The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Response to Prednisone?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by pogoman, Oct 1, 2015.

  1. pogoman

    pogoman Senior Member

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    So I am at a week in of 25 days of prednisone treatment, started at 40mg and starting to taper down 10 mg every 5 days.
    There has been a slow but steady improvement every day on muscle pain and stiffness and energy levels.
    I have not had the reported emotional side effects, I feel pretty good actually and while I can't sleep past 6 or 7 hrs total each night I feel fine on that amount.
    Only downside is I am fighting stomach bloat, I started taking potassium every day and drinking lots of fluids.
    But at this point its tolerable.
    I have not felt this pain free in years except on opiates which is a whole nother story.

    So those who are familiar with pred, what will my neurologist make of the results??
    Does the response fit with an autoimmune issue or are there other possibilities?
    I know this is going only be temporary so if its autoimmune in nature I want him to be more aggressive in treatment.
     
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  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Whats the indication for the prednisone use?

    I did 10 days of prednisolone this year when chronic headaches from head shingles werent resolving. I was worried i was going to have problems sleeping etc but wasn't an issue. It did help headaches which im guessing were inflammation related and in general felt quite good .

    Hard to know if its helping inflammation from an autoinflammatory aspect or inflammation from infection . I guess it does show we have alot of inflammation going on. It would be nice to have something just as effective but without the side
    Effects of corticosteroids .
     
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  3. Valentijn

    Valentijn Senior Member

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    @pogoman - Long term prednisone can be quite rough on the body. But a low dose of a different corticosteroid, such as cortisol, might still have a beneficial impact with less risk of side-effects.
     
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  4. pogoman

    pogoman Senior Member

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    Its in relation to if this indicates my noninflammatory myopathy is autoimmune related.
    My neurologist started me on pred after I let him know I was feeling worse and wanted to try it.

    There is a new subset of myopathy called necrotizing autoimmune myopathy or immune mediated necrotizing myopathy, I just got a copy of my muscle biopsy from last year showing muscle necrosis and atrophy.
    My neuro also had me do the HMGCR antibody test for the statin caused variant but it was negative.
    The thing about these types of necrotizing disease is inflammation is not present, which fits my biopsy results.
    I have high CKP (mid600s) and the inflammation tests have all been negative.
    Because NAM is fairly new, there's only a couple of antibody tests and something like half are diagnosed as ideopathic.

    http://archneur.jamanetwork.com/article.aspx?articleid=2398134

    Thank you, I will bring that up when I contact him on the pred results.
    The literature indicates monotherapy is not usually successful unless started early :(
     
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  5. Woolie

    Woolie Senior Member

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    @pogoman, there is a recent thread on this (started by me):
    http://forums.phoenixrising.me/inde...ne-got-me-out-of-bed-should-i-continue.35521/

    A good response to prednisone seems to be common in us (but not universal). The snag seems to be with the problems of long-term use, of which the primary one seems to be osteoporosis. Doctors are very cautious about this drug, especially in the US. I've heard stories of lupus patients begging to have their dose raised, to ease their pain, and their doctors refusing.

    I'm not sure, though, that the thread addresses your specific question. My GP, who prescribed prednisone for me (as a last ditch attempt to help me save my job), certainly felt that my response was confirmation of some sort of inflammatory condition. We started on 40mg, then began to taper as soon as I showed some lifting of symptoms. Doc also prescribed me risedronate, a new anti-osteo drug (to protect against the osteo risk), and also a vitamin D supp (cocalciferol), because the pred depletes you of Vit D.

    My experience was that the insomnia disappeared after a few nights. I also use zopiclone (ambien) one pill per night. Using these two "unwise" drugs together, I was able to go back to work after a two-month period of being totally bedbound. That was more than six months ago, and I'm still working. I'm still on a maintenance dose (13mg), and my doc is very anxious to bring that down to below 10mg.
     
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  6. pogoman

    pogoman Senior Member

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    @Woolie
    Yes, long term use would be problematic for sure, I am hoping this will spur the neuro to think of a proactive drug plan with other meds that have less side effects.

    I noticed a drop in energy and some increase in pain when I tapered to 30mg, I had stopped the mito energy supplements when I started the pred so I will start back up on them.
     
  7. Woolie

    Woolie Senior Member

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    @pogoman, I forgot to say: that taper you have planned seems pretty fast and drastic. At least for us folks (might be fine if you have hives or asthma, perhaps).

    Wonder if you should talk to your doc about dropping down more slowly? You're still a long way off having to worry about long-term side effects.
     
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  8. pogoman

    pogoman Senior Member

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    @Woolie
    You may be right, yesterday I had to run errands involving a lot of walking in the sun and it was pretty miserable.
    Sweating and body pain unlike anything I'm used to, almost like getting the flu.
    Took pain pill and a nap and I was much better, today I feel pretty good actually after a good nights sleep.
     
  9. pogoman

    pogoman Senior Member

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    Got a reply to my email about how much better I was on prednisone at the 5 day mark and that I wanted to start a treatment plan.
    Liike I said, he is conservative.
    :meh:


    "Hi
    Since last year you have had various blood tests and saw a rheumatologist and there was no evidence for an inflammatory problem.
    We need to find an inflammatory problem to justify the prednisone dose that worked for you and or other medications that we can use to keep the dose of prednisone to a minimum.
    Thus I'd like to order a few more labs to be done at xxxxxxxxx xxxxx again once they call you."
     
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  10. Woolie

    Woolie Senior Member

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    @pogoman, thanks for updating on your progress.

    This doesn't surprise me at all. Doctors are very edgy about prednisone, and they want to see a proper justification (usually a raised CRP or ESR test) before they risk using it. They also use these measures of inflammation as a means of tracking the success of the pred - and knowing when its safe to drop the dose - which they obviously can't do if you don't have raised ones to start with.

    The problem is, there's a very strong chance you won't show any markers for inflammation no matter how much they test you. That's the worst thing about this illness: all this misery and nothing to show for it.

    He also mentions other meds. By this I think he means "steroid sparing" drugs, such as methotrexate. But I've never heard of anyone getting prescribed any of these things without a rheumatological disorder confirmed by testing.

    I guess there's nothing for it but to go for the tests. But steel yourself for null results, just in case - so often happens ith us guys. :(
     
  11. pogoman

    pogoman Senior Member

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    @Woolie
    Thank you for that insight about the meds and doctors, I now see why he is reluctant.

    I can just hope that one of the tests he orders will be the one that finds something amiss.
    All the inflammatory tests I've had in the past have been negative, also the rheumatologist he referred to did a bunch of tests that were negative.
     
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  12. pogoman

    pogoman Senior Member

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    An update, it took awhile but the neurologist ordered the anti SRP antibody test which is the other test given for necrotrizing autoimmune myopathy.
    Still waiting on the results but I also did labs at the same time for the endo doctor I am seeing again next week.
    My CPK levels dropped to half of what they've been, I think the prednisone is responsible for that.
    So even if the SRP test is negative, I hope the neuro will use the CPK results to start some kind of drug treatment.
     
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  13. Woolie

    Woolie Senior Member

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    Thanks for keeping us posted. @pogoman! Let us know the next installment as soon as you can.
     
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  14. pogoman

    pogoman Senior Member

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    Well the srp antibody test was negative.
    However, the other labs I did at the same time for my endo doctor showed noticeable improvement after being on prednisone.

    My muscle CPK dropped to 326 u/l from 619 and my testosterone went up to 230 ng/dl from 198 six months ago.
    I saw the endo a week later and after telling her about the pred treatment she said I have secondary hypogonadism due to the muscle disease.

    She said the testosterone normally drops on prednisone and that the muscle disease is the primary issue.
    So now I will only see her if things get worse.

    Never got a email or call from the neurologist about the srp test, I emailed him about it with details of what the endo said along with that pain symptoms were getting worse and I had started back on Meloxicam.

    Short version, he gives me a Meloxicam prescription for 100 plus another 400 refills :jaw-drop: and said theres no target to use prednisone except maybe intermittantly.
    I get the impression he doesn't want to do anything.

    So I am going to research for another specialist that is more familiar with NAM and start the process of changing doctors.

    Symptoms steadily been getting worse, pain and stiffness to the point of having to take norco sometimes.
    I am on the max dose of Meloxicam, also have started back on the lithium orotate to help the methylation and mito supplements I'm on.
     
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  15. Woolie

    Woolie Senior Member

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    Sorry to hear of your frustrating situation, @pogoman. The lack of biomarkers for what we have essentially means its hard for doctors to justify any pharma associated with reasonable risks (and less face it, the stuff likely to work is likely to have risks). If you're anything like me, those NSAIDS like Meloxicam just don't touch it, they're close to useless.

    Hope you have more success with another specialist.

    Have to say, although I had a great response to prednisone around 10 months ago, it seems to be less effective at providing relief now than it was then. I think a lot of us here find this. Something seems to work for a while, then doesn't. But still, I'm grateful for the relief it gave me at a time when things were truly awful (and it allowed me to keep my job!)

    Good luck!
     
    Last edited: Nov 15, 2015
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  16. Hutan

    Hutan Senior Member

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    I've taken mobic (meloxicam) for a month now (15 mg). I had picked up an apparent pattern of being better across the board when I took ibuprofen for migraines so my doctor and I thought a fairly high dose of meloxicam might be worth trying.

    I've been keeping a spreadsheet of blood pressure, heart rate (supine and standing, morning and night) as well as presence/absence of a whole lot of symptoms including a measure of 'psychomotor vigilance' (http://www.sleepdisordersflorida.com/pvt1.html#responseOut) - for about 3 months.

    I was optimistic about meloxicam to start with, but I think I have to conclude that it isn't doing anything much. No side effects but no significant benefit either. On to the next thing..
     
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  17. pogoman

    pogoman Senior Member

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    @Woolie yes, I can see his point of view before the labs came back but now, notsomuch.
    Reading the studies on NAM, about half of the patients do not have antibodies and so CPK levels are used as a benchmark.
    And many relapse after treatment, thats why I want to see if the other drugs like retuximab?, IVIG and steroid sparing drugs used for NAM may be more appropriate.


    @Hutan
    oh yah I have had plenty of experience with meloxicam the past few years haha.
    Advil actually works pretty good but jacks up my blood pressure.
    I am getting stomach aches today after a week on Meloxicam so I am gong to go none or 7.5 mm per day until the pain starts ramping up.
     
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  18. pogoman

    pogoman Senior Member

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    Well things are finally moving along :)
    I requested a different doctor for a second opinion, I saw the department head of neurology Friday.

    We discussed the prednisone results and my biopsy findings, he was sceptical that it was a statin caused myopathy inspite of my fibrate and statin history.
    I told him about the pain and stiffness were getting worse and I was having to take stronger pain meds in addition to the methylation and amino acids supplements.

    @Woolie , he did say the prednisone trial seemed too steep a taper to him too.
    He did not think it was a genetic/metabolic muscle disease because they do not involve pain according to him.
    We discussed pred, IVIg and rituximab but he was not in favor of them for me.

    He thought I may have carpal tunnel so he did the nerve conduction tests on my hand and wrist, it was negative.

    Then he did a needle EMG test on my thigh above the knee, it was noisy at rest and a lot of popping when I flexed the leg altho I don't know the significance.

    After this, he got real thoughtful and paused.
    Then he said he thought what I have was caused by lipid medicines.
    He asked me if I wanted to go on prednisone or IVIg and I said I wanted to try IVIg.

    So, I have a referral to the Infusion department and they are to call me to set up the treatment.

    Some thoughts on this.
    I felt like crap at the visit, it was early morning and I work night shft before and I did not take any pain meds before going.
    So I was hurting pretty much and maybe it showed on the EMG test.
    The doctor appeared somewhat surprised at the EMG results, after that he was like lets do this.
    I didn't ask him on details of what he thought it was or if it was NAM, I was just glad he was agreeable to further treatment :)
     
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  19. Woolie

    Woolie Senior Member

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    Wow, @pogoman, this is a rare encouraging story on this forum. They actually found something and are offering you treatment that might help! I'll be keeping my fingers crossed for you!
     
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  20. pogoman

    pogoman Senior Member

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    @Woolie , thank you!
    I don't know how long the waiting period is for this treatment, hopefully within this month.
    But I am glad to get started on this :)
     

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