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MS - does anyone have any experience with Methylprednisolone via IV

(39 Posts)
gailforce1 Fri 29-Jul-16 07:02:46

After being sent to A&E by my GP it was decided that I am having a relapse 7years after diagnosis and no problems since. I was given 1gram of this steroid via a drip and have to go back today and tomorrow for 2 more doses.
I have been given no information about how long it will take to see any improvement or what continuing care will be. Does anyone have any experience of having this drug? I will try to ask today but am just going to a side ward to be given the drip and not seeing the consultant. TIA

Badgoushk Fri 29-Jul-16 07:18:36

Is there an MS specialist nurse at your hospital who you could ask to talk to? Sorry to hear about your relapse xxx

gailforce1 Fri 29-Jul-16 07:31:34

Thank you Badgoushk for reminding me about the MS nurse. I know that there is one at my local general hospital but because there was no neurology specialist there yesterday I was sent to another hospital 30 miles away!!

seaviewplease Fri 29-Jul-16 09:15:16

I referred myself to the local community MS nurse as hospital didn't do it. Literally googled the number and called up.

I'm new to it all so better advice will probably come along, but steroids will give you a boost and shorten/reduce the impact of the relapse I think. They make me extremely grumpy but wired. I then get a slump after the course has finished and need to sleep lots and lots.

Definitely recommend getting yourself in contact with the MS nurse as they are the best contact for questions and monitoring.

Wish you well!

seaviewplease Fri 29-Jul-16 18:56:48

Bumping for you.smile

Toddlerteaplease Fri 29-Jul-16 19:03:15

Yes I've had it twice, as oral doesn't do anything for me. (Neither does IV) My hospital prefers to do oral as apparently it's just as effective as IV. (Though one doctor told me that IV is better.) I have had it for an acute relapse and also for five days with lemtrada. The worst side effects for me were insomnia and the come down after the five days was horrendous. Wasn't as bad after the 3 day course. You still get he nasty metallic taste but it's not as bad IV. Good luck. If you have any more questions please PM me.

redpriestandmozart Fri 29-Jul-16 19:33:46

Yes I have had IV steroids twice, May last year going to hospital for 3 days, this year, April and had them at home, a nurse came out to me and hooked me up each day. I find it hard to sleep the first 2 nights, by night three the lack of sleeps means I sleep better. For me there isn't any improvement right away and I crash after about 5 days then after a week I begin to feel much better. For me the improvement is noticed about 4 weeks later when I suddenly feel much better and don't know why then remember the steroids.

I've had oral steroids before and found them useless. I find that it's all pretty standard and there isn't really much of a follow up, first time was a bit scary as I was afraid of reactions, side effects and how I'd feel afterwards. I was told I could only have IV steroids twice a year max and the more I get them the less effective they can be so really only get them when things are pretty bad. Some swear by them others notice no difference. Sorry you're having a relapse, hope things get better for you soon x

gailforce1 Fri 29-Jul-16 20:09:37

Thank you for all your replies. There is one part time MS Nurse and she is back on Monday. I went in for 2nd IV today and was seen by a dr as I have a blood shot eye and have a very red, flushed face! She was concerned about the eye and they will hopefully check it again tomorrow when I go in for the 3rd IV. I feel as though I have been hit by a truck!!
The worst aspect of this relapse is that being numb from the waist down I have lost a lot of bladder/bowel sensation and knowing when "to go" is now guess work. I am hoping that this will be first thing to get better!

Toddlerteaplease Fri 29-Jul-16 20:16:51

Possibly time to start investigating DMT's if you are not already on one. The current thinking seems to be to treat aggressively from the start rather than wait for relapses.

seaviewplease Sat 30-Jul-16 06:16:30

Gailforce, it does sound like a nasty relapse. So sorry. You've managed really well for seven years too.

The MS nurse should help you with any issues of incontinence or refer you to another nurse, I think. Obvs hoping that it's not a problem. The specialist nurses are fantastic in my view and really understand practical problems. Mine is a great sounding board too- would be lost without her.

Hope your last IV day is alright. I took a piriton to help sort the sleep out if that's a problem.

brewcake

Toddlerteaplease Sat 30-Jul-16 07:59:03

I believe that facial flushing is a normal side effect of the steroids. I could have fried eggs on my cheeks!

gailforce1 Sat 30-Jul-16 11:00:42

Toddlerteaplease yes, that is good description of my cheeks and chest at the moment! I have not heard of DMTs, s this medication you have been prescribed?

Seaviewplease pleased that you have had such a lot of help from the MS Nurse. I am looking forward to speaking to mine on Monday but I do know she is only part time and covers a huge area!

Shortly going for third and last IV. Fingers crossed for an improvement soon!

Toddlerteaplease Sat 30-Jul-16 11:16:36

DMT's are disease modifying treatments such as Capaxone, interferon, Tysabri and Lemtrada. When I was diagnosed four years ago I didn't qualify for any until I'd had 2 relapses in a year. ( I had 4) I believe the goalposts have changed very recently and they are now treating newly diagnosed people with Lemtrada (the most aggressive treatment available) straight away to hit in on the head. I had capaxone which didn't work but I got on well with. Then tysabri which I really liked but my consultant wanted me to have lemtrada. Had round one in January. I didn't realise that not everyone has an MS nurse allocated to them. My hospital has a really big MS team.

seaviewplease Sat 30-Jul-16 13:38:03

Do hope you feel lots better and quickly. You may have to persist with the MS nurse or find which of your GPs at your surgery is most understanding of MS. You need someone to help you and certainly see a consultant neurologist about DMTs. They are usually at the larger regional hospitals and will have good specialised knowledge to help you. Just ask if nothing offered.

All the best. I've just had lemtrada (six weeks ago), it was tough and I still feel ugh but hoping it'll reduce the relapses and impact. It's a really tough illness isn't it.

Toddlerteaplease Sat 30-Jul-16 13:52:23

I've been really disappointed with Lemtrada. It was made out on the Facebook forum and by my consultant as a bit of a miracle cure but I don't feel any better than I did on tysabri and still on crutches.

seaviewplease Sat 30-Jul-16 15:03:15

Hmm, know what you mean. There's been a lot of trumpet blowing about it and people miraculously throwing away their wheelchairs. Ive also seen some people lurking saying they've had four rounds and are still relapsing.

Yes it's meant to reduce the relapses and I would hope four rounds would have some impact. I'm worse now than pre lemtrada so really hope it's going to do something positive. Not looking forward to next year already, the side effects gave been awful. confused. My JC level was too high for tysabri which is a shame.

seaviewplease Sat 30-Jul-16 15:04:30

Toddler, is that the UK lemtrada FB page? I have had experience of that and left....

Toddlerteaplease Sat 30-Jul-16 15:23:03

Yes it is. I've also stopped following it as it was very repetitive and was just filling my newsfeed with MS and I couldn't forget about it. Also stopped following the Tysabri one Coz people fretting about their JC status was doing my head in!! I really thought I'd be a new woman by now. Although I haven't had a severe relapse I still don't feel great. Also all the support from the MS team has gone. I was being seen monthly for infusions and now it's 'here's a years worth of blood forms, see you in three months' the nurse I see in clinic isn't the one who does Lemtrada so it's been tough.

seaviewplease Sat 30-Jul-16 16:17:45

That's a relief, I mean about the FB page. It drove me nuts. People keep posting the same questions asking what to expect when they just need to read the files/Google. Filling the Internet with more words. I am a misery though.

So, you're being tested every month but only see the nurse each 3rd month? Surprised at that. They would call if you showed an abnormal result I'm thinking. But there'll be so many people having it, the nurses will never keep up.

I too get cheesed off with looking at MS stuff on my FB - depressing.

OP- sidetracked there. Hope you're ok?

Toddlerteaplease Sat 30-Jul-16 17:26:16

My hospital has only had four people have it so far so I would imagine they keep a close eye on the bloods. It's a bit of a mixed blessing being a nurse in the same hospital though!

OP, you might find that you need to get your treatment transferred to a bigger hospital even if you have to travel. Not ideal but you sound like you've had a very nasty relapse and you need better support from an MS team. Hope you are feeling better very soon. flowersflowers

gailforce1 Sun 31-Jul-16 11:31:56

Well third IV yesterday 1pm. By 6pm the numbness was worse is my left leg and there is no improvement this morning.
I am at work away from home for 2 weeks so cannot get back to AAU or the GP for a follow up till 16th August. However will only be 10minutes from a major hospital and have been given a discharge letter to take should I need it. My concern is how soon should I see an improvement?

Toddlertea and seaview I am following your posts with interest and learning! Please cold you tell me what JC levels are?
Also, is the MS Society any help? Worth Joining?

Toddlerteaplease Sun 31-Jul-16 13:44:25

JC stands for John Cunningham virus. Is a virus that many people naturally are carriers of. If you have Tysabri they have to monitor the levels of it in your blood as it can cause a nasty side effect called PML. (Google it) it's incredible rare to get PML but can be fatal if you do. If your JC levels are too high they will not risk treating you any longer with Tysabri. If you look on the forums people really get their knickers in a twist about being JC positive and having Tysabri. However the risk is small and you are very closely monitored..

Toddlerteaplease Sun 31-Jul-16 13:47:15

Ps I have joined the MS society, it's only £5 a year and they have a helpline etc. My local branch is very active but I don't really do anything with it. Don't particularly want to be surrounded by people in a worse state than me! But they do run conferences which can be excellent. So probably is worth joining. There is also the MS trust which deals with the research side of things. And MS UK.

Toddlerteaplease Sun 31-Jul-16 13:51:43

PPS
I M afraid that the answer to your question about how quickly you will see an improve the is 'how long is a price of string' steroids only shorten the effects by 48 hours or so and make no difference to the outcome of the relapse. I think you really need to be off sick and resting at home. As stress etc can make it worse and my nurses have always said not to work during an acute relapse if possible.

gailforce1 Sun 31-Jul-16 14:18:07

Thank you but although I call it work many wouldn't! I do house sitting so am going to a beautiful house in the countryside to look after 3 dogs (no horses this time)! I will have to walk them but that is all I have to do as a house keeper comes in 5 mornings and would bring me any shopping I needed! In many ways nicer than being at home as I live in a town house and have to keep going up and down stairs to the loo, have no garden and am in the middle of a town! I don't have any family and the dogs are good company so will be able to enjoy the garden if the weather is good.

Thank you for the info and Will look at joining the Society. I am a bit afraid of looking at forums as there is so much detail which I would probably just find more confusing! Is there an MS thread on Mumsnet?

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