Hi everyone. Looking for some advice. Got my official diagnosis of Ms yesterday. Neuro not keen to diagnose ppms as I’ve only had one mri even though my symptoms have never gone away since day one many years ago. He wants me to discuss which meds to take with ms nurse. Problem I have is that I’m relatively well apart from right arm numbness and foot drop. No pain or fatigue as yet. I’m worried that by going on meds they’ll make me feel generally unwell. Can you lovely people share your experiences and side effects with the different drugs on offer
neurologist directed me to the decision site and I’ve looked at them all in detail. Was just hoping to find out personal experiences from others on DMDs which he also suggested that I do. I know they will affect people differently so would like to hear whether good or bad what people have tried
ive only had mild symptoms to date (numb toes) but decided to jump straight into the DMDs. The numb toes started in February (and completely cleared up ina couple of weeks with steroids) and I was formally diagnosed active RRMS in June and am now 10 days post Lemtrada Round 1. I opted for Lemtrada as, whilst the side effects scare me, MS progression scares me more. It is early days for me - I am still at risk of delayed infusion reaction, infection and longer term side effects - but so far so good. The treatment wasn’t too bad to receive - made me a little sleepy and I developed a rash for a couple of the days - and I was tired for a couple of days when I first got home. But I’m feeling well and strong now (went out for a 5k run this evening and start back at work/ going to the gym Monday). I’m trusting the monthly monitoring plan to help pick up and longer term side effects so that they can be managed - and am hopeful that this aggressive treatment will lock my MS up long enough to allow the scientists to find a proper cure.
These were the three I had looked at. Katy is Lemtrada a steroid and if so is there side effects of weight gain? It certainly looked the more appealing of them all as I’m not too good with tabs.
Carole how was the self injecting. Is it just something you get used to. I’ve no fear of needles but the thought of doing it myself is scary lol
Lemtrada itself is basically chemotherapy. It destroys all of your lymphocytes in the hope that when they grow back they will be re-trained not to eat your central nervous system. Unfortunately there is a risk that they may pick up other bad habits instead (and e.g. go after your thyroid instead - in which case you may need to take thyroid medicine to manage this).
When the drug is administered you are given IV steroids to help your body accept the treatment. The protocol differs depending on where you receive the treatment. Some hospitals give steroids on all 5 days you receive the lemtrada infusion. Others, like Kings College where I had mine, give you steroids on the first three days and then if you are tolerating the treatment well (as I was) you skip the steroids on the last two days.
i was/ am a bit nervous about gaining weight due to the steroids. I’m a former fatty and was very heavy for a period after loosing my Mum (about 6 years ago) and worked hard to shift the weight through balanced diet and exercise. I’ve managed to maintain my regime/ weight for about 4 years now. However, I see effective treatment of my MS (avoiding mobility issues/ fatigue) as key to my longer term weight management so I’m trying not to stress about any short term weight gain. That said, i went to hospital loaded with healthy snacks for any steroid munchies to avoid reaching for crisps - and have taken the same approach with my kitchen cupboards at home! I’ve also decided to give myself a one month bathroom scales amnesty - to allow me time to get back to the gym before assessing the damage done. Finally, touchwood I’ve been pretty lucky in that ive recovered quickly - so I’m going to try and get back to my normal running/ gym routine as quickly as my recovery will allow.
Thanks Katy for your response. I’ve been a yoyo dieter all my adult life but I suppose it’s the choice between gaining weight and becoming disabled sooner. I can lose the weight but I can’t reverse the disability. Seems it’s a no brainer lol
Hello all you lovely people, Well I have no advice as to which dmd as I have not started one as yet. I was diagnosed in 2009 and up to a few weeks ago had never had a relapse. This all changed just after I was diagnosed with breast cancer. I was having what the ms nurse was a psuedo lapse but gp later said it was a ms relapse and I was given 5 days oral steroids. I am slowly but surely getting back to myself and tomorrow morning am going for a ct scan and then my radiotherapy plan is given to me which will take me to October. I am very fortunate that the cancer has been removed with no lympn nodes involved and the radiotherapy is preventative the oncologist said. The problem now lies with the dmd’s as I have to take tamoxifen for ten years and am really scared about even more drugs in my body. In saying that I never want to experience what I went through with the relapse. Its a scary old time but hopefully by the time I meet the ms nurse and neuro in OctoberI will have some clarification as what I can and cannot take together. Thanking you all for being there and all the best in whatever dmd you choose. xxxxx
lf you are PPMS - and it certainly sounds like it as your symptoms have not gone away - then dmd’s are not prescribed.
l have had PPMS 34yrs now. And l have joined the facebook groups Biotin for Progressive MS. And also Free lndeed - Vitamin D3 Protocol. Both brilliant. So l have been taking the Biotin - following the MedDay trial. And now l also following Dr Coimbra’s protocol treating auto-immune diseases with high doses of vitamin D3. Dr Coimbra is a consultant neurologist who has successfully treated his patients for over 10yrs. Super book to read is Multiple Sclerosis and lots of Vitamin D by Ana Claudia Domene - got mine via amazon.
Along with the biotin and vitd3 - l take B12 and B complex omega 3 Alpha Lipoic Acid Magnesium and Vitk2. l have found all the prescription drugs make me worse - so l do avoid them.
The sooner you start on the Vitamin D and Biotin protocol the better. For old stagers like me - the damage is done. Although l do feel much steadier on my legs and have lots of energy - and a clear brain. So all is looking bright.
Please take the time to read/ look up online - join these groups as you will learn so much from them. l have been interested in Atlas C1 re-alignment - looked at lots on youtube - and have followed posts from folk who have tried it. The theory is that a mis-aligned ‘Atlas’ causes most of our disabilities. l have managed to find a person who specialises in this treatment. And they are holding a few clinics in UK. So l am booked the end of the month - to go to one in B/ham. Not too far a journey. The therapists is Marie Casalini. lts worth a try - and l am always up for ‘having a go’.
If you have PPMS then DMD arent generally prescribed - but your doctor would need to be certain of what type of MS you have before making that decision - they are testing drugs out primarily for ppms but they arent out yet.
Ive had RRMS ms for 13yrs and have been on 6 DMDs.
Copaxone - (daily) which I tolerated well but had no effect as I took 2 relapses whilst on it.
Rebif - (3 times a week) which I also tolerated well and had no problems at all on it-infact I think it was a contributing factor in me being relapse free for 3yrs. But there were a few deaths so my Neurologist thought it mad to keep me on it when there were alternatives.
Tecfidera - (1 pill, twice a day) - Was quite ill on it - took severe stomach pains, headaches, nausea and flushing and was bedbound for nearly 3 months
Avonex - (1 weekly injection) once again tolerated well but I changed from that to Plegridy (which is the same) through personal choice
Plegridy - (once,every 2 weeks) - Tolerated it well but after my severe relapses of last year it was decided I had highly active RRMS and needed something stronger
Tysabri - (a monthly infusion) Ive only been taking it since March and up until August had no side effects. But it does lower your immune system and unfortunately I took a really bad chest infection after last months dose and Im still not better. Now it may just be a once off but I have to tread carefully and speak to my Neurologist about what we’re going to do next.
Wow Steff you really have given me a real insight to the various drugs available. Neuro has diagnosed RRMS and wants to hit it hard so to speak. Still waiting for MS nurse to contact me. Was told it would be quick like 2-3 days for her to be in touch but nothing yet. Think I would prefer one of the infusion treatments if that’s an option for me. Suppose I’ll just need to wait and see
Copaxone - worked quite well but started getting more relapses after 5 yearas
other beta-interferons - too scared to take because of reaction to Avonex
Tysabri #1 attempt - no major side effects but not available in my local area and the journey time to London was wiping me out too much. (Plus they changed the appointment times which would’ve made the driving time 3+ hours each way)
Tysabri #2 attempt - now more local, gave me severe liver problems (which makes me wonder about attempt #1, I don’t even know if they tested my blood for LFTs)
Tecfidera - brought my lymphocytes down too low, they are still recovering, 10 months later.
So that’s me, over and out (of options). My body won’t handle new drugs very well at all now. I’ve had another drug induced bout of hepatitis, so any DMD that is metabolised by the liver is out. Any drug that works by reducing lymphocytes is out. And of course, I couldn’t start anything new until my lymphocytes recover.
So now my neurologist says although I may still have relapses, I’m ‘more progressive’.
It might look like loads of DMDs have bad side effects, and I would recommend that you steer clear, but I have the opposite view. I suggest you go for the most aggressive drug you can (ie that’s offered to you). When you’ve hammered your body with loads of different drugs over years, eventually it will say “enough’s enough, I’m not put playing any more!” Which is I think is what’s happened to me. Too many drugs (and that I took a fair number 25+ years ago for overactive thyroid), and the body can’t handle any more. So, if you’re fairly newly diagnosed, and have quite active MS, with lots of relapses or disabling relapses, go for the biggest gun you can, see if you can stop it in its tracks.
Thought of you this morning as I broke my pledge to remain off the scales for at least a month post Lem to give myself a chance to get back to something close to normality.
Anyway - good news is that I’m 5kg lighter than my weigh in at the start of Lem! Trying to ignore the facts that:
gym scales are probably less accurate than hospital scales
it was the wrong time of the month of me when i started lem so I was prob carrying a ton of water weight
this morning’s weigh in was pre-breakfast and post gym (unlike the hospitals afternoon weigh-in which was on a day of nil gym and much pre-hospital nandos…)
Have to take the positives where you can find them! - hoping at least this means I haven’t ballooned too much with steroid induced munchies!