Feeling blah!!

[Sufferinginsilence]

Hello everyone. I'm currently on 8.5mg pred (lowest yet for me) and should be tapering to 8 but struggling. I've had a really bad diverticulitis flare up over the past six weeks which has left me with constant diarrhea. Due to see gastroenterologist on 26 July but in the meantime, GP won't prescribe anything in case gastorenterologist wouldnt like it. I'm feeling so tired (lost over a stone in weight over the past six weeks - every cloud has a silver lining!), have had a bad reaction with rash to one antibiotic and been on another for four weeks. Generally feeling v lethargic, achey and slightly light-headed. Over that period, particularly when I had the rash and couldn't sleep with the itch, I upped my dosage of pred to 10 for 5 days but didn't feel much effect from it. Do you think I should continue to try to reduce down?

[PMRpro Ambassador]

If you have other health problems I'd really counsel against continuing to reduce especially since you are at the threshold of adrenal function needing to return. Any illness tends to increase the need for cortisol to help the body fight it and since you are on that sort of dose your body is struggling to produce that top-up. It is the reason for Sick Day Rules. I'm not saying to increase the dose unless your GP agreed to it but I wouldn't go any lower.

[Sufferinginsilence in reply to PMRpro]

Thank you for your wisdom PMRpro. I genuinely don't think I could reduce down on top of everything else that's going on! Not due to see Rheumy again until October so hopefully will have other problem resolved to allow me to reduce a bit before I see him.

[SheffieldJane]

I agree completely with PMRPro about the sick day rules when you have an infection. When you say that your doctor won’t treat because it might interfere with the Gastroenterologist’s ability to diagnose you. Does this include antibiotics for the infection and even Gaviscon or Lansoprazole for the pain and damage ( that Pred will make worse). I know this pain it’s relentless. Roll on your appointment. My colonoscopy showed only wear and tear diverticulosis, so I don’t even get a referral to a Gastroenterologist, yet it behaves like diverticulitis. I have daily pain and an upset bowel function. Let me know how you get on. I believe this condition to be a drug side effect.

[Sufferinginsilence in reply to SheffieldJane]

Thanks SheffieldJane. I'm reckoning that because I've already had three and a half weeks on an antibiotic, the GP doesn't want to give me any more and she doesn't feel confident in prescribing anything else in case it's the wrong medication. The gastro consultant wrote to me to ask me to make an appointment because there were signs of inflammation in my bowel but the earliest one I could get (privately) was three weeks away. I'm constantly running to the toilet and having cramps in my abdomen but the GP told me to take Immodium for the three weeks! I'm worried about aggravating the diverticular disease by doing that too often. I'm so tired and uncomfortable, not sure what to do for the best. I'm eating very bland, white foods to try to settle the bowel. I've written to the gasto consultant asking for advice and my OH left it in for me. Sorry, should have said I'm taking Mebeverine for the cramps and on esomaprazole.

[Broseley in reply to Sufferinginsilence]

At one point I was taking 6 imodium a day for 3 months! Still didn't stop the diarrhoea but controlled it enough for me to be able to go shopping. GP no help whatsoever so I did a lot of reading. Michael Mosley has written about gut problems and he recommends probiotics. Not your off the shelf yogurty things or even from the pharmacy. I used Physis Advanced Probiotics with 50 billion CFU a day and 10 active strains of bacteria. I got them off the internet (make sure you use an approved British brand) and they worked. It took a couple of weeks but I kept taking them for a month.I don't think they can do any harm. GPS have yet to cotton on to this though so yours might advise against it. Here's a link to Michael Mosley's work on guts.

cleverguts.com/

[Sufferinginsilence in reply to Broseley]

Hello Broseley and thank you for your advice around probiotics. Strangely enough, my GP suggested I get probiotics 'as they couldn't do any harm'. I bought them in Boots and although they have 14 active strains of bacteria, each capsule has on;y 2 million CFU and I'm taking 4 per day. I wonder should I increase the number I'm taking to use these up and then I will order some of the ones you suggested.

[Sophiestree in reply to Sufferinginsilence]

My Gastro guy suggested something called VSL#3 it's expensive (£50 for a box of 30 sachets) which have to be refrigerated. I got mine from my chemist. Would have paid anything at the time. I now take a daily probiotic capsule which isn't so much.

Apparently they used to prescribe it to patients but it was stopped due to the cost.

[PMRpro Ambassador in reply to Sophiestree]

Gastro specialists seem to like #VSL3 - didn't know they used to be able to prescribe it. jinasc's GI guy told her to use that. I've used it too - really good.

[Sufferinginsilence in reply to Sophiestree]

Oh Sophiestree, as you say you would pay anything to get some relief. Can you remember how many boxes of the expensive stuff you needed before you saw some relief from the runs?

[Broseley in reply to Sufferinginsilence]

In reply to your question about using up your current probiotics, I don't see that it would hurt, especially as you're unlikely to get 50 billion CFU from the whole bottle! The ones I used are one a day.

[SheffieldJane]

I wish you really good luck with this, it is a really miserable. Let us know the outcome. I am wondering about a kidney infection as my pain is in the appendix area but not tender to touch. I get UTIs all the time and an upset bowel with frequency. Acidic food and drink is out. I pay for days.

[Sufferinginsilence in reply to SheffieldJane]

Oh no, SheffieldJane. I hope you get to the bottom of your issues too. There's nothing worse than that type of discomfort. I'm living on toast, mashed potato and yoghurt at the moment. It's pretty boring!! x

[PMRCanada]

When I had my last diverticulitis flare I was given a specific “bowel rest” eating plan along with the antibiotics. While taking the two types of antibiotics for a week my diet began with 5 days of clear fluids only (plain tea, water, apple juice, clear broths, popsicles and jello). This was followed by 5 days of “white” foods (mashed potatoes, bread, pasta, rice). Then a slow introduction of soups, yoghurt, pudding, applesauce, bananas. NO oranges at all while taking antibiotics.

I also had to hold my Methotrexate, but did not increase my pred. ER doctor gave me a shot of Toradol (NSAID) for pain.

I didn’t experience much diarrhea, but my first diverticulitis attack a year ago was chalked up to too much magnesium sulfate supplement, drinking high fat dairy in iced coffee drinks and a combo of long-term steroids, excess weight and genetic history (both parents suffered with it). Although I may never know the cause, things seemed to improve when I changed the amount and type of magnesium I was taking, and i eliminated high fat dairy.

Hope you get some relief soon and that your reaction to the antibiotics subsides. Diverticulitis is dreadful indeed!