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Auto immune conditions

Posted: 05 Jun 2013 18:25
by red
I have several auto immune conditions:
Epidermolysis Bullosa Simplex
Hyper Keratosis palmer and planter
varicose vein Eczema
Lichen Planus
on going BCCs

Re: Auto immune conditions

Posted: 17 Jun 2013 12:00
by Maggie
Having been told many months ago that my MDS is 'of a gentle kind, if indeed I do have it and that it can be very difficult to diagnose with bone marrow biopsies being inconclusive,' I was then referred to a consultant specialising in autoimmune thrombocytopaenia (ITP) which was a major problem. The ITP consultant worked at the same Centre of Excellence.

After receiving this news I rarely visited the MDS website feeling that I did not have anything to contribute.. However, visiting the website again hoping to help someone else, I was interested to note comments re auto immune conditions and MDS.

My ITP has been in remission for about a year, i.e. the count has been above 20, so I have not needed to attend the hospital and only arrange a blood count about every six months. I contribute to the website now because I too have a few other possible auto immune conditions in addition to ITP.. With ITP the platelets are being killed off by the immune system. I have severe arthritis with multiple compression fractures of my spine causing severe pain and disability, knees, badly damaged by arthritis, painful shoulders and right hip and eczema plus a history of multiple drug reactions if that is relevant

Is it now thought that MDS may be linked to the immune system? I would be interested to learn more about this.
Comments welcome.


Re: Auto immune conditions

Posted: 03 Aug 2013 23:19
by MollyP
My 65 year old husband has MDS, cmml stage 1.
He has had psoriasis since he was a boy. A couple of years ago it was horrendous and we think this also may coincide with the start of MDS.
We too are interested in the possible link to auto immune diseases and MDS.
We have been very fortunate to visit Kings and met with Prof Mufti. At this stage we do not know much about what comes next but we hope to see a dermatologist oncologist sometime in the future. Once we have I will update this post.

Re: Auto immune conditions

Posted: 05 Aug 2013 17:07
by chris
Dear Molly

Glad to hear you got your referral to Kings and I hope the MDS information you received was helpful and that your husband's counts have remained stable? I think the link with auto-immune diseases is interesting but also what the link might be with drug treatment for prior auto immune diseases. We already know that chemotherapy can be a cause of secondary MDS but, in the absence of any register for MDS patients, is anybody collecting information about the incidence of any other drug treatments - especially long-term ones - which might be implicated in the genetic changes which trigger MDS? My guess is - nobody!

Best wishes


Re: Auto immune conditions

Posted: 24 Oct 2013 10:11
by Cheryl C
I was diagnosed with hypogammaglobulinemia at the same time as MDS, but don't know which one came first. I did have chronic neutropenia for 6-7 years before the MDS diagnosis 2 years ago. I'm interested to know if there is anyone else out there with MDS who also has hypogammaglobulinemia.

My first diagnosis was RAEB-2 with 10% blasts. My haematologist prescribed 21g Intragam (gamma globulin) for the hypogamma, which we started straight away, and I'm wondering if that contributed to a drop in blasts over the next 5 months to 2%. I didn't have any other treatment. I am now classified as RCMD with <5% blasts at the last biopsy earlier this year.

Re: Auto immune conditions

Posted: 25 Jul 2014 22:47
by rosma
In 2013 I was diagnosed within a 4 month period with Crohn's disease, vasculitis, and CMML, in that order. And I didn't even feel sick, other than a persistent sore throat. Crohn's and vasculitis are or may be autoimmune diseases.

I couldn't understand statistically why I should suddenly manifest 2 or 3 rare diseases (Crohn's, CMML, vasculitis) after a lifetime of good health. I searched Google and PubMed for CMML and vasculitis and discovered that, although not common, this statistically unlikely combination of diseases has been seen previously. Likewise for Crohn's and CMML. CMML is probably the underlying cause.

Here are a few references.

Systemic vasculitis in myelodysplastic syndromes.
Oostvogels R, Petersen EJ, Chauffaille ML, Abrahams AC.
Neth J Med. 2012 Mar;70(2):63-8. Review.
PMID: 22418751

Systemic medium-sized vessel vasculitis associated with chronic myelomonocytic leukemia.
Hamidou MA, Boumalassa A, Larroche C, El Kouri D, Blétry O, Grolleau JY.
Semin Arthritis Rheum. 2001 Oct;31(2):119-26.
Department of Internal Medicine, Hôtel-Dieu, University Hospital Nantes, Nantes, France.

The association between Crohn disease and the myelodysplastic syndromes. Report of 3 cases and review of the literature.
Bosch X, Bernadich O, Vera M.
Medicine (Baltimore). 1998 Nov;77(6):371-7.
Internal Medicine Unit, University of Barcelona, Hospital Casa Maternitat, Spain.

Re: Auto immune conditions

Posted: 29 Jul 2014 11:23
by chris
Dear Rosma

Well done on your research! I think there are probably lots of links of some auto-immune diseases with MDS but not enough research into them! Often, I would imagine that clinicians treat them as though they were all separate unlinked diseases and, as one gets older and more likely to get other illnesses, it must be a bit difficult to see the wood for the trees and know which disease is causing which - if at all!!

I hope you feel you are getting help with all the separate illnesses and that your CMML is stable? If you want to reply and post about your CMML, go to the CMML topic section.

I also have CMML and have recently started reacting to different foods with urticaria and severe vomiting (in the case of a reaction to cashew nuts) so I am wondering if something is happening to my immune system! Not normally something I suffer from.

Take care


Re: Auto immune conditions

Posted: 30 Jan 2015 10:36
by NW1958
I realise that this is quite an old topic on this forum but I am intrigued about links between auto-immune conditions and MDS.

I have a recent diagnosis of MDS (Autumn 2014) but I started suffering from psoriasis just before that. In its simplest description the body produces too many skin cells and the skin surface becomes very irritated and inflamed. Sadly, I have it from head to toe.

The first question every doctor asks is: ‘do other members of your family have it’. My answer to this is yes, my father had it and my sister (who died of AML in 2011) also had it although neither quite as bad as I have it

I just wondered if other MDS patients have come across similar ‘co-incidences’ – do let me know.


Re: Auto immune conditions

Posted: 31 Jan 2015 12:58
by chris
Hi Nigel

I have also wondered about links between MDS and other conditions. See my earlier posting. Another thing that does also interest me is the link between stress and various conditions. I know that psoriasis is supposed to be triggered/ flares up when people are under stress because stress affects the immune system. It is also theorised that being under stress can cause epigenetic changes which in turn could lead to the cell damage which precedes many cancers/ clonal errors as in MDS. So maybe the emergence of psoriasis and the MDS (probably present before you were formally diagnosed!) are not coincidental but manifestations of the same changes?

Incidentally, re-reading Rosma's posting re vasculitis, I recall that when my CMML kicked off in 2008 with some very nasty symptoms (including pleural effusions in both lungs), I also had terrible pain in both arms- as though I had elastic bands tied round the top of them -and I reckon this was vasculitis - since gone away thank goodness!

If you do a search on this forum you will find quite a few posts from MDS patients with psoriasis so maybe there are links? One patient has also given some tips on something that worked for him/her - so hope that helps as having it from head to toe sounds ghastly for you.

Did your sister have MDS prior to AML? Just wondered if there might be a familial link with MDS - which is rare but not out of the question?

Best wishes


Re: Auto immune conditions

Posted: 17 Feb 2015 17:29
by NW1958
Hello Chris - sorry for delay in replying.

You definitely have a point about stress.

I have to say i am going through a good patch with the psoriasis as i have been having light therapy and have been working on improving my diet - still along way to go (skin biopsy today)

I have now got a referral to Kings (where my sister was treated) and it will be interesting to see what they think about familial links and auto immune condition links. As you say, rare but who knows.

In answer to your question, yes my sister had MDS prior to AML - something i try not to focus on.

Best wishes to you.