Diarrhoea saga continued

[Broseley]

I've had diarrhoea on and off for over a year. It started after breakfast and stopped around lunch time, not every day, but about 3 days a week. It's been slowly getting more frequent. A month or so ago I spoke to the GP who first diagnosed me with PMR/GCA. She tested me for coeliac and cancer, both negative. I had no exam as she only does phone appointments. I tried stopping alendronic acid for a month, no difference.

Her response was that I would just have to put up with it.

Meanwhile I tried stopping magnesium, then omeprazole (after finding some 2.5mg enteric coated pred in the back of the cupboard). No difference. In fact it's worse, as it now hits me at 3am. I keep soiling the bed.

So I got an appointment yesterday, with a locum GP. He actually examined me, palpating my abdomen and did an internal on my rectum. He didn't find anything. He has asked me to produce a specimen for a calprotectin test. However it needs to be the first poo of the day. I am not awake enough to do this at 3am!! Maybe I need to set an alarm! Then I'll wake hubby who works long hours. Also I can't put the bathroom light on because that will wake him too (the doors have glass in the top).

Anyway, I read that calprotectin measures inflammation in the gut lining, and the level of inflammation tells you if the problem is IBD (high reading) or IBS (low reading). This then dictates the treatment and potentially saves the patient from having a colonoscopy.

He wants to see me again when I've got the results. I am so glad that at last I'm getting something done.

He agreed that the cause was probably drug related and said I could stop taking the Alendronic acid now I'm down to 2mg pred as of Thursday. He agreed that with my initial T score of -1.1 I should never have been put on it in the first place (before PMR diagnosis). However he declined my request for a repeat DEXA scan (as discussed with PMRpro the other day) as he said it has to be 3 years gap. Also he said there are no 1mg EC pred available DorsetLady on prescription. So I have to continue with uncoated and omeprazole. I kicked myself - I forgot to ask for the H2 antagonists. I will try to remember next time.

I invite the experts' comments. Thanks.

[DorsetLady PMRGCAuk volunteer]

As mentioned previously in many posts - 1mg EC are available as per BNF/NICE webpage-but many local health authorities are informing GPs etc that they are not to be prescribed on cost basis.

[Broseley in reply to DorsetLady]

Thanks. I guess he feels he has to follow the rules!

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Don’t think he has a choice ……from what I’ve read, it’s not a request, it’s an order.

[PMRpro Ambassador]

At least someone is finally taking note! However, the coeliac blood test is not definitely conclusive - you can have gluten intolerance without the antibodies. Have you tried eliminating gluten for some weeks and see what happens? Keeping a diary of symptoms and foods can often be enlightening as well. And sometimes there is gluten in drugs - speak to the pharmacist about that.

As far as the pred is concerned - most people are on ordinary pred at this stage anyway to be able to have 1/2mg reductions. You COULD buy an H2 antagonist OTC to see if that would help.

What else are you on?

[Broseley in reply to PMRpro]

Too much! Edoxaban, bisoprolol, atorvastatin, calciD, all prescribed, K2 (self prescribed), plus unprescribed: magnesium (only 100mg) zinc, turmeric, cinnamon, alpha lipoic acid, milk thistle, B12 spray, B1 tablets (to see if it really does repel mozzies), Quercetin.Already mentioned: pred, omeprazole, AA.

[PMRpro Ambassador in reply to Broseley]

Edoxaban lists loss of control of bowels. Many statins can cause diarrhoea, especially with greasy food, So can bisoprolol,

If it were me, I would stop all the non-prescribed stuff for a while and see if things improve. If it does, then reintroduce them one at a time. If it doesn't improve, it could be one of the prescribed ones and I would then start by asking the doctor to start with the edoxaban - given what the side effects list says, because that seems to fit. There are other anticoagulants that may be less likely to cause such an effect, certainly not one I have had with Pradaxa.

[Broseley in reply to PMRpro]

Thanks, the non prescribed stuff I've been taking for years, before PMR. The only new ones are the magnesium, B1 and Quertecin.I was on anti coagulants for approx 8 years before PMR. Apixaban, which was changed a few months ago to Edoxaban. I was co-prescribed the statin and bisoprolol with the apixaban. Oh, and I forgot the amlodipine.

[PMRpro Ambassador in reply to Broseley]

The trouble is, something might be OK on its own but when you mix a few together the dynamic changes, Magnesium can affect very sensitive flowers even in small amounts! But the attitude of "put up with it" is utterly unacceptable when it is affecting you as it is.

Had you started anything new in the few months before it started?

[Broseley]

No, but I know some of these drugs stay in your body for a long time e.g. alendronic acid. I don't like taking that or the omeprazole. I was prescribed that once before, back in 2012, by a GP who insisted I had acid reflux even though I denied it. It was her that also prescribed all the other drugs (except the pred and AA). Maybe she got a bonus!

I stopped taking the PPI after a year. I can't remember why. Possibly from having to pay, as I was working then. But it could have been diarrhoea. I do seem to be sensitive as I had chronic diarrhoea for 5 months when I was prescribed anti depressants back then, too. I stopped taking them, too. Then again about 5 years ago after a course of penicillin. It took about 3 months for that to stop.

I forgot, I also take prebiotics in the form of psyllium. That helped back then.

[SheffieldJane]

I seem to have a steady stream of 1 mg Entric coated Prednisalone from Boots. Buscopan is helping to regulate my bowels. Our Japanese Bidet Style toilet is a great boon, now we are used to it.

[Broseley in reply to SheffieldJane]

Thanks I'll look up Buscopan. How does your toilet work, what makes it better than an ordinary one?

[SheffieldJane in reply to Broseley]

It washes and blow dries your nether regions. They have them at the airport in South Korea, a great thing during our frequent journeys to see family in Australia. Saves on loo paper. The dread of possibly needing help when old and frail has gone. Very hygienic.

[Broseley in reply to SheffieldJane]

That does sound useful. Very much so for those with PMR, arthritis etc in their shoulders!

[cranberryt]

Can you get a colonoscopy? There are other conditions that can really only be diagnosed via biopsy, like microscopic colitis. I have PMR, microscopic colitis and celiac. The colitis and celiac didn’t appear until a year or more after the PMR.

[Broseley in reply to cranberryt]

The GP said about a colonoscopy, but wants to do the calprotectin test first, as it often negates the need for colonoscopy. I'm already exhausted from getting up in the night, so don't really want a colonoscopy unless absolutely necessary. I had one some time ago. The actual procedure was fine. What I hated was the enema because it kept me on the loo for a full 14 hours, all through the night. Then I had to wait till 5pm the next day for the procedure as I was the last one of the day. So 24 hours without food, a very sore bum and soooo tired! Not an experience I want to repeat! Especially with all the drugs I'm now on. How do you manage with pred if you can't eat?

[cranberryt in reply to Broseley]

When I had mine, I had to skip my meds that day. They put the prednisone in my IV during the procedure so I didn’t need to take it until the day after. They had me start the process of clearing the bowels a certain number of hours before my procedure. And unfortunately I was up in the night. I actually put a small mattress in my bathroom to sleep close to the loo! I had a large bathroom back then. Wouldn’t be able to do that in my current house. lol

[Broseley in reply to cranberryt]

Interesting about the IV. I didn't get that, or any anaesthetic! But it was about 30 years ago! Re the mattress in the bathroom, I could do that, but I'm not sure I'd be able to get up off it quickly enough!! On the other hand our bathroom is some way down the hall from our bedroom, so it's swings and roundabouts.