It's been a while since I last posted but would like to gauge from our slightly longer term steroid swallowers if any have experienced more severe gastric disturbances since their PMR/GCA journey was diagnosed.
In am into my third year of PMR, have been hospitalized 2016 & 2017 with a noro virus & slowly recovering presently from a maybe a bout of food poisoning? with vomiting only.
Each time this has happened it is at the height of summer - I take special care with my food, don't eat out & most careful with my hygiene without being OTT. NZ has had an extremely hot summer thus far, not that I am complaining.
I do have an over sensitive gut, my steroids are made up in an acid resistant capsule to dissolve in the large bowel. I am grateful for this service which is expensive but worth every cent.
Am awaiting to see Gastro Specialist & can not tolerate most mainstream meds for the gut. I use ginger, slippery elm, probiotic's, keifer coconut yoghurt - all help sooth gut membranes & sometimes stimulates my appetite a fraction which of course I need once I feel able to eat.
Have stepped up my steroid meds prior to this recent gut disturbance & want to keep out of hospital.
Any other folk been in a similar predicament to me & I do wonder if we are more at risk or is this just the norm as we age dare I say?
Any thoughts always gratefully received
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Megams
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Hi Megams, well I guess we do have a compromised immune system and that is your weak spot. I get severe psoriasis on my feet in the summer and ear infections ( psoriasis linked) in the winter. I have just had both within weeks because I went to Australia. I can’t believe that my feet became normal within hours of leaving a hot climate - having looked and felt like I’d badly scalded them. Cortisone cream merely halted it slightly.
It sounds like you have found a way of managing your sensitive gut. It’s a mystery.
Have they suggested psoriatic arthritis to you sj? They had a good mutter at the hospital when my elbows turned scaly. Last year under my breast was terrible and my feet. Never really had it before. They are seeing where things go.
I think you are right that we all have our own weak spots.
Megams: I think slippery elm is contraindicated with pred and other meds. A bit like adcal it should be taken separate from pred. If you eat cheese check pasteurised. I make sure I have antibacterial wipes for shop baskets and trollies. I take another stronger immunosuppressive med so am careful to. No shaking hands at present which is great because a couple of blokes have hurt my arthritic hands. 💪
Thanks Poopadoop. I suggested it and it was dismissed, long before PMR. I can’t remember why. The Psoriasis just stays in those places. It’s a pain having awful looking feet in sandal weather. Sea water really stung, I thought it might help. I don’t think they have anything special to treat it with either. Just moisturiser and low dose Cortisol cream. I have annoyingly perfect little feet in warm tights weather..
Hi there Poopadoop - thank you for your response, much appreciated.
Yes indeed slippery elm is contraindicated with meds & fortunately for me my meds takes a good 6 hours to get thru my system to break down in my large bowel as it is in an acid resistant capsule. This leaves my gut alone & I have hydro cortisone as pred in NZ is not enteric coated.
Good thinking with the antibacterial wipes too - I carry a wee spray bottle in my car after I have been into a shopping mall or Supermarket.
Your sore arthritic hands - think its a great idea not to shake hands at all. Some men don't stop to realize their strength when shaking hands.
Hi Sheffieldjane - thank you very much for your reply & sorry to read of your situation.
This site an amazing source of the varieties of auto immune scenarios.
I also realize that on this journey we are likely to end up with a few more issues than what we initially started with & always finding best way possible to manage new & ongoing challenges.
Presently gently building stamina at gym for surgery to repair long term split in peroneus brevis tendon R ankle.
Recently completed 2nd round of autologous blood injections L & R elbow extensor tendons. I need to be able to get around on crutches for a short time.
Sending kindest regards & many blessings in the meantime.
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