've only been at Stage 5 since Thanksgiving.  I can't tell that it has helped me in any way. I take in on the hype or hope that it will help.

[Athena]

K&S, can I just ask how long you've been taking this and what stage of CKD you were at when starting it? How has it seemed to help you? I'd love to hear from anyone who's tried this supplement.

I don't remember. It's been years and I've only been at Stage 5 since Thanksgiving.  I can't tell that it has helped me in any way. I take in on the hype or hope that it will help.

That's all we can ever do - take what they say we should take and hope for the best.

But the new Neph has revealed that there is a pretty significant trial on this supplement somewhere that hasn't been published yet. I have to try dig it up somehow.

[cassandra]

I found this

http://scholar.google.co.uk/scholar_url?url=https://www.researchgate.net/profile/Leila_Malekmakan/publication/51179292_Oral_supplementation_of_turmeric_attenuates_proteinuria_transforming_growth_factor-b_and_interleukin-8_levels_in_patients_with_overt_type_2_diabetic_nephropathy_A_randomized_double-blind_and_placebo-c/links/5422524e0cf238c6ea679793.pdf&hl=en&sa=X&scisig=AAGBfm16S_fr7rcyNewMF9icuEI18uRZjA&nossl=1&oi=scholarr&ved=0ahUKEwiY4by70cvPAhVCD8AKHWGHCPUQgAMIPCgAMAA 

[Athena]

Thanks Cas! Much appreciated.