[jason43Participant]

Hi this is my story has anyone else ad similar diagnosis or symptoms

7 years ago aged 36 it was picked up I had irregular blood counts while being tested for something else. I was sent to a hematologist where I went through all the normal tests for myeloma including bone marrow samples. remember correctly and bone marrow samples at the lower end but still elevated. All other scans came back clear and I was asked to attend the day clinic on a 3 monthly basis. Levels of

paraprotein levels had increased slightly over 2 years and I had noticed I was feeling a touch lethargic and was prone to more infections during this time. Unfortunately I was struck down with meningitis and spent a couple of weeks in hospital and 4 month of work due to this but was told at the time it was unlikely it was connected to the MGUS. As a precaution I was told to get all my meningitis vaccinations done along with flue jab every year

Fast forward a couple of year and paraprotein levels are in the low 40s bone marrow still quite low in comparison to my bloods but I am now suffering from shortness of breath increased general tiredness. I was then put in the A symptomatic bracket

Last year after further complaining about shortness of breath I had more tests done and was diagnosed with pulmonary hypertension. After a week in a specialist heart and lung unit I had all tests possible to find the cause and was told it could only be connected to Myeloma as they could not find any other reason and had seen similar results in the past

After further investigation and more blood test I was found to have abnormal amounts levels of lgl in my blood after further investigation I was diagnosed with LGL leukemia. Along with a skin condition called morphea

So here I am now 2017 I have been on low dose methotrexate used as an immune suppressant for months to try and lower the LGL levels in my blood and see if it makes any deferens. The side effects of this is elevated ALT levels in my blood/Liver count with 3 attempts to get me to the desired level all failing

Has anyone had or know of anyone who have had similar problems

• This topic was modified 7 years, 9 months ago by  jason43.

[debbiegParticipant]

Thank you for posting on the Myeloma UK discussion forum. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.

I am sorry that no-one has yet replied to your post. I suspect this is because the situation you describe with the additional diagnoses of LGLL (large granular lymphocytic leukaemia) and morphea in addition to MGUS/myeloma is very unusual and I suspect extremely rare. Certainly my colleagues and I here at Myeloma UK have not come across this in many years of working with myeloma patients.

I am sure you will already be aware of the organisation Bloodwise who provide information and support to patients with LGLL, but in case not I attach a link to their patient information booklet here:
https://bloodwise.org.uk/sites/default/files/documents/large_granular_lymphocytic_leukaemia_Aug_2011_Interim_Update.pdf

They may be able to advise you with regard to the effect of methotrexate on your liver function, but please do ask your doctor (haematologist) to discuss this with you if you/they haven’t already.

I am sorry not to be of further assistance on this occasion. If would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332. Alternatively you can email directly to askthenurse@myeloma.org.uk

With best wishes

Debbie Gardiner
Myeloma Information Specialist

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