I needed some advice as I've entered this world of illnesses lol..
I have PE in my lungs in January 23. Im in the process of recovery and my dr did some blood test just randomly..the results came back and he noticed one blood test did come out right.
He said I had too much protein on my blood. I have been referred to the heamotogist and have been advised I have para protein in my blood and my condition is called MGUS ( monoclonal gammopathy of unknown significance. )
At the moment the paraprotein level 8s at 1.2grams litres. I have been told they can't do anything help or treat until it reaches 8 or 10. I have been told it can turn into blood cancer.
I'm worried sick I have a 6 Yr old and I wanted to see him grow..but maybe I cant.
The heamotogist said turmeric is good and can reduce but I cant take that as I'm in adoxaban for life and it can cause internal bleeding. I want to help myself but don't know how to. I wish the protein can go away or reduce some way and not increase.
Just when I thought im getting better the paraprotein kicks in.
Do you think its the medication I'm on iron tablets and blood thinners for life adoxaban.
My life before 2023 was brilliant no illnesses, I really looked after myself, all them green smoothies and so..keeping up with the vitamin tablets to live a ripe old age but niw ..will have an old age? Will I still be here.. cant say anymore..just so sad 😞..life is too short.
Thankyou for reading
Sadia
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Summer133
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It's normal to worry, but very often these things are false alarms. I was told I had some alarming blood cancer - not life-limiting, thankfully, or I'd have been really worried - for which the first-line treatment was blood-letting, which sounded terribly niche! I wondered whether they used leeches, but apparently not! Anyway, thankfully, it turned out to be a false alarm, and the haematologist said that basically the elevated blood count was obviously my normal.
It is, I know, impossible not to worry - but if it *were* to turn to blood cancer, 9/10 of them are eminently treatable and people recover with no problems. And none of us know how long our lives are going to be - we could be run over by a bus tomorrow! I grew up during the Cold War, and it was assumed that the world would end in a nuclear holocaust long before now.
It's really annoying not to be able to have turmeric, isn't it? I'd love to be able to take it. Of course, a spoonful in a curry isn't going to hurt you, but we can't take it as a food supplement. All we can really do is eat as healthily as possible, take exercise as and when we can, and leave the rest to Nature and to God!
Thankyou, your right I need to just try and do what right for myself.. sometimes its hard..I need to accept whats happened and is going to happen..just live every day and keep smiling 😃..
Similar to you I had a PE in 2019, and was put on 10mg of Rivaroxaban for life. I had some discussions with my GP about the cause of the PE, but no joy there, as it was impossible to say. However after reading the experiences of people with AFIB on that forum healthunlocked.com/afassoci...
checked my medical history and realised that some slight abnormal heart rhythms, mainly bradycardia had been picked up, and I am now thinking this could be a contributory reason to the PE.
I had some discomfort in the digestive system which I put down to a side effect of Rivaroxaban and switched to Apixaban, but found the side effects from this worse than that of Rivaroxaban, so switched back, and am on this now.
So what I wanted to say is that taking turmeric is not an issue for me. I have never been told not to take it. I take it everyday and find its anti-inflammatory effect effective and eliminates aches and pains in joints etc. I would have a conversation with your GP about this and if Edoxaban cannot be taken with turmeric, then discuss whether another anti-coagulant could be used.
I hope this is helpful in some way, and wish you all the best.
Thankyou for replying for to my post.. its very hood to hear you take turmeric..I am wanting to do the same and will go drs to discuss this tomorrow.
I wanted to ask how you take turmeric.. is it throught tablets or turmeric powder.. do you take it everyday if so how much ..I too get aches and pains, Really want to try it. Maybe it might make a difference to my MGUS.
I havent had a good Yr...I am better than I was in January..I dont think I can I ever be med free now
I have a follow-up appointment with heamotogist nurse.. will discuss it with her too ..
I was diagnosed with MGUS 20 years ago. The likelihood of MGUS becoming Multiple Myeloma is very small, something like one percent per year. The important thing is to keep an eye on it. I have had blood work every 3 months for 20 years. My numbers never went high enough to become MM. However, I did morph into something called MGRS (kidney disease) this past summer. I have resistant hypertension and the MGRS is the cause. So, make sure they keep a very close eye on your blood work. Find a great oncologist and do the blood work and get on with your life. Let the oncologist carry the burden so you can live your life. IF something does happen, and it is very rare, then they will be on top of it quickly and you will have a good outcome. It is actually good news that they found it, so they know to keep an eye on it. MGUS is called Monoclonal Gammopathy of Undetermined Significance. For some reason your bone marrow is making a cloned protein cell. If the cloned protein cell numbers get high enough it can progress to Multiple Myeloma, (MM) or Smoldering MM, or in my case , and this is super rare, MGRS, Monoclonal Gammopathy of Renal significance. The cloned protein cell is attacking my kidneys. My oncologist told me that in 26 years of practice he has only had one MGUS patient go on to full blown MM. It is that rare. The MGRS I have is even more rare, a 1% chance of MGUS going to MGRS. I honestly don't think you have much to worry about. Just know that it is there, let them keep an eye on you, and get on with life. That is what I did for 20 years, and am trying to do now. Bone biopsy is later today to assess and rule out MM, then begin chemotherapy for the MGRS. Treatment for MGRS is the same as MM. Average life expectancy is 8 to 10 years. The earlier the condition is diagnosed, the better the outcome. In my case, because I have blood work every 3 months, the condition was caught early. That is why it is a good thing they found your MGUS. The earlier a bad condition is found, the sooner treatment can begin the better the outcome. I am age 68. So am guessing something else would probably take me out before the MGRS, especially since treatment for this condition has a very high success rate. Please know and inform other doctors that having MGUS can skew blood work, especially the Sedimentation rate test for inflammation, which can read higher than it really is. I also have two diseases called Polymyalgia Rheumatica and Giant Cell Arteritis, an auto-immune inflammatory vasculitis disease cluster. The Sedimentation rate test is not valid to assess my condition because the MGUS protein messes up the test. So make sure your doctors are aware you have the condition. You are a warrior. Do not forget that.
Thankyou so much for giving me some advice, i was just afraid of what will happen.. your the warrior here lol.. your marching away ..I pray for your good health and everyone who isn't well.. thankyoy for your lovely message 💕
phebamom said it best, I really have nothing else to add but wanted to share that I have had a bad DVT/PE, lifelong problems with anemia, and I was diagnosed with MGUS in 2022. My oldest brother had multiple myeloma, so I feel fortunate to have been diagnosed with MGUS so doctors can keep an eye out in case it changes.
Remember this...most everyone with multiple myeloma once had MGUS, but hardly anyone with MGUS will go on to have multiple myeloma!
This is what my hematologist/oncologist says, also reminds me to let them do the worrying!
So the saying "Live, Laugh, Love" may sound trite, but it really comes into play in this situation, or any situation really!
Hope your having a nice day, thankyou for your mesg, your right "live, laugh,love" , 3 positive words with so much meaning behind them.
I've started to learn to live with it..im going to take everyday as it comes and live till its time ..
I had a blood test with the heamotogist yesterday about the MGUS, they said its very low and will check me in 6monyhe niw then a year..if its still low.
I suppose I'm lucky, I could have been in a worse situation..Gods given me a 2nd chance to live, il make the most of it x
The journey in life makes you stronger..if I fall I will get back up and keep walking.
Your right been diagnosed early ..the NHS can keep an eye on it..im sure if there's anything to worry about they will say..until then let's keep marching.
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