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.

[Snugglepie]

Gee Karry. You've described how i feel almost perfectly. I don't believe the soreness even to touch my shoulders is agony. It feels like it should be deeply purple bruising from being bashed bye a sumo wrestler gone hypo.
My neck is stiff and sore, i cant focus my eyes at times, the drunken speech, and walking, the aches in my arms and legs that werent this bad before i had the treatment.
Man i wish id had a bit of warning that this could happen. Ive been so worried that this is going to be the way im to be from now on.
I just HAD to get out of the house today. We went to do a bit of shopping (which i usually really enjoy) I had to use my walker that i haven't used for over 5 years. I only got it after i took a major overdose of prescription meds and alcohol ending up in a coma and after regaining consciousness and regaining eventually, the use of my legs, i needed the walker then for balance, but that all improved and the walker has been in the back shed for the over 5 years and i was hopping to never need it again.
Im raving on, but thats my brain that isnt functioning properly either.  Another round of Methylpred???  Id have to think VERY seriously about going through this again.
Im going to contact my MS support worker and suggest that he contacts others to get soem kind of a fact sheet on the after effects taht a persaon MIGHT get so that people are more informed and not waking up thinking that they've been poisoned or the MS has taken a turn for the worst because of the infusion.
Im going to bed and its only just after 7.30pm, m eyes arent focusing properly anymore, im just too tired, at least i hope thats the reason.

[karryon55]

Hi Cathie, sorry it's hit you so hard. I noticed after my Rituximab & Methylpred. IVs I was worse also but it has settled later this week. I had the Vertigo, poor speech, confusion, drunk walking, shakiness, moodiness, feeling down, fatigue & a variety of my usual problems but worse also. It made me get hot & clammy as well. I think things upset your body but eventually it will settle down.

I know I've started to feel much better in the last few days & believe me I was worried it was all making me worse. I wouldn't worry at this stage because the short term side effects of the high dosage Methylpred can be pretty horrid but in the long run it should hopefully make the symptoms you had prior settle down.

My thoughts are with you. Rest up & take it easy. I would give it a week at least before you know what benefits you will see in the long run. I hope this helps a little. Take Care.

[Snugglepie]

Today 1st day post infusion and i woke up feeling like crap. Tired, lethargic, off balance, confused, vague, you name it  all double what it normally is.
Anyone have any ideas of any possible longer lasting side effects? I had no idea what to expect, even the hospital staff, who've never had any dealings with this knew what to advise me.
Doctor just said to take it easy for a few days, give it time and go to hospital if overly concerned over the weekend.
Not a lot of good going there though as they're not wiser regarding this than i am.
Any advice or ideas or your experiences would be greatly appreciated.
Cheers
Cathie

[Snugglepie]

Yep got insomnia last night but hopieng tonight will be cool.
Im tired and looking forward to getting into my own bed even though all ive done is lie around on the hospital bed all arvo, im dying to crawl in to my bed now.
Day 2 over and only day 3 to go.
Ive even got my won room at the hosp now for tomorrow as well, then they can scrub my name off the wall and put the machine away for a long time i hope.
Cant wait for tomorrow treatment to be over and to be once again cannula free.
Life without a cannula, my dreams for tonight i think :)

[Snugglepie]

Day 2 over and done. Another long  5 hours plus at the hospital but all good now im home and about to go to bed and prepare for my last day tomorrow.
YAY i get the cannula out and i'll be able to dream dreams that dont involve cannulas and beeping machines.
Cant wait for tomorrow to be over but not long to go now.
Fingers crossed its all ok tomorrow and i get my life and my arm back :)

[Snugglepie]

Thanks Alex. Its just nice to hear of others experiences that are so similar to mine.
The way you mentioned the tiredness and how others are always tired, i get that from my husband. He even lists the things he's done to justify why he's got to be more tired than i am. :)
And memory problems??? Not me...much haha  He even tried to tell me that i had some early form of dementia a while back.
Oh dear give me patience?? I can laugh at it sometimes but its so good to hear that you have had the same treatment.
My 91 year old mum is worried because i live a similar style of life to her and im only 50.
Great to hear from you and thanks for the support.
Day 2 over and done with and today the machine was mucking up, setting off the alarm every few minutes to start with so that slowed everything down.
Turned out to be another 5 hour stay then my temp went up and the nurse was very conserned.
I went ot he loo and ran cold water over my wrists and it miraculousy went down a bit for a while but i made good my escape while she was concerned about the sugar reading going up with the promise that if i felt anything weird at all during the night id go straight back.
Im sure when i get into my own bed with my book and relax my life with return to its normal tranquil state and i might even sleep better tonight.
Fingers crossed tomorrow the last day goes smoothly and i might even get home for dinner.
One oclock start tomorrow arv so hopefully all goes well and the bloody machine doesnt get temperamental again.
Then i get this cannula out of my arm and im free to bend my arm in comfort and let my fingertips heal from all the sugar tests.
Goodnight and thanks again for the chat

[tingletingle]

Hi Cathie,
Well, congrats on surviving day one! I hope the poor nurse who inserted the first canula incorrectly is feeling worse than you today. I guess you can only laugh through gritted teeth eh.

Yes, I think staying close to people who actually have MS is the key to staying sane! Well people just don't understand. Don't bother telling them that you're a bit tired, or suffer from short term memory problems because they'll chew your ear off about how tired they are!!! Oh, yes, they can't remember stuff either. Oh brother!!

Anyway, I'm a fellow aussie from Victoria who only occassionaly visits this site now as I'm a two year veteran and am starting to get the hang of MS finally. So here's to you resting up, taking things easy for a while and feeling the love from the forum, your beautiful dogs, and don't forget dear hubby.

Blessings
Alex

[Snugglepie]

Thanks Karry. Had a false start already.
I had to have a blood test this morning and the hospital had organized it for the first pick up to be marked URGENT so they'd get on to it asap, then the pathologist that was taking the blood informs that that despite the earliest pick up, it doesn't arrive at the lab until 1 this arvo at the earliest!!
I was supposed to be in the hospital at 1 but now have to wait for a phone call.  
Just got to sit and wait patiently.....but that word isnt in my nature. :)
Cheers
Cathie

[Snugglepie]

Thanks for your thoughts. I hope that if the infusion is suitable to you, its a good experience with a quick, long lasting positive outcome.
It must be so frustrating not to have a diagnosis one way or the other.
Thinking of you, keep in touch as to the outcome of all of this wont you?

[karryon55]

Hi Cathie, YAY you've had the first one!!!!!  I bet you are relieved. Have they left the cannula in for the next one?

I lost all my veins around 6 years ago & had been having PICC lines or if they couldn't get that I had a Central line. I've been on so many IV drugs since a young age & it took 4 hours to get my last PICC line so they said I had to see the cardiologist before it was removed. The cardiologist put a PORT in my chest by threading it from the existing PICC line as I had nothing left to use.

It's great now I have that as there have been emergency situations where they couldn't get any acces. Now I've always got my port & don't have to worry about them not getting access.

Let me know how it goes with today's infusion.
Take Care, Karry.

[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

[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

[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

[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.

[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.

[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

[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]

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

[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]

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

[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.

[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!!!

[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

[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.