Re: Re: question regarding post BMT problem

[Guest guest]

,

Thank you for your reply. I am also taking tramodol for the pain.

Aciclovir, lansoprazole and an anti-histamine. I also take septrin at

the weekends.

My sister doesn't have any allergies except to penicillen. She also

had a medical and blood tests prior to donating the cells for the DLI.

The whole thing is very peculiar.

Leigh

Home: 0208 958 8753

Note New Phone Number

Mobile: 07956 269368

email: susan@...

www.caringbridge.org/visit/susanleigh

skype ID: susan-leigh

On 2 Jul 2008, at 12:35, wrote:

>

> >

> > 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?

>

>

>

[Guest guest]

Hey :

 

You are probably already aware of and using the ACOR BMT chat group.  You will

get alot of information from this group.  They will have the answers.  The road

of transplant is never smooth or easy.  I am PCRU also and had my transplant Feb

07 with an unrelated donor.

Still ironing out issues and am half way through a taper off immunosupressants. 

It looks like it cured my CML so I am glad to be surviving this path.  Good

Luck.

 

Therese

>

> >

> > 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?

>

>

>

[Guest guest]

Thanks Therese,

Yes I did post on the ACOR group but got no response so far......

I wish you well.

Leigh

Home: 0208 958 8753

Note New Phone Number

Mobile: 07956 269368

email: susan@...

www.caringbridge.org/visit/susanleigh

skype ID: susan-leigh

On 2 Jul 2008, at 19:54, Therese Stone wrote:

> Hey :

>

> You are probably already aware of and using the ACOR BMT chat

> group. You will get alot of information from this group. They

> will have the answers. The road of transplant is never smooth or

> easy. I am PCRU also and had my transplant Feb 07 with an

> unrelated donor.

> Still ironing out issues and am half way through a taper off

> immunosupressants. It looks like it cured my CML so I am glad to

> be surviving this path. Good Luck.

>

> Therese

>

>

>

> >

> > >

> > > 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?

> >

> >

> >

>

>

[Guest guest]

Hey :

 

Thats odd.  Usually everyone shares the knowledge.  I haven't had to much joint

pain (knock on wood!) and I had two DLI's last year because my cells were slow

to come in also.  I have had some minor gvhd issues and lung infection.  Another

good info site is  the ACOR GVHD site.  I have read quite a few posts regarding

joint mobility and pain.  Look in the archives I think it was a recent topic

being talked about.  Best wishes and hang in there.

 

Therese

>

> >

> > >

> > > 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?

> >

> >

> >

>

>

[Guest guest]

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_____

From: [mailto: ] On Behalf Of

Therese Stone

Sent: July 2, 2008 2:54 PM

Subject: Re: [ ] Re: question regarding post BMT problem

Hey :

You are probably already aware of and using the ACOR BMT chat group. You

will get alot of information from this group. They will have the answers.

The road of transplant is never smooth or easy. I am PCRU also and had my

transplant Feb 07 with an unrelated donor.

Still ironing out issues and am half way through a taper off

immunosupressants. It looks like it cured my CML so I am glad to be

surviving this path. Good Luck.

Therese

>

> >

> > 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?

>

>

>