Auto immune conditions

Folder for messages about the potential link between auto-immune disease and MDS. Post about your personal experience with auto-immune diseases - such as chronic joint inflammation, low platelet counts of unknown cause, blood vessel inflammation, muscle pain in hips or shoulders, artery inflammation, or psoriasis.

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chris
Posts: 593
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Auto immune conditions

Post by chris » 20 Feb 2015 11:31

Hi Nigel
Good to hear of improvement in psoriasis.Hope dietary changes are effective too.

I am sure Kings will look closely at any familial links.A lady I know locally has MDS ( also at Kings) as did her 2 brothers so maybe something in your genetic make up is an indicator for both the psoriasis and MDS?It's all an area in which more information is bring discovered and,hopefully,this will lead to individually tailored treatments.

Hope your appointment comes through soon.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
NW1958
Posts: 11
Joined: 13 Nov 2014 11:30
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Re: Auto immune conditions

Post by NW1958 » 03 Mar 2015 16:26

Hi Chris
Assessment at King's yesterday, BMB and armful of blood which should allow them to analyse familial links.

Prof Marsh was interested in the possible dermatological connection and one of the specialist nurses commented how they regularly see patients with blood disorders also with skin conditions. (She also commented that she remembered my sister which was lovely and a little disconcerting at the same time).

My psoriasis is on the increase again as i have had to stop the light therapy whilst the biopsies are carried out but hopefully i'll be back in the routine soon.

So, back to King's again at the end of the month for some results. It's true, you really do get to understand the words 'watch and wait'!

Hope you are keeping well

Regards
Nigel
Male, Aged 56, Still working, Recent diagnosis, Based nr Exeter
chris
Posts: 593
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Auto immune conditions

Post by chris » 06 Mar 2015 15:45

Hi Nigel

What a day you had yesterday.. and now the wait begins!! Had you seen Molly's post right at the beginning of this chain re her husband having had psoriasis since childhood. I don't know how it is at the moment with him but it would be worth asking her? There is so much we don't know about but interesting that the nurse has seen a link with skin diseases?

Yes I am keeping well, thanks though can't wait until the winter is over and all the lurgies go away!! I feel I have been surrounded and lots of friends with decent immune stystems have been suffering very badly so I am hoping not to succumb!! My daughter is pregnant for the first time and has had 4 colds/coughs since Christmas. I know the immune system is suppressed when pregnant but every time she gets something it means I can't see her for over a week in case she is still infectious :( . It is a worry with this MDS that when I have a grandchild I cannot look after him/her when they are ill as that would be quite a risk for me. Young children are a real source of infections so it will be a bit of a challenge - not one I would have chosen.

Hope the time goes quickly for you and best of luck with the results.

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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