Forum

Steroids &PPMS.

Methylprednisolone 500mg 5 days supply will these once again get me back on my feet as there is much controversy if they in fact have any benefit at all for this type of MS.

I’m going to inflict a diary on you lovely peeps over the next few days of any changes for better or worst the steriods have on me. This will encourage me to be a little more self aware, g.p has warned to watch my mood & if I become Ill as they are suppressants. Raise any questions, maybe worth a try for others!!! So hope I don’t bore,annoy or bring up any extermination feelings for me, I’m hoping after this dose I in Miranda’s words can restart my galloping. So bear with,bear with…

Pauline xx

I’m looking forward to your diary Pauline, I have only had these once and I crashed badly afterwards so wait with interest to read about your experience, before and after.

Hope they work well for you.

Jan x

Janhhh what do you mean? I had a course in early November and it felt like the last 3 years had never been. I lost symptoms I’d had for 2 years and yet in December my god I’ve been ill. I’m waiting to start proper treatment…they are a little unsure so going to give me DMDs…is this what you mean ?

Thanks you are a helpful bunch …and I shall look forward to your diary Polly. For me it was an awesome experience…just a little difficult to drift off to sleep at night which was so exciting as I normally can’t even read a sentance of a book. I don’t remember the last time I was awake longer than my husband lol

Gilly xx

Hi Gilly

In the very beginning, many years ago, they tried me with steroids, unfortunately apart from making me too hyper to sleep, they done diddly squat.

Pauline, I look forward to your diary.

Pam x

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Gilly I’ve sent you a pm so as not to clog up Pauline’s Diary

Jan x

Looking forward to the diary Pauline. Won’t bore us at all!

Pat xx (Giddy up!!!)

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Looking forward to your diary Pauline…I’m one of the many with progressive MS that have never been offered steroids, but I do seem to read increasingly of people trying them.

I really hope they help you Pauline…all extermites crossed very firmly for you!

Good luck,

Nina x

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Hi, I hope you feel better soon Pauline, Try to rest and not worry about the house work. I shove all the mess under the sofa. Michelle xx

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Hope they do the trick Pauline

XX Don

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Pauline I’m looking forward to your diary. My Neuro has said he’ll give steroids to his ppms patients if they “relapse” which he believes they do, with sudden worsening of symptoms. Like so many I’m not keen on taking extra drugs but I’d be very keen to know if you find them helpful.

This forum is here for us to share our experiences and support each other and that information is significant to all of us as we just don’t know what our future holds. Good luck with it.

Cath x

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I had these after diagnosed but they kept me awake for 24hr and diahorrea for 2 days went back to neuro nothing since good luck.

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So much for the diary!! No internet for the first 2 days, b.t box fell apart with the help of the dogs. Repaired yesterday.

Day 1 no change. Apart from nasty taste from tabs.

Day 2 nausea and awake every 2hrs for short time. Very short tempered during the day.hot legs. Should have gone to hospital appt with partner I refused to wake up and I think I wasn’t nice to him!! Not answering my calls.

Day 3 not as many spasms, very little pain in lower back, but had headache all day. Night sweats. Managed to shower myself unassisted. Mood is swinging from one extreme to other. Fatigue feels worst. My right leg feels stiffer but lighter to lift. Had g.p appt but was kept waiting too long got agitated and left, slept on & off rest of the day.

Day 4 fatigue is bad didn’t want to get out of bed, mood isn’t good, leave me alone to sleep! Had dentist appt 11am followed by physio, wanted to cancel but glad to say I got there, both on the same street 10 min drive away. Slept from 2-5pm mind is telling me I can do more, put the laundry in, had a shower daughter with me good job as lost my footing in the shower and was doing the splits!! Now lay back in bed.

Last dose tomorrow, I do feel a little more capable, but the fatigue seems to be stopping me being fluent in completing small tasks.

Pauline x

Hope you get some relief from your MS when they are finished.

Don

So sorry it’s such a nightmare for you Pauline…I really hope it will be worth it in the end and you will see some improvement.

take care,

Nina x

Really hoping that improvement is just around the corner for you.

((((Hugs))))

Pam x

Hey Pauline,

How long are you on the steroids for? I got bombarded ŵith them at the start and they kinda gave me a little lift but very much like you they affected my mood and didn’t do enough good to verify using them. I really wish you luck with them, I look forward to seeing more of your diary.

Polly xxx

Hi, well yesterday wasn’t the best, I developed a swollen face & neck which were very tender to touch, I slept pretty much most of the day away.(last day of tabs).

Today (Friday) amazing day, I can stand,walk and shop enjoyably!, got up for 7.30am. I’ve laundered,cleaned and delegated well today, my balance appears much better,drop foot not as bad. Lost energy around 1.30pm and didn’t get much of it back after a break. My mood is still not the best but at least I’m not internalising my frustrations, feels like I’ve taken the truth drug hehe… I hope tomorrow’s energy levels and wellness are the same as today’s.

I feel good!!!

Pauline x

Brilliant, i’m so glad you are starting to feel better, I hope it continues, try not to do too much, I tell my husband that even on a better day its as if i have a low mobile phone battery…you feel great and then you are absolutely wiped out with nothing left. My mood is up and down but i think its my age!

Michelle x

Have the benefits been maintained since Friday ?

Hello Pauline.

I have nothing but admiration. I’m too scared to take steroids.

Steve x