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Medrone

Just been given medrone anyone1 used this? any good? Any side effects? Cheers Jakki

Hello, I haven’t been prescribed this but just know it is a steroid. Good luck with it and I hope it helps. Sam x

Thanks. Hope it does too! X

Hi Jakki! How did you get on? Medrone is a brand name for Methylprednisolone. They’re corticosteroids and are used to treat a number of conditions where there is inflammation. When this all kicked off for me, the MS Nurse told me to get a 5 day prescription for it from my GP. I was put me 5 x 1000mg (daily) for 5 days. I didn’t fell unwell whilst on them, but BEWARE, as with all steroids, they are immuno-suppressants so you are susceptible to things like Thrush or a Urinary Tract Infection (UTI). I caught a UTI, so then had to go back to the GP for antibiotics which I was on for 7 days. Oh the joys!! How are things going that aside from one newbie to another? x

Hi apart from the prescription not a lot to tell got to wait for the ms nurse now. I now know its repressive relapse MS. Was told to do a wee sample to check for uti but couldn’t go waited over an hour so didn’t bother in end. Jakki x

Standard procedure before prescribing these steroids. You should be fine, but at least you know what to look out for, whilst you are on them. I think that I’ve now reached the end of that long, dark tunnel after a month of almost constant and excruciating, muscle spasms each and every day and two months of a really spastic left leg. I even managed to cut the grass yesterday; although it was at a snail’s pace. If it has taught me anything, it is that I physically have to operate and function at a fraction of my past life. I’m almost returning to normal, but I fear this is now the calm before the storm. because I go into hospital soon to have Chemo. How have you been coping with your relapse? x

Terrible tbh it’s my whole right side and being right handed has been really hard. I have a complete numb right hand so can’t even cut my dinner do my hair etc. it’s the simple things u miss really. Hope these steroids help. X

So sorry to hear that, Jakki. Just remember that it is a blip and you will emerge with your head above water! Best wishes X.

Hope so Hun. Thought they were supposed to build u up fell asleep for 2 hours this afternoon and have had a course of vitamin B inj too which are supposed to give you energy! How long do they usually take to start making a difference? X

Hi there! My MS Nurse told me that it would take about two weeks before I started seeing any ‘benefits’ (if you’re lucky). As I mentioned before, following the steroids, I then developed a UTI, felt pretty ill and then had to take a course of antibiotics. I then had two fantastic days when every single MS symptom just disappeared. It was spooky. I was walking perfectly normal, had no balance issues and said to my husband, " I think I might be able to go back to training on the track in a couple of days. Tell me I’ve just been living in a bad dream and I don’t actually have MS". Then BOOM!, within a day or two, I then slipped into those absolutely dreadful muscle spasms which persisted until just about the last few days. My head is just about above the water now, but I still have considerable weakness in my legs and my quads ache. Remember, MS is different for each and every one of us, so in two weeks time, you could feel fine. Please, just take each day as it comes- don’t think ahead! I’m pinning my hopes on the ‘proper’ treatment program, which for me, starts on Sept 9th. But, Jacki, be pro-active- definitely, purchase the book by Dr George Jelinek ’ Overcoming MS’. In addition, I’m taking daily vitamin D3, high strength (1000mg) cod liver oil capsules, and vitamin B-100 complex (contains B1, B2, B6, B12 etc from Holland & Barrett) which is really important for brain health. I’ve just also bought a book by Dr Terry L Wahls, ‘Minding my Mitochondria’. which is packed full of scientifically backed knowledge about what we, as MS sufferers should be eating and what we should be avoiding. It makes sense and the woman knows what she’s talking about. Finally, expect to feel shattered and tired. You’re in a relapse at present. That’s ‘normal’. I was definitely needing a sleep by 12.30pm in the afternoon each day. Once I had a sleep, I’d wake up almost recharged. My thoughts are with you until you bob up to the surface again. We’ve got nothing to lose and everything to gain. Keep strong!!!

What does your proper treatment entail Hun? I am on Vit D supplements from the docs and regular Vitamin b12 injections as very low. Had to have 3 a week for 3 weeks which ended yesterday thank god then every 12 weeks from now on. As u can tell this is all new to me, I will deffo look out for those books, where’s best place MS society or maybe amazon? I’ll have a look today. You have been very helpful. Xx

Don’t worry I have found on amazon. Not cheap but if they help… Xx

Morning! Can’t say I’m an expert yet. Like you, I’m on a very steep learning curve. Thing is, I do have a stubborn, fearless side and I WILL NOT be defeated, without a fight. I have a massive Warrior tattoo, on my back, for Christ’s sake! In addition, my brain is always operating at the speed of light, so there’s no fear that my brain is not being kept active through all this sh%%?!. Anyway, I’m at the worse end of the RR MS scale, which to look at me, you would think surprising. But, I actually have a high lesion loading on the right side of my brain, so my Neuro Consultant has recommended Alemtuzumab aka. Campath. aka Lemtrada. You can check it out on Youtube actually. It might work for me, but it might not- no one knows! I’ll just have to ‘suck it and see’. Hence why I’ve been investigating dietary stuff. Personally, the more I learn, the more I’m intrigued. I’m already modifying my diet somewhat, so we’ll see what happens, but the Scientist in me needs to test out these theories. Changing the subject, I’m glad you’re considering purchasing those books. I purchased mine through Amazon. Try and purchase pre-owned copies, if you can- obviously cheaper! We each have to take control of our own destiny. I now know my enemy and I’m arming myself with the weapons,I need to go into battle. And, if I can help my fellow comrades, along the way, I will. Anything that I learn, that will help MS sufferers, I aim to share. Subject change again. What treatments have been offered to you, based on your presentation? xx

Ignore that last question. Dooh! You’ve already told me you haven’t got to the stage yet! xx

Ignore that last question. Dooh! You’ve already told me you haven’t got to the stage yet! xx

Anyone know the cheapest website to buy these books?

They seem dear on amazon for a book but if they are really helpful i don’t mind paying it.

I found it for £10 on tesco books but not in stock waiting for message to say back in stock. The dr terry one can’t find anywhere had to be amazon. Hope that helps. X

Re Tracey Ann when I went to see consultant he hadn’t received the scans from my MRI so couldn’t answer many questions . Funnily enough the girl who took me is the medical secretary at my original hospital and said I faxed those over on the 14th June when Jakki was in the hospital! She went Barmy at his secretary who stated she never got my referral as well which was also sent that day! If it wasn’t for her I would l still be waiting for an appointment as booking for oct! Funnily they managed to fit me in for last Monday! I have been disgusted with the nhs all thru this journey. My systems started back in feb and only got the MRI when I did may again thanks to Jo!

Jo ! That’s better. Please accept my apologies for assuming your name was Jakki, or is it? I’m confused. Unfortunately, I can’t pretend. My username is just the stupid name I was born with. Subject change. Yuk! sounds like you haven’t had too smooth a journey. But, let’s not jump the gun. We’re going to have a long relationship with the NHS, so we’ve just got to roll with it, I’m afraid. As if we haven’t already got enough to deal with! Anyway, it’s early days. Once you’ve got together with your MS Nurse, I’m confident things will run a lot smoother. But, remember- make sure you keep control of the reins. If you are waiting reports, appointments, meds etc, make sure you keep chasing, if you have to. That way, you cannot be forgotten. xx

No my name is Jakki Hun Jo is the girl who has chased this all up for me. Well wont hold my breathe on the ms nurse way I’ve been waiting all along but yes will hopefully get some more answers then. Xx