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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I was diagnosed with MDS October 2013 which was a shock. Previous to this I was doing well after being in remission from Hodgkins Lymphoma. In October 2013 had to go to A&E after getting excruciating pain and swelling on my left knee. Bloods were taken and was told platelet count was low, fluid was also taken from the swallow knee. Was referred to the Hematology team who done a bone marrow aspirate in January 2014. Was informed that I had MDS and also had pseudogout. Started Azacitidine in January 2014 and to date have had 5 cycles of treatment. Have had several problems since starting Azacitidine with infections, high temperatures. Was in severe pain and chronic swelling in my right knee and had to have a total right knee replacement in March 2014. Have also been diagnosed with Rheumatoid Arthritis and have had severe pain and restrictive movement on my right hand. Has anybody else experienced the same symptoms due to the MDS. Seen a Rheumatoid Arthritis consultant but wasn't very helpful and couldn't say if there is a link between Rheumatoid Arthritis and MDS. If anybody else has had issues with Rheumatoid Arthritis due to the MDS would appreciate any information regarding how you have dealt with it and what has been helpful. Many thanks. Sheila
- Posts: 9
- Joined: 22 Oct 2013 12:47
Have a look at this website - might be something helpful for you here:
http://www.coconutresearchcenter.org/ar ... ulling.htm
We have friends who have started ingesting coconut oil and have experienced really good results for their arthritic conditions.
Diagnosed with MDS RAEB2 Sep 2011. Now MDS RCMD + Hypogammaglobulinaemia. Main problem: WCC - neutrophils. In Watch and Wait mode.
- Posts: 249
- Joined: 20 Nov 2008 14:05
please remember that with all complementary therapies, it is extremely important to notify your clinical staff if you decide to start taking them.
Please always discuss these things with your nurse or haematologist - as alternative treatments MAY have an effect on your blood results - and MAY make it confusing if they are not aware of what you are taking.
Sophie - Patient Liaison
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