A month ago my Primary did a blood test. My eGFR came back at 48. She decided to run a full blood test to figure out why my GFR was so low. That blood test showed a M Spike of 1.4. So , now I have an appointment with an Oncologist/Hematologist. She says I 'probably' have blood cancer.
I am doing all I can for my kidneys, diet and exercise with increased hydration. And that includes my medications.
I told my GP that I've been on 40 mg of Protonix for a minimum of 8 years and would like to stop taking it. Since it has caused kidney issues with other people. She refused to do it.
Another issue, is my previous Doctor agreed to act as a second opinion person. However, my new doctor got angry and said it is either her or him. Pick one. I told her, he was only there for a second opinion IF needed. She repeated the statement, "Me or Him !!!"
Since I have changed my diet and excerise regularly , my weight has been going down as has my BP.
My concern is if my kidney issue caused the blood issues, or visa versa. The Protonix definitely has to go.
I don't wish to get involved in doing blood cancer tests, which includes a bone biopsy, if the problem is with my kidneys.
Am scared and confused at this point.
* My wife walked out close to Christmas, and that put me into a state of stress and depression which led to a horrible diet. Pizza and cheese enciladas, and entire bags of potato chips. Which I stopped doing a couple months ago. Went with the Mediterrainian Diet. Mostly fruit, veggies and fish, tea, lots of water and exercise.
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TommyRaider
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Any doctor who refuses a second opinion in my book is inferior and I would switch. They are being very childish and it is your life. AND she refused you to come off a drug instead of looking for some other possibility to use or an alternative drug. NOPE.... gone with the wind. Just a quick search and I came up with this:
Can you take Protonix with kidney disease?
"The sudden onset of kidney problems often serves as a red flag for doctors to discontinue their patients' use of so-called proton pump inhibitors (PPIs), which are sold under the brand names Prevacid, Prilosec, Nexium and Protonix, among others.Feb 22, 2017"
Really thought about doing just that; getting away from her. However, she also said she doesn't want anyone to interfere with her steps to wellness for me. The reason why I left the previous Doctor was distance, and more importantly, he NEVER refilled my prescriptions on time. Always had to experience withdrawals from clonazepam. :/
Oh my...sorry to hear that you've gone through a lot in your life. It sounds like you're slowly turning things around and moving steadily in a positive direction eating healthy, losing weight, and more. That's great! In my opinion, I'd take the advice of the primary doctor who ran the extensive labs, noticed the high M spike, and recommended you see an oncologist/hematologist. She seems to be a very conscientious and thorough doctor. I'm guessing she probably wants to check out whether that spike may be something like multiple myeloma - blood disorders like that one is well known for it's impact on kidneys. She likely brushed over your concern over your PPI since it doesn't carry the same level of threat, it's generally very low if it exists. So I would do as your doctor says and see the blood specialist as my first step. If it is multiple myeloma or related, please keep in mind that there are many treatments available starting with no need to do anything for some. If a blood disorder is ruled out, I would then move on to other issues such as your Protonix if it's still on your to-do list. If so, you may want to consult a gastroenterologist for that. In my opinion, it's important to surround yourself with a good team. For example, my hubby has diabetes which led to kidney failure, dialysis and then a transplant. His team locally consists of a nephrologist, a gastroenterologist, a cardiologist, a urologist, and more. His primary serves as a coach - referring my hubby to specialists when issues come up and occasionally serving as a backup by taking over when things fall apart. Please note - you don't need two primary doctors, only one is sufficient if the diagnoses and guidance from that person has been good to date.
I hope this gives you a sense of direction. Please know you're not alone. Many members in this community have walked through very deep waters and found dry land - some have experienced diabetes, cancers, autoimmune diseases, or something else taking aim at their kidneys. (Kidneys rarely fail on their own, something usually drives it.) You, too, are a trooper - you've already gone through much. Yet you're steadily improving your situation on multiple fronts. I sense you'll take this situation in hand too. Please let us know how it turns out for you. We care.
I would go with the "other" doctor and let the new one go. I've never taken Protonix but was on Prilosec for years. I think that is a big factor for my CKD. Drugs.com says prontonix can cause kidney problems and this is in bold print. IMHO it is YOUR choice whether to take a drug or not. She advises, you decide. Your doctor needs to learn that. I would do the blood tests she wants though as it could very well be something and better to be safe than sorry.
I see your point - the patient can indeed pick and choose the doctor, the meds, the priority of things. But is it wise? When is it wise? Many have died unnecessarily by putting more stock in their personal opinions than that of the professionals - sadly, some go "doctor hopping" to find one that finally submits. I suspect some choose not to participate. In this case, it's important to recognize that this doctor is the only one who chose the labs that showed the M spike - suggestive of multiple myeloma and set up the hematology, oncology appointment. That's worth gold. I can see getting a second opinion if something seems "off" - a doctor didn't diagnose or didn't order something and so on but I, personally, am impressed by her judgement and speediness. With regard to the PPI prescription, I really can't speak to it since I don't take it nor do I have a medical background. I agree it's always best to stay away from controversial meds. But, then again, perhaps there's a good reason for it - there might be a red flag requiring. I certainly hope it's not "casually" prescribed. I'm just very sorry to hear that yours created issues for you. That's awful when outcomes go wrong. Hugs.
I see your point, but I've had some bad doctors and experiences with them. I'm sure there are people who died by following bad advice from doctors. That's why we need to advocate for ourselves. We need to research and find what works best for us and work with the doctors as they should work with us. Personally, I have been dealing with a doctor right now that is a my way or the highway and doesn't listen to what I'm trying to say and I am about to hit the highway.
Awww! Not listening to a patient is awful. It can definitely wind with a poor outcome for you. (It almost happened to me with my eyesight.) Great patient-doctor communications should always be a two-way street no matter what. Listening is key. I'd completely understand and support you if you decide to go elsewhere.
What a lovely reply to Tommy….for us all really. I would like to add for anyone with Myeloma, that modern medicine has really come on with treatment, it is manageable and very treatable.. not curable. My lovely friend was diagnosed and lived a good life for 18 years. Which in early days we couldn’t even imagine x Keep us posted Tommy x
Thank-you for your reply. I was adopted at birth, and through Ancestry DNA , recently found my birth Mom. She has stated no one in the family ( large family too ) has ever had a 'blood disorder'. In December of last year, for senseless reasons, my wife walked out on me and that sent me into a deep depression with stress. And I didn't eat much at all for awhile, then turned to junk/comfort food.
So, am hoping that made my numbers go all over the place. First blood test indicated an infection, 2nd test a couple weeks later, no signs of infection. My RBC is a couple points low, WBC and Platlett counts are within normal parameters. The Urine test did NOT show a M spike. So...hoping...
I know, the Hematologist will be the one to make the determination of what is what. Guessing won't work. Although I do try to figure all the reasons why the Doctor is incorrect. She did tell me that she never said I had cancer 100 %. Can't say that was a comfort.
Hematologist said that she was going to run blood tests then get my numbers to normal.
I really appreciate your wonderful feedback. I think your hematologist is doing a great job - her statement that she has an interest to "get (your) numbers to normal" is exceptionally encouraging "should" the situation require that. Normal is good! And, with what you wrote, it may not need correction at all. Please keep the community informed - you see, most everyone here has lots interesting, and often serious, health issues. They will hold you up and move you forward. As an aside, I'm sooo glad you found your birth family! I cared for a family member decades ago as she went through a pregnancy and gave her beautiful baby girl up to adoption. I've often wondered about that child; her mom is reluctant to launch a search. It's sad. In my humble opinion, going full circle and getting answers to questions is incredibly valuable in finding peace and closure. Much respect for doing so. It takes strength and purpose to do so. You're an amazing man with much to offer in many areas. Stay in touch!
Wow. Your Primary is such a diva! But, she seems very sure of herself so I would definitely listen to her. See the oncologist. Take the tests she wants you to take as soon as possible.....get all that out of the way. If it's a blood disease causing your kidney problem, then stopping Protonix might not help anyway, right?, so you really need to find out what is wrong. I can understand her balking at the second opinion thing...why would you need one is the tests are definitive?
She is very sure of herself. Um..so is the other one. So hard to decide between the two. However, realize that it is the Hematologist I'll be relying on. Not either of the Primaries.
Not sure everyone would agree with what she did, which was asking me if I was religious, then praying with hand in hand. That did sway me towards her a bit, that she cared enough to do that for me. Wasn't done in a scary way, more of a be well in all ways type prayer.
Oh wow. A praying doctor would have swayed me in exactly the opposite direction. But you are right about the primary care doctor taking a back seat to the hematologist. Just get all the tests done. In the end, it doesn't really matter which doctor ordered them.
Sorry to hear this. It sounds like you could have multiple myeloma. My wife has it and it does affect kidney function to the point of it being dangerous. Is your calcium reading a little high by some chance. That is another symptom. The first step is to do a bone marrow biopsy and there are some other blood tests that aren't part of the regular CBC and CMP tests. Not trying to scare you but you'll need to get treatment if this is the cause. So it's not your kidneys causing the blood issues, it's actually the other way around.
Indeed....it's important to tackle the biggest threat. That M spike needs attention. The rest then generally falls into place including kidney management, gastro management, etc. Gotta put the horse before the cart.
The kidney management will only happen after receiving the drug cocktail prescribed by the oncologist. My wife's GFR was down to 39 and it is now 67. It was 77 a few months ago. It wasn't until she got on treatment that it started to improve. The bone marrow biopsy will indicate what type of myeloma it is and the stage. Here's a passage from an article I Googled.
Many patients battling multiple myeloma also suffer concerning complications, several of which can contribute to impaired kidney function. Up to 85% of myeloma patients experience this malfunction, which often is caused by the disease itself.
“The myeloma cells produce incomplete antibodies, also called light chains,” says Jens Hillengass, MD, PhD, Chief of Myeloma at Roswell Park Comprehensive Cancer Center. “These abnormal proteins, excreted through the kidneys, can cause damage to the kidney tissue with blockage, inflammation and fibrosis. In rare cases, the proteins are deposited as so-called amyloid fibrils, which are harmful protein fragments, leading to a condition known as amyloidosis.”
Joined together, the abnormal and normal proteins become too large to pass through the kidney’s filters, called glomeruli, which are clusters of capillaries around the end of kidney tubules. They obstruct the passages, preventing fluid from passing through the kidneys. This causes inflammation in the kidney tissue, leading to kidney damage, according to Dr. Hillengass.
The resulting damage leads to a condition called cast nephropathy, or “myeloma kidney,” which occurs in 20% of multiple myeloma patients.
“In some patients, the kidney stops functioning correctly, which can lead to the need for hemodialysis,” he says. “If the disease is rapidly progressing or discovered too late, patients can develop complete kidney failure.”
My Transplant doctor of all people put me on Protonix right after Transplant. I do have abdominal problems, gastritis, IBS. It was my other doctors who told me to get off of Protonix and take Pepcid. I was instructed to take Protonix only when the Pepcid is not working. When I have bad bouts of IBS I get on Protonix. I have fluctuations and my GFR goes to 48 sometimes. Find a good doctor that you trust and listen to them. In my opinion, medical care has gone down, a lot .
I would definetly talk to your Gastrologist before you stop taking your PPI...The reason you were subscribed this Prescription was because of your acid reflux condition...untreated, it can turn to Barretts Esophagus which is Cancer...Best thoughts for you....
Actually, I was diagnosed with Barretts Esophagus 10 + years ago. That was why the Gastroentrologist prescribed the Protonix. I'm hoping there are alternatives, safer for the kidneys. Any help I can give em, any way and any how, I've got to try.
Certainly ask...alot of newer and better Meds have came out in last 10 years...especially now that you are seeing Kidney Damage. I think alot of Doctors feel unless you ask them to re-evaluate you, they just leave things as they are
I was also taking Protonix for many years for heart burn unaware that it may have hurt my kidneys. Weight loss helped with heartburn. I also stopped strong coffee for a few years. Now I occasionally have espresso and it doesn’t cause heartburn. I am not taking any prescription medicine for heartburn now.
That coffee was freshly ground and brewed at my office. Now I am retired, but occasionally have espresso at home and am ok. Unfortunately some of the weight came back after I started traveling. Want to get as many things off my bucket list before the inevitable dialysis hits! Take care and hope your tests are good.
PPIs can so kidney damage. I would stay away from them if you can. I was pretty annoyed with my a doctor from my GP (primary care doctor) practice when she put me on them. I only found out later from researching it that they can do kidney damage. My eGFR did drop after them. I would have put up with the stomach pain I was complaining about any day rather than lose precious eGFR. Prof Austin Stack here in Limerick states that 60% of CKD is medically induced. We all need to be vigilant and double check and question anything any Doctors (other than Nephrologists) want to prescribe us. Also I agree 100% with Bassettmommer a second opinion is perfectly reasonable and any Doctor worth their salt would accept it or even suggest it.
I'm pinning my hopes on the fact that the Hematologist worked for MD Anderson for 21 years. M D Anderson is considered the best cancer treatment center in the States. And she has a small office in a small town close to me. So...more personal attention.
The previous Doctor, works for the State of Texas, the University system. Which includes MD Anderson itself. Many more patients, and not quite as personal. Really is a toss up.
As much as it irks me, what my Primary said, she isn't the Hematologist.
I was sent to the Oncologist. She ran a full set of blood tests and my eGFR came back at 64.
I had changed my diet to mostly fish, chicken, veggies and certain fruits. I also increased my hydration and exercise.
So...being told that I could not go from Stage 3 to Stage 2, I did indeed do just that.
Probably outside the scope of CKD, however, my protein spike went down from 1.4 to 1.3. Which I was told could just be differences in the way the lab processes the blood.
The Oncologist ran tests that included IgM, which came back as 1778.
To address someone elses post about a CT Scan with Contrast : The oncologist ordered just that with me. I refused to do the CT Scan with iodine, knowing that if my Kidneys were healing, why would I want to have them subjected to iodine?
The tech called the Doc who said to go ahead w/o contrast. The Scans of my pelvic , abdomen and chest area ( including organs ) came back as NO abnormalities seen.
The Oncologist is insisting I get a Bone Marrow Biopsy, but, to be honest, I'm starting to wonder if that is necessary.
I have NO symptoms.
My other blood test numbers, are actually on the low end of normal.
Excepting her office, they're a hair outside of normal.
As far as the Kidney issue, IF there was an issue as being pushed by the Oncologist, would my eGFR even go up?
My wife left in December of last year. Walked out and refused to come back. I went into a DEEP state of stress and depression. My diet was like, 12 ice cream bars or ice cream cones a day, potato chips, cheap pizza, fast food, mega amounts of chocolate bars and TV dinners ( cheese enchiladas ) - for 7 months.
I feel that that period of time trashed my numbers. I really do not want to get caught up in going to specialist after specialist. But with possible cancer or Kidney Failure...it's scary.
Still debating going back to my previous doctor.
Went to the Gastroenterologist yesterday. He said that it isn't true that Protonix damages the Kidneys. He called that information an internet myth. So..guess I'm continuing to take Protonix.
You’ve had a tough year! But I’d say you’re getting good news with the medical testing. I’d probably stay the course and finish the testing just to have baseline data in everything plus to know that all us well. One less thing to stress about.
I’ve had a kidney transplant this past year. My transplant team has ne taking two Protonix tankers a day. I asked if it was safe for kidneys, they said yes. They use it a lot to minimize intestinal track issues related to the anti-rejection meds.
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