Re: Digest Number 1189

[Guest guest]

,

I am your English correspondent ( my wife Ann has rp ). There was a

newsletter based group in England some time ago ; we never really had any

contact and I think the group has folded.

I am set to receive the digest messages and that meets my needs. I

occasionally make comments but generally just keep up to date with

experiences of everybody else who are of course mostly US. This is helpful

because there are so few cases in the UK and therefore so little

experience. I would find it helpful to swap notes with others in the UK in

case there is the rare source of expertise in England .

Ann has continued to struggle with her breathing ( coughing ) and trachea.

Since diagnosis she has been treated by 2 chest physicians but her latest

professor has decided to involve a rheumatologist to try to get the

medication right. He studied Ann's notes and had a long discussion ( Ann

has been on varying doses of prednisalone - 15 to 20 mg and has tried most

of the immunosuppressants with varying success.) The rheumy is now going to

try Ann on a longer run of Methotrexate - hardly exciting but probably the

most reliable ; if that fails I suspect he will try various combinations

of others. I think he is going to bring a more systematic approach to

treatment although Ann will need the chest Prof. to handle the damage to

the trachea and lungs.

In my recent occasional foray onto PUB MED I noticed an article from a

German team ( Rosen. O and others ) which claims to have used autologous

stem cell transplantation successfully for rp and lupus. ( this is where

you wipe out the immune system and then regrow it from stem cells extracted

earlier and it then behaves itself ) I know it is a highly risky treatment

and the new rheumy confirmed this. But he also said he thought that a Prof.

in a Leeds hospital had had a lot of success with rheumatoid arthritis

cases which had not responded to other treatments. I shall try to find out

more . I don't think it will help the majority of the group but I think

anyone who gets really ill and nothing is working should raise it with

their consultant.

Happy Thanksgiving to you all

We went to South Pacific last night which cheered us both up.

Dawson

Chester , England

IMPORTANT NOTICE:

This email is confidential, may be legally privileged, and is for the

intended recipient only. Access, disclosure, copying, distribution, or

reliance on any of it by anyone else is prohibited and may be a criminal

offence. Please delete if obtained in error and email confirmation to the

sender.

[Guest guest]

Pat,

my apologies there is a UK rp support group. I came across a letter from

Anne Colman ( 21 Stane way, Leam Lane, Gateshead, Tyne and Wear, NE10 8LR

- tel 0 , email as above ) who is the Uk coordinator for a UK

group . It was sent last March but I was recovering from prostate cancer

and overlooked it. Suggest Colin contacts Anne direct . I am also happy

to talk to Colin if that helps ( although it my wife who has rp ). My work

tel no is 01928 511289 ; if I am not there pls leave a number and I shall

return the call

Anne,

attached is the background to this request. I hope you are able to help

Colin.

As you can see I am plugged into the US internet group but on behalf of my

wife would welcome news of any developments or expertise in the UK . An

update on Ann is given below

,

perhaps you can note Anne Colman' details for future reference

" Dear ,

After looking up polychondritis on the internet for my cousin, I found

the name of as a contact in U.S.A.

My cousin Colin was diagnosed a few months ago, and since then has been

trying to find fellow sufferers of the disease. His consultant advised

him that there are no other sufferers in the Northampton area where he

lives, and also that he cannot advise him of a support group anywhere.

As Colin does not currently have access to the internet, I said that I

will do my best to try to find the address or phone number, if such a

group does exist.

It would be so beneficial to him to be in touch with others who

understand his problems and what he's going through. If there is any

way that you can advise me of a contact address or phone number, it

would make such a difference for him.

You can contact me at my office on pat.colebourn@...

I thank you most sincerely for your help, and hope to hear from you

soon.

Kind regards,

Pat

---------------------- Forwarded by G Dawson/GB/CPBS/ICI on 27/11/2000

09:51 ---------------------------

G Dawson

23/11/2000 10:53

To: Rpolychondritisegroups

cc: " Pat "

Subject: Re: Digest Number 1189 (Document link not

converted)

,

I am your English correspondent ( my wife Ann has rp ). There was a

newsletter based group in England some time ago ; we never really had any

contact and I think the group has folded.

I am set to receive the digest messages and that meets my needs. I

occasionally make comments but generally just keep up to date with

experiences of everybody else who are of course mostly US. This is helpful

because there are so few cases in the UK and therefore so little

experience. I would find it helpful to swap notes with others in the UK in

case there is the rare source of expertise in England .

Ann has continued to struggle with her breathing ( coughing ) and trachea.

Since diagnosis she has been treated by 2 chest physicians but her latest

professor has decided to involve a rheumatologist to try to get the

medication right. He studied Ann's notes and had a long discussion ( Ann

has been on varying doses of prednisalone - 15 to 20 mg and has tried most

of the immunosuppressants with varying success.) The rheumy is now going to

try Ann on a longer run of Methotrexate - hardly exciting but probably the

most reliable ; if that fails I suspect he will try various combinations

of others. I think he is going to bring a more systematic approach to

treatment although Ann will need the chest Prof. to handle the damage to

the trachea and lungs.

In my recent occasional foray onto PUB MED I noticed an article from a

German team ( Rosen. O and others ) which claims to have used autologous

stem cell transplantation successfully for rp and lupus. ( this is where

you wipe out the immune system and then regrow it from stem cells extracted

earlier and it then behaves itself ) I know it is a highly risky treatment

and the new rheumy confirmed this. But he also said he thought that a Prof.

in a Leeds hospital had had a lot of success with rheumatoid arthritis

cases which had not responded to other treatments. I shall try to find out

more . I don't think it will help the majority of the group but I think

anyone who gets really ill and nothing is working should raise it with

their consultant.

Happy Thanksgiving to you all

We went to South Pacific last night which cheered us both up.

Dawson

Chester , England

IMPORTANT NOTICE:

This email is confidential, may be legally privileged, and is for the

intended recipient only. Access, disclosure, copying, distribution, or

reliance on any of it by anyone else is prohibited and may be a criminal

offence. Please delete if obtained in error and email confirmation to the

sender.