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Extremely painful tendons

Hello All,

Questions for those folks on Tocilizumab.

This is the only drug I take now, 600mg IV every 4 weeks. I have been finding that my achilles feel like they are going to snap. I have brought this to my Rheumy and have just been advised to keep cycling to loosen them up. All good 30 minutes of cycling, then 10 minutes after getting off bike I can hardly walk as they are so incredibly tight and sore. Physio helps by using ultrasound (lasts maybe an hour), trigger point injection therapy works for maybe 2 hours, Fascia release therapy just pomes a bunch of holes in me and the.n my inflammation goes up.

What are you guys doing to keep tendons and ligaments from becoming so tight?

I have sero negative Rheumatoid Disease (still no actual diagnosis), currently being treated for Adult Onset Still's Disease.

Cheers

Scott

3 Replies
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Hi Scott. I was on tocilizumab weekly injections. Although my esr was very low on this drug and my ra looked as if i was in remission these results were completely at odds with the way i felt. I had extreme muscle pain in my arms, calves, thighs and my neck was so stiff i could hardly move my head. This led to bad headaches and dizziness. I had never had these kind of symptoms until i started tocilizumab. My rheumy nurse thought i may have developed fibromyalgia but i was convinced it was the TOC. I asked if i could have a break from the TOC to see if these symptoms subsided. To my surprise the rheumatologist agreed. Within a week of missing the injection, all the muscle aches subsided and my neck improved and the headaches stopped. I am still not having the injections and am due to see the rheumatologist next week to discuss this. I am not trying to influence you in any way as we are all different but i wanted to give you the benefit of my experience.

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Thank you very much. I have been lead to believe that the pain in my legs and neck were all in my head. I did see a muscle doctor who agreed with me as she could see and feel the tightness in my my neck and legs. She was supposed to send a letter to my rheumatologist explaining what she found. I am not sure if that was done as my rheumy said that he had not hears from her.

Oh well, I will now speak with my rheumatologist and his nurse about changing frequency of treatment or changing it all together.

I appreciate your reply.

Thank you

Scott

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Hi, I am Sero negative and although the self injecting did not work, after 5 months on Tocilizumab infusions I feel much better. I also take prednisolone and methotrexate so quite a cocktail! But, it's starting to work and that's good. My experience of stiff/tight muscles is to keep using them within reason, have massages and hot or cold compress depending on what works on the day. I don't think there is a perfect solution but don't give up!

Have a happy weekend....Lesley

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