Infusion over a couple of days?

[Snugglepie]

Ive just been told after speaking to my neurologist and him phoning my general doctor, that i have to go into hospital for a couple of hours over a 2, 3, or 4 days to have an infusion of something.
I think that prednizone or something similar sounding was mentioned.
Does anyone have any idea what the doctors are talking about or possible side effects?
The general doctor told me that i need to stay in the hospital because my blood pressure and sugar levels can be mucked up by this medication.
Any help would be greatly appreciated.
I was kind of in a state of shock when i help these conversations, and there was no time for questions or concerns.

[SarahL2491]

prednisone is a steroid, which is a powerful anti-inflammatory medication and yes, if its running for that length of time, can affect other organs.  

You haven't given us much background on what your symptoms are that prompted this move.  Could you share?  I think we have some Aussie members here who are probably more familiar with the protocol in your country.  Perhaps they will chime in with some better advice.

Welcome to our corner
Sarah

[Quixotic1]

I read over a couple of your earlier posts to find out that you were diagnosed many years ago, but that only recently you were having some severe symptoms.  The procedure that you are describing is typical when one has an MS exacerbation (relapse, attack).  It is an infusion of very high dose methylprednisolone (Solumedrol).  Typically, the dose is 1000mg given intravenously once  each day for 3 to 5 days.  The purpose of this mega dose to quash the inflammation in the brain felt to be causing the MS relapse.

It's usually given on an outpatient basis unless the patient has some problems that the steroid can create or make worse such as igh blood pressure or elevate blood sugar.  The steroids can play with your mood, usually making you euphoric or kind of energized.  Or it can make one feel irritable, flushed, hungry,  the list goes on and on. It also can have very few side effects.  I rarely react badly to the infusions myself.

Others will be along to tell you of their experiences.  But, be assured that these infusions are considered Standard of Care.  They can stop a relase in its tracks or improve the symptoms immensely.

Quix

[tingletingle]

Hey Snugglepie,
You must be feeling quite crap with relapse so please make sure you listen to your body and try to rest and turn down the stress level if possible.

I've had both IV and oral methylprednisolone. The first time was two years when I developed MS. I was in hospital for 5 days and had a very slow infusion over 4 hours. It made me feel bloated and gave me insomnia, I also had a shocking headache but don't necessarily think it was from the drug.

In February I asked for an oral course and it pretty much gave me the same side effects.

The drug is proven to reduce inflammation and damage to your body so go ahead, I think it's all good. I was pleasantly surprised at the hospital food and the care was amazing.

Hope you feel better soon.

Blessings
Alex

[Snugglepie]

Thank you for the info, it helps a lot knowing what im in store for. :) Woudl be great to hear from others in Australia as well.
Cheers and thanks for your input
Cathie

[Snugglepie]

Thank you for your contact and information.
I seem to have hit an unusal spike in my MS that as you rightly pointed out Ive had for  long with very few problems really.
Ive been spoiled i guess.
I will apparently only be there for 2 - 3 hours so my husband found out while he was visiting the doctor this afternoon.
I wont even get to try the hospital food that always smells so appetizing when im there for appointments :)
Think of me tomorrow (Saturday here in Australia)

[Snugglepie]

Sorry, forgot to tell you that ive been diagnosed with MS for almost 28 years now with not very many overly unpleasant symptoms.
Guess its about my turn and its hitting fast and furious in this instance.

[Snugglepie]

I guess its just such a different treatment to what im used to. Ive been very fortunate and only needed to take oral medication, Tegretol and Baclofen to name a couple that my mucked up mind is recalling at this moment. The idea of needing to go to hospital for hours and be injected with something is, i guess something i didnt think would happen to me.
I guess the most important thing is the result and I know im still very lucky to have had the MS for as long as i have with no great problems.
Please dont think that im complaining, just looking for some information as i was totally unaware of what was goign to happen to me. All i got was the initial phone call from the neurologist who listened (almost) to what i had to tell him and then just said he'd contact my doctor.
All very straightforward to them, but it was a bit of a shock to me.

[karryon55]

I hope it all goes well for you. I can't really comment as I've has only 100mg of IV steroids at any time & oral steroids. The side effects for me are usually insomnia, mood swings, metallic taste, crying & it makes all your hormones go haywire including blood sugar. It does pass though. I must admit I think steroids are heaven for my pain ( Rheumatoid Arthritis ) & if it didn't cause harm long term I would love them more frequently.

I can only suggest take something to suck on like mints to help with the metallic taste in the mouth. I am in limboland & have just had 200mg IV Methylprednisolone or Sulomedrol & I only got insomnia for a night but again you will be having higher doses so I don't think I'm much help. I can send you my wishes from Oz & wish you the best.

Take Care,   karryon.

[kwarendorf]

Hi SP -

IVSM (Intravenous Solu-Medrol) was a gift for me. The relapse that lead to my diagnosis had me in a mess. I couldn't walk straight, when I had the energy to walk, was seeing double 24/7 etc., etc. After 5 days of IVSM I began to get my life back.

It's good stuff :-)

Kyle

[cubbiesfan918]

Hi Snuggle-

IVSM will increase your blood sugars; however, the benefit is that it will resolve your relapse rather quickly!

Good luck to you and best wishes!
CF

[TLC_31]

I’ve had two relapses since diagnosis that warranted a three-day course of Solu-Medrol (brand name for a steroid), about an hour each day, followed by a few days of a prednisone taper, just gradually smaller doses of a similar medicine in pill form. The infusion center was in the hospital complex, but I wasn’t checked in to the hospital or anything.

I didn’t care for the needle going into my vein and carrying it around for a couple of days, but yes that Solu-Medrol was good stuff! I’d love to use it more often, but unfortuately, I have to have a relapse in the first place to take it, and used too often it certainly could have long-term side effects. The mints or other hard candy is a great idea.

[Snugglepie]

Hey, thank you all for your info and the good wishes. Nice to hear from everyone especially karryon55 in Oz.
I went along this afternoon for my first treatment, but after the blood test,with my sodium level having dropped low again, they've put it off until Monday now when theres more staff and doctors available, just in case i have a bad reaction.
All that angst for nothing today and i'll go through *** all again on Monday now, providing the next blood test is ok after a fluid limit for the dangerously low sodium level.
Cheers to you all and take care
Cathie

[Cann1980]

Cathie,
I wish you well on Monday!
I has a 3 day bout in April for eye problems (on) and I was reading on the third day. I think I slept for 13 hrs in the spam of 4 days ... I crashed afternoon of day 4. But when I woke I was back to a normal I never knew existed!!! I was energetic... Full of life and rearing to go. :) I took a 10 day or so taper after of the prednisone. It was pretty rough on my system.
I am now going for day 3 of 5 today of another round. I slept a good 8 hrs last night!! Which is great and I feel great today. My problems are getting a bit better already so very hopeful here.
I am not doing a taper this time.  I asked to not have a taper this time and my neuro said it is not in his protocol anymore. I was very happy!! (My last time another doc did the orders)

So I am very happy this is available to you... There are some bumps in the way of side effects but the "normal" feeling that come for me is the best!!!

Feel free to message me Monday night if u have insomnia...  I might be up then too!!!
We oh yeah u r in oz I will be up bc it will be day here hahahah... I am in Canada!!!
:)

Let us know howls it goes!!!

[karryon55]

What a pain it got cancelled but best if you are having low sodium levels. On the positive side at least the hospital has more hands on deck during the week. I know my Rituximab can't be done on the weekend (I did have anaphylaxis originally) & I still do often have breathing problems with it.

I know most people have some side effects in the initial period but it hopefully will prove to be worth it in the long run.

Let me know how it's going. I will be thinking of you on Monday.

Take Care,   karry.

[Snugglepie]

Thanks Karry. I'll let you know.
Have to wait and see what the blood test reveals tomorrow morning and then wait for a phone call.
Very much up to the doc i guess.
I cant believe the amount of comments ive got from everyone. I really appreciate it.
Cheers to you and hope your treatment goes well.
let me know wont you?
Cathie

[Snugglepie]

Thank you for your caring comments.
Everyone on here is so helpful and caring, its lovely.
I'll post again tomorrow afternoon my time if i feel well enough, im still a ltitle wary of the infusion, but as so many of you have survived, im sure i will too. :)

[Snugglepie]

Thank you to everyone thats left a comment regarding this latest drama in my life.
I really do appreciate your caring attitudes and information.
I hope that things go well for all of you from now on too.
Take care
Cathie

[Lulu54]

Have you started the steroids yet?  I am pretty sure it will give you some relief. Thanks for sharing your experience with going so long without problems it is important to remember that MS never goes away and is always lurking and capable of striking without warning. Thanks again and feel better

[Snugglepie]

Im getting beside myself with anxiety here. I went for my blood test as requested at 9am this morning and was told to wait until i heard from them about going back to the hospital for the infusion.
I waited and waited, realizing that given the time it was taken and that i was told that the blood test samples werent sent (1st lot) till 10.00am, i figured that maybe about 12 or 1 would be a realistic time to expect to hear from the hospital.
NOTHING till about 2.20pm when i got a call from them telling me that it was too late to start now so they'd leave it until tomorrow.
NOW i have to be at the hospital at 1pm in the afternoon so i can have the whole morning worrying and wondering about the procedure.
I just hope that they dont cancel it again as im likely to tell them in no uncertain words to "forget about the whole thing".
Thanks for thinking of me Lulu

[karryon55]

You have to be kidding!!!!!! Actually not really any surprises with the health system in Oz. Please don't be anxious about it though.... IV Methylpred is not that bad in fact it can make you feel wonderful.

I know it's easy for me to say that as I'm not the one having it. I do know that every time I stress about things like this it makes me feel ill just due to stressing. Take a deep breath & if they call & cancel again then scream ******
Murder at them....grrrrrr. Sooooo sorry about all these delays.

Thinking of you for tomorrow. Karry.

[PastorDan]

Sorry about the headache you're being given by the system.  No consolation, I'm sure, to know that ours seems to be getting worse.

I've just sent a note to the MS guy I saw last week (at Cleveland Clinic ) to see if he thought IVSM could be valuable and/or appropriate for me, despite no Dx.  I'll be praying for you all meanwhile.

[kwarendorf]

Hi SP -

Try not to read or think too much about the ill effects of IVSM. Focus instead on the benefits. The procedure is about the same as getting blood drawn. They just leave the needle in a little longer, about an hour.

For me, the benefits kicked in almost right away. After the second session I almost felt like myself again :-)

Accentuate the positive :-)

Kyle

[Snugglepie]

Thanks for the encouragement.
Well yesterday Aus time, i had my first infusion and apart from a few other little mishaps that i really still cant get my head around, i got through it.
I ended up being at the hospital for a total of 5 hrs 15 mins, but i lived through it.
Would love to bump into the old loudly burping, constant nurse calling (they took his buzzer off him) guy who totaly gave me a headache and made me have to walk half way round the hospital to use a toilet because the one we were supposed to share, he'd left an unimaginable mess in that thankfully, the nurse didnt allow me to see.
Day 2 begins this afternoon. Fingers crossed.
Cheers for your thoughts Kyle
Cathie

[Snugglepie]

Hi Karry.
I lived through day 1 of treatment, was in the hospital for well over 5 hours, had a mis inserted cannula that pumped the steroid into my arm and had me looking like Popeye for a while and caused considerable discomfort and pain.
But i survived it all even though i was very happy and grateful to walk out of the hospital doors last night.
I knew the 2nd cannula was inserted properly (in the other non Popeye arm) and had the nurses worried faces looking more relaxed, when i smiled at them and said "yep this ones working, im getting the awful metallic taste in my mouth)...this was after 5 minutes of so of them standing around watching to see if my 2nd cannula had been inserted after a few mis goes and many bruises im sure.
Ive even got bruises on my fingers from the sugar test pricks. The procedure not the testers im referring to as pricks. :) lol.
Am i ready for day 2?? Not overly positive about it, but i lived thru my worst day visit to a hospital that I can remember, and im here to tell the story.
I wish some of you guys lived in Oz so that we could become friends with this experience in common to kick start the friendship.
I dont have any 'real life' freinds over here, mostly my own doing caused through mental health problems, and partly my own choice but at times like these its very lonely and even my two dogs (my best friends) got all depressed while i wasnt here yesterday and drove my husband crazy.
I got a lovely welcome home from them though, better than the attention i got from my hubby to tell the truth, but its nice to know that they (the dogs) love me as much as i think they do.
Cheers and thanks for the contant communications. My email freinds apart from one thats got training in the nursing industry, dont really understand. One is a total hypochondriac (heavens knows why i still write to her at all) and all she could do what tell me how sick she felt and at the end of the email asked how my little injection went. AAAAhhhhhhhhhggggg
Cathie