Steroids?

Everyday living
1

Hi

I’ve not been on for a while, I was diagnosed with relapsing remitting ms in august 2013 eventually and am in a a horrible relapse at the moment :frowning: Lost feeling and tingling from my ribs down to my feet and both hands with a new one for me that lovely tight band around my chest (ms hug) constantly :frowning: I’m 11 days in.neuro gave me 500mg methylprednisolone once daily for 5 days which I finished saturday,nothing has changed does anyone know if this is normal? my own gp has started me on gabapentin 300mg and i’m on day 3 of these 1 three times daily today and still no relief.I’m gutted as I start a new job in March and I so want to get better.Last February I had my last relapse and had same symptoms as I have now but without the dreaded hug and it took 6 weeks to recover without steroids as I was undiagnosed then.I’m also on avonex now 7 weeks in so doesnt suppose that will be helping yet? Has anyone any info or experiance of the steroids or gabapentin? Should they have worked by now? thanks in advance sorry for typing errors hands are a bit numb! :slight_smile:

2

Hi

Sorry you’re feeling so pants, that all sounds rubbish. To be honest, it’s a bit tricky to say how quickly steroids will take effect,and we can all react a bit differently. However, it’s only a day after finishing them & I’d say that’s a bit soon to really start seeing the benefits.I’d give it time, and make sure you get plenty of rest. As for the Gabapentin, if they still don’t seem tobe working I’d speak to your GP as there are other drugs you could try instead like Pregabalin or Amitriptylene.

Sorry I can’t be any more help. But I’d really encourage you to rest & try not to stress or worry (doing something like mindfuless meditation could be good).

Take care

Dan

3

Thankyou so much for replying :slight_smile: Yes your right I should rest and I’m trying not to stress :? I’m just so active normally I’m never still and I have a 3 year old so it’s so frustrating not being able to do things like I normally would.Your probably right about the steroids I just expected it to be some kind of wonder drug I think! Thanks again for replying Dan I appreciate it :slight_smile:

Take care

Cheryl

4

Hi mrsg33

The dosage of methylpred is a normal one. The aim is to hit any inflammation quite hard - but any inflammation will take a little while to reduce - so you will still have the symptoms for a few days yet. Probably, you will wake up one morning felling better than you did the day before, and think “Oh, they worked”. Of course, the effect is continuous rather than a step change.

Just remember that the steroids will not repair any damage done in the relapse, just make recovery quicker.

Your Gabapentin dose is actually quite low. Three or four times what you are on would be the limit - depending on who you listen to (but the BNF says four times).

Geoff

5

Thanks Geoff, I’m hoping to feel a difference soon, I start a new job in March Don’t want a black mark before I even start! Yea I read the bnf dosage on the gabapentin and I am on a low dose but I’m so scared of any side affects that could affect my driving.Thanks so much for replying I’m still trying to get my head around this ms malarky!

Cheryl

6

MRSg33 I will probably come across as a nutjob but hey ho. I was diagnosed in 2000, Hitler’s birthday to be precise, April 20th, which is why I remember it so well I guess.

I haven’t been on here for the better part of a decade because I don’t like to dwell on it so much. But every now and then I read something which sets me off researching like today. An old friend who’s a microbiologist sent me an email which references stuff happening in America this week. It’s about a bug called C. perfringens type B which they think may be implicated in causing MS. Anyway that set me off sniffing out info again just to see if there’s something in it. Anyway I came on to see if the MS society had any info regarding 4-integrin antibodies, and more important if there are substances -naturally occurring which can inhibit it, AND, big ‘and’ that one, what are the possible knock on effects of stopping your T cells from being able to use it?

Sorry for the complicated gobbledy gook but I kind of needed to explain why I was here. Ok so I’m looking for the info and I come across this thread and just come in for a peek. Silly me.

I have to say I hate steroids. Really. I had them once for 10 days in a diminishing dose after my first major event, utterly ineffective.I guess it’s good that nowadays they are restricted to specific uses like anaphylactic shock, some neuro conditions and a few others. Why you might ask? Well there are lots of side effects, some of them severe with prolonged usage. When I started in pharmacy we were still handing them out for arthritic conditions, muscular strains and sports injuries in the shape of phenylbutazone. But I digress.

It is now widely known that MS is an inflammatory condition. The mechanisms of inflammation are pretty well known. Steroids are anti-inflammatory which is why they are used, obvious eh? So why stop them now?

You’ve finished your methylpred so now you aren’t taking an anti-inflam agent anymore. So what will happen is you’ll get a slow build up of prostaglandins again and you’ll get aches and pains or more dysaesthesia and maybe another major relapse [minor day to day stuff they don’t call relapses for some reason] . The length of time will vary person to person.

Well there are loads of other anti-inflammatory substances and drugs about. Let that sink in for a second. Non steroidal anti-inflammatories [NSAIDs] work too.

Most Docs could write what they know about MS, or its symptoms, on a postage stamp, leaving plenty of room for bible quotes. Most neurologists don’t seem to know what we experience and they kind of lose interest if you are without major relapse for any decent period of time.

After the hell of the first couple of years [I’m mainly a pain sufferer now although I do get the occasional dysaesthesia –not common now at all thank God. I prefer pain] I had researched and researched and arrived at the conclusion that the only thing I could do was to mitigate as many of the symptoms as possible. So I went back to basics. What was happening in demyelination? Loss of myelin. So what can I do to help my body repair the damage? Take substances which aid in the production of cells and cell membranes. Briefly, I started taking starflower oil and lecithin –and still do. Look, these are like building blocks for cells and your body needs extra of these things if your myelin is getting chomped by T cells. Now in addition to this I looked for some sort of pain relief for the peculiar pains we get that no one else seems to understand. The usual paracetamol and codeine and opiates of various kinds don’t work well or at all and besides you aren’t supposed to take them long term. On a visit to my in-laws about 10 years ago I had a real bad pain event. I was in pieces. Truly at that time the only thing that I’d discovered which knocks it on the head quickly is alcohol, how sustainable is that? My mother in law bless her, offered the usual which I declined. Then she came back with a bottle of tablets that her mother [deceased] had used for arthritis. Mefenamic acid 250mg caps. By now these were about 4 years out of date. Being a pharmacist though I knew there was a good chance that the active ingredient was likely still viable. So I took two with a half glass of milk. Within about half an hour I started to feel better. I carried on taking them for the 3 days I was there and kept getting better by the day. When I went back to Scotland I badgered my GP for some and then I spent the next 6 years on them. I didn’t take them 3 times a day as I could have, I only took one a day in the morning unless I was starting to feel prodromal or had pains starting up. Then I would increase to the max for a few days then dial it back down again.

I’m back in England now and many GPs have tried to stop them but I won’t hear of it. My quality of life is more important than any of their counter arguments. Providing you take anti-inflams with food or milk –religiously- they are unlikely to cause you problems. Don’t try this though if you’ve had a stomach ulcer or you are on anticoagulants.

If you want to try it out you can do so cheaply and safely. Pop into Aldi or wherever and buy a couple of packets of ibuprofen 200mg tabs. Start off with taking 400mg 3 times a day i.e. every 8hrs. I would say morning, afternoon and night. You have nothing to lose and everything to gain. They are fairly potent anti-inflams and readily available.

MS 101 as the Americans say. MS is an inflammatory condition so take anti-inflammatories!

Maybe at a later date I can tell you what I take now. But give it a try, there are no interactions with that crap gabapentin [opiate derivative but not quite]. You will know in a week. So you need to put them in the trolley two or three times ‘cos they won’t let you buy more than 2 packs at once.

7

Hi

Just off on a quick tangent - have you told the DVLA you have MS? You’re legally required to tell them, but you should be OK to carry on driving. They’ll just give you a 3 year licence instead.

Dan

8

Hi Me again,

Thankyou for your reply.I work in pharmacy too but as a checking technician, just not dealt in such high doses of methylprednisolone let alone take them.The mefenemic acid is interesting indeed.Do you use any of the dmd’s? I am going to try the ibuprofen it is a good nsaid and I don’t know why I haven’t tried already I guess I just thought not potent enough. So you have had ms for 14 years? May I ask how you are affected as in do you still work etc? I’m sorry to be personal it’s just this disease is so unique to everyone that info I can find I find helpful.

Thanks alot

Cheryl

9

Hi Dan

Yea I sent off the forms to DVLA and am awaiting their response, I’m obviously refraining from driving at the moment it just wouldn’t be safe, I really miss it actually :frowning: Do you still drive Dan?

10

Yep, I drive. In fact, I actually learnt long after I was diagnosed. I drive an automatic & use hand controls - a steering ball meaning I can steer with one hand, then a push/pull lever that’s connected directly to the pedals, which I use with the other hand to brake & accelerate. That’s how I learnt to drive, and it’s a doddle to do. I had an assessment done where they checked I’d be OK to drive & I tried out a few different types of hand controls, and these ones were the ones I found easiest.

By the way, don’t expect to hear anything soon from the DVLA. They’re notoriously slow to respond, and will usually take a few months before they get back to you. I think 9 months was the longest I had to wait. I’m sure they’ve only got one part-time old dear at the DVLA to process all the medical stuff from everybody : )

11

Cheryl

The meth pred thing is relatively recent. Seems a high dose but It’s common nowadays. Probably more effective than my one time with the highish start dose then diminishing to zip, of prednisolone. But my opinion is that it needs follow up treatment with NSAIDs.

As to the MS I’m fitter than most men my age for sure. Still, I started off pretty damned fit, I don’t need a stick but can have fun going upstairs sometimes, but never down. I do archery and take my dogs for long walks –but there are times I don’t want to because I don’t feel right or have leg pains. I’ve trained myself to pick up my toes so that I trip very much less than I did at the start. . I even started running again recently.

The first 2-3 years were the worst but I was flying blind most of the time experimenting to see what gave me the best results, oh so anecdotal because it’s yourself you’re assessing. Worse still I was an independent consultant then, doing the usual 80 odd hours a week. As soon as I was able I secured a job in the NHS with half the hours or less –and half the pay or less, but money isn’t actually a big deal [wisdom of the ages]. As I said not much has altered in the last ten years or so once I latched on to the NSAIDs. Doctors have lost interest in me and I’ve never seen an MS nurse, they didn’t have them when I started. When I heard about them I thought, how quaint. My GP just stuck my mefenamic acid on re-prescription. They gave me lanzoperazole for a while but I stopped that myself, I didn’t need it -probably a good job given the bad press of late. Same with statins but I didn’t get on with any of the 3 I tried, they caused joint pain and since you have to take them all the time there didn’t seem to be any advantage. Whenever I see a new GP they are to put it mildly, surprised that I have MS.

I would defy anyone who did not know me, to guess that I had MS. I am way better now than I was at the start. The fatigue hits still occasionally but I just listen to my body and rest. I held down a senior manager’s job for 8 years in the NHS, it was a little easier for me because I was my own boss to a large extent, so if I needed a power nap I took one. My secretary would field calls and keep the bears from my door. I took redundancy as soon as it was available 3 years ago [thanks Dave]. But that aside, a standard 37.5 hour week should be doable if you supress those inflammatory agents. I’m convinced it’s what has kept me from being a wreck. The lecithin and GLA are more a back up/repair kit than anything but the key is those NSAIDs They will, I think, help you get back on top of things. They won’t cure you but I’m convinced they reduce the major attacks to almost zip. It will sound cliche but you either have MS or it has you. I prefer the former and forget about it for as long as I can.

A weird but true way of getting relief is to go closer to the equator. Yeah I know I said it’s weird. It isn’t the heat so forget that. Four years ago I went skiing for the first time ever, in Flaine, France. I did not know whether I’d come through that or not. We spent most of the time at 8000 feet plus and minus 14c when outside. This test was a biggy. I’d got splendid relief from symptoms every year for several weeks at a time by holidaying abroad in the warm places. I not only had only healthy tiredness from the skiing I got the wellbeing feeling and symptom relief I used to associate with warmer climates. I’m not kidding I go from steady and careful to ultra athletic. I can play beach tennis for hours at a time, I swim for hours, I snorkel and walk miles. The effect starts within 24 hours of arrival and lasts for about a week or so after I get back. It doesn’t seem to matter whether it is Spain or Egypt, Dom Rep, Mexico or Turkey –or Flaine. I have racked my brains for years trying to come up with a hypothesis as to why. I do know that fewer people report MS the closer you get to the equator. I also know that if I’d lived in the south of France for example, I’d probably never have gone to see the doc, so few are my symptoms!

12

Hi Me_Again,

With reference to you feeling better on holiday, I vaguely remember there was a post on here ages ago, I think it was Woblyboy’s, who said how much better he felt whilst in a plane/after being in one, something to do with air pressure/cabin pressure I think. Could that be a possibility? Presumably you fly to each of your destinations? I wonder if there’s anything in that?

Interesting thread by the way!

13

Truthfully I don’t know Hunny. It has puzzled me forever.

I thought heat, but the skiing holiday in Flaine trumps that.

Then magnetic variances but the magnetic strength is greater isome parts of Britain than almost anywhere else and yet some of my holiday destinations have been in areas with a high magnetic strength too.

Then atmospheric pressure. The thing about flying is interesting, they pressurise to about 8000 feet I think. That might set things right on the outbound journey. Ok. But on return from Egypt I think it was, about 5 years ago I actually got my first MS leg pains as I walked up the thingy that connects the aircraft to the terminal. [As no doubt you know, certain pain types associated with MS are unlike any other] . I can tell you that was a disappointment. For years the relief had lasted more than a week after return. Anyway the air pressure does change towards the equeator because the planet is spinning faster. So that isn’t a write off to me [maybe just me being weird]

Then humidity which varies widely too. However I have holidayed and received the blessed ‘relief/rejuvenation’ in both humid and arid places -Egypt and Dominican Republic are examples of each.

Gravity itself is another since that gets less the closer you get to the equator as well.

My first holidays after I got it were just blessed relief. I seem to remember that the first time it took maybe 48 hours before I really noticed it. The joy I felt at feeling ‘normal’ again was overwhelming. I didn’t want to come home, in fact it’s possible that my dread of return influenced the return of the problems -but I don’t think so, there’s something else at work here.

My first neurologist I sacked. He was near retirement and I guess he wasn’t really into MS [can’t blame him since really it is an immunologist’s job in my humble opinion]. At this point I hadn’t had a major event, just lots of symptoms which didn’t point to anything. Anyway I came back from this holiday to Lanzarote I think it was, and he examined me about a month later. I told him about the incredible relief I felt being there and the return to pain and dysaesthesia after my return.

He said it was stress and the holiday had releived it ! I said WHAT? You’re saying that my symptoms are caused by stress? All my fuses popped then. I said I’ll tell you what stress is sunbeam, stress is going on holiday when you’re feeling shitty, going on holiday with your wife and twin 3 year old sons, with your mother, with your mother and father in law who don’t actually hit it off with your mother, AND a thirteen year old pubescent daughter who hates your wife for taking you away from her mum. THAT’s stress asshole! And this too. Listening to someone who claims to be a neurologist telling me about stress is STRESSFUL! I nearly popped him, I did, hadn’t been for my wife ooh that would have gone down well I bet.

About 6 months later I lost my right arm, my right shoulder and the right side of my neck [for four full months actually, you can imagine I was thinking progressive at that point]. Yep, I just woke up one morning and that was it. Well scary. When they had something that they could prod, when they had something that did not respond to a patella hammer they were happy, and happy to diagnose. The second MRI was just a formality, they knew where the lesion was exactly.

14

Thanks for sharing your story me-again, sorry to go off topic but I find what you say very interesting, I already take gla, and hemp seed oil and was interested to read you take a nsaids regularly. Would you take even if you had no pain as a presentative and would asprin or iburpofen be better. Also on the topic re the bacteria and gut any info would be greatly recieved. I read alot but dont necessarily understand all the functions of differnt cells etc so very good to read in your words. Zoe

15

Zoe.

The one I talked about [mefenemic acid] is supposed just to have an effective duration of about 8 hours. What I discovered was that it is actually longer, much longer [in me, maybe not others but I’d be surprised if it wasn’t]. On days when I woke up and had no specific pains then I took one 500mg enteric coated tablet in the morning. Unless there were issues later, that would be it until the next day. I could go for about 4 days of not taking them before the levels of inflammatory agents built up -then I’d regret stopping.

If I was having a bad time OR symptoms started to appear I would take another [8hours after first] and keep going 8 hourly until they seemed to subside.

Coming down I would first knock off the mid afternoon tab. Then the evening one. [for 8 hours or so you are inert and your metabolism is in neutral, this includes inflammatory responses being minimised]

As to tablets types. I will just say that you should probably steer clear of aspirin, not because it is bad or ineffective but because in its pharmaceutical form it has too harsh an effect on most people if used for more than a couple of days, and sometimes less. On the pos side for aspirin it is a far more effective pain killer, antipyretic [reduces fever] and anti-inflammatory than paracetamol ever will or could be. If you take aspirin make sure you take the dispersible type not the ones that stay like a lump if you drop them in water. Maybe at some later date we could get on to alternative aspirin but not now I think. More important at the moment to get relief.

Ibuprofen. Good all round NSAID [non steroidal anti-inflammatory] I am unaware as to whether you may get all day relief the same way as I do with the mefenemic acid. Still there are some serious advantages to ibuprofen.

First they are available as non prescription drugs. Second their dosage spectrum is wide. i.e you can take between 1 and 4, 200mg tablets up to 3 times daily and safely. That gives you massive flexibility to control your pain. Different for dysaesthesia [lack of sensation]. Both are caused by the same inflammatory response of the body BUT you are more aware of pain being controlled than you would be of slight differences in sensation.

If you want to take ibuprofen and you have loss of sensation or altered sensation but not pain I would recommend that you try to set a standard before you do. If you have one hand which no longer feels that it belongs to you then take a pound coin, close your eyes and feel the sensation of it in your ‘bad’ hand, then switch it to your good hand. Try to nail into your mind the difference between the two. When I do that with my right hand [the one affected so long ago] the coin feel furry. Yeah I know, weird. Anyway you are trying to set a standard of sensation before you start the course of tablets.

My instinct says start in the middle dose range. This was the standard dose we use to give folks 20 plus years ago before they got the big tablets. I would suggest 400mg i.e. 2x200mg tablets with half a pint of milk or immediately before food –and I mean as you’re sitting down. Do that morning, mid afternoon and half an hour before bed. Try to keep the gaps even.

Don’t expect a response immediately. If you have been suffering for a while your inflammatory levels will be high and it will take time to nudge them down, but you should [with pain] get a discernable difference within 48 hours. Not sure regarding sensation. In the sensation case I would hold off doing my pound coin test again for maybe another two days. Then check. Try to be objective. Try not to be impatient. You are in this for the long haul not a quick fix.

If you get tangible relief from pain or you think a noticeable difference in sensation, you may wish to take it up with your medics either MS nurse or GP. It is your disease not theirs. They will try to keep you off these NSAIDs [yet they’re quite happy to prescribe a host of other drugs which can have bad side effects] You can insist. Your quality of life is more important than vague worries about what they may or may not do to you. If you lack the persistence to prevail then you can go back to taking ibuprofen that you buy. It’s just that mefenemic acid works for me, you should have at least a shot of trying it for yourself. I won’t go into my theory as to why it is good at this.

You have everything to gain and very little to lose.

16

I probably need to emphasise. This is my opinion not verified fact. However I am pretty damned sure that supressing inflammatory agents like prostaglandins produced by either cox1 or cox2 inhibitors is key to having a life -I mean it as I said it. I had no life before I discovered the effect, it was just misery of varying intensity.

The big difference between the two is gastric tolerance but the way round that has always been to take with food or milk to protect your stomach. Older NSAIDs like the mefenemic acid I’v ementioned, are cox 1 and cox2 inhibitors the newer types are specific or near specific to cox2.

Suffice to say if you try older ones and get relief you are showing that inflammatory agents are responsible for some of the symptoms and you can supress them, life gets a little brighter when you minimise at least one set of MS issues.

A stab in the dark would be to say that switching to NSAIDs immediately after steroid treatment could well minimise permanent damage. I have only anecdotal evidence for that and it is as follows.

When I had my first major, verifiable, event -the loss of sensation down my right arm including hand, right neck, right shoulder- it took nearly 4 months for any sensory input to come back. I postulate that if I had taken NSAIDs after completion of my -apparently ineffective- steroid course, I might have reduced the inflammation further and quicker than my body was able to do on its own. Much of that time in my life is a blur of sensory loss slowly replaced by pain as the prime symptom but I recall trying aspirin at one point for immediate pain and inflammation relief -well it does it, but not sustainably. Caused nose bleeds so I had to quit. I took paracetamol which has a small amount of anti-inflam ability, but on max dose of that for extended periods does no good to your liver.

But I have never recovered more than about 70% of sensation from that first event. Ever since then I have had NSAIDs available. Subsequent attacks have been less severe and always supported by NSAIDs. I have about three events a year now and they often only last 2-3 days.

I still get intermittant ‘annoyances’ which are too low level to be called events, be interesting to compare some of them with others.

Anyone who has a go at the NSAIDs please let me know if you have any relief.