question regarding post BMT problem

[Guest guest]

Hi

I am in the Uk and had a 'mini' transplant at the end of October. My

donor was my sister and I had the easiest transplant ever.

I had DLI at the end of May as I was not yet 100% donor cells

although I was PCRU.

About 8/9 days after the DLI I developed a really awful

conjunctivitis and joint pains. As the eye settled down the joint

pains (in about 6 joints got worse). Eventually I could not even

walk. I was taken into hospital and gout was ruled out and they

decided I had Reiters Syndrome or a reactive arthritis. I was put on

pain killers and a low dose of steroids. I was still in pain so on

Monday my steroids were increased to 60mg daily. Yesterday I had a

pretty good day, pain wasn't too bad and yet today the pain is awful

and I can scarcely walk.

My doctors have never seen this before and really have no idea why I

have developed this. The treatment is just to treat the symptoms.

They don't really think it is connected with the DLI although the

timing is compelling.

I was just wondering if anyone has seen/heard of anything like this?

thanks

in London

Leigh

Home: 0208 958 8753

Note New Phone Number

Mobile: 07956 269368

email: susan@...

www.caringbridge.org/visit/susanleigh

skype ID: susan-leigh

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>

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[Guest guest]

>

> Hi

>

> I am in the Uk and had a 'mini' transplant at the end of October.

My

> donor was my sister and I had the easiest transplant ever.

>

> I had DLI at the end of May as I was not yet 100% donor cells

> although I was PCRU.

>

> About 8/9 days after the DLI I developed a really awful

> conjunctivitis and joint pains. As the eye settled down the joint

> pains (in about 6 joints got worse). Eventually I could not even

> walk. I was taken into hospital and gout was ruled out and they

> decided I had Reiters Syndrome or a reactive arthritis. I was put

on

> pain killers and a low dose of steroids. I was still in pain so on

> Monday my steroids were increased to 60mg daily. Yesterday I had a

> pretty good day, pain wasn't too bad and yet today the pain is

awful

> and I can scarcely walk.

:

I worked in a BMT unit for many years and have never seen these exact

symptoms either. Just a thought but I have seen an allergy

transplanted from the donor (who had it) to the recipient (who never

had it before). Perhaps your symptoms may be related to the fact

that with the donated marrow comes its own immune system that already

has some existing capabilities to attack something.

Are you on any other meds besides the steroids?