So I had my MRI ready in time for my consultants appointment on 08/09 and was expecting to find out if there were any changes between this and my previous scan in 2012. The news is yes it shows progression with 2 new lesions. How do I know? I was copied in on a letter to my gp! Oh well, I guess it was inevitable anyway… Diagnosed in 2005 with rrms, i have been lucky with only 2 huge relapses (ON & then spasms and slurred speech), one after the other, which led to my diagnosis and then just small incidences since until this year, when again i had another sensory issue sending waves of pins and needles up my body from my toes upwards, which affected my walking when it happened. The guidelines for treatment have changed since i was diagnosed and I’m not really sure which category I fit into. So, i was mainly thinking tec or Lemtrada, slightly leaning towards lemtrada as I have to take tablets on a regular basis for my thyroid and I’m pretty hopeless at remembering those, but not sure what my Neuro is thinking until I see him on Tues. Any thoughts welcome. Thanks x
I am no tech and find it very easy, fatigue for a few weeks and occasional flush but great to take 2 tablets a day with food. Im interested in lemtrada if I need if next but from what I understand a side effect in around a third is thyroid issues. There are good closed fb groups for both drugs so it might be worth having a look on those as well , let us know how you get on x
I was thinking as I already have an interactive thyroid that part wouldn’t bother me. There’s no negatives that I can see cause if it knocks my thyroid out altogether they’ll just increase my dosage. I’m on 125mg and have been steady on that dose for 16 yrs. I’ll have a look at the face book groups, thanks Zoe x
Two new lesions in three years is not an awful lot. I expect you will be offered something, but I don’t expect the really big guns (with the most risks) to be on offer for just two lesions in three years. It doesn’t suggest your disease is “highly active”.
I think the thyroid issue with Lemtrada may rule you out. The side effect that many people get with Lemtrada is called Graves Disease, another autoimmune syndrome. It gives you an overactive thyroid rather than an underactive one (which I assume is what you have if you are currently taking thyroxine). You’d think that an underactive plus an overactive thyroid would just cancel each other out but I don’t think it’s quite that easy.
Graves Disease is not as simple as an underactive thyroid, it’s harder to treat; being that removal of too much hormone is less straightforward than adding some extra. If you have too much thyroid hormone then you have extra adrenaline so your heart (for eg) and other organs in your body overwork. The drugs to control the thyroid are not as simple as thyroxine but are manageable.
I know Lemtrada was ruled out for me for a variety of reasons, one of which is that I had Graves Disease that was treated 25 years ago with partial removal of the thyroid, leaving me ultimately with an under active thyroid. (I’ve also had drug related liver problems and have had MS for a long time, leaving me quite disabled so wouldn’t have been a very good candidate anyway.)
Personally, if I were relatively recently diagnosed and currently not very disabled, I’d go for Lemtrada if it was offered. Just imagine having your immune system reset and essentially not having MS anymore. Yes, there are ongoing potential problems, but if it were a simple matter of swapping MS for Graves Disease, I’d opt for Graves. It is treated with several drugs so you’re not likely to be drug free whatever you choose, but it’s nowhere near as disabling.
Btw I’m now on tecfidera and agree that it’s really not a major disruption to ones system. The first few months can be a little rocky with gastric problems but 6 months in I have no significant side effects.
Good luck with whichever DMD you end up with.
Thanks everyone for your responses. I realise that taking tec may or may not cause side effects, but the thought of the possibility of taking lemtrada is the option I’m leaning towards. Of course, it may not be offered to me and once I’ve spoken to my Neuro and aware of which treatments will be available to me with everyone thoughts and the research I’ve read I’ll be able to make an informed choice. I’ll let you know how I get on on Tuesday Sharon x
It looks like having aa already existing thyroid problem doesn’t rule you out. I’ve had many responses from peeps on their fb page. Now let’s see what my Neuro offers
Good Luck with your decision, I have been on Tecfidera 8 weeks, after initial period of flushing and nausea, not pleasant but I could manage. With all DMDs side effects need to weighed up against risk etc. I previously tried Rebif for a year, horrible felt like a zombie! Sleeplessness, skin changes, fatigue etc. Much easier to take a tablet then inject. Good luck your MS Nurse and Neurologist should be able to help you decided. I was given the choice between Tec and Fingolimod, decided on Tec after reading the MS trust Booklet on DMD, a really useful upto date guide.
Very best wishes