Is pain normal with transplant & how long does it last ?

[vickij]

I had my SCT on June 24th. Within 2 days I was having a lot of pain in all of my joints . I also lost strength in my arms & legs. I have been on several different pain pills and none seem to work. I was just wondering if the pain is normal & how long does it last ?

[KathyM]

I can tell you that my H did have joint pain for several weeks after his transplant (April 24, 2013) and lost strength in his arms too. No pain medicine worked for him either until he was finally prescribed oxycoton.

Now that he is backing off some of his meds the joint pain has gotten a lot better and he is beginning to regain some strength too. This has all just been in the past 2 weeks.

Hope you feel better soon.

[vickij]

When I ask Drs about pain, they say that everyone is different and it will go away soon. I have taken oxycoton and it really didn't help much. I now have a pain patch, hopefully it will work.

[Heather8773]

Hi Vickij
I was thinking you could ask if your symptoms might indicate peripheral neuropathy. Neil was kind enough to provide some links when I asked for help so I copied them in below. Best of luck!

there are various treatment approaches, including medications like gabapentin (Neurontin) and pregabalin (Lyrica). If you want to provide links, this article (from a nursing point of view) isn't overly technical and might provide some context, while this patient forum page shows that a number of patients complain of the condition but that symptoms and effective treatment are very specific to the patient.

[vickij]

I will ask Dr about this at my appt. next week. I have wondered if one of those meds would help.

[Lulu]

Have they tested you for Thiamin (vitamin b1) deficiency?
Have read that this is sometimes misdiagnosed following bone marrow transplant, can be caused by the drugs, TPN feeding, or gut damage. Early symptoms are weakness and neuropathy. Is easily tested for and treated.
http://www.nature.com/bmt/journal/v3.../1704893a.html

Good luck x

[Rasmusbja]

Hi vicky

Of all the medications you have tried, was ibuprofen one of them?

I was diagnosed with MDS two months ago, and experienced severe bone pain. The only thing that could help me was ibuprofen (4x600mg a Day). Morfine had no effect on me.

I know that many hematologists don't like to use ibuprofen because Of the risks of GI ulcers, bleedings and heart problems.

In your case I would imagine that the biggest problem would be the low platelets. I have platelets in The range from 10-20 right now, and have no problems with bleedings, taking ibuprofen on a daily basis.

Hope you feel a little better soon.... Pain is just so exhausting, when we have to deal with low blodcounts etc...

Best regards
Rasmus

[tytd]

Hello Rasmus,
It sounds as if you had pain severe enough to affect your quality of life and perhaps ibuprofen was the "lesser of two evils". However, in general, if you can, I would try to avoid ibuprofen on a daily basis or even sporadically if you have a platelet count that low, 10,000 to 20,000. This is for several reasons. NSAIDS, like ibuprofen, can interfere with the function of the few platelets that you have, supposedly making bleeding more likely. Also, if the ibuprofen caused stomach irritation this might make the stomach lining more likely to bleed and then you are in a real mess. I won't go near an ibuprofen or an aspirin because of my platelet count. Perhaps I am being over cautious but better to be safe than sorry. tytd

[Rasmusbja]

tytd,

You are absolutely right. I was having so severe pain that i felt like somebody was beating my lower back with a baseball bat for every heartbeat. So ibuprofen was the lesser of two evils.

I was quite worried when I started taking ibuprofen - however i got rid of the pain, and agreed with my doctor to be extra careful about bleeding signs. I also get pantoloc (PPI) to reduce the acid in my stomac.

I agree that ibuprofen is the last resort, and it should only be taken after great considerations from your doctors.

/Rasmus

[Chirley]

That pain sounds exactly like the pain I get with my copper replacement treatments. I was told it was caused by the bone marrow expanding and that it was a good sign.

I found that ibuprofen took the edge of the pain and I weighed up the risks and benefits and decided that it was worth it.

Regards

Chirley