Is it normal to feel so bad 2 yrs after SCT?

[vickij]

I had my SCT for MDS in June 2013. The first year I felt pretty good, but this past year has been tough. The first year I had a lot of transfusions due to low hemoglobin . My blood type changed to donors type in June 2014 and my hemoglobin went to 14 and has stayed there since. 5 months ago they started phlebotomy once a month to get rid of excess iron from the transfusions .My ferritin has gone from 2300 to 1800 so I still have a ways to go to get to normal range. This past year I have been very tired & depressed with a lot of anxiety & muscle pain. I was just wondering if others have experienced this after transplant & if anything helps.

[Marlene]

Does your doctor have any insights at this point?

I would look at what your hormones are up to. Thyroid, estrogen, testosterone, DHEA, etc. Iron overload effects the endocrine system.

Also, the burden of the phlebotomies will place an additional stress on your body's nutrient requirement to manufacture new blood. Have your vitamin D, B12 and folate checked to see how they are. Don't supplement 3 -4 days prior to any testing.

You B12 should be at a minimum at 500.

Think about skipping a phlebotomy for a month and see if that helps.

[vickij]

I am taking vitamin D, but don't think the have checked thyroid or estrogen , just have CBC done every month. I will be seeing my family Dr. in a few weeks and I will ask her about checking these.

[Marlene]

Just be sure to stop your supplementation 3-4 days prior to any testing. Even though doctors usually check b12 and folate in the beginning, they usually don't look at nutritional issues after treatment. Treatments place a huge burden on the body and can deplete you of the micro nutrients needed to recover.

Hope your family doc can help you figure some of this out.

[Marlene]

Also, ask them to check your magnesium levels. Low mag can cause those problems too. Look at the meds you may still be on to see if they deplete it.

I like Kirkman's magnesium glycinate for oral. But I have found a topical cream by Calm that works really well on muscles and have been using it for about a month now. It really helps with muscle tension.

[vickij]

I have been taking mag 64 since transplant. Dr said my vit. D was good and I can just take 400mg vit D now instead of prescription. She also gave me a prescription for Zoloft for the depression. I will see transplant Dr in Sept. and will try to get some answers from him. My oncologist & family Dr. are great at trying to explain things to me but they don't know that much about transplants. I am so thankful for this forum and all of you that have so much information.

[Neil Cuadra]

Does magnesium help muscle pain ?
Short answer: Yes. If your magnesium level is low (that's called hypomagnesemia) then you may experience muscle cramps, weakness, twitching, or spasms.

[Marlene]

Ditto on Neil's short answer. Unfortunately, the issues around magnesium can get quite complicated. Mag is just one of the electrolytes that plays a role in muscle cramping/tension.

Oral magnesium may not get absorbed or utilized properly. And there are other cofactors that help magnesium do its job, like B6.

Transdermal magnesium tends to do a better job on muscles than oral in my case. I like the sodium chloride lotion. Works well for John too.

Make sure you are well hydrate. Less than optimal hydration can cause joint and muscle pain too. But be sure not to over-hydrate since that will throw your electrolytes out of balance. Contrary to what most think, sometimes you have to increase your salt intake in order for your body to hold onto the water you drink. My sodium blood serum levels are at the very end of low normal. If you drink water and pee it our right away, it's just passing through and not really hydrating your cells. So we use a good celtic sea salt because it has many beneficial trace minerals in it Be sure to get Chem Panel so you see what your sodium, chloride, potassium and calcium are. Your doctor will need to request they check your magnesium separately since it's not included in a chem panel.