Anyone had bone marrow transplant for sickle cell disease (SCD)?

Good morning, @bloomthesickler. I’m really sorry to hear you’re having so much pain following your BMT almost a year and a half ago. It’s not uncommon for the first couple of months to be a little rough with fatigue and nausea. You mentioned having a roller coaster of issues. I think most of us who have had a BMT can relate to that experience. Things can be a little rocky that first year. But by 1.5 years usually life has mellowed out to a level of normalcy.

Because you’re still considered in the recovery phase, it’s very important to keep track of any changes in your body which could be related to GVHD (graft vs host disease). And right now it sounds like you’re really having some issues with your nervous system. This is not a normal and should be investigated by your transplant team. They may suggest some followup testing such as an MRI or consultation with a neurologist. When we have a bone marrow transplant there is always the possibility of GVHD where the new immune system we received can attack our body. I think it’s very important for you to speak with your team about this.
Have you discussed this with your transplant team?

@loribmt I have they first mentioned me wanting opiods
Then later said years of pain contributed to pain after the transplant ?
I really have no definitive answer and it’s tiring

@bloomthesickler, Oh gosh, I’m sorry you’re not getting any answers. I’ve not personally had any pain associated with my transplant though I do know a couple of fellow acquaintances who experienced some mild joint pain, similar to arthritis. But nothing like you’re dealing with.
I did develop some atypical gvhd inflammation on my spinal cord. I had similar zaps of electricity along with losing sensation from my waist to my toes when it first started. It was dealt with swiftly by my transplant team. So I have no aftermath issues. But that’s why I wanted to make sure your team is exploring the possible causes.
Quite honestly, if this were me, I’d push for a neurology consult. Aches and pains are one thing. Electrical shocks and zaps are another. You may be experiencing something as simple as pinched nerves along your spine.
One other thing I might suggest that wouldn’t be invasive.
Have you tried having a session with a licensed massage therapist. When I recovering from my spine issues, it was recommended for me. It was very beneficial and seemed to be the last portion of my healing! So I go regularly now on a monthly basis. Just a thought…
If you don’t mind my asking, what is your age? And, has the transplant at least done the job in eliminating the sickle cell disease?

@loribmt 23
Yes it’s gone
It’s still there
I did meet a neurologist actually and they said everything seemed fine gave me some meds
I actually met two different ones
It all looked good from their side
So now I’m stuck with cause I had pain for years my nerves are sensitized
I tried working out and all that but that was when I was using opiods and tbh I told them to stop it’s not treating the pain
Does that mean I’ll have it for life ?
So stopped them

@bloomthesickler It’s a relief at least to know the sickle cell disease is gone. But small comfort if you’re still in that level of pain.
I did a little sleuthing online this morning to learn more about sickle cell disease. I understand more now about the pain you’ve had to deal from the disease. It sounds horrible and I’m so sorry you’ve had to cope with that for so many years. I know you were looking for hope and relief with the bone marrow transplant.

There is, what I feel, some good news for you. There are discussions online, one in particular in Reddit, with other patients who had SCD and underwent a BMT to reverse the disease.
The transplants have been highly in successful in treating SCD. But as your doctors mentioned, because of previous damage with the chronic pain, the nerves can remain sensitized for a while. Other patients, just as you have, commented that they still suffer from the similar pains, though less frequent and shorter duration than before the BMT. The good news is that with most of the people, they say it took them about 2 years to be back to normal.

Our bodies have the amazing ability to heal. At 23 you have a long, healthy life ahead of you…free from sickle cell disease. It may take some time for your body to feel like it belongs to you again! I had my BMT almost 7 years ago at the age of 65. So I was pretty used to my old way of life and it abruptly changed. I’ve learned to roll with the new me! Ha, not easy for an old lady! LOL. It’s helpful to eat healthy foods, exercise and find something positive in each day.
What types of things do you enjoy doing? Are you able to return to work yet?

Thank you sm for researching
Yes the pain is terrible top most painful diseases
Well then I’ll have to wait for two years I guess
The pains are more frequent I don’t know why
I can’t exercise anymore makes it worse
I try to get my steps in
It’s just crazy how much the pain is
I hope for a better future because it’s been hard
I resumed a week ago but it’s been hard maybe im not ready yet

@bloomthesickler If you’re finding an increase in your pain level after returning to work, your body may not quite yet be ready for that level of demand. Having a BMT isn’t a quick recovery. Even after almost 7 years, I still have days where I have to pretty much just rest and recover if I’ve overdone the previous days.
I know it’s tough to be idle as well. Is working part time an option for you?
Do you seem to have more discomfort when you overexert or are fatigued?

@loribmt I guess I just expected everything sto be fine after the transplant
I guess not everyone knows this
Yes I got back Ang got sick in a week
I tried working out got ill too

Hi @bloomthesickler The biggest desire all of us have when we receive our bone marrow transplant, is the hope for a normal life. To have everything be fine again. For most of us, well, we reach a new normal where things are fine, just different. Our new immune system, courtesy of our donor, helps to keep us safe from illness and keeps our blood supply healthy. However, it will never be as robust as our original immune system we were born with. So we have to be vigilant to avoid illnesses, infections and over exerting ourselves.

The transplant is traumatic to both mind and body because everything changes…not only from the disease we had and the BMT process itself. We can also go through a mourning period of feeling loss for everything that was familiar for a while. Until we learn our ‘new normal’. I hate that term but it is appropriate.

I’m relieved for you that the underlying Sickle Cell Disease has disappeared. Unfortunately because of the past damage to your body from repeated sickle cell crises attacks it may take time to reverse the chronic pain sensitization. Apparently you’re not alone in this. Articles I’ve been reading since talking to you, mention that about 40% of patients who had the BMT will still have similar pain crises for a while.
I know there’s a huge stigma with opioids and that it sounds like your doctors have said that you’re just trying to get pain meds. Well, from everything I’m reading, that is highly insensitive of them. Because what you are experiencing isn’t in your head! What you’re experiencing is very real and I’m so sorry dealing with this level of pain. There are many articles supporting your difficulties post transplant for SCD.

* here are a couple of the articles
-National Inst. Health:
https://www.nccih.nih.gov/research/research-results/new-insights-on-pain-and-opioid-use-in-people-with-sickle-cell-disease-after-hematopoietic-stem-cell-transplant
-Science Direct:
https://www.sciencedirect.com/science/article/abs/pii/S1473050222002178
I’ve also been looking for online support groups where you can talk to other members who have SCD, many whom have had a BMT.
If you’re on Face book I found these two sites:
https://www.facebook.com/groups/BMTSickleCell/
https://www.facebook.com/groups/795987034782953
Also two great resource sites I follow are these listed below. You can find pod casts and really good articles talking about survivorship and how to cope with life changes after the transplants.
Two websites I follow are:
- National Marrow Donor Program
https://www.nmdp.org/
-BMTInfonet
https://bmtinfonet.org/
From everything I’m reading, proper pain management is key to helping patients recover post BMT. It’s suggested that chronic pain management strategies, including opioid and non-opioid medications, along with physical therapy might be helpful until the nerves can modify and settle down.

Have you been offered any therapy or medications to help you manage your pain?