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Stopping the lot

So, I changed from the Avonex weekly injections to Copaxone Daily Jabs because I became an emotional wreck and then 6 months in to the Copaxonee I felt like the same thing was happening - only 10 x worse! I became so anxious that I was unable to spend time with my friends without worrying that I would say/do something to upset someone. I was unable to take anytime off work in case I got fired in my absence, I was unable to hold a rational conversation without bursting into tears. It was ridiculous.

It escalated when I developed a rash (there is a word for it beginning with U, but I cant remember) which is basically my immune system deciding there is something to fight and releasing too much histamine. MS Nurse said that it “might” be a relapse - I said I dont care - make it stop!1 Every morning, I am literally covered, head to toe in hives. The antistamines they have given me do work within a couple of hours and I am learning to control the hives so that I sleep through the worst of the itching, but all in all, not pleasant. Anyway - I digress! The point of my post is this! I have taken back control. I have taken myself off all medication except the antihistamines and I fee so much better! I feel like ME again - like I have my my life back!

Does anyone else feel that the very thing designed to help has made things 10x worse?

Urticaria? (That’s what the docs call hives.)

I am sorry that you have been having such a rough time.

In answer to your quesiton: no, I do not feel that the very thing designed to help has made things worse - quite the opposite in my case. (10+ years on Avonex and now 3+ on Tysabri). But I have been lucky and the DMDs have just got on with their jobs (sometimes successfully and sometimes less so, alas - my MS has always been pretty aggressive) and so my experience has been very different from yours.

I am glad that you are feeling well and long may that continue. If you do try again with other DMDs, I hope that you find something to suit.

Good luck.

Alison

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Glad you are feeling better, are you thinking of trying any other DMDs?

Hi, I was on copazone for 6 months I had terrible side affects and I decided to stop, then I started on avonex after just the first injection I felt so ill and depressed, that was nearly 2years ago I don’t take any medication and feel so much better, it is a big decision to stop but for me it was the right one.

good luck Sue

Not for now. I have an appointment with the Neuro at the end of November and will discuss it, but my gut instinct is telling me that the side-effects just arent worth it. There is only a 30% chance the DMD’s will prevent a relapse and those odds are not worth me gambling on my mental health. I was so low on the meds but wont take anti-depressants for a depression caused by other drugs - it ends up being a pill to combat a pill to combat a pill. The easy solution is to just steer clear of anything that has the side-effect of depression or anxiety.

I wont say never though. I may change my mind in the future, but for the time-being I am happy, healthy(ish), managing my symptoms and back to skydiving which I just wasnt in the mood for when I was feeling so low. So life is good at the moment and I really want ot keep it that way.

Rachel xx

So I’m not alone! It’s always good to know. :slight_smile: Whilst I dont wish my problems on anyone, it is nice to know that someone else has had he same problems so that it’s not just me being a freak! LOL

TEC-FID-ERA!

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First thing, it is absolutely everyone’s personal choice on whether to take these drugs are not.

I started on Avonex in the mid-90s till about 2000, now I know that the manufacturers/doctors/neurologists tell you that it reduces the symptoms by a third and the attacks by about a third, but it definitely coincided with the worst period I have experienced with my MS. I was going downhill at a rate of knots, now without it (according to the professionals) I would be a lot worse yet, coming off the drug, I would think, definitely, others will say coincidentally resulted in a lot fewer are attacks and a much happier, more content person.

If any newly diagnosed person asked me for advice. I would definitely say stay away from those drugs, look after your health change your diet. I feel it makes a lot of difference.

My MS adventure started 32yrs ago - When ‘DMDS’ became available l did ask about them - l was told by the consultant that the side-effects would be worse then the MS symptoms. l decided not to try them. Then l was told l had SPMS - so not suitable for any dmds anyway.Over the years l have been prescribed several different meds for ms symptoms. They all had dreadful side-effects - and not one of them actually ‘designed’ for ms - mostly, epilepsy/parkinsons/ bi-polar/ even HIV!!

For the last 7yrs -l have been taking LDN - and this made such a difference to my life in lots of ways. And l have not ‘progressed’ since taking it. Where was it 32yrs ago?

l did try Amitriptyline for some time - as GP thought it would help at night with leg pain. Recently, l did, by accident run out of them - and surprise - surprise - l felt much better for not taking them. So that’s another one off the list.

So apart from LDN - l take a high dose Vitamin d3/B12/Magnesium - 5HTP [Seratonin] and also Sativex for muscle spasticity.Pro-biotics/Omega 3.

l do exercise - have eliptical trainer/healthrider and l do Pilates. l rarely sit down all day - try to keep going until dinner-time. Use a rollator for getting around the house and garden and a scooter to take the dogs out. This is because l have arthritis in what was my best leg. Had hip/knee replacement which l am still battling to get over. lf l do sit down l find it difficult to get going again. l do not suffer with fatigue since taking the LDN - and my mental state - brain alertness is much improved. -

This is what suits me - and l know we are all different - but l do feel concerned about folk who take so many different meds - as l know from past experience that they are not always compatible.

l try to not eat gluten - stick to a low carb/high protein diet with plenty of salad and green veg.

lts true - l have little faith in GP’s / Neuros - as it has been my experience that they know little of MS. So l suppose l have been a bit of a ‘maverick’ - but it works for me.

Also, l have never smoked or drank alcohol. l can cough and fall down without!!!

Thanks for posting this Rorgan 3. I’ve had lots of struggles with DMDs. Mainly with my bloodcount becoming too low. I’m now on Fingolimod, struggling with catching viruses, just had a bacterial infection too and wondering whether it is worth it. For me, my MRI has had little change in 3 years, so i guess it’s holding it back. Then i think, well i could get really sick with infection. MS versues infections. No answer to this, it’s so difficult.

I recently was given a medicine for memory, the side effects for me were awful, so that lasted 4 days. I really understand why some people decide to stop the meds and see what comes. A very difficult decision for any person with MS because none of us can know what will happen with or without the meds.

Best wishes to all making these difficult choices.

I’m going to add to my post from the other day. After reading spacejackets I realised that I didn’t mention LDN, I’ve been on it for about seven years and feel great. My symptoms have progressed over this time, but very, very slowly.

I probably didn’t mention it because it doesn’t feel like a drug, no side-effects. Nothing at all.

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Hi, Could someone tell me what LDN is?

thanks Sue

Simone, The best informative read on MS - is the MS-UK magazine called New Pathways - its delivered to me every two months - and it is full of really down to earth knowledge from people with MS. Always, lots on LDN - Low Dose Naltroxine. google ldnresearchtrust.org - all volunteers running it - a non-profitable organisation. Some GP’s will prescribe - but it is easy to get via a private script via e-med - then Dickson’s Pharmacy in Glasgow will send it to you. Costs about £20 a month. More and more GP’s are getting up to date - and prescribing it.

LDN - boosts your endorphins - gives you the ‘feel good factor’. Recently, a good friend of mine has decided to try it for her MS - and l was so thrilled when she emailed me say that she was feeling lots of benefit from it. She was surprised at how much more energy she had - and felt more ‘alive’. As with all meds - there are folk who say it does nothing. But many thousands do!