Pulsed oral methylprednisolone
AnonymousAugust 27, 2008 at 12:00 pm
In an article on PIN and CIDP in the medical issue of the GBS/CIDP communicator (pg. 4) that came in the mail yesterday I read the following interesting comment:
[QUOTE]our experience suggests pulsed (once weekly) methylprednisolone is also effective in the long-term treatment of CIDP and is relatively well tolerated compared to daily steroids. These treatments not only lead to improvement in strength, balance and numbness but can also induce a remission[/QUOTE]
have any of you had any experience with this? since I had such a bad reaction to prednisone last year and had to discontinue it, this article made me wonder whether this would be another option for me.
AnonymousAugust 27, 2008 at 4:27 pm
Hi ya Norb,
just a real quickee post as am gettting kids off to school etc, yeah there are a few here and there have been a couple of threads fairly recently re peoples current experiences. Some of us are actually having the pulse mthylpred IV and some oral. In my case am having it IV weekly 500mg,(next week decreasing to 250mg) have been on this 500mg dose for 10 mths. The tricky thing is am on other therapy (twice weekly ivig, and immunosuppressants) so i am not completely sure what is giving me the greatest benefit. All in all have improved 95% (from paraplegic to being fully dependent and running duathlons etc). I definately get results from the ivig as have tried several times to reduce to just weekly doses but begin getting weaker – falls etc. It will be interesting to see what happens now we are reucing the methyl pred – and yes it is a big reduction! Have to try these things though!!
I read the article also and had just finished reading Dr Parry and (i think it was J Steinberg) latest reaserch findings solely on a methylpred programme. Results definately were positive and i too am hoping I will be one of these fortunate CIDP’ers to discover remission. Can get back to you later re title etc so you can try and source the data, it was very interesting.
catch ya later
AnonymousAugust 27, 2008 at 4:31 pm
I have been on the pulse steroids a few times for my Lupus but not for the CIDP. It did wonders for me but it’s was a high dose. 1000mgs. It will make you feel nervous some at first and shaky feeling. I sailed up in the bed and got instant relief. Will make you hungry too! But coming down off the drug may give you some weakness and make you feel tired but that goes away. Hope this helped some. Never had it for CIDP but am pretty sure it would help!
AnonymousAugust 27, 2008 at 5:23 pm
Hi again , I know youve got a different variant so to speak, but thought would just mention i had initially tried o prednisone (not pulsed) in conjunction with ivig with no effect, it didnt even hold me, and i continued to deteriorate on the o pred and ivig. Re side effects and tolerating the pulse, no majors (in comparison to being paralysed anyway) only initially hair loss (not too bad) increase appetite but if ones strong enough this doesnt need to be a big prob, biggest issues is insomnia on day of treatment, mood swings, again i learn to deal with these MOST of the time, and of course the taste of it during infusion. In the study i was talking aobut these things and a few other things were identified. Of course you need some form of calcium supplement and or biphosphantes etc, osteoporosis was an issue long term. Again relevance is related to current age, and current state of health – this is a concern for me as have many many many more active years in me yet!!!
all the best
AnonymousAugust 27, 2008 at 7:59 pm
Norb, Its something to consider, especially since ivig doesn’t help you much. I am putting that treatment on my list of things to try. I just came off a pred burst, I hate coming off of the burst cause it works really well the first few days and gets worse with the smaller dosage.
Lets put it in other words, how are you going to know if it works for you until you try it. Go for it!!!:) Hugs to you and your’s!:D
AnonymousAugust 27, 2008 at 10:25 pm
:confused: I know that you know this norb, but others may not notice……………….First off, note that it is prednisilone/not prednisone.., which I’m not able to tell you the difference between the two prescriptions…. I’ve been on the pulse steroid treatment plan for two to three months… I’ve been on same dosage as kiwi taken oral once per week 500… Side effects for me are insomnia (1st nite and sometimes 2nd, after taking), mild stomach upset, and face gets warm and red 2nd day… I’m not taking any other meds period previous or post pred… I’m also on ivig 2 treatments every two weeks… I think the prednisilone is supposed to reduce the inflammation of the nerves, allowing for nerve healing…. Kiwi is more up on this stuff than I am….
I can’t say for sure if its the ivig or the prednisilone helping, but I feel I’ve pretty much have steadily improved.. Hope this could work for you….I’ll post more stuff perhaps later…..Kinda wiped out, spent the day at the Minnesota State Fair……deanop
AnonymousAugust 28, 2008 at 2:07 am
I’ve been on pulsed methylprednisilone for almost a year now and it has worked wonders. The neuro. started me out with the IV form and then after a couple of months he switched me over to oral form. I have noticed tho that with the last attempt to ween down the dosage some of the symptoms have started to return, perhaps because he tried to ween me down just a little too fast. He started me at a gram a day then went to 500mg twice a week and am now at just under 300mg twice a week.
AnonymousAugust 28, 2008 at 10:00 am
I’ve been doing pulsed oral pred since about march. It’s helped me get signficantly lower on my daily predisone does, and hopefully will continue to do so as I keep working to reduce the amount of prednisone I take.
The real benefit of the oral pulse dose for me, though, is that I can do it my self, from home – no home health aids, no going to the doctor once a week for a cortisone shot. It’s nice to have that little bit of control regarding my own body 🙂
AnonymousAugust 28, 2008 at 1:47 pm
I was on IV Solumedrol (methylpred), started at one gram twice a week for six weeks, then a gram a week for six weeks, then taper. It was a disaster, and my doctors believe it helped precipitate a severe exacerbation that left me with significant increases in disability that remain in many ways today, two years later.
I would never do them again in any form, due to my bad experience. I do IVIG every other week. The therapy that I am most interested in is the high dose Cytoxan protocol now being rolled-out by John Hopkins. It is a protocol that Hopkins doctors have trademarked as Revimmune, and it has produced remarkable results for patients with MS and other autoimmune conditions, including I believe some severe cases of CIDP.
AnonymousAugust 29, 2008 at 11:58 pm
Thank you for mentioning the name of this drug; as it was actually my treatment of infusions of cytoxan that arrested my CIDP back in 2003. I had one of the 4 most severe cases that Dr. Gareth Parry had ever seen, at one point was even treated every Friday for 12 weeks with Plasmaphersis in the morning, IVIG & Solumedrol in the afternoon. This was after being treated with all 3 for 8 months previous to that. The cytoxan infusions did arrest my CIDP & a year later I was up walking & got most of the use of my hands back. I still have resiudals left from axonal damage, but do lead a pretty normal life for my age. I looked up an article on this protocol & found this:
Revimmune Uses An Approved Drug In A New Patent-Pending Method To Eliminate Autoimmunity
Also Included In: Lupus; Immune System / Vaccines; Neurology / Neuroscience
Article Date: 03 Mar 2007 – 10:00 PDT
In clinical studies for the lead indication of multiple sclerosis (MS), Revimmune improves function in most patients and stops progression in over 90% of cases refractory to standard therapies.
Accentia Biopharmaceuticals, Inc. (NASDAQ: ABPI) has acquired the exclusive worldwide rights for Revimmune™, a patent-pending pharmaceutical treatment in late-stage development for a variety of autoimmune diseases. The in-license advances the Company’s strategy of acquiring late stage drug candidates that can benefit from the 505(b)(2) regulatory pathway. Revimmune uses an ultra-high intensity, short-course of an intravenous formulation of an approved drug (cyclophosphamide), in a new patent-pending method to “reboot” a patient’s immune system, thereby eliminating the autoimmunity, whereas current therapies including oral cyclophosphamide are used chronically to try to suppress the inflammation of autoimmunity. Based on long-term follow-up showing complete remissions, there is substantial evidence that Revimmune has the potential to cure cases of severe refractory autoimmune diseases such as aplastic anemia and myasthenia gravis. Accentia’s lead indication for Revimmune is multiple sclerosis (MS).
The Principal Investigator for the ongoing MS study with Revimmune at Johns Hopkins University School of Medicine is Dr. Douglas Kerr, Associate Professor of Neurology. Dr. Kerr stated: “Based on follow-up of up to 2 years, most people have a substantial improvement and many have a complete elimination of disease activity.” The co-Principal Investigators on this study are Dr. Daniel Drachman and Dr. Robert Brodsky.
The Revimmune license covers all of the estimated 80 autoimmune diseases that are currently recognized. These include multiple sclerosis, systemic lupus, juvenile diabetes mellitus, rheumatoid arthritis, Crohn’s disease, myasthenia gravis, and scleroderma. To date, over 175 patients, mostly those with severe refractory autoimmune diseases, have been treated with Revimmune. The Company believes that Revimmune is a “platform” technology that can be used in any autoimmune disease.
Revimmune can be administered as an inpatient or outpatient infusion for 4 hours per day for 4 consecutive days. Patients can recover at home while their immune system reconstitutes itself over a 2 to 3 week period. Revimmune includes a risk management program to enhance patient safety by ensuring appropriate patient selection, supportive care, and tracking of outcomes data.
Developed by Dr. Richard Jones, Dr. Robert Brodsky, and colleagues at the Johns Hopkins University School of Medicine, Revimmune works by temporarily eliminating peripheral immune cells, including the immune cells causing the autoimmunity, while selectively sparing the stem cells in the bone marrow. Investigators at Hopkins discovered that stem cells uniquely have high levels of a particular protective enzyme that can be measured in advance of therapy, which makes them impervious to Revimmune, and allows the surviving stem cells to give rise to the new immune system over 2 to 3 weeks. The newly reconstituted peripheral immune system typically lacks the misdirected immunity to self-antigens, which is characteristic of autoimmune diseases.
AnonymousSeptember 3, 2008 at 11:36 am
Yes – there’s a lot of buzz about this treatment, particularly on the MS message boards. As of right now, I believe you have to go to Hopkins to participate in the trial, although I believe Rush Medical Center in Chicago will soon also be a site. Evidently, Hopkins is very selective regarding the applicants allowed into the trial, selecting patients they believe are going to be the most responsive to the treatment. For instance, as of right now, for MS, they are limiting the protocol to MS patients with the relapsing/remitting form of MS, not progressive forms. However, there are promising results thus far.
AnonymousSeptember 3, 2008 at 3:10 pm
Thanks Pam for posting this aricle. As you know I messaged you last week about this for myself. My rheumatologist that I went to says I am borderline positive for lupus, as well as classic CIDP and wants to try Cytoxan. He has sent a letter to my neurologist about starting it. But he told me it was a year of therapy. This looks like one dose or am I mssing the boat?
I am getting weekly IVIG with Solumedrol and Cellcept 1000 mg twice a day and it just isn’t holding me anymore. I just got a mobility scooter, although quite nice to move faster than a snail, was a little humbling since I am onlu 48 years old. I want to try this treatment, and I am hoping my neuro agrees. If anyone else is doing it, let me know….Gabrielle
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