Tysabri side effects and hospitalisation

Symptoms and treatments
1

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.

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2

Crumbs, that all sounds really dreadful. I’m so sorry that you’ve had such a horrible time. Thank you for sharing, and I really hope that you get well soon.

3

I’m so sorry @kateandabi - sounds like you weren’t listened to at all and I’m your position, I’d feel so massively frustrated and helpless. Thanks so much for sharing your experience - a real kindness which I hope will help out others in the future.

I hope the steroids help you get back up and running, and hope you find a much better fit in terms of DMTs. Really feel for you having to go through so many ordeals and so much pain/stress PLUS an extended stay in hospital - absolutely horrific and hope you are at least feeling a bit better now?

4

I am getting better and feeling ok now, and down to just 2 steriods a day. I start on Cladribrine next month (when I have finished steriods) it’s not as effective, but hoping it won’t land me in hospital!!!

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This is from the professor of neurology at Barts.

Efficacy

High. Compared to placebo, cladribine reduced the annual relapse rate by nearly 60% and three-month disability progression by a third. The NEDA rates across the two years of the pivotal trial were close to 50%, and cladribine did slow down accelerated brain volume loss by ~0.56% per annum. The impact on brain volume loss was more pronounced in patients with clinically isolated syndrome (<0.2% per annum), indicating that cladribine’s effect is greatest when used early. Cladribine is licensed in the UK as a therapy for people naive to treatment with rapidly evolving severe MS or as a second or third-line therapy for people with highly active MS.
Cladribine - by Gavin Giovannoni - MS-Selfie

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I think it’s worth people doing their research on Tyruko as although it is the same active ingredient as tysabri they are NOT the same and people are reacting much differently to them
The push for tyruko is because it’s cheaper than tysabri