Steroids

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Steroids

Postby LoveActually » Fri May 28, 2010 2:27 pm

Yesterday I had my neuro check up and he thinks I'm in a relapse. This is my first relapse since being diagnosed. They ordered a MRI asap and after they review the results of that they want me to start on steroids. I would normally say "no way!" and just tough it out but this is a vision thing so I know I can't mess around when my eyesight is at stake.

So lay it on me my fellow MS'ers, what am I in for? They prescribed me the oral steroids but I've heard that the IV kind is easier to handle. After they review my MRI I'll probably request the change to IV steroids. I've heard to definitely bring candy to kill the metal taste in my mouth and I also know all about the bloating and retaining water crap. Anything else I should know?

Thanks!
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby LR1234 » Fri May 28, 2010 2:41 pm

Hey Love,
I am sorry to hear you are in a relapse. I am also in a never ending relapse:(

My vision is effected at the moment along with having vertigo/balance issues.
(jumpy vision)

I have chosen not to take the steroids but everytime this vertigo seems to be going and I feel almost normal it returns again. (Its been 7 weeks)
If after it eases off it returns again I might do the steroids.

I have had oral steroids and IV. They taste disgusting!!
I don't know which ones were easier to handle. I hate being in hospital so the IV ones were more traumatic for me and I ended up taking the oral ones after anyway.

Good luck with it all, I am sure they will work for you as they did for me x
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Postby ssmme » Fri May 28, 2010 3:02 pm

My neuro prescribes 3 days of IV steroids called Solumedrol, then follows it with an oral tapering off with a prednisolone dose pack. This is standard procedure with my neuro if any of his patients are in an exacerbation.

Take extra calcium since the calcium gets drawn from your bones with either type of steroids.

I wish you a speedy recovery.

Marcia
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Postby SandyK » Fri May 28, 2010 5:43 pm

I preferred the IV drip to the pills. I never stayed in a hospital for it. One thing for me with Prednisone is that I felt sad when I would take them. I would cry at the littlest things. It's funny now, but while you're in the middle of it everything seems too much.
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Postby msgator » Fri May 28, 2010 6:10 pm

Hi Love,
sorry to hear about your eyes. I had two episodes of diploplia (double vision) they were both resolved with fairly low level courses of oral steroids. (40 mg taper, if I recall correctly)

I have also done 2 courses of Solumedrol with an oral taper. A nurse came to my home, put the IV line in, started the first drip and then you do the saline flush, heparin flush and hook the next bag in the next day. I preferred the bottles that you could just stick in your pocket to having the bag and pole which force you to stay on one floor while the IV goes in.

For me, steroids work and the side effects are minor. My first night I couldn't sleep on the IV, the second time I got the moon face. I hated not being able to wash my hair. But I always feel so much better afterward that those inconveniences are just that, incovenient.

Definitely take lots of calcium while you are on them because steroids rob your body of calcium and can lead to osteoporosis later on in life. If you are prone to mood swings anyway make sure someone keeps an eye on you in case there are emotional issues.

I always prefer starting with the orals first. But that is just me.

Good luck,

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Optic Neuritis and Steroids

Postby Shayk » Fri May 28, 2010 6:38 pm

Hi there

I've never had steroids but thought you might be interested in this article from the Cleveland Clinic--if it's a case of optic neuritis.

Optic neuritis and risk of MS:Differential diagnosis and management

If it's ON, they recommend Solu-Medrol over oral steroids.
Intravenous methylprednisolone (Solu-Medrol) does not affect the long-term visual outcome, but it speeds visual recovery and reduces the risk of MS.

Surprisingly, oral prednisone seems to increase the risk of recurrent optic
neuritis and is therefore contraindicated.

All the best

Sharon
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Postby sofia » Sat May 29, 2010 1:19 am

With my first ON I was refered to the eye clinic at the hospital. The doc there did not reconmend steroids. According to him, or my understanding of what he was saying is: With ON it is an attac on the optic nerve itself, and the optic nerve is the only central nerve that you can actually see from the outside of the body, which is also why you can feel the pain when it is under attack. It is the demyeling it self that is causing the problem.
With other attacks or symptoms you can be experiencing it is not due to demylination it self, but it is often due to swelling around the place under attac, swelling around the plack that is forming. The cortisone doesn't do anything for the demylining, but it is reducing the swelling, that is putting preassure on nerves, and is in that way easing the symptoms.

Other times with ON I have seen neuro, he perscribes steroids. When I ask him about what the eye specialist said, he is not disagreeing, but he says: ON is an MS relaps, and treatment protocol for MS relapses is steroids, it is the only treatment avaliable.

I have never taken steroids for ON issues, I hate that drug. The first few times I tolerated it fairly well, but the side effects have been increasing every time. I am so full of water, moonface, so high it is unbelivable, I get sick with it, dizzy, once I got massive big spots all over my back. Absolute horrible medication. It is a bit easier with the iv,then the pills, but it is quite horrendus. But I suppose we all react differently to it.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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don't take the tablets the first time

Postby hwebb » Sat May 29, 2010 4:31 am

I would strongly recommend not taking oral steroids the first time. My first steroid dose was IV...and I suffered anaphylactic shock with the first 5mL infused. Basically, I became unconscious, and my feet twitched when I was out. I was discharged from the day-centre, then an hour or so later my head became extremely tight. I'm not sure if my brain swelled, of my cranial veins....but I've never felt such tightness in my head before. All my MS symptoms exacerbated (temporarily lost my memory, sense of direction, hands numb/painful, legs numb/painful).

I was extremely glad it was an IV infusion, under medical supervision....so they pulled it out of my arm quickly. I hate to think what could've happened if I swallowed a full dose in a pill.

A week later I took an IV infusion of a different steriod...this one was tolerated well by me. Moral of the story...try a single drop of the dose...it's safer than swallowing a whole pill.
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Postby LR1234 » Sat May 29, 2010 4:47 am

If we are mentioning the downside of the steroids, I have to day it made me slightly suicidal!! (well the orals ones did the first time round) I have never been a depressed type person and if something gets me down I don't dwell on it but make plans of what and how I am going to deal with it.

For some reason, when on the first round of oral steroids I just wasn't myself and I felt depression for the first time. I would just warn your friends and family that you might not be yourself for a while and to watch out for you xx
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MS type? Steroid benefit

Postby Trent » Sun May 30, 2010 4:37 am

I've been dx since the mid '80's, but have not been told what sort. I've presumed it is PPMS as it has been a gradual downhill struggle. MRI's were not commonly available at the beginning, in the late '70's.

About 2002 a neuro offered me an MRI, but there didn't seem any advantage so I declined. He also offered steroids, either IV in hospital for a week, or oral. Again I declined. He must have put a doseage in my notes because a year or so later I suddenly lost the use of my legs. A w/e phone call to a doctor on call produced a prescription for oral steroids - a week / 6 hourly of presidnole (sp?) at what seemed a very high dose - I think it was 500mg. I know I queried it with the pharmacy. After 2 (two) tablets I was back to 'normal'.

My question is - does this 'once only' attack suggest PPMS or RRMS? The resulting info might have a bearing on the benefits of CCSVI liberation.

I am considering trying to get another prescription of the same as I no longer have strength in my legs, but this has been gradual, not sudden like before, so may not react in the same way. I have difficulty getting in/out of the passenger seat of the car, and my wife's back is preventing her from hauling me out. I haven't been anywhere except the garden since Christmas. I do have an appointment booked for a scan and, hopefully, treatment in the early autumn in Scotland, but I have to get there first.

Any views welcome.
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Postby LoveActually » Sun May 30, 2010 7:46 am

Thank you all for the excellent advice. The weird thing is that when I saw my Ophthamologist a few months ago they said my eyes looked great! And when I had a VEP, no issues there either. I've had the blurred vision for a while but told the doc at my appointment that it is worsening. It's blurrier and lasting longer. This brought me to the conclusion that it's a lesion causing all this trouble. Is that possible?

I also brought up a few more new symptoms since my last visit 3 months prior. 1. Numb upper lip that moved towards my cheek (this is the only symptom that lasted more than 24 hours). 2. Warm sensation then numbness on left shoulder. 3. Static feeling through legs and butt after exercise. I also showed them that my left eye droops and they did a little neurological test with facial movements and determined that other areas on the left side of my face are weakened. Lovely!

I asked them right out, "what's the reason for the steroids?" and they said that I'm in a relapse and since my vision is worsening they want to try and stop it. Hopefully it'll get rid of this ringing/buzzing in my ears that I've had for 9 months straight now. It'll be nice to know what it's like to hear normally again. =)
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Algis » Sun May 30, 2010 8:18 am

Please ask to check for cataracts; I have been 85%/90% blind because of steroids build up cataracts in my eyes... Docs had said it was ON - But finally a specialist (ophthalmologist with knowledge of the problem) found it; I had surgery and now I have the vision of a 15 y.o. kid...


Please please check for cataracts if you had steroids !!!

Be well and cheers!!
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Postby Lo » Sun May 30, 2010 6:40 pm

I had one course of IV SoluMedrol which was VERY effective at reducing numbness, tingling, weakness and leg pain during a relapse. I was given a prescription of Famotidine to keep stomach acid at bay, which worked. The IV was prescribed for 5 days followed by prednisone. I lasted two days on the IV due to a heart palpitations. Have had my heart checked since and all is well, but it sure scared me. My nuero said she would add something to the SoluMedrol next time to keep my heart rate down. Otherwise, I was full of energy and did not sleep much. I would do it again as it REALLY eased my walking difficulties. However, next time, I will take off of work and only take them if my mobility is impaired.
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Dx RRMS January 20, 2010
Started Copaxone May 6, 2010
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Re: Steroids

Postby Wendigo » Mon May 31, 2010 7:32 pm

LoveActually wrote:Yesterday I had my neuro check up and he thinks I'm in a relapse. This is my first relapse since being diagnosed. They ordered a MRI asap and after they review the results of that they want me to start on steroids. I would normally say "no way!" and just tough it out but this is a vision thing so I know I can't mess around when my eyesight is at stake.

So lay it on me my fellow MS'ers, what am I in for? They prescribed me the oral steroids but I've heard that the IV kind is easier to handle. After they review my MRI I'll probably request the change to IV steroids. I've heard to definitely bring candy to kill the metal taste in my mouth and I also know all about the bloating and retaining water crap. Anything else I should know?

Thanks!


My first neurologist gave me a trial of oral prednisone to see how it would be tolerated. My insurance didn't cover IV therapy and her opinion was that it wasn't the optimal way to give prednisone but she did it for many patients in a similar insurance position. My fear of the oral prednisone trial was the only problem I had.

With different insurance and an actual attack I had a home health nurse service come daily to my home to infuse the Solu-Medrol for about an hour each day for three days. It was actually much less expensive than if I'd gone into the infusion clinic at the local hospital. During the swine flu outbreak, the last place I wanted to be going with a knocked out immune system was anywhere near a hospital. I do remember feeling "wired" but had no problems with sleep and no other side effects. The line/port had to be left in an arm vein for the three days but it was tolerable. From what I understood the prednisone is supposed to stop the attack from progressing.
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Re: Steroids

Postby NHE » Tue Jun 01, 2010 12:57 am

The corticosteroids given to MS patients during an attack induce apoptosis in the white blood cells. In effect, it causes them to commit suicide and die off. This reduces inflammation and can shorten the duration of the attack.

At the time of my diagnosis, I had numbness and neuropathic pain in my leg followed closely by an episode of optic neuritis. I was given IV steroids and these helped my vision clear up in a few days. However, my vision remained sensitive to heat for about a year or so afterwards. Hot days, I was living in an area with 115°F summers, or a hot shower would cause my vision to temporarily cloud over. It's been several years now and fortunately my vision is no longer heat sensitive.

NHE
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