99% Diagnosed - Methylprednisolone taste

New diagnosis and before diagnosis
1

Hi All

I hope you don’t mind a bit of a story, I’m new here and wanted to share and ask a few questions.

I had been having things like trigeminal neuralgia and spates of back issues and all over pain since around 2010 at the age of 30 and was diagnosed (now known to be misdiagnosed) with fibromyalgia in 2015, no brain scan was done etc which I now know was a huge mistake according to my neurologists.

Anyway, moving on to 2023, I started having migraines which I had never had before then started with a constant headache and dizzyness, and for many many years just sheer exhaustion all day, the doctors tried to get me an MRI but the hospital wouldn’t accept me as general GPs can’t request them apparently…

So in September I took myself to A & E and was sent to the Amsdec ward. After seeing three doctors, all of which wanted to send me home with paracetamol, one finally listened and I was sent for an MRi 3 days later after staying on the ward. Next day I am told I have abnormalities…but I am released awaiting a Neuro appointment.

I requested a copy of the scans and report and sent them to my sister who, as luck would have it is a specialist in Brain cancer so works under a consultant and with radiologists, the second report from her radiologist confirmed the same as the original but also some other things the NHS missed. I called the NHS to find out when I could get a neuro appt and was told there is a 30 WEEK wait.

My family were kind enough to pay for me to see the consultant privately, after some tests and all the reports and scans he had he said he can “Confirm” MS which is what we thought all along, then sods law, the very next day I get called by the NHS who have a neuro appointment the following day… I went to this and saw a different neurologist who confirmed what the first had. I do have to wait for a lumber puncture and some kind of electro mapping of my nerves to get 100% diagnosis.

In the meantime I was prescribed 500mg of methylprednisolone once a day for 5 days as a shock treatment and pregabalin.

I have just taken my first 5x 100mg steroids, my god why do they not warn you on the taste, nearly gagged and 2.5hra later that nasty bitter poisonous taste is still there at the back of my throat. Any tips for the next 4 days as I am not sure I can stand that taste.

Secondly, I wanted to ask about the Lumber puncture, I have no idea when or where this will be done as my hospital said they don’t do them anymore since the doctor left and they don’t know which hospital do them now…(Great!). I want to know what to expect when I have this, as someone with a massive fear of needles after having one hit bone as a child, I am not relishing this or the pain it may cause. Can you share experiences with me, good or bad, just so I can prepare.

Thanks for reading this, believe it or not this is a cut down version. :smirk:

2

I drink my water first, don’t swollow it though immediately just hold it in my mouth. Then put the copper coin tasting pills in and swollow the lot. Mouthwash, mints gun for awhile, can take an hour before the taste has prtty much gone. I now take every pill the same way, fluids first :slight_smile:

Had a trrainee do my first one, she couldn’t pierce my lumbar and told the locum she thought she was hitting bone. Asked if I’d had back surgery. I hadn’t but as I did test drive vehicles and some involved very bumbpy tracks it’s possible I’d chipped my spine. The locum didn’t mess about and jabbed it in. Must have scratched a nerve as my leg kicked out.

Seond one I was a bit nervous so ask GP if I could get something to calm my nerves and I got some Diazepam. Maybe the pills helped or second Lumbar puncture was so much nicer. If you’re concerned/nervous maybe ask if you can get something to calm your nerves before hand.

Mine gave me 2x5mg pills and told me to talk 1 and have the other if required…I just took them both to be safe

1 Like
3

With the lumbar puncture my first was fine albeit painful as I was on the larger side and I think that affected it. The second wasn’t so bad the junior dr struggled and I also did the ninja kick :joy: The worst was the headache after as soon as I got up it was horrendous and was for a week after. If you can plan it around some time off just incase it would be handy. If you get up and the headache is bad ask if you can lay down for longer. My first I had all night to let it settle but my second I had 45mins- I was last on the list and the nurse wanted out. :woman_facepalming:t2: Ask about a sedative and explain your past experience the thing to remember is it all passes in the end and if it’s going to be beneficial for your treatment it’s well worth doing.

1 Like
4

Like everyone, I was more than slightly nervous of having an LP, but I needn’t have worried, for me the procedure was painless. However, the headache from hell was another story, but at least I had that at home in my own bed.

Soon afterwards, I was given a confirmed diagnosis of MS.

I wish you well,

Ben

1 Like
5

My LP was fine. I was scared because a relative had had a bad experience back in the 1940s and the horror stories were part of family legend. My perfectly OK experience will not become part of family legend because that’s just not how these things work, is it? :grinning:

BTW try Murray Mints. Any mint will help, but they seem particularly good for countering the metallic taste.

1 Like
6

Thanks all, I already have a headache from hell, thought it had eased earlier after my first heavy dose of steroids but think that was wishful thinking. Did have another fall down the stairs earlier, twice in 3 days, luckily I always slip backwards but does do the neck back and headache much good. Have the dreaded “insomnia” from the steroids but I only usually sleep for 3 or 4 hours anyway So not much change there.

Look forward to more experiences, it all helps.

I don’t know why but when I was told it was likely MS it didn’t really effect me, seemed to effect my family and those around me a lot more who cant understand why I’m really not bothered at all, does that sound strange, I have suffered for many many years with depression so maybe that’s why I just don’t care or maybe its the “getting some answers” after 13 years of knowing something was wrong and suspecting MS for many years…

7

Are you doing the ‘talking a mile a minute’ thing. I am reliably informed that so jabber away like a crazy woman when on high-dose steroids. The house gets very neat and tidy, though. What else is there to do on those sleepless steroid nights but clean?

Seriously though, everything you describe about steroids is perfectly normal. It isn’t just you. I hope that is reassuring rather than making you feel worse.

They’re heavy-duty drugs, no question, but when you need to slam damaging inflammation into reverse in a hurry, nothing else comes close. I have never regretted taking them, but have sometimes regretted being too pig-headed to start as soon as I should have. No one likes taking them, but they do get the job done. I hope that you feel the benefits very soon.

1 Like
8

I took them this morning after seeing advice on here bundled in jam and swallowed down with fresh orange, made a world of difference, only a slight tang after, much more pleasing.

I am basically shut away in my room with greyhounds for company and have been managing to take the 2 of them on short walks just to get out the house with my 13 year-old helping. Feel absolutely knackered when back and head always feels worse. I did drop off to sleep for 2 hours this morning at 11.30 so that’s a little bit of sleep at least.

I am being weird off of amytriptyaline and been prescribed pregabalin, I though taking the two together would knock me out but didn’t touch me last night. Fingers crossed for tonight.

1 Like
9

I never forget the yucky metallic taste of Methylprednisolone, you also need to take Lansoprazole to prevent an upset tummy.
Lumbar Puncture is fine, they test the sample of spinal fluid if it has high T-Cells, an indicator of multiple sclerosis; I think it’s a good idea to pop a painkiller or two before you have the procedure done.
It’s the bone marrow biopsy where they drill into your hip that’s probably more horrid, although personally I found it quite tickling.

1 Like
10

I was fine leading upto my Diagnosis. I’d pretty much diagnosed myself as having MS leading upto it so if I’d been told it wasn’t MS but something else that likely would have phased me haha.

Oh yeah the steriods play havoc on my sleep.

Night 1 = Insomina
Night 2 = sleep like a log
Night 3 = Insomina
Night 4 = sleep like a log
Night 5 = Insomina

1 Like
11

Found it weird I slept ok ish last night in my second night, got 2 hrs, woke up for an hour then got another 2 hrs, then got up. So an excellent night so to speak for me. I will look forwards to another all nighter on netflix tonight then :grin:

12

Did anyone else get severe pain after the last dose of a 5 day course of methylprednisolone? I can not walk, find it hard to even move on my bed, all from the waist down, hips, thighs, knees and feet in agony. Feel like I’ve I done a 200 mile bike ride over cobbled streets.

13

I’m no expert but I would defo get it checked out to rule out other causes especially if this is a new side effect.

1 Like
14

I agree. Nothing like that ever happened to me after a course of steroids.