I was diagnosed with Sjögrens disease in 1996, and was prescribed prednisone and methotrexate. I continued to take both from then on, until last year.
Following the Sjögrens diagnosis, I developed rheumatoid arthritis, which developed into osteoarthritis. Diagnosis was MGUS.
I began having spontaneous and long-lasting nose bleeds, for which the prescription was tranexamic acid. I had regular blood tests – monthly then 3-monthly, for the Sjögrens disease. I fell and broke a hip in 2007 (ending a career teaching); but I also developed stiff-person syndrome and was bed-bound for years. For that, the prescription was for an antidepressant and a muscle-relaxant. Fully recovered now, praise be.
The blood tests have continued, The last routine tests revealed changes, and my GP referred me to the oncology department of our hospital, and the specialist said I have smoldering myeloma. The oncologist scheduled a CT scan and, later this month, an MRI.
And, they have already allocated me a "treatment support" nurse.
So, I wait. Worried. (That's okay, yeh?)
So glad to have found the place to learn from and engage with others and share experiences.
Forums
4 posts
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1951Kiwi - Name: Lynne
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering, Oct 2018
- Age at diagnosis: 67
Re: MGUS diagnosed age 56; now 67 & testing for smoldering`
Hi Lynne,
Welcome to the forum.
Nosebleeds in myeloma patients can either be caused by having low platelet counts due to the myeloma or because of a condition called hyperviscosity syndrome, where the excess proteins produced by the myeloma build up in your blood and you may also suffer from low platelet counts at the same time. Both conditions are easy to test for.
I'm sure your doctors are already running standard CBC blood tests to look at your platelet numbers, but you may want to also ask them about the possibility of hyperviscosity syndrome as well. As I understand it, Sjögrens can also cause nosebleeds, but for different reasons.
Good luck with your next round of tests and let us know how things turn out.
Welcome to the forum.
Nosebleeds in myeloma patients can either be caused by having low platelet counts due to the myeloma or because of a condition called hyperviscosity syndrome, where the excess proteins produced by the myeloma build up in your blood and you may also suffer from low platelet counts at the same time. Both conditions are easy to test for.
I'm sure your doctors are already running standard CBC blood tests to look at your platelet numbers, but you may want to also ask them about the possibility of hyperviscosity syndrome as well. As I understand it, Sjögrens can also cause nosebleeds, but for different reasons.
Good luck with your next round of tests and let us know how things turn out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS diagnosed age 56; now 67 & testing for smoldering`
Thanks, Multibilly, for welcoming and the helpful advice you've given her.
Lynne,
It's good that you've had the past 11 years to get accustomed to all the terminology and test results you need to know about related to MGUS, smoldering myeloma, and myeloma. You won't be as mystified as a total neophyte when your doctors begin discussing things like your paraprotein level (M-spike), free light chain results, or your bone marrow plasma cell percentage.
In case you haven't found them already, there are three posts in the "Do I have multiple myeloma?" section of the forum that should give you all the information you need to understand whether your diagnosis should remain MGUS, or if your MGUS has progressed to smoldering myeloma or (active) multiple myeloma. (Obviously, we're hoping the diagnosis is smoldering, or perhaps even still MGUS.) Here are the posts:
Good luck!
Lynne,
It's good that you've had the past 11 years to get accustomed to all the terminology and test results you need to know about related to MGUS, smoldering myeloma, and myeloma. You won't be as mystified as a total neophyte when your doctors begin discussing things like your paraprotein level (M-spike), free light chain results, or your bone marrow plasma cell percentage.
In case you haven't found them already, there are three posts in the "Do I have multiple myeloma?" section of the forum that should give you all the information you need to understand whether your diagnosis should remain MGUS, or if your MGUS has progressed to smoldering myeloma or (active) multiple myeloma. (Obviously, we're hoping the diagnosis is smoldering, or perhaps even still MGUS.) Here are the posts:
- Criteria for an MGUS diagnosis
- Criteria for a smoldering multiple myeloma diagnosis
- Criteria for a (symptomatic) multiple myeloma diagnosis
Good luck!
Re: MGUS diagnosed age 56; now 67 & testing for smoldering`
Hello,
My husband is the one with MGUS, 0.2 g/dl blood, 0.003 g/dl urine, and 8% in the bone marrow. Our myeloma specialist at Seattle Cancer Care Alliance says my husband is "low risk" for progression even with the bone marrow percentage.
I'm commenting because you mentioned nose bleeds that wouldn't stop. There is something called acquired von Willebrand syndrome that the MGUS can cause. It's very very rare, but my husband has it. You might want to have a von Willebrand panel done.
My husband doesn't have the normal bruising or bleeding that most with it do. His clotting factors are very very low, yet the only issues so far have been two gastric bleeds, and they were scary and both required hospital stays and treatment. It's the "unseen" that is the problem, and only IVIG infusions raise the factor levels in acquired von Willeband patients. Our myeloma specialist is recommending treating the MGUS + acquired von Willebrand with Revlimid in the hope it eradicates the plasma cells, for now, and stops the bleeding disorder. The von Willebrand factors and factor VIII cling to the mutated cells and don't act when the clotting cascade is needed. For now, he is going to do maintenance IVIG every month until we decide whether or not to do the Revlimid.
Sorry to ramble here, but when I see someone has bleeds, I have to suggest checking for the acquired von Willebrand syndrome. In my husband's case, the bleeding possibilities are way scarier than the MGUS at this point
My husband is the one with MGUS, 0.2 g/dl blood, 0.003 g/dl urine, and 8% in the bone marrow. Our myeloma specialist at Seattle Cancer Care Alliance says my husband is "low risk" for progression even with the bone marrow percentage.
I'm commenting because you mentioned nose bleeds that wouldn't stop. There is something called acquired von Willebrand syndrome that the MGUS can cause. It's very very rare, but my husband has it. You might want to have a von Willebrand panel done.
My husband doesn't have the normal bruising or bleeding that most with it do. His clotting factors are very very low, yet the only issues so far have been two gastric bleeds, and they were scary and both required hospital stays and treatment. It's the "unseen" that is the problem, and only IVIG infusions raise the factor levels in acquired von Willeband patients. Our myeloma specialist is recommending treating the MGUS + acquired von Willebrand with Revlimid in the hope it eradicates the plasma cells, for now, and stops the bleeding disorder. The von Willebrand factors and factor VIII cling to the mutated cells and don't act when the clotting cascade is needed. For now, he is going to do maintenance IVIG every month until we decide whether or not to do the Revlimid.
Sorry to ramble here, but when I see someone has bleeds, I have to suggest checking for the acquired von Willebrand syndrome. In my husband's case, the bleeding possibilities are way scarier than the MGUS at this point
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pami - Name: pamela
- Who do you know with myeloma?: husband has MGUS and aVWD
- When were you/they diagnosed?: just recently
- Age at diagnosis: 68
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