PULSE STEROIDS

[B2468]

HELLO. I WAS TAKING PULSE IV SOLUMEDROL / 1000 MGS EVERY 7 WEEKS FOR ABOUT 3 YEARS. MY VEINS HAD FINALLY GIVEN UP THE GHOST BACK IN FEBRAURY '10 AND I HAVE NOT BEEN ON THEM SINCE THEY COULD NOT SINK A NEW LINE.

MY MS HAS KICKED BACK INTO GEAR AFTER 5 YEARS OF NO PROGRESSION / SHELF STABLE AND IS STARTING TO MOVE NOW. MY NEURO HAD TOLD ME ABOUT SOME FOLKS DOING PULSE ORAL STEROIDS WITH SIMILAR RESULTS. WE WERE ALSO CONSIDERING INSTALLING A PORT IN MY CHEST TO RUN THE ROIDS THROUGH.

ANYONE ELSE DOING THIS? I AM CONCERNED ABOUT BECOMING IMMUNE TO THE EFFECTS OF THE ROIDS IF I HAVE A FLARE. I AM ALSO WONDERING IF ANYONE ELSE HAS HAD A REDUCTION IN THE "COG FOG" WHILE ON STEROIDS. PLEASE LET ME KNOW. THANKS IN ADVANCE!

[BigA]

HELLO. I WAS TAKING PULSE IV SOLUMEDROL / 1000 MGS EVERY 7 WEEKS FOR ABOUT 3 YEARS. MY VEINS HAD FINALLY GIVEN UP THE GHOST BACK IN FEBRAURY '10 AND I HAVE NOT BEEN ON THEM SINCE THEY COULD NOT SINK A NEW LINE.

MY MS HAS KICKED BACK INTO GEAR AFTER 5 YEARS OF NO PROGRESSION / SHELF STABLE AND IS STARTING TO MOVE NOW. MY NEURO HAD TOLD ME ABOUT SOME FOLKS DOING PULSE ORAL STEROIDS WITH SIMILAR RESULTS. WE WERE ALSO CONSIDERING INSTALLING A PORT IN MY CHEST TO RUN THE ROIDS THROUGH.

ANYONE ELSE DOING THIS? I AM CONCERNED ABOUT BECOMING IMMUNE TO THE EFFECTS OF THE ROIDS IF I HAVE A FLARE. I AM ALSO WONDERING IF ANYONE ELSE HAS HAD A REDUCTION IN THE "COG FOG" WHILE ON STEROIDS. PLEASE LET ME KNOW. THANKS IN ADVANCE!

All I can say is that in some countries, steroids are given orally. The other question is one for your doctor. But oral steroids are by some accounts just as effective.

[kudos]

I know this is an area of active research (DMD + pulse steroids, oral or IV). There's some information on pubmed that I was reading through about this. Most studies used IVSM though. Also some of the studies are contradictory:

Oral methylprednisone + interferon-b1a shows reduced relapse rates in small study:
http://www.ncbi.nlm.nih.gov/pubmed/19409854

However the ACT study contradicts this:
http://www.ncbi.nlm.nih.gov/pubmed/19204263

Cochrane review--continuous use of steroids not helpful, re: use of pulsed steroids--more data needed:
http://www.ncbi.nlm.nih.gov/pubmed/18254098

I would talk to your doc about. From what I can tell it hasn't been studied enough to know if it is helpful or not, but maybe it depends on the person. There might be some more articles in pubmed about it.

Also, for some reason I know oral steroids tend to make optic neuritis worse if you have this, so you might want to take this into consideration:

http://en.wikipedia.org/wiki/Optic_neuritis

Regarding cog fog, I had this big time during my last relapse. I think I might've had a couple relapses close together, if that's possible. I noticed a major improvement while though on IV steroids though and felt like myself again. I still have some memory issues, mental fatigue, and multi-tasking problems. But its been slowly getting better week by week. I think and hope my brain is healing

Good luck!

--K

[julierooster]

I'm sorry-- can someone explain what "pulse steroids" are? Is this the 3 days of solumedrol given when you have an exacerbation to try to get the inflammation down?

I've just seen this several places, and thought I read somewhere that pulse steroids was a different treatment than the IVSM that my hubby got when he first had the symptoms. Since then we've had a couple of rounds of 100mg oral prednasone for 6 days followed by a taper.

Just was curious, and sorry for interrupting this thread with that question.

[kudos]

Hi Julie, no problem, I enjoy sharing what knowledge I have to share.

Basically "pulse" steriods are taking them for days / weeks, followed by a period of not taking them for days/weeks, and then going back on them in a cycle, sometimes without a taper. This differs from how they are usually used in the US at least for MS (at least for RRMS), where they are taken only during an exacerbation and then stopped indefinitely until the next one, or at constant dosage for RA or lupus.

Best,
--K

[wkikta]

Pulse Steroids are usually a one day pulse of 1000 mg IV Steroids every month, but can be more spread out. It is used by some people to control their MS. Since it does tend to lower the Immune system it cannot be used with Tysabri. Since what you have been doing is working, I would have the Port put in.

[Redwings]

That's pulseD steroids -- with a D

Hi B2468:
The question of whether or not to put in a port goes beyond just pulsed IV steroids. You also have to consider whether you have adequate venous access for ANY kind of IV -- steroids for treatment of a flare, Tysabri or a chemo agent, or even a saline line if you need one. If your veins are bad enough to prevent future access for anything, then the port-a-cath is worth considering.

Putting in a port is a straightforward procedure, but it's still surgery. If/when the time comes that you're not using it regularly, it needs to be flushed periodically. That's not a big deal, but it's one more thing that will need to be done, perhaps when you least feel like dealing with it.

I did pulsed IV steroids regularly for 7 years in addition to a DMD. First 1g per month, then 1g every 2 weeks. In addition, I had 3-day IV treatments for flare-ups every 2 to 3 months. There was some time off of the pulsed steroids here and there as I did IVIG and IV chemo. After 4 years I cut back to 500 mg every 2 weeks, still with 3-days every 4 to 5 months as my new doc and I began to try oral drug combos to get me off the steroids.

By year 6, it looked like the steroids weren't making any difference in the frequency of my flare-ups, so I decided to get off of them. It was about time, too, because even though some veins held out that long, I was down to only 2 usable places. I had to either get a port, switch to oral steroids or get off the maintenance steroids altogether. Those couple of places held out well enough to last the final year as I tapered off the maintenance steroids. I never got the port, and I'm glad I didn't.

It's important to note that I was on the huge amounts of steroids because I have NMO, not MS. (For brevity, I'm leaving out the story of the misdiagnosis.) But the underlying principle is the same for ALL inflammatory conditions, not just MS. Because of the long-term side effects of steroids, the idea to to try other medications to get people OFF of long-term, regular steroid use, even when pulsed. I was extremely fortunate to not develop diabetes, glaucoma or osteoporosis after all that time, and my cataracts are minimal.

The one thing you didn't mention is whether you're on a DMD or using only pulsed steroids to control your MS. If the DMD you're using isn't controlling your progression, then the logical thing to do is to switch DMDs. If you're not on one, the logical thing is to start one.

So the other thing to consider about pulsed steroids is whether you want to continue to do them after 3 years, or try another med to try to stay off of them because of long-term side effects. That does factor into whether you should get a port-a-cath for access for an IV med like Tysabri or Novantrone.

If you want to wait on getting the port, you can do high-dose pulsed steroids orally for awhile. Some people have extra side effects from orals, but research shows that they're just as effective as IV at equivalent doses. And with oral MS meds in the pipeline (Gilenia could be available by the end of this year), it's possible you could take both high-dose steroids as needed and your MS med orally without needing to put in a port. Despite the last attempt, is your venous access somewhere adequate enough to hold out that long?

As you alluded to, it's said that steroids lose their effectiveness over time. That may or may not be true, or it may depend on the individual. I haven't been able to find any research reports that indicate one way or the other. But the belief is prevalent enough that there might be some truth to it. As far as losing all effectiveness, that's hard to say. Some exacerbations just don't respond to steroids, no matter what, and it doesn't have anything to do with a person's previous steroid use. Personally, my IVSM 3-days seem to be just as effective as they ever were in spite of the years of maintenance steroids.

[Mammamia]

IVSM 3-day

This was a great, informative post. I am curious about repeating 3-day IVSM treatments for a single attack if the first course doesn't seem to help?

I had a serious attack coming from C-5 about 5 weeks ago. I took the 3-day IVSM about a week after it started, but the flare continued to worsen and then reach a plateau. I now have numbness and strange 'sandpaper' sensations all over my body and my right hand is pretty useless.

I'm wondering if I should go for another 3-day course? I wanted to wait to see if the first one would take care of it, but I don't think it worked. At this point, I would take another course if it would help bring the sensation back, but I hate taking steroids...?