My husband was home and doing well post transplant when he began experiencing increasing neuropathy and pain that moved upward on his legs. Then his muscles became weaker and weaker even though he was trying to exercise every day. Finally his legs began collapsing when he walked and he was re-admitted to the hospital on + day 57 and diagnosed with Guillain-Barré sydrome.
Testing for all viruses that might have triggered this were negative. He received 5 consecutive days of IVIG and is currently in an acute rehab hospital to regain enough strength and coordination to return home.
I am wondering if there are case histories of others who developed this post stem cell transplant?
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Re: Guillain-Barré syndrome after stem cell transplant
Was this an allo or auto transplant?
You can google on "Guillain-Barre syndrome bone marrow transplant" and find several studies of patients that developed it, both with auto and allo.
It sounds awful, but it also sounds like it is very treatable (which is critical that you do) and that one can fully recover.
You can google on "Guillain-Barre syndrome bone marrow transplant" and find several studies of patients that developed it, both with auto and allo.
It sounds awful, but it also sounds like it is very treatable (which is critical that you do) and that one can fully recover.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Guillain-Barré syndrome after stem cell transplant
This was an autologous stem cell transplant.
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IKA1949
Re: Guillain-Barré syndrome after stem cell transplant
Hi, I just found your post when googling stem cell transplant and Guillain-Barré syndrome. My dad had a stem cell transplant for Multiple Myeloma in January. When he arrived home he started to get weaker rather than stronger despite lots of physiotherapy- both my mum and I are physios. He has just been readmitted to hospital after his legs started to give way and was diagnosed with Guillain-Barré today. He starts the immunoglobulin tonight.
I was just wondering how your husband is getting on with his recovery? I hope he has regained enough strength to come home.
Thank you in advance for your reply. It is a scary time for us at the moment,
Alice
I was just wondering how your husband is getting on with his recovery? I hope he has regained enough strength to come home.
Thank you in advance for your reply. It is a scary time for us at the moment,
Alice
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Aemj1980
Re: Guillain-Barré syndrome after stem cell transplant
Aemj1980, I am glad to have someone else to compare notes with! My husband's transplant was also for multiple myeloma of course. He spent 9 days in the hospital getting diagnosed and having the IVIG. He then went to the rehab hospital for intensive therapy and spent 10 days there. He has now been home for a month and going to outpatient physical and occupational therapy 2-3 times a week. His involvement with mostly up to his waist, although he did have numbness and tingling beginning in his hands when he was admitted. Within a week after the IVIG, the pain, numbness and tingling was receding from legs and hands. The muscle weakness takes much longer. Time and therapy are the key.
Your dad will be fortunate to have both of you to work with him! Our PT's at outpatient had to do some research because they are young and had never worked with a Guillain Barre patient before. What they learned was that pushing the patient TOO hard is counterproductive, so they let my husband tell them when his legs have had enough for the day. We do continue exercise daily at home of course.
They also said that Guillain Barre usually starts lower and works upward and the recovery follows the same route. They just retested his calf and knee strength and it has improved greatly. His hip flexors continue to be very weak, so that and his balance is where he needs the most work. He uses a walker but has been practicing with a cane at therapy and a little in the house at home.
How complete his recovery will be is not known of course. He already had fairly bad neuropathy issues in his feet and lower legs to begin with, so that may have some impact on the recovery.
How many days post transplant was your dad diagnosed? Did they test him for viruses? Since they did not find any viral triggers in my husband's case, I think it was just triggered by the SCT messing with his immune system and it backfired on him. I think this is a fairly rare occurrence, so the exact trigger may never be known. Please post on how your dad is doing.
Your dad will be fortunate to have both of you to work with him! Our PT's at outpatient had to do some research because they are young and had never worked with a Guillain Barre patient before. What they learned was that pushing the patient TOO hard is counterproductive, so they let my husband tell them when his legs have had enough for the day. We do continue exercise daily at home of course.
They also said that Guillain Barre usually starts lower and works upward and the recovery follows the same route. They just retested his calf and knee strength and it has improved greatly. His hip flexors continue to be very weak, so that and his balance is where he needs the most work. He uses a walker but has been practicing with a cane at therapy and a little in the house at home.
How complete his recovery will be is not known of course. He already had fairly bad neuropathy issues in his feet and lower legs to begin with, so that may have some impact on the recovery.
How many days post transplant was your dad diagnosed? Did they test him for viruses? Since they did not find any viral triggers in my husband's case, I think it was just triggered by the SCT messing with his immune system and it backfired on him. I think this is a fairly rare occurrence, so the exact trigger may never be known. Please post on how your dad is doing.
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IKA1949
Re: Guillain-Barré syndrome after stem cell transplant
Hi, thank you for replying. It is good to hear your husbands strength is improving. My dad was diagnosed about the same time as your husband (at around day 50) but it is hard to tell when the weakness began because he already had some neuropathology possibly from the Velcade he was on earlier.
He also had unusual sensation in his hands but most of the weakness was in his legs. He didn't have any respiratory muscle involvement thank goodness.
My dad tested positive to a gut bacteria when he was initially in hospital for the transplant so the doctors think this could have been the culprit but essentially they aren't sure. Did your husband have a muscle biopsy? They wanted to do one on dad but because he responded to the IVIG they decided not to.
He did respond to the IVIG but unfortunately it caused his white cells to reduce again. The doctors are not sure why. Did the IVIG have any negative effects on your husbands white cell count? I have read that it can be a side effect of the IVIG in some people. He had a stimulation injection and they have now recovered.
He headed to rehab today. He is also walking with a frame.
The doctors here in Sydney Australia hadn't seen GB after stem cell transplant but I have found a few cases on the Internet. Had your husbands doctors seen it previously?
Thanks for making contact and I hope your husband continues to regain his strength steadily.
He also had unusual sensation in his hands but most of the weakness was in his legs. He didn't have any respiratory muscle involvement thank goodness.
My dad tested positive to a gut bacteria when he was initially in hospital for the transplant so the doctors think this could have been the culprit but essentially they aren't sure. Did your husband have a muscle biopsy? They wanted to do one on dad but because he responded to the IVIG they decided not to.
He did respond to the IVIG but unfortunately it caused his white cells to reduce again. The doctors are not sure why. Did the IVIG have any negative effects on your husbands white cell count? I have read that it can be a side effect of the IVIG in some people. He had a stimulation injection and they have now recovered.
He headed to rehab today. He is also walking with a frame.
The doctors here in Sydney Australia hadn't seen GB after stem cell transplant but I have found a few cases on the Internet. Had your husbands doctors seen it previously?
Thanks for making contact and I hope your husband continues to regain his strength steadily.
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aemj1980
Re: Guillain-Barré syndrome after stem cell transplant
I have read that by the time Guillain Barre is diagnosed, whatever infection triggered it might be gone. I feel as if just the SCT process could trigger it, although the doctors don't really say that! Although there are case histories post transplant, I don't think any of his doctors here had previous cases.
When my husband was admitted with the Guillain Barre, his white count was in the normal range, which I found rather odd - it had not been normal yet since transplant. Somewhere I read though that the syndrome can cause an elevated white count. And yes, the IVIG can lower the white count, but my husband's eventually went back to where it was before - which is still a bit low, but expected for some time post transplant.
I am very glad that in both my husband's and your dad's cases, the syndrome did not progress upward and affect the respiratory system. Their cases sound nearly identical. No, they did not do a muscle biopsy on my husband either - I think they felt it was not necessary. He had MRI's to rule out other things, a spinal tap, and nerve conduction studies.
My husband will have outpatient therapy next week and then we will be on our own to continue the recovery process. Please do post again and let me know how your dad is doing. It is so good to have someone to compare notes with!
When my husband was admitted with the Guillain Barre, his white count was in the normal range, which I found rather odd - it had not been normal yet since transplant. Somewhere I read though that the syndrome can cause an elevated white count. And yes, the IVIG can lower the white count, but my husband's eventually went back to where it was before - which is still a bit low, but expected for some time post transplant.
I am very glad that in both my husband's and your dad's cases, the syndrome did not progress upward and affect the respiratory system. Their cases sound nearly identical. No, they did not do a muscle biopsy on my husband either - I think they felt it was not necessary. He had MRI's to rule out other things, a spinal tap, and nerve conduction studies.
My husband will have outpatient therapy next week and then we will be on our own to continue the recovery process. Please do post again and let me know how your dad is doing. It is so good to have someone to compare notes with!
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IKA1949
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