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Joined: Jul 28, 2005 Posts: 1268 Location: Sydney, Australia
Posted: Mon Sep 29, 2008 4:05 am Post subject:
robbie wrote:
I’m coming down real good now from prednisone, spasms are back to full strength now which I notice the most. When I think of how good I felt two weeks ago...
If you don't mind me asking, how long were you on at 60mg/day? How long on taper? and how long before you noticed the symptoms returning?
Reading the original article that got me interested in pulsed steroids, they had different cycles for different patients, as low as once every 10 days. They were also using much higher doses of IV steroids.
I just finished another pulse, of 3 days at 75mg/day. I left a 3 week window since the last pulse.
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Mon Sep 29, 2008 6:48 am Post subject:
Quote:
If you don't mind me asking, how long were you on at 60mg/day? How long on taper? and how long before you noticed the symptoms returning?
7 days at 60mg
3 days at 50mg
3 days at 40mg
3 days at 30mg
3 days at 20mg
3 days at 10mg
3 days at 5mg
i just finished and my symptoms are mostly back, the first two weeks were the best. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Joined: Jul 28, 2005 Posts: 1268 Location: Sydney, Australia
Posted: Mon Sep 29, 2008 7:34 am Post subject:
robbie wrote:
i just finished and my symptoms are mostly back, the first two weeks were the best.
So, if I am understanding, your symptoms started to return, during the taper? when you dropped below about 40mg?
When do you *think* you peaked on improvements? or did the improvements continue, until you started the taper, and then the symptoms started to return?
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Mon Sep 29, 2008 7:57 am Post subject:
your right cob it was about 30 mg that i could feel my old self but not as bad i still don't feel as bad. it is really hard to explain the way i felt.
Quote:
When do you *think* you peaked on improvements? or did the improvements continue, until you started the taper, and then the symptoms started to return?
after my double vision got better everything seemed to peak around day 5. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Mon Sep 29, 2008 9:25 am Post subject:
I went to see my neuro at day 9 of prednisone and although she could see how good I was feeling and how up I was she made sure I understood that this was not helping my ms at all other than dramatically reducing my spasticity which brings on the good feeling I was experiencing. She said she only gives it for exacerbations(my double vision) but knows how good it can make people feel. She said it won’t have the same affect if you take it all the time at a lower dose plus it can be very hard on you. I asked her about pulsing a higher dose maybe 3 or 4 times a year just to give me something to look forward to, so will see this is just a way to feel better it can do nothing to help the actual ms. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
I went to see my neuro at day 9 of prednisone and although she could see how good I was feeling and how up I was she made sure I understood that this was not helping my ms at all other than dramatically reducing my spasticity which brings on the good feeling I was experiencing. She said she only gives it for exacerbations(my double vision) but knows how good it can make people feel. She said it won’t have the same affect if you take it all the time at a lower dose plus it can be very hard on you. I asked her about pulsing a higher dose maybe 3 or 4 times a year just to give me something to look forward to, so will see this is just a way to feel better it can do nothing to help the actual ms.
One thing to remember about the steroids is that they can cause osteoporosis which is also no picnic. They also lose effectiveness after so many doses. The last time I took steroids (over 20 years ago) they did nothing for me, unlike when I first took them.
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Mon Sep 29, 2008 9:59 am Post subject:
to bad gwa , for anyone that is so down with their ms i just can't explain how good this was. i have taken it 3 times in the past and it has always worked to fix my eyes but this time i noticed it so much more than just my eyes, i guess cause i'm so much worse now.
back to reality. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Joined: Jul 28, 2005 Posts: 1268 Location: Sydney, Australia
Posted: Tue Sep 30, 2008 4:36 am Post subject:
robbie wrote:
...but not as bad i still don't feel as bad. it is really hard to explain the way i felt.
Are you saying, that at this point in time, you have ended up slightly better than before the steroid pulse?
robbie wrote:
She said it won’t have the same affect if you take it all the time at a lower dose plus it can be very hard on you.
Correct me if I am wrong, but I was thinking your interest in steroids was like mine, based on the research that found long term pulses in SPMS left some patients with highly reduced EDSS scores?
gwa wrote:
One thing to remember about the steroids is that they can cause osteoporosis which is also no picnic.
I went for around 10years misdiagnosed with CIDP, which has a first line treatment of oral prednisone. As such I have a long history of using them regularly. I found, from personal experience, that long term low dose was not effective for me, so I used a high short pulse for a relapse; with no taper.
I was also found to be suffering from bone thinning (ie heading towards osteoporosis). To counter this, i took regular calcium supplements. When i was on the prednisone (and calcium), I noticed that my urine was actually cloudy, and sometimes I even had shards of white solids in my urine; I was guessing the calcium.
I found out on line, that DHEA was suppose to allow lower effective doses of prednisone, so I tried it. I can not say I really noticed that i needed lower doses, but i did notice that while on DHEA and prednisone, my urine no longer appeared to be cloudy. I also much later found out that my compounder was producing DHEA for a study investigating this exact effect.
gwa wrote:
They also lose effectiveness after so many doses. The last time I took steroids (over 20 years ago) they did nothing for me, unlike when I first took them.
I also noticed this effect, but now that i have not been using them much regularly, I notice they are again having some noticeable effects. NB: I am using short term pulse steroids.
PS: On my last DEXA, I was found to be back in the normal range. I was using Fosamax for a while.
Joined: Jul 28, 2005 Posts: 1268 Location: Sydney, Australia
Posted: Sat Oct 04, 2008 9:59 pm Post subject:
So am I, But I have decided its going to be 3 weeks between pulses. So next week for me. I hope you notice some more benefits this time also.
How long have you left it between pulses? (ie what cycle length are you using?)
I think back a few months, and I think I have noticed an improvement that stayed. A few months ago, before I started the pulsed Prednisone, if I remained seated (or stationary) for some time, when I got up and started walking, I was VERY stiff. This was something that had recently re-appeared, and was starting to get worse.
Now, it may still be there, but to a MUCH lower extent. However, I think it has also slowly come and gone in the past.
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Sun Oct 05, 2008 10:12 am Post subject:
Quote:
ok i'm ready for more..
hi cob i was just kidding about having more, i will get some to take in a few months some how. it would really give me a break even if it was only 3 times a year. something to look forward to. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Joined: Jul 28, 2005 Posts: 1268 Location: Sydney, Australia
Posted: Sun Oct 05, 2008 6:38 pm Post subject:
Out of interest, have you ever done IV steroids? I personally haven't.
When I started Rebif (stopped after 3 months) my neuro said he would use IV steroids for a relapse, but I later realised he gave me no instructions or contact numbers to get it organised, so I have used oral steroids for a relapse.
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Sun Oct 05, 2008 6:48 pm Post subject:
i had iv steroids once with my first eye problem but even it had an oral prednison taper after the iv. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
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