Not many on Plegridy?

[cjtmn]

I am looking into my first DMDs, and the every 14-day dosing of Plegridy is rather appealing (although side effects are not!). I have noticed that not many people are posting about this drug. It is only 1 year on the market & appears to be an improvement over Avonex, so I'm wondering why more appear to not be choosing this option. Have I missed some big red flags about this drug? Is it less effective or are there a lot of bad experiences tolerating the side effects?

Thanks,
Cheryl

[Sazed]

Had the same concerns

Although the flu-like symptoms were not as bad as I expected and have gotten much better after only 3 injections, I had a strange flank pain with the 1st two injections that perplexed my doctors.

I seem to be fine with the full dose. Only a 99.8 F fever and some achiness that lasted less than 24 hours. For the benefit of every 2 weeks, this is the way to go.

I do take a Zyrtec 2 hours prior and 2 Aleve 1 hour prior and it helps immensely. Hydrate well.

Best of luck. I think it was worth the couple of bad weeks to find a reliable DMT I can take every 2 weeks.

[cjtmn]

Thank you!

Thank you for your response. I am finding a few who seem to have worked out a routine to make shot day manageable. I just really think that an every other week regime is going to work best - I see myself getting really stressed about daily or 3x week injections.

Thanks again!

[holliedog]

I took Copaxone daily for 9 years, Rebif 3 times a week for 7 years, and have now been on Plegridy since January.

I have been tolerating Plegridy very well. For me the side effects are less than they were with the Rebif. I do not get the fever, chills, flu like symptoms as I did with Rebif. The only issue I experience is a very bad headache for a few days. We have been working on managing that with prescription Aleve every 12 hours before injecting and for 2 days after. And this seems to be working. I also had the headache with Rebif but not quite as bad.

For or me it has been wonderful only having to inject every 14 days. Since I have been injecting for so long I have been running out of places to inject so for me this has been a blessing.

[cjtmn]

Moving ahead..I think

Thank you for the replies! As of this second, I plan to give Plegridy a try as my first DMT. Does it take time to build up like Copaxone? Or does it start to work faster?

[lefty12]

Suspended Treatment

Hi, I took my first DMD late in my disease and choose Plegridy because of the needle phoebe I am. Once every 14 days appealed to me. For me it started out fine. Like all the information states, I got all the symptoms, and more. 5 blood counts dropped below the normal ranges, RBC, WBC, Platelets, Hemoglobin and Hematocrit. My blood tests showed no negative effects on my liver. After approx. 6 months on Plegridy, my neuro and I suspended the treatment to see if my blood counts would rebound. WBC is the only one that did, the other 4 did not. Right now I am in limbo. My last blood test was approx. 2 weeks ago. My neuro and I will have a sit down meeting in Feb. 2016 and discuss further testing for low BC's and new, if any, DMT. We are all different. (-_-)

DX'd in 1994. 1st DMD in 2015. Age 59.

[cjtmn]

I'm still waiting...

Thanks for chiming in lefty12! Please report back after you and your neuro figure out your next steps. I know we all will have different reactions and responses to these drugs, it is really helpful to also know what things to look out for.

I am STILL waiting. My Dx wasn't official until mid-November, and my insurance denied the first request. So now I wait to see if my neuro's appeal is accepted or denied, which can take up to 30 days. So, I am guessing I won't start on anything until January or maybe February. I feel fine with this most days, to be honest, but I worry about what on-going damage may be happening while I wait. This flare up started Sept 13th, and we now know that I have had this for at least a year (probably much longer).

Merry Christmas to all who celebrate and a happy, healthy 2016 to us all!