@lotusp

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lotusp

Treatment Finally

So guys finally moving forward with treatment, after being diagnosed for 4months now im finally getting treatment yay! My nurse has said to start off with first line therapies which i assume is like the beta inferons and copaxone. Also because im only 21 and alot of the other dugs have harsher side affects like thyroid problems, PML etc. I think its best for me if i start off with something milder maybe (still not 100% sure). Initially i wanted Lemtrada but the thyroid thing n me wanting to have kids in the nxt 2/3 years really put me off. Now im looking at either Avonex/Copaxone but again the copaxone lipoatrophy things a bit of a put off as is the avonex hair loss... any advice from users pleaseee ?

Sewing-chick

@Sewing-chick

I'm very much enjoying the relief from some of my symptoms that I have had from Cladribine. There are no side effects (as far as I know). Like Lemtrada, you have a course of injections, another course after 4 weeks and a repeat a year later. No thyroid problems associated with this one. Unfortunately, the only place that's licenced to give it as a treatment for MS is Barts hospital in London. My other experiences are of: 1) Tysabri, which didn't seem to do much for me and made me worse for about 5 days after each infusion - I wouldn't recommend (especially with PML risk - I contracted JC virus while on Ty); 2) Gilenya, seemed to help without side effects, but I was only on it for 6 weeks - I have an idea the effects might fade over time.

hope33

@hope33

Hi there - If you do decide to use Copaxone, try and manually inject as opposed to using the autoinject. Manually injecting gives you less bumps, itching and less risk of lipoatrophy . I have been using Copaxone for 3 months now and so far I haven't had much in the way of site reactions. All the best

lotusp

@lotusp

@orlando27 your opinion was exactly how i was thinking! Howevrr after doing my research i thought about the serious side affects associated especially the thyroid issue.. ( as a women this could be harmful to pregnancy) and knew i couldnt choose that route right noww. @sewing-chick ive also looked into cladibrinee from what uve suggested. It looks so promising and less scarier than lemtrada lok.. have you got any links i can look at for more info?

brainz

@brainz

hi i was diagnosed officially in jan 2015 i started on tecfidra then copaxone and then avonex none of which agreed with me, the difference in me even from this time last year to now is terrible i cannot even walk safely anymore i recently got told to give up driving and thats just a little of my problems, in such a short period of time its gotten so bad im only 29 and feel totally out of control of my situation i have been trying to get on lemtrada for over a year and just keep getting told no, one day its going to be too late for me to have lemtrada but if lemtrada is a choice for you i would strongly consider it,its better to get on it soon as you can after diagnosis as you can,i have a family too and without the use of my legs i feel that i am pointless being there for them because i cannot do anything for them,everybody is different just because the first line treatments didn't work for me doesn't mean they wont for you i hope whatever you choose is highly effective for you.

Sewing-chick

@Sewing-chick

I thought I would post a few quotes from the first Barts MS Blogspot post above - you will understand why Cladribine seemed a good bet to me. Just a note - Barts is one of the leading hospitals in the country for treatment of MS, so what they say is likely to be reliable. (a) Cladribine is highly effective: The level of efficacy appears to be as good or notably better than any current MS drug available. (b) Cladribine is as safe as any DMT: In comparison to highly active MS drugs, it is notably safer! Cladribine does not cause secondary autoimmunities (i.e. thyroid problems) like Alemtuzimab or Daclizumab, which may occur in up to 50% of people. (c) Cladribine is convenient: Cladribine only needs about 5-6 doses/year, and possibly for no longer than two years. This is as easy as alemtuzumab and even easier because you don't have to go to hospital for the infusions and it doesn't cause adverse reactions (reactivation of old lesions and problems associated with steroid use). After being given the drug, it is out of the system within 24h from the last dose until the next year so maybe time to get drug-free pregnant.

RachaelG

@RachaelG

Hi, Speaking up for Copaxone - I've been on it 18 months, no relapses and SO much better on my last MRI (I take Vit D, exercise as much as I can and meditate, too). But the big thing for me is there are no real side effects. I would agree that you should inject manually, though, less discomfort and easier. I have no marks, just a little flushing after the injections. All the best, Rachael

Sewing-chick

@Sewing-chick

@orlando27 - here is the info about Cladribine and Progressive MS (I just posted this on another thread so you may have already seen it). I don't know if you can have Cladribine after having Lemtrada. I do know that people with RRMS saw improvements in their condition in trials of Cladribine - there are links to papers about the trials if you go to the link below. I think the only people who have seen improvements on Lemtrada are people fairly early on in the disease and still with RRMS. g) Treatment for All, really: Generic Cladribine cannot fail to be of value to people with MS. Although people with RRMS will particularly benefit, Cladribine could also be anti-inflammatory "platform drug", on which neuroprotective molecules for people with PPMS and SPMS could be layered (which people with RRMS need too, given our knowledge about progressive changes from day 1). (h) Yes we mean treatment for all people with MS including people with Progressive MS. Everybody with MS has inflammatory activity that needs treating. This is greater in RRMS than in progressive MS, but with a cost-effective option everyone could have this benefit. Cladribine could be a platform on which to layer other drugs for neuroprotection and repair in progressive MS and RRMS. As it is an induction treatment requiring a few doses a year, and after being given, the drug is out of the system within 24h from the last dose it not interact with other drugs, and thus will be safer. These quotes are from a reliable website - the Barts MS Blogspot. The address for the post on Cladribine that I got them from is here - http://multiple-sclerosis-research.blogspot.com/2016/01/suppose-there-was-therapy-for-all.html

KoffeeLover

@KoffeeLover

@Anonymous is cladribine a possible treatment for PPMS??