Hello i’m new to the forum but was diagnosed 2 and a half years ago AFTER HAVING a NUMB left LEG for 2 months, referral to a neurologist, MRI scan & some spinal cord lesions discovered. I have had several relapses since diagnosis but am currently having a really bad, disabling one and have been given steroids for the first time.I have a few questions. if anyone can help i would be REALLLLLLLY grateful. firstly, why cant i press the return key? does everyone have that problem? apologies for the crap grammar one of my arms doesn’t work and im exhausted. has anyone had a bad relapse (my left arm and left leg do not move where i tell them to go and i can barely move them at all anyway, my fatigue is bad to the point im having trouble supporting my own head!). how long can the steroids take to work / for you to notice an improvement? god i hate bad grammar and now i’m being forced to write one long paragraph of an essay against my will. sorry for this. my boyfriend works full time and has been really stressed out this week with looking after me, doing all the housework (which i normally do when i’m ‘well’ as i’m unemployed), sorting the electricity in the whole house, which decided to trip every10mins after he sorted it, one day into my relapse (typical). does anyone know about any help for carers? im normally able bodied most of the time so dont know if we’d be eligible anyway, but wanted to do some research. I am not currently on DMDs but awaiting referral to a neuro to discuss them/if needed. right now i will take ANYTHING they suggest not to have to go through this frustrating, heavy, uncomfortableness ever again. i cant even turn myself over in bed, i can’t sleep anyway so maybe that doesnt sound important but im uncomfortable however i lie, wherever i lie. has anyone taken herbal sleeping tablets while on steroids? how bad are the withdrawal symptoms from the steroids? i have 4 days of 5x 100mg tablets to be taken at the same time in the morning, no ‘weaning’ off them. is it ok, or do you feel ill(er) when you stop? i discovered the website ‘ms decisions’ on this(?) forum and wondered if anyone had any other useful links to good drug info/decision making websites please? thankyou for any help or support, Eleanor xx
Hi Eleanor, welcome to the board.
Sorry you’re having such a hard time, it’s all stuff most of us can relate to so you’re not alone. Oral steroids can make me feel pretty grotty when I’m on them - my head feels ‘fuzzy’ (not sure how else to describe it), and they always seem to mess up people’s sleep. I’ve not taken herbal sleeping pills, but if you check the label for both the steroids & the sleeping pills they should say if there are any other pills youshould avoid. However if you give a pharmacist a call they’ll be able to give you better advice.
I’ve never had withdrawal symptoms when I’ve finished a course of steroids - I usually start to feel better straight away just from no longer being on them. And in terms of how long it takes them to do their job, I usually start to notice an improvement within a few days. However, something you’ll find with MS is that we’re all a bit different, so no doubt others will give a different answer to that.
As for help for carers, you could try giving your local council’s social services department a call. Or call the MS Society’s helpline a ring, and there’ll be able to give you more info too. I’m sure others on here will have either ideas too, so hopefully they’ll be able to help more.
Thanks so much Dan, you’re such a star for replying Si late in the evening. I was hoping for a reply but thought it might be a big ask for MSers as I thought most might be in bed by now. I’m now on my phone where I am permitted to press return so this will hopefully be more readable. Have read both boxes & the leaflet that came with steroids. No clearer so I’m going on the assumption that ‘they’re only herbal’ & should be ok,which could be silly but I doubt will kill me. Have you taken steroids more than once? Are u relapsing-remitting too? Are u on drugs? Am I allowed to ask one person so many questions or should one do it via a personal message, I am unfamiliar with forum etiquette. Many, many thanks again. Your help is much appreciated. Eleanor x
Hooray for functioning return buttons! To be honest I’m not really sure what the ettiquette is either for when to send a pm or reply on a thread, but I’ll reply here for now. I’ve taken steroids plenty of times over the years (I was diagnosed almost ten years ago). Personally I prefer having them in hospital on a drip, as I don’t feel so rough on them. The last time I spoke to my neuro she said I was on the borderline between relapsing remitting & secondary progressive, though that was a few years ago so I don’t know what she’d say now.
I started out taking Betaferon, but didn’t get on well with it & it did nothing to reduce the amount of relapses I was getting. Then I switched to Rebif, which was much much better and massively reduced my relapse rate. However I started to have problems with my liver so switched again to Tysabri, which I’ve been on for over 2 years, and this has carried on the good work & I’m fairly stable.
Hope the sleeping pills do their job & you manage to get some kip tonight.
Hi Sorry you are going through it. I found eating soon after or before taking the steroids helps reduce the yucky taste you will get. They generally work quite quickly. Because its a short sharp course of steroids you don’t need to ween off. You will feel abit spacey whist taking them but the way the benifits far out weight this . I have my steroids IV in out patients now as I prefer it that way as the oral steroids made my mouth discusting. I find the IV steroids better but wether your hospital will do it because of increased costs etc. Stick with it kiddo you will be back in no time
Maybe if I have to have them again, I’ll see if I can have them through a drip. I wasn’t given the option, maybe as I had told my nurse I can’t walk so it would be hard to get to the hospital. I am taking them in the middle of a meal to avoid the tummy issues and so I’ve got some food left for after to try & get rid of the horrible taste! Yesterday it took me half a tube of Pringles, some dry roasted peanuts, a bag of randoms and a full meal of pasta & sauce! I’m going to be fat at this rate! Thanks also for your reply, lollypop, much appreciated. At a risk of sounding stupid, do u get the nasty taste when u have IV steroids? It seems like u wouldn’t buy I thought I’d ask anyway. No fuzzy head yet but it’s only day 2 & I’m usually pretty dizzy anyway (in lots of ways!) Dan, I’m glad you’re now stable & sorry u had to go through such crap to get there. When you say you didn’t get on well with the betaferon , in what way do you mean (if you don’t want to say that’s fine). The nurse has only mentioned Copaxone to me but I’m sure the neuro will go through more options than just the one. Did you/do you self-inject? Did it take a while to get used to? Have you ever had any embarrassing ‘people asking you what the hell you’re doing to yourself’ type situations? Thank you both Soooo much you’re a real help! Eleanor xxx
I had high dose steroids IV a couple of times - they have worked pretty well although it can take a while, so don’t lose heart if you don’t see a fast improvement. They really are amazing drugs and are very powerful.
Definitely a good idea to get a bit of extra help with sleeping if the steroids are disrupting your sleep. Herbal stuff is good, or you may want to get a few sleepign tablets off the GP - they understand about the sleep disruption thing, so should be able to oblige. Sorry - this advice isn’t going to be much good, it being a Saturday!
I hope you start to feel better very soon.
I’ve recently had steroids orally for a relapse and they do mess with your moods and sleeping pattern. I could only sleep for 2 hours at a time. They make me feel buoyant at a time when I shouldn’t be due to the relapse and not being able to walk very well. When I come off them they make me weepy and sleepy ;-). They stay in your system for 3 months apparently so I am expecting more mood swings for a while yet, I last had them four years ago intravenously when my walking was very bad and because I lived in a tiny cottage with steep stairs the doctors felt I would be safer in hospital until my walking improved a bit.
I found the steroids improved my walking within a few days (with both IV and oral) but didn’t notice the awful taste with IV steroids.
I have been self-injecting with Rebif since August 2009 and i believe this is why this relapse is not as severe as the one four years ago. My last relapse was in October 2009 and that was sensory so I do think Rebif is working for me by reducing the rate and severity of my relapses. I see you have already discovered the msdecisions website which is what my hospital recommended I use to make my decision regarding DMD. There may be a reason why your nurse has only mentioned Copaxone so far but you can discuss this with your neuro and I’m sure he will go through all the options with you and explain the pros/cons of each DMD to help you make your decision. I was really scared about self-injecting but the nurse will train you and be there to support you with the first one. After the first one, I thought ‘was that it?’ as it was a doddle; now it is as routine as cleaning my teeth.
I hope you start to feel better soon, take care, and stop stressing about the housework - it will still be there when you feel better. My house is often a tip but it gets done when I feel up to it and I refuse to feel guilty about it any more.
Hello and welcome Eleanor
Sorry, but I did smile when I read your first post - if ever there was a perfect example of someone on steroids - it does tend to make our minds work in a bit of a fast & furious, scattergun fashion I’m sure the return key has a lot to answer for too though!
For the bad steroid taste, I recommend Murray Mints. And, yes, you get it with IV steroids (I do anyway.)
I would think herbal sleeping pills would be fine with steroids, but if they don’t work you could try your GP for some proper ones. I’ve used them with steroids before.
Unfortunately, steroids don’t always work however some people find them really effective. They can have a quick effect for some people and some relapses, but it may take longer for others. Either way, relapses do go into remission eventually so it’s a matter of hanging in there till it comes.
Re DMDs: the msdecisions website is probably the best, but you can always ask for advice / info on here as well as speak to your MS nurse. There have been quite a lot of threads about DMDs on here recently so you might get some good info if you use the Search function.
Self-injecting really is a doddle. You don’t even need to see the needle these days with the fancy autoinjectors that are available. The injections are maximum once a day so they’re easy to fit into getting up or bedtime routines - no opportunity for peeping toms to ask awkward questions
Getting help for your boyfriend is a tricky one. It would be worth calling Social Services though - see if they can help out with your care until those steroids kick in.
I hope it’s soon
Thank you so much all of you for your replies and help. Alison- not at all, any advice is helpful! Tracey- will prepare for the weepy & look forward to the sleepy! I’m a big believer in having a big fat cry to feel better & get a good sense of release so not concerned about that at all! Karen-I’m glad it made you smile but really not convinced it was the steroids!! Ha ha! My mind is one big scatterbrain of mentalness so I think that was just me! But we can pretend it was the steroids. Still no better but I’ve only had 2days of them so praying after tomorrow’s dose I might feel some improvement…pleeeeeeease!!! If anything my leg is worse & I now can’t even shuffle along the wall to get to the toilet on my own. Just tried to crawl as well & any pressure on my knee was AGONY. Does anyone else find they get what I can only describe as really severe soreness in their poorly/incapacitated limbs when they’re having a relapse? Eg when my boyfriend tries to pick me up to move me or roll me over in bed it hurts& he’s not even rough. It’s just odd. Thank you once again for responding to my probably very dull semi-whinge/ steroid induced (?) chat. You are all stars & are encouraging my new found forum addiction! E xx
hello all. i hope you are well.i have just had my 5th lot of oral steroids this morning (eg day 5) and no improvement at all. i think someone wrote that i might not see any improvement until after the steroids have finished, is that right? is that what most of you find. the irritability side effect has well & truly kicked in, i am in total frustrated anger mode. my nurse is on holiday til mon and noone seems to be covering her. ive left 2 messages with her secretary but i imagine shes very busy. ive spoken to my doc who has ordered me a wheelchair. there doesnt appear to be anyone covering my nurses duties - does anyone else have this trouble? and she normally only works part time anyway so its difficult to actually get hold of her. what do other people do when they’re panicking about things and there’s no one available to help (except the forum!), i am so glad i discovered the forum and decided to write and i thank you all so much for your advice in what is turning out to be my s******* time of need. i cant tell you how much more i am swearing more than normal. right, moan over, if anyone can help re:steroids kick in time scales etc that would be wonderful.thank you all xxx
My steroids normally kick in on day 4 and get my legs working again. I’m so sorry they haven’t worked for you yet. No wonder you are so frustrated especially when you cannot reach your nurse. I’m afraid I gave up with my ‘local’ nurse as she covers a huge patch in a rural area and it takes her a week to come out and see me and at least a day to ring me back. I now ring the nursing team at the hospital who ring straight back.
Can you contact your neuro or at least leave an urgent message for him? Maybe you need to be seen by him again so he can decide what else needs to be done if the steroids don’t take effect within the next few days?
Hopefully someone else more experienced can provide you with some more suggestions.
In the meantime, here’s a and try to stay calm (I know that is easier said than done with steroids in your system)
Hi Tracey and thank you for replying so fast! Yes, maybe I should go direct to my neurologist, although I haven’t seen him since the day I was diagnosed 2 and a half years ago. They kind of said ‘yep, you’ve got MS, bye’.It’s only really been since the last 3 relapses that I have emailed my nurse to tell her & shes mentioned drugs, so I got to see her again, for the first time in over a year, and now she is referring me to another neuro. I will have to find another option as the stress and worry cant be doing me any good! Thanks for your help and for your hug, you’re very sweet. It really does help, even having the word hug and knowing someone else has had the same frustrations! Thank you xxxxxxxxx
I foumd it took longer with oral steroids for them to work. Normally on the day after I finished the course I would start to see improvements. How is it today hon? I am on avonax weekly injections that seem to suit me very well. It depends what deals your hospital has done with drug companies as to which therapys you will be offered. We only get coproxone, betaferon and avonax where I am. If none of those suit then people are sometimes refered to another hospital which offers different meds. Best thing I did starting injections many years ago. I have been on beterferon but my skin started to breakdown because of the frequency of injections so I swapped to the weekly ones which are fine so far.
Thanks Lollypop, good to hear someone finds it takes a bit longer. I just wish there was someone I could speak to about the science behind it so I knew why they havent done anything yet. I hope my drug appointment comes up soon, thanks for your opinions/personal experience. I have pretty much no fear of the injections now, everyone says it’s a piece of cake, so that’s good. It does sound to me to be quite trial and error to see what suits the individual. When you say your skin ‘broke down’, do you mean wouldn’t heal from the injection sites? Thanks E xxxx
I have had steriods loads of times (30+ years MS)… weaning dose oral, ordinary oral and IV - I get the horrible taste with all of them! Mints help - so do any strongly flavoured boiled sweets - I like rhubard and custard personally! With one relapse I had to have an internal catheter fitted - so the district nurse arranged for social services to send in carers… at the time they came 4 times a day! As I have gone up and down with relapses I have altered their frequency -its usually not a problem - just a phone call to our central access team - on one occasion I had to get a GP to confirm that I was in relapse, it was all done over the phone - currently 2 per week to help with shower as my balance is still rubbish. I have tried DMDs - but it turns out that I am allergic to betainterferon so I have had to give up injections. My neuro is trying to get me on Tysbari but my PCT had the ruling that you have to take betainterferons for a minimum of a year before they would pay for it … the longest I managed was 4 months on Avonex before both legs had swollen so badly I couldn’t walk - and I felt really yuck! Actually I feel better and walking better etc now I have stopped treatment! Waiting for new NHS system to bed down locally to see if he can bend the “rules” with new GP commissioning group. I must admit I am feeling so good at present I am not sure I want to try anything else.
Carol, I’m so sorry to hear about the rubbish time you’ve had. I reALLY Hope they can get you on Tysabri and it actually works. You know afer yiou’ve finished oral steroids? well, i was given Omeprazole to take with them for the acid, but as i took the last steroids on tues, i also stopped taking omeprazole then too as the nurse said i didnt need to take them anymore. i now have the worst sore lumpy throat, it feels bruised outside and like i cant swallow inside. is this cos of the acid from the steroids? do you always getthis? how long does the swollen throat feeling last? i know its sometimes bad but i googled it and keep finding stuff about oral thrush and infections. is that really anything to worry about?? thanks for any heklp you can give me and sorry for typos xxxx
Re: steroids, I know they stay in your system for up to three months but can someone please reassure me that these side effects won’t last three months?!!! I’m going to go insane. Roughly how long to people find their admirer effects/side effects last after they have finished taking the steroids? More like a few days, a week or a month? Need to see some light at the end of the tunnel. Thanks xx
I was advised to take the omeprazole for 2 weeks after i finished my last lot of oral steroids. I have had steroids now three times for three different relapses. I began to feel better 1-2 weeks after finishing them.
Hope you soon see some improvement-it will happen,just hang on in there
Thank you Cathy. Think I’ll try and contact a nurse and see what they say about continuing omeprazole. Xx