Is there anything to help stop or slow progression of MGUS?

Posted by amyboylan1 @amyboylan1, Oct 12, 2024

I am wondering if there is anything anyone is doing to stop or slow the progression of MGUS. I m recently diagnosed and have a lot to learn. My oncologist said there is nothing that can be done. Also could some of you share how long you have had MGUS. I am like I’m sure like all of you very concerned about my MGUS processing. Thank you.

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@dcuste

I like your overall plan and think I'll adopt it. I already take many of the same supplements as you and today started adding the Turmeric/Curcumin C3. Had to stop taking the Pradaxa. Also ordered the Alpha Lipoic Acid, and PEA. Should arrive tomorrow.
I've been fermenting garlic in honey and taking a clove or two each morning for about a year now.
Been using a Stelo CGM about a month. They are available without a prescription. It helps with managing blood sugar levels. My A1c is lower now than it has been in years. I'm going on the theory that a lower sugar will help.

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The lower your glucose and if you can avoid glucose "spikes" by eating right, it will help greatly as far as inflammation in your body!

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ChatGPT is not totally accurate to rely upon as it just reads everything with no prioritization however the suggestions aren’t harmful. Plant based anti inflammatory diet organic (less pesticides) is key. It has helped my k/L ratio. I also wear a mask and gloves if around crowds to lessen infection risk. People may look at me funny but they don’t care for me if I get a fever!

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@1oldsoul

@loribmt
@gingerw
Lori and Ginger, I am hoping you have some insights after reading your very helpful thread on Second Opinions. Any thoughts on how I can find out what the standards are (IGM numbers) when it comes to when bone biopsies and full body scans become necessary? I would like to see if I can get a second opinion but is it going to offend my Hematologist?

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@1oldsoul @loribmt has given you some great information already, as have others.

To address your thoughts about a second opinion. You are certainly within your rights if that is a direction you want to pursue! A caveat here is to check with your insurance company to determine they will cover a second opinion! Hopefully your oncologist does not have an attitude about a patient wanting to be sure and feel comfortable about the way their case is handled. Knowledge is power, and helps you make the best joint decision about your health.
Ginger

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@gingerw

@1oldsoul @loribmt has given you some great information already, as have others.

To address your thoughts about a second opinion. You are certainly within your rights if that is a direction you want to pursue! A caveat here is to check with your insurance company to determine they will cover a second opinion! Hopefully your oncologist does not have an attitude about a patient wanting to be sure and feel comfortable about the way their case is handled. Knowledge is power, and helps you make the best joint decision about your health.
Ginger

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Thanks Ginger. Appreciate your response

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Anybody have any thoughts on Turmeric/Curcumin C3 dosing? I am currently taking 1g/day. The study I referenced earlier is using 8g/day.
Oncology has agreed to a LDH test. She is also agreeable to a skeletal scan rather than the PET scan. My thinking is to wait on the results of the scan and LDH test before changing the dose. Here is what ChatGPT has to say....

The **maximum dose of turmeric/curcumin** can vary depending on the formulation, individual health status, and specific health goals. Here's an overview of what is generally considered safe and effective:

---

### **Curcumin vs. Turmeric:**
- **Turmeric root** (the spice) typically contains about **2-8% curcumin** by weight.
- **Curcumin** is the **active compound** in turmeric, and most supplements are standardized to provide **high concentrations of curcumin**.

### **Curcumin C3 Complex:**
- **Curcumin C3 Complex** is a patented form of curcumin extract that contains **curcuminoids** (curcumin, demethoxycurcumin, and bisdemethoxycurcumin). It is designed to be more **bioavailable** and effective than regular turmeric.

---

### **Recommended Dosage:**
- **Standard curcumin dosage:**
For general health, typical doses range from **500 mg to 1,500 mg of curcumin** per day.

- **Curcumin C3 Complex:**
Clinical studies often use doses of **500 mg to 1,500 mg per day** of **Curcumin C3 Complex**. The total dose is usually divided into **two or three doses** throughout the day.

- **Maximum dose:**
- **Up to 2,000 mg to 3,000 mg** of curcumin per day has been used safely in studies, particularly for **short-term use** (up to 3 months).
- Higher doses, such as **8,000 mg per day**, have been used in some clinical trials without significant adverse effects, but these were under **medical supervision**.

---

### **Safety Considerations:**
- **General safety:**
Curcumin is generally considered **safe** when taken at doses up to **3,000 mg per day** for short periods. Long-term high-dose use may require supervision, especially in individuals with certain medical conditions.

- **Potential side effects:**
Higher doses may cause:
- **Gastrointestinal issues** (e.g., nausea, diarrhea, or stomach upset)
- **Headaches** or **dizziness** in rare cases
- **Risk of bleeding** (curcumin has mild anticoagulant properties, so caution is needed if you take blood thinners)

- **Interaction with medications:**
Curcumin can interact with:
- **Blood thinners** (e.g., warfarin, aspirin)
- **Diabetes medications** (it may lower blood sugar levels)
- **Chemotherapy drugs** (consult your oncologist if you are on treatment for MGUS or any other cancer)

---

### **Enhanced Bioavailability:**
Curcumin has **poor bioavailability** on its own. To improve absorption:
- **Combine with piperine (black pepper extract)**: Enhances absorption by **up to 2,000%**.
- **Formulations like C3 Complex**: These are already designed for better absorption.
- **Take with fat**: Curcumin is **fat-soluble**, so consuming it with healthy fats (e.g., olive oil) helps.

---

### **Conclusion:**
- For **Curcumin C3 Complex**, a dose of **500 mg to 1,500 mg per day** is typical.
- **Maximum dose:** Up to **3,000 mg per day** is generally considered safe for short-term use, but consult a healthcare provider for long-term use or higher doses.

If you’re considering curcumin for a specific condition (such as managing inflammation or supporting MGUS management), discussing the appropriate dosage with your healthcare provider is best, especially if you're taking other medications.

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I was diagnosed with MGUS at age 45, around 20 years ago, the numbers were very low and told not to worry about it. 18 years later, 2022 the value numbers from the blood test are 173 not sure what value numbers are. 2024 November numbers went up 400% to 685 not sure if that is good or bad waiting to see a hematologist. I do know the last couple years my progressive neuropathy has worsened. I have had progressive neuropathy for 15 years very bad balance, and difficult walking now.

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@nboulet

I was diagnosed with MGUS at age 45, around 20 years ago, the numbers were very low and told not to worry about it. 18 years later, 2022 the value numbers from the blood test are 173 not sure what value numbers are. 2024 November numbers went up 400% to 685 not sure if that is good or bad waiting to see a hematologist. I do know the last couple years my progressive neuropathy has worsened. I have had progressive neuropathy for 15 years very bad balance, and difficult walking now.

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@nboulet Welcome to Mayo Clinic Connect. Have you had regular check-ins with your doctor over the years, to "watch and wait" for any changes? You are proof that we can go for many years with no additional symptoms after a diagnosis of MGUS.

How soon will you be able to see your hematologist? Do you have a list of questions ready to get answered?
Ginger

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@gingerw

@nboulet Welcome to Mayo Clinic Connect. Have you had regular check-ins with your doctor over the years, to "watch and wait" for any changes? You are proof that we can go for many years with no additional symptoms after a diagnosis of MGUS.

How soon will you be able to see your hematologist? Do you have a list of questions ready to get answered?
Ginger

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I had been one time at s hematologue! It is the diagnostic og mgus igg kappa! I am anxious and i had never heard about that.

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@gingerw

@nboulet Welcome to Mayo Clinic Connect. Have you had regular check-ins with your doctor over the years, to "watch and wait" for any changes? You are proof that we can go for many years with no additional symptoms after a diagnosis of MGUS.

How soon will you be able to see your hematologist? Do you have a list of questions ready to get answered?
Ginger

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What is a mgus! My generalist doctor had done an analysis with an electrophorese with immunoelectrophorese! That was three months ago.
I have an anomalie in igg Kappa! That was confirmed after one month!
I have been at an hematologiste who makes a new analysis in january!

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@gingerw

@nboulet Welcome to Mayo Clinic Connect. Have you had regular check-ins with your doctor over the years, to "watch and wait" for any changes? You are proof that we can go for many years with no additional symptoms after a diagnosis of MGUS.

How soon will you be able to see your hematologist? Do you have a list of questions ready to get answered?
Ginger

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I used to get regular blood check on the MGUS for approximately 10 years, there was no concerns as I have had progressive neuropathy issues and stopped being tested for MGUS until around two years ago, where the numbers have really climbed I have been waiting 30 days to see a haematologist and Will probably take me another 30 days before I get in. I don’t understand value number in 2022 Christmas time was 173 value numbers 2024 November was 685 which is 400% greater. here in Canada. We do have free healthcare for some medical issues, but you do have to be very patient as government doesn’t put a lot of money into it anymore. Totally misleading and the medical system. Here is understaffed.
Does anybody understand these value numbers what they mean?

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