Hi,
My mother is 61 years old and was diagnosed with multiple myeloma almost 4 years ago. She has had a stem cell transplant and is currently being treated with Revlimid and dexamethasone on 28 day cycles.
She has recently been in hospital with orthostatic hypotension (blood pressure drops each time she stands). Multiple doctors have reviewed her and cannot determine the cause.
Does anyone have any tips on what this might be?
My mum cannot function at the moment, sleeps most of the day and is in a lot of pain (particularly her legs). Any feedback and sharing would really help. Thank you.
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Re: Orthostatic hypotension during myeloma treatment
Hi Emily:
I am sorry to hear your mother is not feeling well. Are the doctors sure that the Revlimid is not causing this? I had the same/similar issues while I was taking it, they eventually had to take me off it completely.
Kathleen
I am sorry to hear your mother is not feeling well. Are the doctors sure that the Revlimid is not causing this? I had the same/similar issues while I was taking it, they eventually had to take me off it completely.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Orthostatic hypotension during myeloma treatment
Hi Emily,
I cannot give any specific medical advice because I am only a patient, but I can share some thoughts relating to my own treatment.
Products such as Revlimid cause the blood to become thick, and having a thickening of the blood effects the body in many ways, sometimes producing reduced levels of oxygen in the blood. I would guess that your mother is receiving a blood thinning medication, as I do every day.
Another side effect can produce problems of pain and tingling in the feet and legs due to the medication affecting the nerves. Treatments are available to help reduce these problems.
I have had some issues with blood pressure and I have certainly found that it helps a lot to stand up slowly from a sitting or bending position.
I am sorry if this is not very useful, I hope the problem is rectified soon.
Kind Regards,
Victor L
I cannot give any specific medical advice because I am only a patient, but I can share some thoughts relating to my own treatment.
Products such as Revlimid cause the blood to become thick, and having a thickening of the blood effects the body in many ways, sometimes producing reduced levels of oxygen in the blood. I would guess that your mother is receiving a blood thinning medication, as I do every day.
Another side effect can produce problems of pain and tingling in the feet and legs due to the medication affecting the nerves. Treatments are available to help reduce these problems.
I have had some issues with blood pressure and I have certainly found that it helps a lot to stand up slowly from a sitting or bending position.
I am sorry if this is not very useful, I hope the problem is rectified soon.
Kind Regards,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Orthostatic hypotension during myeloma treatment
I have been on Revlimid and dexamethasone for over a year. The only time I was diagnosed with orthostatic hypotension was when I took Neupogen prior to harvesting my stem cells (still haven't had transplant). When I sat up or stood up, my blood pressure dropped to scary levels. A day after I stopped Neupogen, I recovered quickly.
Re: Orthostatic hypotension during myeloma treatment
Hi Emily,
I am sorry to hear of your mother's problems. While I just started induction in January, I was having similar issues, They tried reducing the dosage of both the Velcade and the Revlimid. Nothing helped.
Finally a relative with Addison's disease told me to have them look at my cortisol level. Sure enough, my level was 0.5 and the normal low is 4.3. It is caused by the dexamethasone. Even stopping the dex wont really help because the dex has essentially told the adrenal gland that cortisol isn't needed. Supposedly the dex needs to be gradually withdrawn.Hope it helps
I am sorry to hear of your mother's problems. While I just started induction in January, I was having similar issues, They tried reducing the dosage of both the Velcade and the Revlimid. Nothing helped.
Finally a relative with Addison's disease told me to have them look at my cortisol level. Sure enough, my level was 0.5 and the normal low is 4.3. It is caused by the dexamethasone. Even stopping the dex wont really help because the dex has essentially told the adrenal gland that cortisol isn't needed. Supposedly the dex needs to be gradually withdrawn.Hope it helps
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