Looks like Lemtrada for me

[dastardly]

Hi Guys Craig here 52 yo man had ms for over 20 years and I am currently on tysabri had 8 infusions but I never felt like it helped me, I saw my neurologist today and he said although my MRI results seem stable with no new lesions my symptoms are getting a lot worse, I am deteriorating my right side is very weak I drag my foot when I walk with a walker, brain fog, fatigue you all know the drill, so we are talking about dropping the tysabri and starting Lemtrada but after reading the posts on here I am very concerned the side effects are scary and there seems to be more negative then positive on this forum, so I guess my question is am I over reacting about starting this new treatment, the treatment isn't administered here where I live so I have to travel one and a half hours away and stay in a motel for the nights while there as the treatment is in an outpatient treatment anyway guys Hi Craig

[Brentorious]

Hi Craig. I've been posting about my wife's experience so far. Before she was infused, it scared me to read all of the safety information, warnings, etc. Fortunately her experience has been good.

The best information we were able to get on what to expect was from the supervisor of the infusion center. They had done 10 patients before my wife. They call each patient once a month to see how they are doing. You might try contacting the infusion center to see what they have to say.

We had to travel about an hour away and stayed in a hotel for her infusion.

It's a big decision. I would be careful to place too much weight on the bad experiences described on this board. Not because I don't believe them, but because it may be that folks having a hard time are more likely to come here to seek help and discuss than those who are tolerating well. I'm posting about my wife the kinds of things that I wish I could have read before her treatment. Good luck with your decision and keep us posted.

[Goldfinch]

Hi Guys Craig here 52 yo man had ms for over 20 years and I am currently on tysabri had 8 infusions but I never felt like it helped me, I saw my neurologist today and he said although my MRI results seem stable with no new lesions my symptoms are getting a lot worse, I am deteriorating my right side is very weak I drag my foot when I walk with a walker, brain fog, fatigue you all know the drill, so we are talking about dropping the tysabri and starting Lemtrada but after reading the posts on here I am very concerned the side effects are scary and there seems to be more negative then positive on this forum, so I guess my question is am I over reacting about starting this new treatment, the treatment isn't administered here where I live so I have to travel one and a half hours away and stay in a motel for the nights while there as the treatment is in an outpatient treatment anyway guys Hi Craig

At risk of sounding like a cheerleader for Lemtrada, I will tell you right away that I consider myself very fortunate to have had Lemtrada. I was on three other DMDs before Lemtrada. The first lost efficacy, the second was wonderful (Tysabri) but I had to quit it because of high JCV titer. Third was not effective; I had my worst relapse ever while on it. In fact, at the time I went in for treatment with Lemtrada, that relapse was ramping up to a vicious level of symptoms including loss of balance, speech defects, swallowing problems, cognitive deficits, and worst of all, I couldn't sing. The same muscle we rely on to sing with gets hammered when the MS hug activates, and it was all I could do to walk with the assistance of walls and a walker. My spine felt disconnected from my core muscles and the only thing holding me upright was luck.

As I'm sure you found out from your physician and/or reading the literature, they administer steroids along with the Lemtrada to prevent patients from experiencing anaphalaxis (severe allergic reaction). Fortunately for me, those steroids shut down the relapse like RIGHT NOW because of their high dosage and prolonged length (usually relapse steroids have been 3 day long infusions, but this was for five days at a mugh higher dose). During the Lemtrada infusions, I only had one incident of concern that the medical team immediately addressed and controlled (panicky feelings involving increased heart rate). That was it, on the fourth day, and it only lasted twenty minutes. The remainder of my time in infusions was actually kind of like a vacation to me. I just took it easy, read magazines and books, ate breakfast and lunch before each day's discharge, and slept a lot.

Here I am two years later, two Lemtrada treatments later, and you know what? I feel like my old self again. Better, in fact. Yes, the symptoms from my relapse still linger but they are a shadow of their formerly terrifying selves. The balance is better than it was during the relapse (almost as good as before) and I can sing again. I haven't had the first glimmer of new symptoms since the first Lemtrada infusion. The second infusion was easier and shorter.

I know you're nervous about things, and I can relate. I was too, but I was hopeful as well, because ANYTHING would have been better than what I was dealing with from the relapse. For the record, I am no spring chicken, 45, not too far removed from your age, and I am doing well all said. You're likely to benefit from the Lemtrada. Just eat healthy and surround yourself with people who love you. I think Lemtrada bought me more time. Good time, that is, not the miserable kind where you keep asking yourself What next?

Good luck!!!

[dastardly]

Thanks guys for your reply's. Its great to hear from real people that have had the treatment an good things to say about it. As you said Brentorious people tend to wright more about negatives than positive because when we feel great we aren't worried about our problems. Its like reviews about appliances if they work we take that for granted if they don't we shout from the roof top about it. Goldfinch your reply is inspiring i will do a little more reading and make a decision.

My other problem is I had my pituitary gland removed 37 years ago and my endocrine system is a cocktail of drugs/hormones so I will need a few specialists on my various problems to discuss what to do. Also i have just recently had my DX changed from RRMS to SPMS and what I have read this treatment isn't normally used for SPMS and have read other articles where it has helped.

I have had the solumedrol / methylprednisolone before and had remarkable improvements I went into the hospital in a wheelchair first infusion, in a walker the next day, a cane the next I call that a miracle. Good luck everyone.

Craig

** Moderator's note - Post broken into sentences and paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Carolinemf]

Hi Craige. I hope you don't mind but I feel a bit like a kindred spirit at the moment, I'm watching your post as much as my own. How are you going with the decision?
I have the last of my tests fri 17 and if I decide to go ahead with Lemtrada, my last Tysabri infusion sat 18. Have you commenced having all the tests yet?

Thanks so much Goldfinch for sharing you've done more to help me see the pro's of Lemtrada than all the other info so far, rather than just focusing on 'bad' which is what I've been doing. I need to make an objective decision and thats not possible if i'm mostly focusing on the negative.

[dastardly]

Hi Carolinemf so far I had an MRI on monday 3 days ago will get the results tomorrow and then I'm having a telephone conference with my neurologist at my local dr's surgery depending on the MRI results we will all make a decision then so I guess the tests will start shortly after that, I talked to my endocrinologist and he said all good to go from his side (professors Chisholm at the garden institute of medical research) he has been looking after that side of my problems for 37 years (I owe my life and family to this man) I have learnt a few things during my 52 years and one is to find a Dr that you have complete trust in and follow their directions, not blindly but discussions and then make an informed decision, good luck Caroline you may start before me and I will follow your posts, my last Tysabri was 3 weeks ago Craig

[Carolinemf]

Hi Craig,
Yep you're spot on with trusting your dr. I was so happy when i changed dr's.
I was told i could have the treatments in Bundy or Brisbane and possibly be admitted- this may have to do with the concerns about ITP , so i was wondering if admittance was an option for you as well?

[dastardly]

Hi Im going to ask to be admitted if we go down that track Craig

[dastardly]

Hi guys saw my local Dr today and rang my neurologist to see what he wants to do after my last MRI, the MRI results came back as unchanged but my symptoms are still getting worse my neurologist wants me to have solumedrol (methylprednisolone) on tuesday and see how I feel after that,
I have previously had this treatment twice before once like a miracle once nothing so we will see how things go this time, then decide about the lemtrada treatment.
Hi Carolinemf how did you go have you started your tests yet good luck Craig

[Carolinemf]

Hi Craig,
It's hard to take when there's supposedly 'no change' in MRI but there is still progression.

I've completed all the prerequisite tests. Just waiting on results- should have the last of them today or Monday.
Scheduled to have several sunspots removed today. Have had some done previously but don't want to risk infection if I do start lemtrada. So am attending to it now . should have done it a couple years ago. Side effect of Betaferon treatments. I became very uv sensitive and burnt a lot while taking it and for years after.

I am still a bit undecided if I'll start Lemtrada. Still researching. Have found some interesting info about Avonex.
So you are still undecided too?

I'm sorry you are still deteriorating and need steroids . I don't cope well with them and dread the thought of needing them with Lemtrada. I hope they improve things for you this time round.
So i wish you all the best and please keep us posted.
caroline.