I’ve just joined. I’ve been battling Polymyositis (anti SRP) for 2yrs, it has changed my whole life. I can no longer work, go to the gym and it has ruined my relationship. Some days I get very down with this horrible disease.
I’m currently having cyclophosphamide infusions, but they don’t seem to be helping much (3 so far). I just wondered if anyone is on Rituximab and how it has helped them, or if they are even now in remission?
Hi Alison, I know that we have others in the group on this drug, so I'm excited for them to hopefully chime in and give you some insight to their experiences.
High Alison, sorry about all your problems :( Dermatomyositis that I developed 10 years ago almost killed me, I tried every drug possible and was about to give up. I starting Rituximab infusions every week and it cured me. Keep trying and take good care of your body you will get better! David
Thank you for your kind reply David. I’ve been fighting this disease for 2ys and already feel like giving up! Have my third cyclophosphamide infusion on Monday, but my CK is still rising! I have written to my consultant begging for Rituximab as it seems to work really well. So glad it has helped you.
Regards
Alison
Alison,
I have not heard of this wonder drug, Rituximab. I plan to look into it for my husband, who has IBM, stage 4. He is currently undergoing IVIG infusions. I,like you , do not see much change, however being "positive " keeps us filled with hope.
Myositis is a dreadful disease. Many people as well as doctors are familiar with this disease. I was not until it happened to my husband. I am still learning. One day soon I plan to get out and began a raise awareness campaign; after caring 24 hours a day for my husband.
So, Alison, on the days that you become down, try “looking UP”. Although you are physically and emotionally tired, you are truly a STRONG PERSON, especially fighting this disease.
Linnie
The Circle of Support
Hi Linnie… thank you for your message. I think Rituximab only works for PM and DM, but sadly not for IBM. However there is another drug being used for IBM sufferes called BYM338, perhaps ask your husbands consultant about this. I will try and stay positive, keep strong too, sending you hugs.
Alison x
I was dx DM April 2007. In 2009/10 I went through a series of Rituximab infusions. I have to say, that was our best decision and choice of action as the other standard meds were not working except for prednisone which I will only take in an extreme emergency. Rituximab helped so much that, according to paper, I am in remission - physically however, I'm not (I'm sure it has a lot to do with the crossover dx ie raynauds, sjogrens and undergoing testing for lupus). Meaning my cpk was over 10,000 at dx, but since infusions, has maintained under 1,000, even as low as 300 which under 500 I'm told is normal range. I have also heard others say it didn't work for them. So as we have learned - each person is a unique case. I hope it's a positive option for you! Please keep us posted!
Thanks for your reply
Crikey a CK over 10,000 is very high! So glad it worked for you, every success story I hear makes me want to try Rituximab even more. I have my next cyclophosphamide infusion on Monday which I’m dreading, as the side effects are dreadful, and I don’t even feel like it’s working.
I will keep you posted.
Just had some great news… my consultant has agreed to be having Rituximab in 2 weeks time! I know there are never any guarantees that it will work, but I’m so happy he’s at least giving it a try.
That is fantastic Alison!!! Rituximab was my miracle drug. I only had to do two full rounds and it has kept me off prednisone for 3 years now! I'm now only on plaquenil and muscle relaxers. Praying it works for you. Please keep us posted!
Thank you. I’ve been feeling so down lately but this has really cheered me up! I’m a bit nervous of the side effects but trying to keep positive. It’s great that it has helped you and your story gives me hope. I will keep you posted x
Honey it takes a lot of courage to get through all that our Dr's want us to try over the years and we have to have hope to take us through it all I have heard a lot of story's about meds so never give up and always research it all we have to look out for our self's for sure. You are young and strong and don't ever think other wise you are meant to be happy and strong the body is so strong just take it slow and rest when you feel you need it and you will get by I will be thinking about you. Bethann
My good friend Julissa has the anti srp antibody as well. She has had this disease for twelve years. Her family is very supportive and I believe she is alive today because of their help and support.
No drugs worked well for her. She experienced much muscle weakness and necrosis over the years which severely impaired her ability to do daily activities and at this point move. However, since starting her Rituximab infusions in 2013, she has seen significant improvement in her condition. She is doing so very well on this treatment and I want to tell the world that if you have the anti-SRP antibody it can help.
I just returned from the conference and the doctors told us that she is part of the 50% of patients with the anti-SRP antibody that the drug will work on. She was happy to hear that.
I too have experienced much success on Rituximab. It helped me go into medicated remission. I get infusions every 6 months and I feel great.
I hope this helps. Please know there is definitely hope expecially since you will be starting the drug early. If you are part of the 50% that it works on, it will definitely interfere with the disease course and will help you stay on your feet longer than without it.
Please stay strong and keep the faith. There are a number of drugs that can help you. Also, remember that you are not alone. This disease has brought me into contact with many many wonderful people I feel honored to be fighting alongside.
Nice to meet you.
My email address is ■■■■■■■■■■■■■■■■■■■ if you want to email me further questions.
