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Newly diagnosed and Plegridy Injections

Hello people. :slight_smile:

I was diagnosed end of May this year, having had three episodes of right side paralysis in one week. Terrifying isn’t the word! Mri showed two plaques one on each side of the brain. It explained my on-going “knee giving way” problems and the pins/needles in my foot etc. and after my initial shock/tears/fears, I actually felt satisfaction that I HAD been right!

18months of out patients appointments, knee xray, knee mri, spine mri… it took a kidney infection and hih temperature to bring these episodes to the fore and so my brain mri and diagnosis. Anyway, I have choses to inject Plegridy as my twice a month medication. I only had my second dose Monday. Tuesday mt walking was awful. I barely managed an amble around a few shops with hubby, before I could hardly get back to the car, hanging on to his arm, and this lead to tears over lunch. Wednesday I told him I just didn’t feel like me that day and I didn’t like it. More tears! I’m frightened this is how it’s going to be. I believed that the medication would improve things as well as prevent further deterioration, or at least, slow it down. It seems that my walking was getting much worse, and so quickly. I have my third injection in two weeks and that will bring me to full dosage then. Hubby is trying to re assure me that it is only until my body is used to this medication, and it is mimicking my MS symptoms. Can anyone else share their experiences with Plegridy or other injections please? Thank you.

Nobody injecting? Nobody with similar symptoms?

I know nothing about Plegridy (is that the one that’s only available in Scotland?) but I assume that it’s a beta-interferon of some sort and I was on one of those - Avonex, weekly I/M injection - for many years.

It’s a hairy time, starting on a DMD, for all sorts of reasons. Firstly, your MS is new to you and there’s a lot of shock and distress and anxiety going on in a person’s life, and some loss of confidence in life’s ability to be OK and normal. Two, your MS is maybe pretty active as it can be when it first comes to call, so signs of disease activity are not necessarily the treatment’s fault but more likely to be the MS at work. Etc.

Hang on in there. Your OH’s advice is spot on, I think. It’s a tough time and will take a bit of getting used to, but try to be patient.

On a practical point, have you been given advice about taking some normal painkilling medication to ease any side effects of injections? If not, it is worth talking to the MS nurse or whoever you talk to. Probably worth talking to the nurse in any case to get some reassurance about how you are feeling and that things will get better for you.

Good luck.

Alison

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Plegridy is interferon beta-1a as Avonex and Rebif but formulated to stay in the body longer so much less frequent injections. And, yes, it hasn’t been evaluated by NICE yet but has been accepted for use within NHS Scotland, http://www.mstrust.org.uk/atoz/peginterferon-beta-plegridy.jsp.

Plegridy wasn’t available when I was prescribed DMT but was on another interferon beta (interferon beta-1b [Extavia] which is interferon beta made another way) .

During the first couple of months it gave me a high temperature within hours of taking it and my walking deteriorated with the increased body temperature. I guess the cycle of side effects will change as the dosage cycle has changed. My nurses were very helpful with the side effects and any MS matters.

DMDS decrease the number of relapses and their severity but improving things is unlikely.

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Thanks for replying Alison. I’m in Ireland btw.:slight_smile:

Everything you’ve written is spot on. However my ms nurse has told me that medication can help myelin repair/ regrow if the damage isn’t too severe. I have had the possible side effects explained to me as well as having read about them. I think I may be expecting too much too soon.

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Vithfari. Thanks for that. I think I agree with you. I’m hoping effects will be change with the cycle. I will only be on full strength prescription in two weeks.

Forgot to add I talk to ms nurse Monday and will run all this past her. I’m hoping she’ll tell me this is normal to be expected.

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Hi, I have sent you a pm.

ann

Thanks Ann. Just replied. :slight_smile:

Came across this on here. Might be of use to someone.

http://www.mssociety.org.uk/ms-news/2015/07/ms-drug-plegridy-approved-wales

I have my third injection on Monday. It has been prescribed in increasing dosage. Monday will be my first full dose. So far so good…no real side effects. A few flu-like symptoms after the very first shot. I felt my walking had deteriorated after my second shot, (but I don’t know if that was as a side effect or not). Be interesting to see what occurs after the third one when full dose! :-/

Hi

I’m newly diagnosed too, only a few weeks ago, and have agreed to try plegridy too. I’ll be starting it in a couple of weeks, hopefully it will be the right choice for me.

I’m just starting back to work tomorrow after a month off following a recent relapse (it’s left sided for me) and I’m hoping that I have no side effects that will stop me attending work. After reading what you said about the walking the next day scares me a little.

Anyway hope all goes well for you tomorrow after your first full dose.

Regards Tam

Hi Tam. Good to get a response on here from you. Began to think I was invisible! :slight_smile:

Don’t be worried. Everyone is different and will react differently. I probably just tried to walk for too long, and too soon. After my first dose, I took Parecetamol before bed and had mild flu-y symptoms. No problems next day. That’s probably why I was surprised/disappointed with second lot. Have the third one tomorrow.

I had a chat with my MS nurse when she phoned to see if I’d started the medication. When I explained about my walking after the second injection (and how tearful that had left me) she was very reassuring. She told me I was indeed a bit too ambitious after only two injections. Also, perhaps next time, to leave the day after the injection free, as such, and not undertake anything too strenuous/important. She explained that, by the time I get to see my Neurologist, (end of August) it will have been three weeks since my diagnosis. I will have had two full doses of Plegridy and a fuller picture of my side effects will be available by then. If we feel it isn’t working, we can try something else. Hoping I don’t need to. Don’t want to chop and change.

Hi poppy,

I did notice elsewhere on this forum that people say that’s it been quiet lately but I’ve mainly just been reading most posts but yours seems very relevant to my situation as you seem to be just a few weeks in front of me, so thanks for the info. :relaxed:

I suppose I’m like you in a way as I’m hoping it’s going to be all right with me as I don’t want to have to chop and change to find the right combo for me.

I’ve yet to receive my MS nurse appointment so still don’t know when I’ll be starting the plegridy but hopefully soon.

Hope all went well today and your ok tomorrow.

Tam.

I was admitted to A&E having had two episodes in the small hours. Was treated for dehydration and resulting uti. I was told it was the infection that exacerbated the attack. (plus I’d only returned from four weeks abroad with daily temps of 35/40C. As you might have been told now, MS doesn’t like the heat…). I had an enlarged liver because of the copious amounts of fluid intake I had to have, both by drip and just drinking. I was told to wait about 3/4 weeks for that to return to normal before I could start medication. The Neurologist came to see me on the ward the evening I was diagnosed. It was her that organised everything for me. All I was told to do was organise a liver function blood test with my GP. I got a call from the MS nurse about a week later, with an invite for an informal chat about the various drugs available and told to phone her when I’d had the blood test results back and I could begin. Then, when we agreed on Plegridy, a dedicated nurse employed by the Plegridy came to my home (from Dublin!) to instruct me how to use etc. and was with me for my first shot. All I can say now, having had my third one Monday, (now on full dose) is that I was soooo very tired. I was achey that night and tired the next day but had already planned for a “nothing” day anyway. Fingers crossed now.

Hi poppy

Just wondered how you are doing? you should be well into the treatment by now

I’m starting on the injections a week on Friday hopefully these will help me as I had another relapse last week and am really fatigued at the moment as well as frustrated at being unable to help my wife with the kids much.

Hi Tam. Sorry for the delayed response…I actually had a relapse on Monday and was discharged from hospt yesterday. I have been doing nicely with Plegridy. No real side effects and just fatigue as expected. My walking wasn’t good on Sunday and I felt it hadn’t been great for a while. Ms nurse explained that she thought the course of iv steroids I’d had administered when I was diagnosed was most likely depleted from my system at this stage. The way my walking was now, was most likely how I have been left after diagnosis. I was floored to find the deja vue performance 6.30 Monday morning. No feeling of fear this time, as of course I knew what was happening, but cross because I still didn’t want it at all!

On admission to hospital and one a relapse had been confirmed, more iv steroids that afternoon. The usual “high” followed and sleep is never going to happen for me then. Tuesday evening, having had the second of three dose of steroids, my heart rate went ballistic. Long story short, I was transfered to coronary care for observation and given meds to lower heart rate. Following morning it hadn’t slowed so had further iv medication. A-fib is the additional tag. (Atrial fibrillation)

I was disappointed to have the relapse sp soon. I was of the thinking that the dmd’s would delay another relapse for a good while, as in YEARS. A bit disappointed to have one three months later. Also, I hope someone can advise a little, does it mean at every relapase, there may be further “damage” done and I might have new symptoms or worsening of what was there?

Good luck Tam. Keep me posted how you get on with it.

I’m taking plegridy for about 4 month and my walking distance diminished, my legs got tired so quickly. Went to new doctor and he mentioned that plegridy is not good choice for people who has problem with walking.

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Sslutsky, do you mean a new GP or consultant? I must admit, I’m having doubts about it. It certainly doesn’t have much write up about it and doesn’t seem to have any followers on here either. I was expecting to see it “help” me somewhat, and I’m not seeing anything.

Any updates anyone? I don’t get to see my Neuro until December so have no choice but to persevere at the moment. I can’t walk very far at all now and take a crutch with me. I don’t need it setting out but certainly need it to lean on on my return journey. I don’t feel it is the right choice for me at all. Had an injection last night and for the second time, the back and sides of my neck feel stiff and sore. I also seem to get a l of bloating. Not trapped wind type bloating, but hard and rigid. Looks like I’m 6 months pregnant, then goes away again. 9

I was diagnosed on Sept 1st with RRMS. I was eager to get started on meds pretty quickly as I have 3 young kids and needed to give myself the best possible chance of slowing down this disease. So I chose Plegridy and do I so regret it. Most common side effects were explained to me by the rep nurse and I did as I was told and took paracetamol for 48 hrs to counteract flu like symptoms that might occur. Thought I was doing great as I felt fine til day 6.That’s when I slumped in my energy & mood. By day 9 nausea kicked in and I started getting more & more down. Called my drug rep nurse and asked if nausea is a side effect and she said it could be and it was probably my body getting used to the medicine. So on her advice I took my second on injection and unfortunately things got worse. I ended up calling my neurologist I was so sick & couldn’t get out of bed. His secretary called me ba k next day to say that he said it wasn’t a side effect of the drug cause if it was it would have happened in the first 48 hrs. Told me to go to my GP. When GP saw how sick I was he put me on Zefron which is the strongest anti nausea drug available. It is given to cancer patients going through chemotherapy. My heart was also raised and he told me if I didn’t feel any better by lunch time next day to go to A& E. Next morning I felt so bad I couldn’t breath and my heart was racing. My friend took me to A& E where I was taking in straight away. A&E consultant agreed with me that we the timeline of my symptoms it was clear to him it was a side effect of the drug. He looked up the drug & it’s side effects and it’s written there that nausea & depression are a side effect of this drug. He discharged me after testing me for everything and re assuring me that my heart was fine and it was more than likely the drug that did this to me. He gave me some valium to keep me calm and some more stomach tablets and said it will probably take a couple of weeks to get this drug out of my system. Needless to say I didn’t take my 1st full dose injection last Friday. I am still feeling very low & very disappointed with how I was left there with no support and am changing my neurologist. I haven’t heard from the drug rep nurse since. I will be thinking long & hard before I do anything like this to my body again. I think I will find it very hard to trust these “professionals” again. I would really appreciate advice on what should I do. As my name suggests I am also from Dublin.