Have just finished a 5 day course of steroids prescribed for inflammation in my spine. Had an MRI scan which revealed what the doctors think is a new MS lesion in my spine. The pain was so bad at one stage i was literally climbing the walls in agony. My doctor prescribed steroids to reduce the inflammation and bring my pain back under control. After just a few hours of taking my first dose i felt as though i was dying. Had severe vomiting and the worst headache i have ever had in my life. Went back to see my doctor after the weekend on day 3 of taking the steroids and was sent to hospital for an emergency CAT scan as she was concerned about the severity of my headache which had got worse while taking the steroids.
At A & E i was admitted for an overnight stay, observation and the CAT scan and several other tests. Thankfully scan was clear and they put the extreme pain down to the high strength of the steroids basically knocking me for six!! Have since been discharged from hospital and given Naproxen for 10 days, Amittriptyline for 10 days, Co- codamol for 10 days and Pregablin which i have been taking since April.
Sorry for such a long winded post, but am interested to see if anyone has had this steroid and felt as ill i did taking it?
I was diagnosed with RRMS in July and think this latest attack was a new relapse.
i have had them thrice over 9 years-the first 2 times because i didnt know any better!
the recent was a year ago and i thought its been a while so i will give them a chance.
mistake! they made me worse yet again. i will only take them again if my breathing is affected. i have choking episodes which arent pleasant but i eventually still breathe!
with ms nothing applies to all-we are all unique, just like everyone else
sounds really awful, i have never wanted to take them,because of the side effects,and they only quicken up recovery,anyway.
i have had some very nasty relapses too.some where i have been in bed for months.but i have always said no to them.they scare me to death.i have been prescribed them but never taken them,the last bad relapse i had the dr rang my ms nurse and she told the dr to prescribe them, i said NO thanks,and the dr said i dont blame you .
The steroids can limit longer term damage. Inflammation causes the relapse, if you start the steroids soon enough the inflammation can be halted. The longer the inflammation continues the more likely the nerves will be damaged and this damage can then cause a longer term worsening of symptoms. The steroids will help shorten the relapse but the most important thing is they help reduce the inflammation. This is helped if the steroids are started within a couple of days of the relapse starting. Longer than a week and the inflammation is probably at its worst and the steroids won’t be as effective. The side effects can be a bit rough but they pass .
My doctors (GP and neuro) have told me exactly the opposite of what Ginsozzled says. They have both been very clear that steroids reduce the action of your immune system so they reduce the length of attacks. But they only get you to your end point quicker, they do not change what that end point will be. I would assume the doctors know what they are talking about on this.
your last sentence made me laugh but i guess that was not ur intention! drs are relying on us trusting them but in my experience they cant even agree within their own circles so what chance have we got?!
i have read on here that folk are upset when their gp and even neuro when they say that they dont know/arent sure but for me that would suggest i would trust them because honesty wins with me…
TBH, my GP and my (fifth) neurologist are both excellent and I would trust anything they told me. That’s partly because both of them will only say things they are sure are true - if they don’t know, they’ll tell me they don’t. For steroids, I don’t think you’d find a doctor who said anything different - but, like always, I could be wrong about that.
I can only go on what my neurologist has told me over the years and definitely when I have had relapses over the years after 2 days of worsening symptoms my neuro tells me to go to see duty neuro at a and e who runs blood test to check for possible underlying infection. If no infection and neuro agrees it is a relapse I can be started on iv steroids. Over last 15 years have had steroids possibly 4 maybe 5 times and each time within 2 treatments the symptoms have stopped getting worse. Recovery has taken a week or 2 but by the time I have had my 5th treatment my legs have started to behave better and the numbness has started to disappear. While on the steroids everything tastes like metal, my brain turns to mush and I am decidedly hyper but it does pass. I genuinely feel that after 22 years of this disease if I hadn’t taken steroids promptly when advised to do so I wouldn’t still be walking around and being 90% independant (albeit slower and wobblier)
Can I just throw in my experience with a high dose of Steriods. I was prescribed 500 ml daily for a week ( I think that was the dose I know it was exceptionally high as an emergency doctor didn’t believe the dose till I showed him the empty bottle).
The improvement in my condition was almost instant and I felt great. The day after I finished the prescription I crashed, I started having massive full body spasms and I could barely stand up, it took a week to get my spasms under control and nine months till I got back to work. I have been told that years ago after a high dose of Steriods people were weaned off them. I do not know if stopping the Steroids dead caused my subsequent problems but it would take an awful lot of persuasion to get me to take such a high dose again.
Sorry to be a know-it-all on this, but steroids do not change the end point of a relapse. Ginsozzled, if you ask your neuro, he/she will tell you this. Having steroids early in the relapse means you get better as quickly as possible, that’s all.
For Janhhh, your body stops producing steroids if you are taking them over a period which is longer than a few days. If you have high dose steroids for a few days, your body does not stop producing them. Some people react badly to high dose steroids - weaning you off them would not have made a difference to this. You might not have reacted to a lower dose over a longer period - you would have to have been weaned off these over a much longer period.
If your neuro really does believe this, he/she is in a very small minority. Here’s what the website we are on at the moment has to say about the issue, in the section on treatment of relapses:
"The way that steroids work in MS is not fully understood, but we expect them to:
reduce the inflammation
shorten the duration of the relapse
speed up recovery from the relapse
Steroids don’t affect the outcome of a relapse – any difficulty or disability that might result from a relapse."
i have read this thread with interest and my conclusion is that nobody really knows 100% what steroids can do for everyone its so variable-just like we all are! so if we find a gp-neuro-pysio-ot-social worker-anybody that listens to us then they will be our biggest support just by listening. this thread just proves to me how difficult this ms malarkey is and why i ‘bang on’ about keeping mind strong when body is failing!
todays tip-find something to smile about! for me it has been baby in the avon book wearing a brill bear suit!
