Pelegridy opinions.

[Doubled51]

Hi. I'm new to the site. I'm 65 years old and was diagnosed with ms the first week of April after an episode of losing use of my left arm and weakness and dizziness unbelievably bad. After a week in the hospital and 3 me is later I was diagnosed. Thank God for steroids a week later I walked out of wheel chair to my wife waiting for me. Since then I've been plagued with almost constant fatigue tingling in legs and feet and trouble walking straight. I wobble everywhere. I am scheduled to receive my first shipment of Pelegridy today. Just wondering if anybody is using it and if it's helping and how are the side effects. Thanks in advance from a newbie still learning how to deal with all associated with this surprise

[Royjr]

Welcome to the best chat about MS. I personally don't take that medicine but I'm sure someone in this room has.

[Doubled51 in reply to Royjr]

Thanks for allowing me the privilege of membership as all this is new to me

[SueAB]

@Doubled51, Welcome! I know you are overwhelmed right now since MS is a disease all to its own. I'm sure you'll have a hard time believing me right now, but you can do this! I have lived with MS for 30 years and even though I have learned to make adjustments, I have a good life and so can you!

[Doubled51 in reply to SueAB]

Thanks for the welcome. I went thru an angry questioning period in the beginning but have accepted the diagnosis and moved on with my life. The fatigue is hard to deal with as I was a very active person who loves this time of year. But hopefully the amantadine my Dr prescribed will help soon. The gabapentin has helped my almost unbearable neck and shoulder pain greatly. So all in all I'm doing well for now. My Pelegridy should be here anytime so I can start my treatment plan. Thanks again and God bless.

[jackiesj in reply to Doubled51]

Thank you for admitting anger...me too...

[SueAB]

I am not familiar with Pelegridy. Help me out!

[Doubled51 in reply to SueAB]

My insurance wouldn't cover tecfidera oral so I was prescribed Pelegridy which is and injectable drug used to help prevent relapses. It's called peginterferon beta.

[jackiesj in reply to Doubled51]

I would guess like any other med possibly weeks to a couple months to make sure it works, did the doc give pamphlets?manufactuere may send some....

[Doubled51 in reply to jackiesj]

Biogen website will offer all the information you could possibly imagine.when I started their support team has been awesome. I get calls emails asking how I'm doing reminders when my injections are due. And a full leaflet pack in every shipment of injections I receive. They worked with me on the copay assistance program. They have been great to deal with. Neuro says probably 3 to 4 months but we were excited that last MRI had no new lesions. It was a little over 2 months. I started my 3rd month Tuesday. So hoping for the best. Have c spine MRI this Sat and hoping for the same results.

Donnie

[Iona60]

Doubled51 Welcome to our MS family. Hopefully, after you get on Pelegridy, your symptoms will calm down. Most of our, or maybe just my, MS symptoms are caused by inflammation. All of the MS drugs seem to target inflammation. It will take a while for you doctor to find just the rigth mix of meds to control your symptoms as much as possible. I hope you are feeling better soon.

[Doubled51 in reply to Iona60]

Thanks. Hopefully this will improve when I get started. Having another neo around1st of June to see what's happening.

[Doubled51 in reply to Doubled51]

MRI is what I was trying to say. Lol

[greaterexp]

Doubled51 , I'm sorry for your diagnosis, but am so happy you found this site. What an incredible blessing it has been for me! I know you'll find lots of information and support here.

I'm sure someone will be able to share information with you about your specific treatment. We have a great, knowledgeable group of folks!

[jennie62]

Doubled51

You have found the best group of people here (at least I know I have). There are people here who share some really good information and if you need a good laugh you'll find some great funnies here and if you need to vent go right ahead. I'll be here for you as will the others. Welcome to a wonderful group of people!

I'm so happy I found them and I glad you're here too!

Jennie

[Doubled51 in reply to jennie62]

Thanks to you all. Have a great and blessed.

[Hidden]

I was on Betaseron for 6 years and gladly switched over to Plegridy, which I've now been on for a year and a half...from every other day injections to just every other week was, to me, a dream...still get the red "rash" but with only doing the injection every other week it gives that spot a chance to calm down before it's next time in rotation...with the Betaseron it got to be quite the challenge finding an open spot. And I occasionally get the "flu like symptom", but oddly enough it's not till maybe a day or two after...no relapses. It's not as scary giving the injection with the epi-pen style injector.

[Doubled51 in reply to Hidden]

Thanks. I should receive my starter kit in mail today. Looking forward to starting a treatment plan of some kind. Praying that is works. Thanks for the indi. Have a great day

[Hidden in reply to Doubled51]

do you have the option to have a nurse from Biogen come out to help out for the first go around? I found that helpful and very thorough...and don't worry...

[Doubled51 in reply to Hidden]

Things have been reschuled. Will have representative coming tuesday to teach me how to give injection on starter kit. Hoping for the best. Good luck to you.

[Hidden in reply to Doubled51]

it's a good idea...especially if you are new to giving yourself injections...it will be a breeze! good luck.

[WAshingtongirl in reply to Hidden]

I believe you may be new as well, Hidden . Welcome!

Thanks for sharing your experience with Pelegridy. Please post whenever you feel comfortable doing so. We hope to get to know you better. 💕

[seshultz]

Hello! I read your post and decided I had to reply. Not familiar about pelegridy, but your age intrigued me. I was diagnosed when I was 64, 5 years ago! I have read since it is very rare for a person in their 60's to have a relapse. That's when I had my worst and is when I was finally diagnosed. I had an aneurysm in 2015 and in hospital for 2 months and on no med for my ms. I have been on aubagio, but stopped that because of very high blood pressure. I thought the med was doing that but have since found that not to be true. I have chosen to stay off med for time being, although I do have 32 more lesions since that aneurysm. I have for the most part been doing pretty good. I have to have an MRI in August to see if any worse. I find it very strange that we were both diagnosed in 60's when it is supposedly very rare to have a relapse. Good luck to you on your new med!

[Doubled51 in reply to seshultz]

Same here. I diagnosed with ADEM in the hospital but my first visit to my neurologist he diagnosed my as having had ms for a while after reviewing my MRI. Many of the lesions were old so i was diagnosed with various ailments over the years. All from never having a brain MRI. That would have saved me a lot of pain that I've lived with for. I was diagnosed with arthritis among others for severe neck and shoulder pain. After my neurologist prescribed me with gabapentin my pain is 90 percent better. A lot of years of suffering from misdiagnosed. I've lived on Percocet and fentanyl for years for no reason. The gabapentin has done what narcotics never could. I received my first script of Pelegridy today and should have home health representative come tomorrow to show me how to give injections. So I'll see how it goes. Have my next MRI round the first of June to see how things are going. Except for me fatigue and numbness and tingling in my feet I've felt pretty good. The gabapentin is supposed to help with the feet but hasn't worked. Good health and God bless.my friend.

[WAshingtongirl]

Welcome, Doubled51 , we're sorry you've joined our 'club' but are happy you found us. It sounds like you have come to terms with your recent diagnosis. Isn't it amazing how even a little improvement brings great joy? MS certainly makes you appreciate the little things.

I've found great friends and encouragement here. I hope you do as well. I'm praying the medication provides you with relief and hope. 💕

[Doubled51 in reply to WAshingtongirl]

Thanks and good health to you. God bless..

[melack01]

Welcome. I am also newly diagnosed and just started my medication today... so far no side effects. I am on Tecfidera (my choices are what the VA recommends). My testing started after going to the emergency room because of a sinus infection. They did x-rays and noticed lesions.

[Doubled51 in reply to melack01]

I was prescribed tecfidera but Medicare will not cover it without trying cheaper stuff so I was prescribed Pelegridy. Scheduled for first injection on tuesday. Good luck with you tecfidera.

[melack01 in reply to Doubled51]

So far it causes flushing, especially stinging so much on the legs I couldn't sit down. Some of the possible side effects were worse, so I'm happy with that.

[Doubled51 in reply to melack01]

I get my first injection tuesday so I'm go hoping for the best. Thanks and God bless. Good health to you.

[Doubled51]

Well had my first Pelegridy injection today. So far so good. Praying for the best. Let y'all know how things go.