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Crohn's disease/autoimmune condition treatments - effects on CFS/ME?

Discussion in 'General Treatment' started by parabola, Jun 16, 2016.

  1. parabola

    parabola

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    Seeing that @hamsterman also has Crohn's in another thread, got me thinking about Crohn's treatments and how they interact with our CFS/ME.

    My consultant wants me to take Imuran (azathioprine) but considering the fluey/sinusy/downright infectious type symptoms I experience regularly (seemingly independent of Crohn's disease activity) I am very wary of this immunosuppressant. But then part of me wonders whether my symptoms could also be a manifestation of an over-active immune system/autoimmune in nature, in which case this drug could (theoretically) be beneficial all round.

    Past treatments:
    Mesalazine - caused salicylism/aspirin poisoning symptoms which nobody recognised, I had to keep pushing!
    Metronidazole - didn't help at all, just made me extremely nauseous
    Corticosteroids (prednisolone) - Felt human again for the first time in years!! Slept like a baby, brain fog cleared, memories returned, creativity returned, just felt extremely well. Unsure whether this was due to it's anti-inflammatory properties or it's immunosupressant properties?
    Elemental diet drinks (hypoallergenic E028) - Felt about 90-95% well on these, would stay on them forever if I could, but they caused issues with hypoglycemia eventually and my teeth and gums suffered. May ask to try another course for some relief.

    So fellow Crohnie's/autoimmune sufferers, please tell me about your meds and how they have influenced your ME/CFS symptoms!
     
    Snow Leopard likes this.
  2. hamsterman

    hamsterman Senior Member

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    Hi Parabola. Ahh yes.. the superhuman feeling you got on prednisone... that's always the case for us...it was unbeleivable for me... If you go to the Cronh's Extreme Fatigue Support group ( http://www.crohnsforum.com/showthread.php?t=57159 ) they almost always say the same thing.... and they also say nothing else works for fatigue.

    Apparently Cronh's is just as bad as Lupus when it comes to fatigue... (compare http://curetogether.com/crohns-disease/symptoms/ and http://curetogether.com/systemic-lupus-erythematosus/symptoms/ ) but for some reason... many Doctors don't think its as big of a problem.

    I'm not an expert here... but I think the key to 'grouping' us together with ME/CFS is by lookiing at our PEM. Some Cronh's fatigue sufferers don't have PEM, and don't overlap with ME/CFS, especially if its from absorption deficiencies.

    But many of us do...we have the same Pem trigger: (Physical, Social, sunlight, heat, viruses), the same delayed onset, the same durations, and the same Symptoms (muscle-pain, extreme anxiety, flu-like feelings, fatigue)... too many coincidences.

    I took Imuran, only once, but it seemed to make me even more tired... and it didnt seem to put me in remission either.... but that could just be me.

    Interestingly enough... I do feel much better on the LDN.... both fatigue... and my CD.... but I know its too early to tell... only 5 days into it.... and I've seen things work for short a while, and then disappear afterwards (ex: hydrocortisone)
     
    redrachel76 and Hutan like this.
  3. Living Dead

    Living Dead Senior Member

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    I would say take the Imuran, since you did well on Prednisolone. It won't "wipe out" your immune system, if that's what you're fearing. Also, I wonder why you are no longer taking the Prednisolone.
     
  4. hamsterman

    hamsterman Senior Member

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    Chronies have to take high-doses (40mgs) of Prednisone for short periods of time to try and 'shock' ourselves into remission. Basically... we only do the 40mgs for about a week, then we taper off for the next few weeks. So its an 'as needed' drug.
     
  5. Living Dead

    Living Dead Senior Member

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    Is there a particular reason that you can't stay on a low dose to prolong remission like other autoimmune illnesses? Just curious.
     
  6. hamsterman

    hamsterman Senior Member

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    It only really works at the high dose.... unlike some other AI diseases like RA which only require 1/8th the dose. (At least that's what I'm told). There used to be some doctor's that kept their patients on some sort of maintenance dose of Prednisone for long periods, and it really wreaked havoc on their system at that level.... did far more damage than good. I've tried lower levels of Pred, just to see myself... and it didnt seem to do much.
     
  7. Living Dead

    Living Dead Senior Member

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    All AI illnesses start with the high dosages, then taper down AFAIK. I think the problem for Chrons must be that it thins the mucous membranes over time, including the gut lining itself. It does that for all illnesses, but sounds like a problem with Chrons. So you cannot stay on it.
     
  8. Sea

    Sea Senior Member

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    I don't have chrohns but I was given high dose prednisone for a week when I had reactive arthritis following Parvovirus. It was wonderful!

    The ongoing fluey symptoms do seem to be an expression of an overactive immune system. When people who have chemo which wipes out their immune system get a virus they often have no recognisable symptoms because they have no immune response to it. I'd cautiously explore an immunosuppressant if it was recommended.
     
  9. parabola

    parabola

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    You've hit the nail on the head there- thank you! I've been looking at all these others with crohn's on social media, and they're just doing so much, and I can never understand it. Working out/training whilst working full time etc. all whilst talking about being in a worse state (crohn's-wise) than I am. I've been beating myself up about it for ages, wondering why I'm not able to do what they're doing, but what you've said there makes so much sense! It's the PEM, and the lingering symptoms which don't go away at all with normal amounts of rest.

    When you mention absorption deficiencies, I think the elemental diet must go beyond that for me because I do feel well on it, and my nutrient levels are normal now I think, so it must be to do with resting my immune system/limiting stressors in the form of ingested allergens?

    I already had osteopenia when they diagnosed me (due to crohn's/coeliac malabsorption issues) so long-term steroids are a massive no-no for me. I am getting closer to trying the Imuran, the last barrier is the fact that I live with my mother who works in a school and is constantly bringing home bugs which take me weeks to shake off.. I really need my own space (for lots of other reasons too including being able to go a whole night undisturbed..) but I don't think it's going to be financially possible :(
     
    Snow Leopard likes this.
  10. parabola

    parabola

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    This is really interesting to me as it ties in with what @hamsterman was saying about 'types' of Crohn's with or without PEM. From my observations, people with PEM do well/feel great on steroids but the people without it always feel terrible on them and talk about how horrendous they are/dread having to take them etc. I suppose it could imply a higher physiological demand for/difficulty producing corticosteroids in the PEM (CFS) subgroups, whereas the others could have worse disease (e.g. crohns) but more of a 'normal' physiological response to it/way of coping with it.. Sorry I'm rambling!
     
    Snow Leopard and Sea like this.
  11. hamsterman

    hamsterman Senior Member

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    Yes, some people just can't handle Prednisone, when I say how wonderful it is... they seem puzzled... but many say that it kinda 'wires them a bit too much'... and of course... there are tons of side-effects.
     
  12. kangaSue

    kangaSue Senior Member

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    I'm not in either the Crohn's or ME/CFS camps but come across something that might interest you. I have complicated GI dysfunction and other issues with autonomic neuropathy going on. The main main problem is hypotension induced Non-occlusive Mesenteric Ischemia (NOMI) and Gastroparesis, both of which are known to occur in some of those with IBD too.

    In looking for a means to treat the bowel ischemia I came across purinergic signalling and the experimental use of dipyridamole in IBD.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340257/ (especially point 3.3b)
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3675791/


    IBD is associated with excessive inflammation of the bowel, and purinergic signaling has been implicated in IBD. Intestinal inflammation is associated with a severe shift in metabolic supply and demand for oxygen, resulting in profound hypoxia of the inflamed mucosa. This was pretty much what was seen in me during a colonoscopy to conclude I had NOMI.

    I was struggling to control vomiting, nausea and severe abdominal pain. I have a major tolerance problem with most meds as well as food and supplements but initially tolerated dipyridamole well and it helped greatly with all symptoms at only 1/4 the dose. Unfortunately it followed the pattern of many other meds in that I only tolerated it for a couple of weeks but it might work better for others that don't have such chronic GI dysfunction.

    Others might chip in to say that dipyridamole is evil for CFS as it's used to induce the stress part in an an exercise stress tests but in that arena, it's given at much higher dose than I'm talking about.
     
    Hutan likes this.

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