Consultant Visit | Aggressive MS | Tysabri Ocrevus | JC Virus and PML
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- čas přidán 20. 09. 2018
- Today we've been to see my consultant, she explained how aggressive my MS has been over the last 12 months (tell me something I don't know), and therefore she wants to treat it aggressively. I'm quite worried if I'm honest, I'll explain more in the video. Enjoy.
I’ve had MS almost 15 years. Prayers to all of my MS warriors 🧡🙏
This a piece of an recent article on Ocrevus. “Self-reported use of Ocrevus for the third quarter of 2018 surpassed Biogen’s Tysabri (natalizumab) in this class of MS therapies for a first time, exceeding neurologists’ expectations of six months ago by 7.4 percent for this quarter, it reports.”
Hey Neil,
I was the same way when my Neurologist wanted to put me on Tysabri then I read about PML. Of course it was 2009 - not too long after the drug was put back on the market after the deaths - so I was really scared as well. But after learning more about PML and the way they constantly check your blood multiple times a year I calmed a bit. Before Tysabri I had 4 relapses in just as many years and I was losing hope. Taking the drug opened my eyes, no side effects and I haven't had a relapse since. A few months ago my blood work changed and I became JC virus positive. But its not a death sentence that I thought at one time. The decade of time really changed the way doctors perceive PML and there is a whole different way doctors can read it. Its not just "you become positive and you're doomed". Yes, I stopped Tysabri but I'm now on Gilenya which is weird because of the PML risk... or not? I don't know but I'm not the doctor.
Point of my story is know about PML but don't let it scare you off. Tysabri gave me a decade without a single relapse.
Hey Steve, thank you for this. I’ve just read your message out to my wife to hear as well because I was so amazed to hear about your experience on Tysabri.
Like you used to be I’m having attack after attack and I feel like I’m slowly eroding away. I feel kind of excited about Tysabri especially as it 70 - 80% effective, and that’s what I need at the moment. Steve, your message really has given me some hope, thank you so for telling me. Whilst I do feel concerned about PML, I understand that they monitor me for the JC virus. Hopefully there will be no trace of it in my system.
Steve Solves MS hello Mr thank for your message and how you feel with Gilenya ?
I was presented with the Ocrevus. I wasn’t happy with two side effects manly. One worse disability or death. 🤔 So I backed out temporarily. After researching and listening to you tube videos I decided to start Ocrevus. I’ve now had my first infusions and my second. I felt great after getting and I still feel good. Not better so much but not worse. It’s goal is to stop progression. My first MRI since starting is February 1 2019. We’ll see if any changes have occurred. I really like watching Dr Aaron Boster on you tube. He puts out a lot of MS info about available drugs and actions. Stand strong my friend.
Hi Sheridan, I’m so pleased to hear that you’re doing well on Ocrevus. There’s a chance I will be going on this also quite soon dependent on a few variables. I’m also subbed to Aaron’s channel, he’s excellent isn’t he. Take care - Neil.
Neil Bradley February 10th I had an MRI. Great results! No new lesions! My second MRI in 2 years with both having no new lesions or activity. Now I’ve only been on Ocrevus for a year. I was on Copaxone for a few years before. It’s very expensive to use. It’s something like $45,000 twice a year. So if they’re questioning your diagnosis might consider. Not sure what copay is. I get grant that helps get it. Copay assistance is usually available for wherever this goes for you. Stand strong! It’ll get figured out.
Neil Bradley MS hello How are you ? Where are u from ?
Hello there, I’m not too bad at the moment thank you for asking. I live in the UK 🇬🇧
Thank you for the update ,bless you both,take care xx
Ahh thank you very much Carol, means a lot. We will take care, I hope you do too. xx
Ocrevus for sure!!! 🙏🏻🙌🏻 I’m doing super good. Go for it. You get the infusion and then for six month you forget about it until the next one. Best wishes and our prayers.
Thanks Anthony, yes that’s what I liked about Ocrevus and what I pushed for also. But my consultant seems to think Tysabri would be the better choice, for me, considering how aggressive my MS is (3 attacks in 12 months). If my blood test comes back saying I have a strong presence of the JC virus then it will be Ocrevus for sure.
You guys are so funny. I love your sense of humor and the fact that it´s still intact during hard times.
So I have to say: MANY thumbs up for Teresa letting your consultant know about your weight loss. I thought about it again in your previous video, where you were walking around and we could see more of you than we usually do. I understand why Teresa is worried and why she felt like it was important to mention.
I am so glad you finally got the results of the MRI. And thank you for updating us on that. I have been very interested to know.
Do you feel a bit better knowing for a fact what is causing your symptoms? That it´s not your back and you don´t have to worry about another surgery at least.
Several of my fellow patients at the MS hospital were on Tysabri. And happy with it. One of the women had lost a lot of hair (a side effect), which is hard for a woman, but other than that she had no complaints. I read about Tysabri (and every other DMD) when I was diagnosed, so I knew about JC Virus and PML, but I know doctors are keeping a close eye on the patients here, and I would assume they do the same over there. But I actually didn´t know that it´s 70-80% effective. That´s pretty amazing!
Apparently I cannot keep it short this evening. Sorry. This video just had so much info. I enjoyed it a lot! x
Thanks Rikke, so pleased you enjoyed the video and gained a lot from it.
With regard to the MRI results, I do feel a bit better knowing the disc isn’t causing the issues with my legs. But what worries me is I’ve still got a disc bulge. I’ve got an appointment with my GP this coming Friday and I’ll be discussing it with him in a bit more detail. My consultant didn’t really go into any detail.
I get the distinct impression also from now on they’ll be keeping a very close eye on me also. It’s good to know there are people out there on Tysabri who are well and having good results.
Ahh I am glad you will be talking to your GP about that next week. I understand your concerns, because they removed the bulge in 2012 (as far as I remember). But it sounded like you weren´t sure if it was in the exact same spot as the old one.
As you know I had a disc bulge removed last year (at L4/L5), but I actually have another one (at L5/S1), but it´s a lot smaller and not causing any symptoms at all. I read that a lot of people have them, but as most of them don´t cause symptoms, people don´t know (if they are scanned for other reasons it shows up though).
It will be interesting to hear more details about it. I hope your back pain is still tolerable and that you´re having a good weekend.
Thanks Rikke, and that’s the thing I don’t really have any symptoms in as much as sciatica type shooting pains which is the sort of pain I think I should be having. I’ve just got my usual horrible neuropathic pain. I praying I don’t need any treatment with my back because I just feel I’ve got a lot on my plate at the moment. I’m really very worried about going on to strong DMT.
I understand. I would be worried too. It´s only human.
Fingers crossed that the DMT will work great for you. Because it just might :)
That’s what I keep telling myself.
Infusions once in 4 weeks or once in 6 month it is least of your problems. From personal experience, you would make yourself available for anything as long as it works!
Hi Olga, like you say as long as it works .. absolutely I would.
That is truly scary about the possibilities with those drugs, and the JC virus! Congratulations on the green thumbs Teresa! Now that she has the green thumbs, next thing she'll be doing is driving the car! I think that God made you for each other, you 2 are just so perfect together! Yes I believe Teresa did the right thing in telling about your weight loss that way they can monitor it more closely, better safe than sorry! Best wishes and hugs to the both of you! Stay strong and keep up the good work!
Hello Count, thank you for your kind words. Yes, indeed the JC virus certainly is a worry but I've learned since then it's not just Tysabri that increases the risk of PML. Some of the other MS Disease Modifying Therapies (DMD's) do also. Even the immunosuppressing drug I'm on called Azathioprine does. Teresa loves to go out in the car but she's never been interested in learning to drive, she says the roads scare her so she leaves that bit to me lol.
Totally understand your disposition of thoughts on the two options. I'm on Tysabri and it has kept my flares at bay but none of them as we know do anything to our day to day symptoms. Hahaaaa love Teresa's chat about the tale of your weight loss. I'm on Tysabri and have been for 4 years. A guy named Vern here on CZcams has been on it a lot longer. I'm holding on Ocrevus for now,will follow your thoughts and transition into a new treatment. You know we wish you all the best!!
Thanks Avril, it’s good to know you’re in Tysabri and coping with it quite well. The drug lowers our immune systems, do find your more susceptible to bugs and viruses etc?
I was so frightened when I first started but then found out another drug I had taken prior Tecfidera had the same risk. After talking to actual patients on the drug,I decided there was just as much risk as anything else we do. I have had no bugs,no liver issues,we check my JCV numbers every three months. I've heard good and bad on both treatments,it's safe to say it will be okay with your choice and Teresa by your side :)
Thanks Avril, I’m really quite worried about starting Tysabri as I’ve been doing more and more research. Knowing you are well on the drug and not suffering any ill effects helps me a lot though. Thanks again.
Good Luck, Neil on whatever meds you decide on. Good for you on your research. You two are such a cute couple. Love, love, love the British accent. Thinking about you and yours. 💜👍
🌺🌻🌼🌸
Thanks Maria, that’s very kind of you to say. 💕x
I just finished my first infusion of Ocrevus. My neurologist has high hopes for a positive outcome for my RRMS. I wish you lots of luck and I’ll be here waiting to hear how things are going.
Thank you very much! And hey, that’s really good to hear you’ve had your first infusion of Ocrevus, how did it go.. did you suffer any side effects whilst having the drug? I will of course keep you posted as as to my decision with another video. Take care.
You two are adorable. Teresa, I love your spirit and that Neil includes you in videos. Actually, just call me mushy... I love you both. You have touched my heart. I know you have a tough decision ahead of you, but you will do what you think best. Take care. You both are in my thoughts and prayers🌷. Diane
Thank you Diane.
You guys are so cute. My husband and I don't argue either but I think that has to do with his parents being older when they had him amd I was raised by my grandparents and both of our families never argue.
Neil you look really well today. And Teresa is beautiful, I love your turban. I have a friend who loves wearing hers. Thank you Teresa for bringing up his weight loss, he does seem thin, but I will say he looks fantastic today. You are both a beautiful couple. Your banter reminds me of me and my husband. Just softened reprimands.
Keep staying sweet! 😍😘
Thanks Shanti, Teresa reads all the messages too and she says to say thanks, your very kind. Yes I’ve been feeling quite a bit better recently and today has been my best day yet. Amazingly, I’ve walked round a couple of shops today, I would normally just stay in he car. As usual when I feel better I’ve done too much and I feel shattered now, so resting up this afternoon. Yeah, Teresa and I are always having the softened banter, it really makes us smile and it’s good for the soul I think. You and your husband sound like lovely people. As always, great to hear from you.. take care. x
I know many people on Tysabri and moreover one of my best MS mates and fellow support workers Munever would be happy to speak to you as she has been on it for over two years. Please do consider talking to her as she will be able to give you a balanced view of Tysabri. I am so pleased they are at last offering you a really good DMT. PML is not an issue for you as they would not let you go on Tysabri if you have it. I have a small risk on Tecfidera but am monitored with blood test every 3 months. Can you also ask about Lemtrada as this is offered as a sister treatment to Tysabri if PML is an issue. What you have to consider is that the more aggressive your MS is the higher the risk of incomplete recovery.
Thanks Trev, and I’m very much looking forward to our group chat on Wednesday.
Mr. Neil my my my !!!! I'm speechless and scared outta my mind after hearing some of the things you spoke of this time . I have at least 4 attacks a month it was sooo much worse before I went on Capaxone. And I'm now down to a few days free of an attack then i wake and my right legs is not able to stand on it at all and I have pain sometimes associated with it like prickly and stabbing pain like my nerves are on fire ! Bit now instead of last up to weeks it last a day or so. Then a few days of nothing. So I'm not so exhausted like I was before , so there is that. So how aggressive is mine then ???? And if i were you , i dont think your life would be worth the possibility of the side affect of this JC. Especially if you think of how ypur attacks aren't anywhere need what that disease will do to you as I'm sure you took much thought into this desistion . I'm so new to this M.S. that it's only been 5 months or so now of treatment for me and my M.S. specialist is still at the stage of completely figuring my severity of this M.S. of mine and I know if i was faced with it I would just be beside myself yet knowing there are so few choices foe M.S. treatment.
So to hear sever is 3 or more attacks a year when I'm having them 4 times or so a month really bothers me , and the fatigue I go threw certain days I can't leave my bed. And few and far between I feel good enough to go out and about to do groceries and shopping for monthlys, however I do have a caregiver finally 4 days a week for 4 hrs a day that helps me to do the things I can't. So I need to bring this aggressive level to my M.S. doc . Well I'm glad ypur manhood was unscaved in your changing room. And I hope you find peace in your decision on taking Tysabri.
Glen from USA
Hi Glen, fortunately I escape unscathed with my seat experience lol 😂
Your MS sounds very aggressive also, especially if you’re having so many attacks in a month. I’ve found it’s sometimes difficult to differentiate a relapse from a flare up. It’s possible you may be having flares rather than relapses. If you Google this, you should be able easily find a definition of the difference between the two and try and figure out what’s happening. Either way, you need to keep your Doc informed of everything. Keep a journal of your symptoms, the Dr will rely very much on a history of symptoms.
I am indeed very worried about going on a DMT, especially Tysabri. I’m now leaning heavily towards Ocrevus simply because I don’t want to put myself at ANY risk of the brain disease PML. I’ve got enough problems with my MS I don’t want anymore.
Hey, sorry to hear about your ms. I had the same issue like you 2 years ago. My ms was active. I still work and I want to carry on walking. I went onto lemtrada , I am now post round 2, it was not easy, I was rushed back into hospital with an infection post round 1. I lost loads of weight before Infusion. Now I have put that weight back on. I still have old damage, monthly bloods , yes I am tired but I won't let this win. Its not a cure , it won't fix me but it may slow it down. Its a bit risky but I have great support from my London ms nurse and my work. Last MRI showed ms was not active. I don't want to get secondary ms. Good luck
Hi Dean, thanks. That’s the thing I want to slow it down also but it’s the risks we have to take in order to do so. The speed my disability is progressing is very worrying. I’ve got to do something even though it is a double edged sword. I’m pleased to hear you’re much better than you were.
Thank Neil, I did meet some others undergoing the infusion. To be honest I don't meet many like me. We all had the same concerns, but all decided this was our last hope to slow it down like yours. I did say to my consultant I would take the money, 70k instead of Infusion. He said no
Wow seriously expensive, yeah would have been nice to have the 70k, how mean is your consultant 😉😊
Scratch what I just asked you said you were taking copaxone was it 40 mg 3x a week or 20 mg per day and how long were you on it? I just had this discussion with my neurologist last week. I'm in Canada!
Wishing you the best on whichever medication that you decide to go with Neil. I'm so happy to see you feeling better, now gain some weight back buddy! LoL. I love your wife.. She's a doll 😊
Aha thanks you! Yeah she’s pretty cool 😎, but I’m biased of course. She’s the best thing that has EVER happen to me and I feel blessed to have her. I’m working on the weight, I even had a rather sweet donut this afternoon.. it was actually very nice. I’ll keep you posted as to my drug decision, no doubt in a future video. Cheers👍
Hello. I am positive for the JCV virus. I am taking Tysabri for the past 10 years. They do monitor you very closely. Hope all is well with you.
Spirit Seekers Thank you for the message. I’m not on any DMT’s at the moment because my diagnosis is up in the air (see latest videos). That’s a long time to be on Tysabri, hopefully you are well suited to the drug and it’s working it’s working well for you. By the way, I really like your CZcams name😊👍
Hi, I've been on Tysabri for 11 + years, still jcv virus negative. Had a full blood test recently, all levels are fine. Like to try Ocrevus, but hmmmm might be risky, but because Tysabri has been good (mri's over the years no changes at all) I'll stay. Good luck with your decision :) I'm 36 years old. cheers
Hi Ivan, your message is very reassuring to me.. thank you for writing and letting me know this as I’m very worried about Tysabri and the more research I do the more worried I get. I’m interested to know after being on the drug for so long whether you have any persistent side effects? With having a damped down immune system do you feel more susceptible to infections etc? Thanks is advance. Best regards Neil.
You're welcome. I do have the jcv virus bloodtest every 6 months - levels are still very low. I have the flu shot "vaccine" every year. I might be more susceptible to infections, but I try to stay safe. A person who regularly posts here on youtube "Vern Beachy", he has been on Tysabri longer than me: czcams.com/users/vbeachy
Take care with your decision. I was diagnosed in year 2000. Was on: avonex, betaferon, copaxone. Got worse so my neuro put be on chemo (mitoxantrone for 2 years) then Tysabri came along (here in Australia), mri every year, still stable. Have had infections in the past, but with meds etc it eases them away.
Thanks for the info Ivan, appreciate it. I’m going to check out Vern’s channel. 👍
Look up Aaron Boster he is a neurologist sho does a ton of videos that are easy to understand. He has one specifically on Ocervus. He runs an MS clinic in Ohio USA. His videos are so helpful!
Hi, yes I’m already subscribed to his channel. Thanks, he’s excellent isn’t he.
@@NeilBradleyMS I love him all his vids are great! So helpful
I didn’t want to chance it no matter how low the risk, but it’s an individual choice. (A lot of people seem to have had positive outcomes). I’m thinking of you Neil and Teresa....big decisions.
Hi Karen, it’s a really scary decision and I totally understand your concern. Hopefully there no sign of the JC virus in me, because I’m quite keen on Tysabri. I’m not sure how many more attacks I can deal with, so need to hit it. Are you taking any Disease Modifying treatment at the moment Karen?
Neil Bradley I’m having a difficult time with insurance....$. (Which changes in January). The neuro has offered four, techfidera being first choice. Thinking of you and Teresa.
Hi Karen, so it’s decision time for you as well then. Tecfidera is meant to be a very good drug, I’ve heard a lot of good reports about it. What other one’s have they offered?
Hello Neil in Teresa, I'm sorry I'm just now catching this video. I hope all is well with you guys in this new year. Were you able to decide between the tysabri and the ocrevus? I myself recently started with tysabri infusions. I've had two so far and in another 2 weeks I'll be going for my third infusion.it sure hasn't been smooth sailing for me but I'm getting through it. By the way I'm from Syracuse NY and I just wanted to let you and Teresa know how much I enjoy seeing you. two together on CZcams. I hope you both are doing well and God willing someday we'll talk.
Hello Robert, it's great to hear from you .. and thank you very much for your lovely message. I'm pleased to hear that you've started the Tysabri treatment, and I really hope that it is starting to work for you. In answer to your question for me, neither! Long story short, this last 12 months I've been re-diagnosed with a different Auto-Immune disease called "Neuromyelitis Optica" after seeing a Professor for a 2nd opinion, and after having all my "MS" tests come back negative. NMO is much rarer than MS but is part of the same camp if you know what I mean. I've documented the journey in my more recent video, perhaps as and when you get time. All the best to you Robert - Neil & Teresa.
@@NeilBradleyMS thankyou for replying back to me so quickly. I just watched your latest video with you and Teresa talking about.your new diagnosis. I'm sorry that I'm just getting up to speed with this. So this means you do not have ms but a similar condition correct? Will they have to treat it with steroids indefinitely? Hopefully they can find another treatment that will put your condition into a more long term remmission. It's grest to see you and Teresa looking so good and I hope it continues for you both. My journey with tysabri hasn't been the greatest so far but day by day I'm getting through it. I'm scheduled to see Aaron Boster in July at his new clinic and I'm really looking forward to that visit. Thankyou again and best wishes to you and Teresa.
@@roberture5903 I was diagnosed with MS in 2013, and up until the last 12 months once again, my diagnosis has been up in the air. So no, it's no longer MS now its NMO. I understand it to be commonplace for people with NMO to be mis-diagnosed with MS to start with though because the two conditions are so similar. I can understand this. Yes, the main treatment is Steroids, but I'm also having my immune system suppressed with a drug called "Azathioprine" (chemo based) and not without serious health risks. I'm super pleased to hear your going to see Aaron, and I hope this goes amazingly well for you.
@@NeilBradleyMS Thankyou Neil, I wish you nothing but the best my friend. I will keep you and Teresa in my prayers. It's good to connect with others dealing with these nasty autoimmune conditions. It reminds us we're not alone in this fight.
What have you currently been taking as a DMT or is this your first one?
Hi Cariad, when I was first diagnosed in 2013 I started on Rebif but felt lousy on it and stopped. Moved on to Copaxone for two years after that, but then shelved that as well as couldn’t cope with the injection site reactions anymore. I rotated the injections, but I wasn’t healing quick enough by the time the next rotation came round. It got so painful.
I've been on tysabri myself. The only reason why I went off is because I am diagnosed as primary Progressive and at this point no DMD drug benefits me. I am sure, one day, there will be some type of literature that ocrevus also will cause the PML virus. Just like when tecfidera was released, they listed it as a safe as pill to take and it would not cause the PML virus. Lo and behold, all of a sudden cases of PML have been reported with tecfidera. It is now part of routine monitoring to get your blood checked every so often to check your lymphocytes. Ocrevus has the possible serious side effect of causing cancer, with breast cancer being the most predominant form. Also, if you read the warning of side effects on the ocrevus website, you will see that PML is listed as a possible side effect. Even though there have been no reported cases, except of one that I'm aware of where a patient came off of gilenya and went to ocrevus right away, developing PML, there is still the possibility of developing the disease. That's why it's listed under possible side effects on the ocrevus website. So like I said, because ocrevus is so new, PML has not had a chance to rear its ugly head, but just like tecfidera, who raved about having a safe profile, I do feel that one day ocrevus it's going to be a cause of PML as well as it lowers your immune system. Also, if you ever had shingles before, you're more likely to experience more episodes by taking ocrevus. I know a lot of us with Ms have had shingles. I personally had no issues with tysabri. I am JC positive, however, your Dr can order a blood test that will test your titer level of the JC virus. If I can recall, mine was .6. it's only after a high titer level that you shouldn't go on tysabri. Also, it is extremely rare to develop the PML infection within two years of being on tysabri. I just had an MRI done and my doctor and I discussed that if we did see a new lesion, which drug would I go on, ocrevus or tysabri. I stated that I would go back on tysabri just because of the record that it has as being such an aggressive drug. Fortunately and unfortunately, there was no change with my MRI again for the 6th year, so I will not be going on a drug. Tecfidera is a good drug as well. But again, you will have to routinely get your blood monitored to make sure that you're not at risk for the PML virus. It was nice being able to pop a pill everyday instead of an injection or infusion. I personally know people that have been on tysabri 4 over 5 years and are doing remarkably well, developing no PML, as they are in close contact with their doctor and keep up with their vitals. Don't read too much into it on the internet. I did the same thing. Good luck with whatever you choose.
Thanks for the detailed information Shadow.. the more research I do the more worried I get. Then when I chat with people such as yourself I start to feel a bit calmer again. I am very worried about Tysabri, but I also know I can’t carry on as I am because I’m becoming very disabled very quickly. I want to try and enjoy the rest of my life with what limited mobility I have left.
I have had 3 treatments of Ocrevus...infusion is easy but no improvement in walking
Thanks for this Michelle, that’s a shame. I’m hoping to get a bit of improvement if I get approved. However I would also be happy with no worsening symptoms.
That is the one I am on and I am stable.
That’s really good to hear Jessica, and reassuring. Thanks for that.
Scary about the Tysabri effects: Either aggressive MS or possible brain damage. What a choice! Perhaps the bloods will show no JC Virus and as Ivan Z. said in the comments section - he tested for no JC and Tysabri has been helpful. What about the Ocrevus? Would that combat the MS? And YES, Ms. Bradley, you are correct. Neil has been looking a bit skinny lately. Eager to see the weight gain soon. Also, what's with the "magic act" of Teresa's purse showing up (& out)? Funny illusionist.
Hi Zan, yes not a nice choice at all.. I’m actually leaning heavily towards Ocrevus now as I don’t like even the smallest risk of PML. I’m working on the weight gain, but it’s actually quite difficult. I loose the weight (I think) because when I’ve got a lot of pain and my mobility is really bad and continually to worsening, it’s then I just don’t want to eat. Aha it’s actually Teresa’s phone I think you saw, she’s always got it close by🤔
Hope for the best but prepare for the worst. MS is unpredictable in itself. Preparation is mentally and physically it is not going anywhere so prepare before you have to.
Thanks Donna, will do. Im already pretty prepared, as worse is all my MS has been just lately. I’m really ready for a break but don’t seem to get one.
Love you two❥✿•.¸¸.•.
Thanks Willow, sending much love to you also. I hope you are keeping well. 💕
Hi Neil! There is a gal that has a CZcams acct and has MS and has documented her infusion treatments and how it went for her - very informative! Her name is Lauren Parrot, look her video's up. You will find them interesting and helpful. Be well!
Thanks Nell, yes I know Lauren she’s been a CZcamsr for a very long time, something like 11 years. I’m already a subscriber but thank you.
Fancy being evasive Neil! Lol🤔 some ways Tysabri doesn't sound fantastic does it? I must say I was given Techfidera but didn't agree with me as it gave me awful real life type dreams of everything I'd put deep away I'm my brain and I was a wreck within 3 days so had to give up but not sure if I was told about PML... but on Aubagio now but don't know if it's doing any good to be honest. Hope you make the best choice for you👍
Thanks Adrian, the dreams don’t sounds good, bet they were quite scary. It’s the side effects of drugs which worry me the most. I think they’ve only recently learned about PML and Tecfidera after originally saying it wasn’t a risk. Glad the dreams settled down in the end. When I was on Copaxone, I never knew if it was doing any good either.
@@NeilBradleyMS That's why I gave up copaxone after 3 years or so also the inflammation sites and the dipping flesh I decided it wasn't worth it👍
The meds I'm on put me at risk for pml as well i would go ocrevis probably spelled wrong lol
I told the consultant I preferred Ocrevus, but considering how aggressive my MS is she preferred me to go on Tysabri. So we agreed if my blood test came back JC virus free I’d do Tysabri, otherwise it’s Ocrevus.
@@NeilBradleyMS tysabri isn't bad this girl i know had the infusions for several years and then couldn't take no longer tecfidera puts me at risk for pml as well they test my blood every six months to make sure everything looks good they will check yours as well i was so scared when i started taking the meds but thank goodness all had went well as of so far
Yes I’m scared of taking it too because of PML. You’re experience has helped put my mind at rest a little. Did you feel well whilst on Tysabri, we’re you ill at all? I’m just wondering because of how the drug lowers your immune system and makes you susceptible to more bugs.
Please remember, that it's not a matter if you have the JC virus, but how high your titer level is of the virus. Your doctor needs to order two blood tests. One to check if you carry the JC virus, and one to check how high your titer level is if you do carry the virus. The main JC virus test does not give the statistic. You must have another blood test run. Low titer level, low chance of developing PML if you are JC positive.
@@NeilBradleyMS I never had tysabri I was put on tecfidera as a first med and I'm still taking it at the moment the girl I knew who was on it never said she felt bad and always seemed in good spirits