Last reply 3 years ago
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 ?

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Anonymous
3 years ago

Hi
Congrats on the four month wait being over. Still though the current best thinking is to hit MS hard and as soon after DX as possible. I can’t think of a better candidate for Lemtrada. You are young and have no mentioned permanent nerve damage. Lemtrada is out of your system completely by the second month after infusions so you could have children any time after that. Lemtrada could possibly be a cure with someone with your profile. Other than monthly blood tests for 48 months, you should have little to worry about. Your MS nurse is living in the past. There is no good reason to take weaker DMTs and hope that things will be ok. Eight infusions in twelve months and no more DMDs for a very long time. You should speak with @tracyd if you have not. I wish you the best!


sewing-chick
3 years ago

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
3 years ago

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
3 years ago

@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?


Anonymous
3 years ago

@lotusp I understand your concerns. I and most Lemtrada prospective patients had the same worries. We weighed the risks/rewards to reach the decision to go forward. The main thing to remember is to get effective treatment asap. I decided that a 30% risk of a thyroid problem was worth halting my MS which began suddenly without warning ravaging my body several years ago. I could not take the risk of further disease progression. I would have considered any viable DMT that was readily available off label or not. I knew that Lemtrada was my best choice and was even considering going offshore to get it. BARTS is using cladribine off label which is the only way to get it until regulatory approval. That could still be several years even though “fast tracked”. For example, I was in the Tecfidera phase III clinical trial while it was ” fast tracked”. It still was not approved for another three years by the FDA for general use. The wheels turn slowly when approving drugs which besides adding lots of time, it greatly increases the costs of DMTs. If you can see someone at BARTS that will prescribe cladribine relatively soon, that would be a good path to pursue that now. Otherwise reconsider Lemtrada. If it helps, there is research going on to reduce the secondary auto immune problems such as the thyroid using currently licensed drugs even after patient’s use of the drug. I’m keeping my eye on that

Quick history. Rejected in 2011 by both the FDA and the EMA for safety concerns, specifically an increase in cancers. The matter was revisited in 2014 and began clinical trials. Side effects reported included infections due to the reduction in the number of white blood cells. New analysis suggests that there is not an increased cancer risk at doses used to treat MS. Currently Cladribine is only licensed in Australia and Russia for MS.


brainz
3 years ago

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
3 years ago

sewing-chick
3 years ago

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
3 years ago

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


Anonymous
3 years ago

@brainz I feel for you! Unfortunately you digressed to less effective DMTs. Some suggestions until you gain access to Lemtrada. Have you considered Cladribine? If I were in the UK or near by, I would park myself at BARTS and sign up for Cladribine. If that is not possible, can you get Tysabri? If that is not possible, try for Gilenya. It is probably the most efficacious oral DMD. I would only use these DMDs until I could get Lemtrada or Cladribine.
@sewing-chick I have reviewed the Cladribine information and agree that it is very impressive. I would have definitely been very interested in it if it had been approved by the FDA or if I lived close to the BARTS hospital. The safety profile looks very good but I have not seen anything regarding it’s ability to halt and reverse the progression of MS like Lemtrada in it’s clinical trial. Also I would have to see whether or not it is recommended for ALL forms of relapsing MS including relapsing secondary progressive.. If you can show me language like that I would appreciate. If I require another DMT after Lemtrada, I would definitely be interested.


sewing-chick
3 years ago

@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


Anonymous
3 years ago

@sewing-chick Still reading more about Cladribine. Thanks for the link. I read BARTS quite often. I agree it is rerliable. FYI, The original Lemtrada clinical trial that is often sited for the view that iit is ineffective on SPRR is outdated and incorrect. The testying dfid not go beyond five years and typically only involved two rounds of infusions. The latest trial was desdigned specifically for these patients and have used as many as five rounds of infusions with encouraging results. These tests were designed and performed here in the States where I have a friend with helpful reports that several start seeing results after the usual first year for RRMS patients. She was my greatest inspiration to try it as nothing else was stopping the beast. I look forward to reading the links you qsent me. Thanks again!


koffeelover
3 years ago

@anonymous is cladribine a possible treatment for PPMS??

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