Hi
I am a 49 year old woman with active RR MS I was diagnosed about 10 years ago.
I have been on several DMT pathways. I started taking Tyroko Tysabri last November which is given by monthly infusion. In December I became unwell, with the following symptoms
Slight sore throat, itchy nose, feeling like I am going to sneeze but not sneezing, and swollen tongue some coughing.
Short breath and pain/ sore feeling when breathing in within my lungs (like cold air inhale)
Chills and body temperature drop arms and legs
Upset out of nowhere mood changes
Digestion issues bloating ect
Change in taste
Dizzy/ vertigo feeling/ tired/‘gloopy
Hair on arm bold patch/ other itchy patches
Pain on surface of toes/ feet
I went to the Dr in February after thinking in January I just had a cold or something but my breathing was getting worse, I was short of breath coughing and felt I couldn’t fill my lungs enough, I was so cold all the time and bought an electric blanket. . I was given asthma inhalers and a chest xray. In March I went back to GP and saw my MS team and said I felt very unwell and couldn’t breath properly…. I was given more inhalers and my MS team didnt think it was related to MS or my medication. By the end of March I was really feeling unwell and didnt want to go for the April infusion of Tyroko. I went back to my GP again, by this stage I was struggling to walk up stairs , I was exhausted, dizzy and felt very unwell. My GP assessed me and my sats were very low 80 over 79 and I was sent straight to A&E. From here I was put on oxygen and admitted to a respiratory ward. I was in for 10 nights on Oxygen and IV antibiotics and given all sorts of tests and scans and lung investigations.
I was diagnosed with eosinophilic pneumonitis which was drug induced and caused by the Tyruko. I want other people with MS to know about this, I knew the drug was making me feel different and no one thought the 2 things were connected.
I want to share this information to help other people not go through the awful ordeal I did? I am still on steriods now and won’t taper off them until August.