Let's talk steroids

[Jesmcd2]

My 1st infusion was this past Memorial Day wkend. When my neorolgost called and told me that l needed to have it done in the emergency rm, or ck myself in the hospital l chose the emergency room. LOL (l live in a small town and my neorolgost is 2 hrs away)

He told me l had optic neuritis. Which l had no clue or heard of. Thank God for my support group. Another person in my support group was having exubations at the same time. She gave me some hints, like take lemon drops. But l couldn't find any so l got orange tic tacs. Big HUGH mistake it was horrible hahaha. Told me that there would be a surge of energy, thinking yeah clean house. And about taking the prednisone afterwards.

What she forgot to tell me was the starvation feeling afterwards. I was eating 3 bowls of cereal and still hungry lol or the "roid-rage" now don't get me wrong l have a temper it just takes a bit to get there. My bf bless his heart said l would just jump down his throat on a dime. You feel it coming on to and there's nothing you can do about it.

What about you all? 1st time? Last time? Hints? Tips?

[CalfeeChick CommunityAmbassador]

Was just diagnosed, am hoping for infusion treatments.. what medication did they use? And how often? How are you doing now?

#CalfeeChick. Lynn

[CalfeeChick CommunityAmbassador]

Jesmcd2, I'm waiting for next appt and hope to use tysabri infusions. was diagnosed on 8-3-16. They tried heavy dosage of steroid and didn't get any results except my arthritis was much better Lynn

#CalfeeChick

[Jesmcd2 CommunityAmbassador in reply to CalfeeChick]

Hi CalfeeChick lm sorry l dont know anything about the trysabri treatments. My Dr. Put me on copaxone 40mg 3x wk right away for now. I'm sorry

Let me know how it goes though

[Royjr]

My last steroid treatment was home infusion for four days. I was diagnosed in 2003 and I think I've had 6-7 steroid treatments during this time period. When I started I was using an IV pole to hold the medicine and now they use this little medicine ball that you can place in your pocket and move around without pulling that IV pole. The nurse come out to install the IV line and the first dose and everyday I place a new medicine device on the IV line myself. The only thing that get to me is a metallic taste while I'm receiving the medicine. Nothing a lemon drop can't handle😀 They say that it might effect my sleep, but for me I don't have any problem sleeping

[Jesmcd2 CommunityAmbassador in reply to Royjr]

Hi Royjr my last one was in the wkend of July 4th. I got the visiting nurse then, and the IV pole. Sounds like the medicine ball is way more convenient. Did they have you on the prednisone afterwards? The 2nd time they didn't and it wasn't pretty Told my doc that and he made a note. This MS is really messing with my head. (Pun intended)

[Royjr]

No.. I only did Prednisone one time since 2003. I'm glad I wasn't on this type of steroids. The side effects concerns me and I would worry about taking it. But that's me and I know people that's been on this steroids for months at a time.

[Jesmcd2 CommunityAmbassador]

After the 3 days of infusions he put me on the prednisone and slowly weaned me off. Alot of Dr's arnt recommending that anymore from what l understand. I do know l felt really out of it the 2nd time without the wean off. This stuff is still so new to me ugh lol

[Hidden]

I was given a 5 day high dose IV steroid treatment after I was diagnosed with MS. During 1 year I went from being fit to being in a wheelchair. Treatment was done in a hospital ward. On the first day of treatment I was able to lift a foot off the ground for the first time in months. After the treatment I was put on a 1 month taper with oral prednisone. Despite my local doctors' concern over giving me high dose steroid treatment, the 5 day infusion therapy went without a hitch. I also didn't have any problems with the taper either. I didn't seem to experience any obvious mood problems, just an increased hunger initially. I did need to test for blood sugars and was self injecting insulin as needed while at home after treatment. The blood sugar levels declined with the taper and I didn't need any insulin at all after a couple of months. The steroid treatment worked wonders. From being in a wheelchair I progressed to a walker and now a cane. Increasingly I use it less and less for walking short distances. I can safely walk about my house unassisted at all, which is very important since I live alone and need to be able to look after my self without any help. While I keep a transfer bench in the tub as a fall back in case of weakness in the shower, I have not had any problems for over 9 months. It has been about 18 months since the steroid treatment and my "recovery" seems to be on a par with patients following stem cell therapy in terms of degree of function recovery and timing. The IV steroid treatment turned my life around and my neurologist is extremely happy with my progress. I hope all goes well with your treatment.

[Jesmcd2 CommunityAmbassador in reply to Hidden]

Hi Hidden l am so happy to hear how well your infusions went! They really do do the trick don't they? It took care of my optic neuritis my 1st day was wonderful! But to come as far as you did is truly amazing Keep walking!

[Sukie427 in reply to Hidden]

I'm really happy that steroid therapy worked for you! I have only had it for treatment of relapses and it didn't work.

[Elle61]

my 1st experience with optic neuritis I did pill form prednisone ,60,40,20,10 for a month.... talk about "roid rage". You must keep a sense of humor when your doing steriods ! I like that it actually works to stop an attack. Watch out for your bones though.

[Jesmcd2 CommunityAmbassador in reply to Elle61]

Ouch that sounds awful to me. Before we (dr.and l) found out that l could just do it every day at the er for 3 days, he was going to have me take 500mg of predsodon for 3 days or some ungodly amount then taper off. I was so glad to find the other way.

Good point about the bones! Definitely need more calcium in your diet with the "roids"

Sorry to hear about your sugar levels. Makes me wonder why they never cked mine. But so glad that everything turned out well for you

[Sukie427]

I had the usual 3-day infusions of solumedrol for my first 2 relapses. A nurse would come to the house and since my veins explode and roll, he put in a heparin lock for the 3 days. Each infusion lasted about 1 hr. It made me nuts. I was always hot and sweating (and I am never hot and never sweat). I had a mild spike in hunger, but the worst was the temper. I am petty quick-tempered anyway, but I was positively coming off the walls. Fortunately, it didn''t last long and my poor husband just kept saying "Yes, dear" but it was horrible. By the time of my 3rd relapse, the solumedrol just didn't work. So the dr. put me on Acthar Gel which has some of but not as strong side effects and it works for me.

[Jesmcd2 CommunityAmbassador]

Sukie427 yeah that temper thing just hits you out of the blue. My bf looked at me like l had lost my mind. The 2nd infusion l had at home which was better than going to the hospital er for 3 days. Also l got a ton of fruit cause l knew l was going to be hungry. What is acthar gel and how does that work?

[Sukie427 in reply to Jesmcd2]

First, let me say that if the solumedrol infusions work for you, your doctor won't recommend the Acthar gel. The Acthar Gel is a 5 ml vial of a gel. You keep it refrigerated until about 30 min. before you use it. You use 1 ml/day for 5 days, injectable either SubQ or IM. You keep it out for 30 min so that it becomes liquid and injectable. If you are a first time user, the drug manufacturer will send a nurse out to instruct you. My understanding is that it stimulates your adrenal glands to make their own corticosteroids. Everyone is different, of course, but when I use the Acthar it stops the relapse dead in its tracks, usually within 2-3 days. Then I have to go back to PT to try and regain my strength. The Acthar is ridiculously expensive---I think around $40k per 5/ml vial. My commercial insurance always covered it for a $50 co-pay. It comes overnight with all the needles and full instructions, and as I said, the manufacturer contacts you and will send out a nurse to instruct you if needed. If your insurance won't cover it, the drug manufacturer (Mallinkrodt Pharmaeuticals) has a patient assistance program that helps defray the cost. That is, unless you are on a govt.-assisted plan such as Medicare Part D. The Social Security Act prohibits a patient on a govt.-assisted prescription plan such as Part D from getting help from the drug manufacturer. I am working through my Congressional representative and a petition on Change.org to fix this glitch. Because of it, I was stuck with a $6k co-pay the last time I needed it. Too many more of those and my husband and I will be homeless and penniless in about 2 yrs.

[Jesmcd2 CommunityAmbassador]

Sukie427 it's truly unbelievable how much drug manufacturer's can charge for something actually works for ppl. Especially when you have no choice in the matter. Alot of ppl are on Social Security and /or Medicare and it's definitely not right that they can't get the help they need. I truly wish you the best of luck