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  1. Hutan

    Hutan Moderator Staff Member

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    A few years ago, on the basis of my symptom tracking, I convinced my GP that ibuprofen was making a difference and she agreed to prescribe Mobic (meloxicam) as a trial (or perhaps she humoured me). It didn't work.

    My understanding is that Mobic is a COX-2 inhibitor whereas ibuprofen is both a COX-1 and COX-2 inhibitor. Whether the different COX inhibition accounts for ibuprofen reducing the likelihood of PEM and other symptoms for me while Mobic does not, I don't know. (At one point I understood what COX-x inhibition meant but I have long forgotten it.)

    I haven't tried naproxen.

    It looks as if naproxen is both a COX-1 and COX-2 inhibitor.
    So perhaps I would also find naproxen useful. @leokitten, why do you ask?
     
    Last edited: Nov 4, 2018
  2. Alvin

    Alvin Senior Member (Voting Rights)

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    I use Naproxen when needed over the others because it lasts 8-10 hours and its available without a prescription and its quite cost effective. It has no effect on ME that i have been able to discern even when taken 3x a day for weeks (when my jaw was hurting like a mofo).
     
  3. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Mobic is also ibuprofen, so it’s got the same mechanism (cox 1).

    Cox 2 inhibitors are Viox, Celebrex, Celecoxib, and one other. I think it’s viox that was removed from market, but all NSAIDS have a heart risk.

    I stopped using NSAIDS because my GI system couldn’t manage. I don’t have a pain flare plan of any kind.

    I thought hydroxychloroquine reduced my PEM, but rheumatologists are evil and took it away because I don’t have organ failure, even though my ANA is substantial and I even have other antibodies that come back positive occasionally (but not SED rate, complement, and so on, so they think everything is fake: I am doing this with the incredible power of my mind, I gather).

    Yes, I’m bitter. Will try and be better someday.
     
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  4. Hutan

    Hutan Moderator Staff Member

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    Mobic is meloxicam; it is different to ibuprofen. A brand of ibuprofen is Motrin, maybe you are thinking of that?

    Yes, you are right to point out that NSAIDS have side effects, especially when taken long term. I'm just interested in whether others have found various ones help in case it sheds any light on what is going on with us.

    I had an encounter with a somewhat evil rheumatologist too, but I'm quite sure there are some non-evil ones about. I hope you have the energy some time to try again.
     
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  5. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  6. WillowJ

    WillowJ Senior Member (Voting Rights)

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    I was replying to this sentence, but I should have been able to figure out what you meant to say from later parts of your post. Sorry about that.

    All the NSAIDs I tried did help the pain. I felt the best with aspirin, personally, but it seemed to cause bleeding, so I couldn’t keep using it.
     
  7. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    When I was really bad in the early days and hobbling around (knee and hip pain),Naproxen was the only thing that worked. Strong dose ibruprofen for 4 weeks did very little, but a week on naproxen was like a transformation. Pain was reduced within 2 days and I was walking almost normally after the week.

    At the time I wasn’t pacing properly so this was at the height of the mad ‘pushing through” phase before my diagnosis and I knew what was going on. I’ve not had that level of pain since I reduced my activity so haven’t tried naproxen since. Sorry I realise that’s not much help.
     
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  8. andypants

    andypants Senior Member (Voting Rights)

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    Ibuprofen in prescription doses (600 mg) is a huge help to me when I have to go somewhere by car. It makes the trip more bearable, and helps reduce the heavy nerve frying I get after. It can take me from sobbing from pain and exhaustion in bed to up and able to participate in a conversation. This is true in other situations where the nerves feel like they are on fire as well.

    I tried to take it 3x a day for two weeks, but it doesn’t have any noticeable effect other than on acute inflammatory responses. I combine it with paracetamol if I have aching muscles as well.

    I tried aspirin for a week too, figuring it could potentially help with my sluggish blood flow, but the stomach pains were so intense we were considering calling an ambulance several times before I figured out what it was.

    None of this helps at all when I’m already crashed.
     
  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I can't handle naproxen as it gives me severe stomach pain.

    I have tried ibuprofen and paracetamol, but only in standard doses. I have yet to find any painkiller that helps with the severe ME pain.
     
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  10. Daisybell

    Daisybell Moderator Staff Member

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    I think ibuprofen is somewhat helpful for me, but I don’t take it regularly. If my symptoms are exacerbated then it’s what I turn to.
     
  11. NelliePledge

    NelliePledge Moderator Staff Member

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    Can’t take them as I have high blood pressure and they aren’t allowed with my meds.
     
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  12. perchance dreamer

    perchance dreamer Senior Member (Voting Rights)

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    I take 3 Advil at night. My P.A. asked if I take them with food, and I told her I didn't since I take them shortly before bed. She read me the riot act and said I must have some food on my stomach before taking ibuprofen, even if it's only a few spoonfuls of yogurt. Otherwise, ibuprofen can really damage the lining of the stomach. I don't know if that's true for other forms of NSAIDS.
     
  13. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I developed high BP , breathing and stomach problems on Naproxan.

    Celebrex is the single best painkiller for me with no obvious symptoms. I know that's not the case for everyone though - especially people with heart problems and older people.
     
  14. leokitten

    leokitten Senior Member (Voting Rights)

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    It’s the only one I have in the medicine cabinet :laugh:

    I thought maybe next time I get the pre-crash symptoms incl. my brain on fire and wanting me to shut off all stimulation I could try an NSAID. It certainly feels like neuroinflammation!
     
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  15. perchance dreamer

    perchance dreamer Senior Member (Voting Rights)

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    I sure do miss Darvocette. It was taken off the market in the U.S. not that long after Europe removed it from their market. I took it in the evening and never had a problem with it. It helped for both pain and sleep.

    In my case, it might be just as well that it is no longer available. Tylenol was one of the ingredients, and it is supposed to interfere with methylation. Why can't better pain drugs with fewer side effects be developed?
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    I've had what is probably sinus inflammation for a few months and decided to try ibuprofen after lunch. Either it's working or coincidentally my sinuses are improving. Not perfect but I'm keeping it light with only one pill per day and a nasal spray early in the evening, which I had tried for several months and helped a bit but not enough to make a difference. The inflammation was significant enough to almost clog my ears and it's definitely reduced that, which is nice. Going on day 4 now, I think.

    But I also noticed that my brain fog is lifting a bit about 3-4 hours after I take it. Not enough to make a difference but it's noticeable. Anyone had improvements from that? I'm not really interested in trying higher dosages or other types, just curious. I'll eventually probably talk with my GP in the new few months, really not looking to that. I wouldn't call it PTSD but I have absolute and total distrust of medical professionals now. Ugh.

    I've also started having red joints in my hands, which I assume is inflammation, and darker spots that seem like bruises beneath the skin. Hard to say if it helps because it varies a lot.

    Before I tried ibuprofen I took a single diclofenac and it totally wiped me out for 2 days. Whew, will not try again. It did help with the sinuses but not worth it.
     
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  17. Rosie

    Rosie Senior Member (Voting Rights)

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    @rvallee I find diclofenac helps with overall ME but I must be more attentive and see if it does help cognitively. I usually can get through the next day going out and spending more time out than usual and feeling pretty good. I see you didn't tolerate diclofenac though.

    If diclofenac wasn't so hard on the stomach and other issues that it can cause I would take it every 3-4 days. I take 75mg dose once and then it's usually a couple of weeks or more before I take it again. I did buy some over the counter voltaren at 25mg that has the potassium instead of the diclofenac sodium. I still haven't tried this over the counter one yet.
     
    Last edited: Aug 22, 2020
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  18. perchance dreamer

    perchance dreamer Senior Member (Voting Rights)

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    I've stopped using ibuprofen at bedtime, replacing it with 20 MG of CBD oil. Wish I could take CBD during the day, but it makes me too sleepy.
     
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