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

Posted by amyboylan1 @amyboylan1, Oct 12 10:14pm

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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@anneschanck

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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@anneschanck
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
That will give you a bit of information about MGUS. Typically, if you are tested and an M paraprotein is detected in your blood, you are referred to a specialist who will monitor your health. MGUS is not cancer, but there is a small risk of the condition progressing to other blood cancers including multiple myeloma. Many have had MGUS quite uneventfully for decades.
It’s important that you advocate for comprehensive healthcare and ensure that you get a referral to a hematologist/oncologist who is a specialist in treating blood cancers. You don’t have blood cancer with MGUS, but must be monitored.
Can you speak with your physician about this and will you let me know how this works out for you?

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@dcuste

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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@dcuste
I spoke to my hem/onc doc about turmeric and he sort of rolled his eyes, citing lack of supporting data. Undaunted, I read that some were having success rolling the turmeric dice and I decided to try it.
I checked with my PCP because I was worried about unanticipated consequences with an interaction with other drugs I’m taking. She consulted pharmacy who went through them with me and finding no counter indications, I opted for a daily dose of 1000 mg of Curcumin. My kappa values went from 113.8 to 88.8.
I’ll take it. My lambda went down a minuscule bit. My ratio went from 5.69 to 4.49.
I don’t know that any of this is attributable to the curcumin I get semi annual bloodwork done again this coming Monday. We’ll see if the reduction in values was an anomaly. It sure wasn’t adherence to good diet and exercise as I have not been dedicated to either recently, but I am by nature and empiricist, and I’d like to see steady decline in these values consistently before I get too excited.
I had no Gastro issues whatsoever taking the curcumin. I tried taking turmeric with ginger and let’s just say I had to spend way too much time in the bathroom.
Thank you for sharing this information. Are you taking turmeric and how has this impacted your health?

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@pmm

@dcuste
I spoke to my hem/onc doc about turmeric and he sort of rolled his eyes, citing lack of supporting data. Undaunted, I read that some were having success rolling the turmeric dice and I decided to try it.
I checked with my PCP because I was worried about unanticipated consequences with an interaction with other drugs I’m taking. She consulted pharmacy who went through them with me and finding no counter indications, I opted for a daily dose of 1000 mg of Curcumin. My kappa values went from 113.8 to 88.8.
I’ll take it. My lambda went down a minuscule bit. My ratio went from 5.69 to 4.49.
I don’t know that any of this is attributable to the curcumin I get semi annual bloodwork done again this coming Monday. We’ll see if the reduction in values was an anomaly. It sure wasn’t adherence to good diet and exercise as I have not been dedicated to either recently, but I am by nature and empiricist, and I’d like to see steady decline in these values consistently before I get too excited.
I had no Gastro issues whatsoever taking the curcumin. I tried taking turmeric with ginger and let’s just say I had to spend way too much time in the bathroom.
Thank you for sharing this information. Are you taking turmeric and how has this impacted your health?

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Could you please let us know how your next blood tests go?
Thanks

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@pmm

@dcuste
I spoke to my hem/onc doc about turmeric and he sort of rolled his eyes, citing lack of supporting data. Undaunted, I read that some were having success rolling the turmeric dice and I decided to try it.
I checked with my PCP because I was worried about unanticipated consequences with an interaction with other drugs I’m taking. She consulted pharmacy who went through them with me and finding no counter indications, I opted for a daily dose of 1000 mg of Curcumin. My kappa values went from 113.8 to 88.8.
I’ll take it. My lambda went down a minuscule bit. My ratio went from 5.69 to 4.49.
I don’t know that any of this is attributable to the curcumin I get semi annual bloodwork done again this coming Monday. We’ll see if the reduction in values was an anomaly. It sure wasn’t adherence to good diet and exercise as I have not been dedicated to either recently, but I am by nature and empiricist, and I’d like to see steady decline in these values consistently before I get too excited.
I had no Gastro issues whatsoever taking the curcumin. I tried taking turmeric with ginger and let’s just say I had to spend way too much time in the bathroom.
Thank you for sharing this information. Are you taking turmeric and how has this impacted your health?

Jump to this post

I've been taking close to 2grams/day curcumin for about a month now. My LDH is now in the normal range so on Jan 2 I'll get MRIs of my lower spine and pelvis.
If the MRIs are normal, I'll probably keep doing what I've been doing. Then decide what next when I get the results of my April blood tests. The only turmeric I take is from the Curcumin supplements. There is at least one trial using curcumin for MGUS.
I'll be happy if my condition stabilizes. It's good to know some people are able to improve.

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@nboulet

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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About 6 years ago I would meet with Canadian snow birds in the US. My understanding was they had insurance that paid for their out-of-country Healthcare. So they would get everything taken care of in the US. After a certain age the insurance prove was too high for them to travel down.

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@amyboylan1

Could you please let us know how your next blood tests go?
Thanks

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@amyboylan1
I sure will. I don’t look at my chart. I’d rather be in the room with my hem/onc doc so I’ll see him on 1.2. Will post.

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@anneschanck

I have a gammatonie monoclonale. I have osteoporis since 30 years and i take medis, biphosphonats, prolia and so on. I take this medis since 30 years, then it gets better and after not taking medis it’s bad again. Infeel sick, but nobody is so terribly interested. I would like to do no more anything a live as long as i live!

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Most all oncologist add the label hemotologist. I work with a “blood” pathologist. They are few and hard to find out of academic circles. My favorite is Dr Thomas Hirose at UCIrvine

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@pmm

@amyboylan1
I sure will. I don’t look at my chart. I’d rather be in the room with my hem/onc doc so I’ll see him on 1.2. Will post.

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Thanks

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@dcuste

I've been taking close to 2grams/day curcumin for about a month now. My LDH is now in the normal range so on Jan 2 I'll get MRIs of my lower spine and pelvis.
If the MRIs are normal, I'll probably keep doing what I've been doing. Then decide what next when I get the results of my April blood tests. The only turmeric I take is from the Curcumin supplements. There is at least one trial using curcumin for MGUS.
I'll be happy if my condition stabilizes. It's good to know some people are able to improve.

Jump to this post

I don’t think my LDH was tested with the other MGUS tests can that be. What is the LDH? Glad yours is normal now.

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I am very concerned too. I was diagnosed about 6 months ago.

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