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    intravenous methylprednisolone?

    So, my new neuro guy says last month's MRI still show lesions in my brain and cervical spine...says there does appear to be any increase in demyleniation (sp?), but he's still thinking its MS.

    He's prescribed intravenous methylprednisolone, but only one dose a month for the forseeable future. First one at the hospital, then assuming no complications, the rest can be done at home.

    Any advice on what to expect for side effects? I'm not concerned about throwing up or hair falling out or anything like that...I'm concerned that (like Gabapentin did) it will make my legs quit working completely. Comments?

    #2
    I have never heard of methylprednisone being used on a chronic basis like this for MS. I would be much more concerned about developing diabetes or kidney disease from regular steroid administration than losing use of the legs. Absent the sudden onset of symptoms that correlate with the location of new plaques in the cord or brain, I'd personally be reluctant to commit to such a course of treatment...my understanding is that methylprednisone can sometimes halt the progress of acute new symptoms of MS (especially loss of vision), but if there is a protocol for chronic steroid administration, I haven't heard of it. Maybe it's a novel approach, but I'd be wary of doing something like this without asking a lot of questions about the doctor's rationale.
    MS with cervical and thoracic cord lesions

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      #3
      This is called pulsed MP therapy, and has been used in some cases of MS for at least 15 years that I know about. Here is some additional information from the National MS Society:

      www.nationalmssociety.org/download.aspx?id=553

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        #4
        Thanks for that link, KLD. My impression was that willingtocope's neurologist means to administer methylprednisone on a chronic basis (i.e, with no end in sight), whereas pulsed therapy is limited to weeks or months...but maybe I have not understood the situation correctly. I wonder if WTC has tried any of the MS meds, as my neuro has told me that steroids are usually not a first-line treatment approach, except in acute situations.
        MS with cervical and thoracic cord lesions

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          #5
          Yes, routine use of steroids in MS is discouraged, both because they do not help with exacerbations, but also because routine use is full of all sorts of potential complications including increased risks for diabetes, osteoporosis, and risks for infections. Intermittent (pulsed) MP is somewhat controversial and has not necessarily been found to be safer or better in reduction of exacerbation or progression than the other immunomodulating drugs such as Avonex, Betaseron, Copaxone, etc. etc.

          IV MP is often used for acute exacerbations, as is IVIG, but generally only for 3 days and then an oral steroid for an additional 2 weeks, but not for long term.

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

          Comment


            #6
            My neuro told me they'l start with a single dose on a single day, and then a single dose on more or less a monthly basis for "awhile". I think that fits the description from the article of "pulsed" treatment, which may indeed have a positive effect, without the long term risks. Maybe.

            So...I get to be a lab rat...

            None of the other SPMS or PPMS treatments seem to have any major effect, so I'll give it a try.

            Comment


              #7
              Yes, this is done in patients with MS who seem to progress. Especially in patients with MS who progress despite being on the Avonex etc..

              It is still considered safer then some of the heavy duty meds like mitoxantrone, tysabri, rituxumb etc.. and is one of the oldest/most commonly used treatments before the Avonex meds appeared.

              Some people get a little anxious after the steroids or have difficulty sleeping, so try to take it early in the day so some of the effect wears off by night-time.

              When my mom had to take the IV steroids with her chemotherapy (she had cancer though...), it gave her a lot of energy and she liked it.... she got a lot done during that couple days afterwards!

              I agree there are some risks to being on chronic steroids, but it is worse if you are on steroid pills every day then this once a month method.

              Things I would ask about is if you need to check your blood sugars around the days of treatment, take something to protect your stomach (PPI pill for a few days) and make sure you get enough calcium/vitamin D in your diet. We all deserve a vitamin D level check at some point anyway.

              So yes, I'd try it for sure.

              Comment


                #8
                Thank you, KLD and hlh, for your very helpful information!

                Best wishes to you, willingtocope! Hope this treatment works well for you.
                MS with cervical and thoracic cord lesions

                Comment


                  #9
                  Thanks for the replys, folks.

                  July 5th, 9am.

                  Strange that all the nurses I've talked to in setting this up have asked questions like "when did you stop taking the oral predisone?". Answer is, I've never taken oral steriods. Did he skip a step? I know he has some concern that I do have heart disease (well, to 100% accurate, I had triple bypass in 2000, but no problems since) and he felt that SoluMedurol(sp?) was probably the right choice to start with...

                  Anyway, once a month for six months...and see what happens from there...

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                    #10
                    Once a month for six months sounds eminently do-able, and hopefully you'll see improvements. Keep us posted!
                    MS with cervical and thoracic cord lesions

                    Comment


                      #11
                      Originally posted by willingtocope View Post
                      Thanks for the replys, folks.

                      July 5th, 9am.

                      Strange that all the nurses I've talked to in setting this up have asked questions like "when did you stop taking the oral predisone?". Answer is, I've never taken oral steriods. Did he skip a step? I know he has some concern that I do have heart disease (well, to 100% accurate, I had triple bypass in 2000, but no problems since) and he felt that SoluMedurol(sp?) was probably the right choice to start with...

                      Anyway, once a month for six months...and see what happens from there...

                      Nice scheduling.

                      The nurses administer steroids for lots of reasons, and probably don't take care of many patients like you. Probably most of their patients are rheumatologic patients who do take chronic daily steroids, so that is what they are used to. MS folks do not take daily steroids routinely at all. They didn't skip anything with you. The pulsing is the right way.

                      I hope it works for you. Good luck.
                      Last edited by hlh; 2 Jul 2012, 9:40 AM.

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                        #12
                        Is your neuro at the U of Iowa, WTC?
                        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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                          #13
                          I did monthly IVMP for two years, with no noticeable positive effects on my MS. I did experience severe mood swings and later loss of bone density.

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                            #14
                            Three days of IV solumendrol screwed my ability to think and changed my personality for months, back in 2001. I don't know if the protocol has changed since then. An 80 mg taper of oral prednisone had the same effect, but only for weeks. A 60 mg taper did not bother me at all. But I am somewhat smaller than a guy -- about 115 pounds then.

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                              #15
                              Originally posted by Sue Pendleton View Post
                              Is your neuro at the U of Iowa, WTC?
                              Yes. But he's part of the traveling road show that visits our small town once a month.

                              I'm a little concerned by U of I doctors...their head MS guy was less than sympathetic.

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