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Corticosteroids affected my ME/CFS

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by LisaG, Sep 17, 2021.

  1. LisaG

    LisaG Established Member

    Messages:
    17
    Early in the summer I had a synthetic corticosteroid injection (Kenalog: Triamcinolone acetonide) for joint pain. To my surprise, I no longer experience the same lymph node pain and flu-like feeling on exertion. As a result I have an increased capacity for activity. It's been several months now and I am still experiencing this partial remission.

    Has anyone experienced something similar, or know any more that might help me understand?

    My ME also improved after I stopped my HRT medication.
     
    TiredSam, Louie41, EzzieD and 18 others like this.
  2. Graham

    Graham Senior Member (Voting Rights)

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    3,326
    I've been on a low dose (10mg) of prednisolone for a long time to stave off bad head pains. Strangely, after my recent bout of covid, in hospital, where I also had a high dose of another steroid and IV anti-fungal treatment, I seem to be able to manage on less prednisolone.

    Prior to that, while in for sepsis, they raised my prednisolone to 30 mg for a short while. It totally lifted my brainfog, and suddenly I could juggle all sorts of complex ideas simultaneously. Then they slowly reduced it and I mentally was dragged back into my darkened, linear-thinking cellar.

    I have read all sorts of accounts of people's experiences with steroids and ME, and the picture is very mixed: it seems to help some and cause others great trouble. There doesn't seem to be any clear reason or analysis.
     
    Ariel, TiredSam, LisaG and 19 others like this.
  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    2,529
    I've had positive experiences with steroids. The main thing was a noteable reduction in muscle pain. It was wonderful. No other symptoms improved, but I might have forgotten, as this was many years ago.
     
  4. hellytheelephant

    hellytheelephant Senior Member (Voting Rights)

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    715
    I have a friend who has ME, and said she has never felt so well as when on steroids.
     
    Ariel, MEMarge, LisaG and 7 others like this.
  5. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    2,241
    Location:
    UK
    I've only taken topical steroids, but the experience isn't good. Beclometasone, an asthma med, reduces my function by maybe 20%; a steroid nasal spray, fluticasone, caused all of my periods of severe ME. My GP told me that it probably stops my adrenal glands from working properly, apparently a rare but well-known side effect.

    The asthma drug is taken using a dispersing chamber, so there's much less chance of accidental ingestion than there is with a nasal spray, which can drip down the back of your throat – this might be why one treatment affects me so much more than the other. I'm still pretty relieved to have been able to chuck the asthma inhaler back in the drawer this week, though, as the levels of fungal spores outdoors seems to have reduced enough to stop me needing it!

    I might have a completely different experience with systemic steroids, of course.
     
  6. Trish

    Trish Moderator Staff Member

    Messages:
    36,248
    Location:
    UK
    I know several people who don't have ME, and who have normal energy levels, who have to take steroids sometimes for flare ups of other conditions. They have said that when they are on steroids their energy levels increase too.

    I was put on a daily steroid inhaler for mild asthma. It gave me a constant sore throat that was worse than sometimes being a bit breathless, so I gave up, and just have the asthma med inhaler for occasional use.
     
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    10,021
    A jab of Kenalog would probably make most people feel zipped up and free of lots of symptoms like sore lymph nodes and joint pains. The downside is that steroids over a period of time have lots of adverse effects.

    In the 1980s and 1990s rheumatologists used shots of steroid a lot because the benefit often seems to carry over longer than the steroid was actually around to cause side effects but with more effective drugs steroids are now used much less.
     
    Sly Saint, Rain, J.G and 13 others like this.
  8. jamari

    jamari Established Member (Voting Rights)

    Messages:
    46
    Location:
    United Kingdon
    I had the worst crash of my life when on prednisolone.
    But!!! I was also prescribed an extremely high dose of calcium supplementation while on them.
    I also received sleeping meds due to insomnia as a side effect.
    So I can't say it was the steroid.

    btw. I'm happy you've had some relief.
     
  9. Graham

    Graham Senior Member (Voting Rights)

    Messages:
    3,326
    I think the interesting part is my clarity of thought. This was when I was "trapped" in my hospital room (covid restrictions) and when my cataracts prevented me from reading/writing or watching TV. I started to play around with Fermat's Last Theorem (x^n + y^n = z^n) in my head, drawing sets of graphs, creating relationships between n=2, n=3, etc., and working out cube roots to 1 d.p. in my head.

    That is a massive change from my usual linear thinking. I have no idea why it worked like that.
     
    Ariel, mango, MEMarge and 9 others like this.
  10. LisaG

    LisaG Established Member

    Messages:
    17
    Thanks everyone. I've been given prednisolone for a skin condition but I'm wary to upset the new balance in my body, and it's good to know that the effects vary for individuals. It's made me a little more cautious, but helps in the consideration process.
     
    MEMarge and Peter Trewhitt like this.
  11. LisaG

    LisaG Established Member

    Messages:
    17
    Interestingly I had the jab in April and still no lymph node pain. Would you expect such as lasting effect?
    I was rather hoping if I had a relapse that it might be a possible treatment option - just for occassional use. Not sure who would agree to this though?!?
    And not sure that sounds likely from what you say.:(

    As you'll see above, I'm afraid to take prednisone in case it 'undoes' the kenalog effect.
     
    MEMarge and Peter Trewhitt like this.
  12. Blueskytoo

    Blueskytoo Senior Member (Voting Rights)

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    153
    I’ve just had a steroid injection for hip arthritis done, like literally last week, and so far I’m actually having worse symptoms of low-level fever and inflammation elsewhere than I normally do. Some of this is probably just PEM from a 200-mile round trip to the hospital and the procedure itself, which was extremely uncomfortable and not pleasant at all, and my body really struggles with physical stressors, but if it’s not better in a few days then it could be steroid related, I suppose. I am one of the “haven’t had a cold or any other virus since I got ME” subtype though, so whether that makes a difference or not I don’t know.

    I’m still in a lot of pain from my hip joints and once the local anaesthetic they injected into the joint with the steroid wore off that hasn’t been any better than before, but what I have noticed is that since the injections the difference in the mobility of the joints is really noticeable and I’m not getting the terrible spasming of the muscles which basically clamped the whole joint rigid whenever I tried to move it after being in one position for a few minutes. Thus far, I definitely think I’d have it again, although if it carries on with the sore throat, glands and fever I might have to reconsider. I hope I don’t have to choose as the difference in my hips is remarkable so far. But I can’t afford to relapse much further. As ever with ME, everything we do is a balancing act….
     
  13. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    1,537
    Hi @Blueskytoo steroids injected into the joints is different than when you take steroid pills or intra-veinous injections- the one in the joint is meant to float there and provide localized relief lasting for weeks. (I hope it works like that for you)

    i agree with your impression that the sore lymph nodes and low-grade fever are associated with post-exertional symptoms. I have gotten this many times and a 200 miles return trip would cause that for me, on top of being upright and all of the stimulations that are associated with that.
     
  14. Blueskytoo

    Blueskytoo Senior Member (Voting Rights)

    Messages:
    153
    Thanks, Milo, I hope it does too! And yes, thank you, I was aware of that regarding the injection, and perhaps I misunderstood the procedure that Lisa had as I assumed it was similar to mine, but, even so, apparently one of the potential complications of this procedure is that the steroid can leak out and cause immune system issues. I was warned about it beforehand but decided to risk it.

    Although I was expecting PEM, and definitely have it, this level and length of fever is extremely unusual for me and is lasting much longer than I would have expected. I normally only get about 24 hours of chills, sore glands, sore throat and cold sweats and a mild temperature, and by resting up as soon as they hit I’ve found that they dissipate quite fast even if the rest of the effects of PEM like muscle aches and weariness take a few days, or a week or two, to recover from. But these immune type symptoms have been clobbering me for over a week now, which is what makes me think it might be more injection related than PEM related. I also had a weird reaction the day after the jab, almost exactly 24 hours afterwards, on one arm where the entire upper part of my right arm (where I’ve had both my Covid vaccinations, oddly) became very red and very hot and quite itchy and stayed that way for several hours before recovering. This is EXACTLY the same reaction I got after both Covid vaxes, even to the timing, and about 24 hours before I got walloped with a reaction to those which lasted for several weeks, and I’ve had the same timings with this. Normally (if there even is such a thing with ME!) PEM gives me around 48 hours grace, just long enough to wonder whether, just perhaps, this time will be the one time I escape it, and then it wipes my feet out from under me for a week or so.

    I must admit, they did have a lot of trouble doing one hip as the muscle contraction in the front of the joint from so many years in bed mean I can’t straighten that leg properly, and there was a lot of (very painful and unpleasant) digging around with the needle to try and get to the joint, so it’s not inconceivable that there was an “escape” somehow. Either way, I’ll discuss it with my consultant at the follow up appointment- another 200 mile round trip! But at least we can split it over two days and get a night in a hotel as a treat as we did this time. Ah, room service, I love you ….

    Unfortunately the trip is one of the downsides of living in such a remote area - our NHS board up here in the beautiful Highlands of Scotland have apparently decided that our local hospital, which is excellent and only 8 miles away, is somehow not worth funding properly and with their (completely misguided) decision to “centralise” our medical care, they make everyone, including labouring women, travel three hours each way to attend appointments 100 miles away in our nearest city. But I still wouldn’t live anywhere else.
     
    Milo, Peter Trewhitt and Trish like this.
  15. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    1,537
    Omg @labouring women (sorry i had to react to that first)
    On a different topic before i got sick i cycled from Glasgow to the Isles of Mull and another one if i remember well, in the fall. It was superb and so peaceful.

    Re: your arm reaction, so weird. Stuff that happens, we know it’s real and most often gets a shrug from the dr. i hope it resolves for you.

    My hips and shoulders are getting tired from resting in bed too. I have OA on one of my ankle and got it injected, and it did absolutely nothing but i hear everyone’s different.cwill you get a hip replacement?
     
  16. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    4,753
    Hydrocortisone was a really crap experience for my daughter.
    Made things worse .
     
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  17. Blueskytoo

    Blueskytoo Senior Member (Voting Rights)

    Messages:
    153
    Truly, the hospital situation is shocking - we have one road that goes from where we live down to Inverness and in the winter it’s often blocked by snow. We’ve had one woman last year who ended up giving birth to one twin in a toilet block halfway to Inverness and the other twin in an hospital in Aberdeen because there were no maternity beds at Raigmore, we’ve had at least one woman and her partner literally following a snow plough that was sent out just for them down the A9, and there are many more stories like that. We have kids spending a whole day in the car just for a five minute orthodontic appointment to turn the screws on their braces and all hip replacements are done there so elderly people, including my 80 year old mum, have then to travel three hours home post surgery. It’s a shocking state of affairs but we’re fighting it. We have a perfectly good hospital right here in Wick which is excellent but the local NHS board keep saying they can’t get staff to work there, which is mostly because the cheap fuckers won’t advertise the posts locally. They’re trying to close the hospital by a war of attrition, never mind the local population. Aargh.

    I can’t have a hip replacement, unfortunately, because I’m too ill to cope with the surgery. I had minor keyhole surgery to remove my gallbladder about ten years ago when I was moderate and it left me in bed for six months and I never fully recovered afterwards. I’m now severe and I can’t afford to lose any more functioning and I’ve been advised that the op is just too brutal for me. My body does not cope at all well with even minor physical stresses and it would more than likely push me into very severe ME. My mum, who is fit and healthy, was floored by it for about three months, although she’s going great guns now three years on.

    I can live with the hip pain as I’m pretty well medicated (although that might change, there’s a new GP at my practice and they’ve cut some of my morphine prescription with no consultation so that’s another battle I’ve got to gear myself up for) and the injections have made a huge difference to my flexibility so I’ll have to settle for that. It’s not so bad- my hips aren’t really getting worse because I’m not on them much as I’m in bed such a lot. I’d just like to be able to sleep in more than one position - I’ve slept on one side for ten years and the wear and tear on my neck and shoulders from that doesn’t help with my pain levels, although huge magnesium doses make a difference to that, luckily. Like so much with ME, if you have comorbidities as well you just have to balance out the lesser of the two bad choices and this, unfortunately, is mine.

    I’m really sorry the injection didn’t work for you, that’s rough. Ankle OA must be so painful, poor you x
     
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  18. Milo

    Milo Senior Member (Voting Rights)

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    1,537
    oh you said Inverness, I was there! And you made me look at the map of where you are, and where i’ve been. Skye. I loved it. I would have loved a trip to the outer islands and the east side too. I would have loved to see puffins (i was not in season).

    Sorry to hear about your situation. I hope your pain settles nicely. The Oa in my ankle started early in the course of my ME, and a rheumatologist somehow decided to do a bone scan of my ankles, and it showed OA on one side. He injections i got (i had two, one was steroid, and the other one was basically to add cushioning) did not work. I had about 4 or 5 surgeries and now i have chronic pain, mostly muscles from calf to toes on that side. Pain is exhausting.
     
  19. LisaG

    LisaG Established Member

    Messages:
    17
    A little update...

    I did try the prednisolone steroid. Very sorry that I did because it brought back some very old ME symptoms...crushing fatigue, muscle twitches and morning shakes!
    I gather this might be because of the effect on my adrenals.
    The only good thing out of this is that it gives me an insight into the cause of these ME symptoms.

    Lymph node pain is back as me and my household have colds.

    Rats! :banghead::cry:

    I do need another Kenalog steroid shot for my wrist. Will it perhaps reduce my lymph node pain a second time?! Hoping and praying that it does.
     
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