This is partly an update on my last post regarding the lower left stomach pain that I’ve been getting and partly a flare. First, the stomach pain. I saw a GP last week ( different one ) ref the results of my recent ultrasound scan. The radiologist couldn’t get a clear picture, so did an internal exam. Not very informative. It said my right ovary is ok, but left one obscured. GP examined me and said he would refer me for a CT scan, which he thinks will be about a month. So, I’m waiting for an appointment for that. My Pred tapering has been going at 0.5mg per month and in mid June I reduced to 6mg from 6.5. Have had some slight ache in the hips when I wake, but nothing too bad. Then, over the last 2-3 days I’ve been feeling very tired. Falling asleep over lunch and having a nap straight after. I put this down to waking up regularly anytime between 3am and 5am. Yesterday, I got strong aches across upper back and shoulders and felt generally quite unwell. Overnight, both hips ached quite a bit and this morning the upper back/ shoulder aches again. Rang the surgery and was booked in for a F2F appt with a different GP. Unsure of how they would react regarding upping Pred dose, but he was ok. He suggested I go back up to 7mg and see how things go. If I’m still getting pain after 2wks on 7mg, said to go up to 8 and ring surgery to let them know. No need to book another appt. Wait and see how things are in 4 weeks before trying a reduction. He said its a difficult condition and I got the impression that he did understand about it. Quite a relief, really. Sorry for the long ramble.
Lower stomach pain - an update, plus a flare - PMRGCAuk
Lower stomach pain - an update, plus a flare
No problems about a ramble -and it isn’t 😊.
Try what they suggest, but just make sure you don’t get into the ‘I’ll hang on and see what happens’ - if you feel it’s not working then invoke the flare protocol as described in link -
healthunlocked.com/pmrgcauk...
Creeping sometimes works, but very often it doesn’t, so you might need a bolder approach.
Also be aware that the fatigue is likely to be adrenals, they have had even more to cope with recently with stomach issues and lowering pred, so are no doubt flagging somewhat.
healthunlocked.com/pmrgcauk...
Thank you for the advice. I think the GP was a bit wary of going up to 8mg straight away, because he said you’ve done the gradual reduction and you’ll have further to go down again. Also, my last blood test was showing CRP less than 5 on 14th May and I was on 7 then. Will see how it goes. I feel a bit rubbish at the moment, but I was quite pleased he seemed sympathetic and understanding.
Yes but if you use the flare protocol you don’t have that issue.. it up, quick blast at higher dose and down again [albeit to slightly above previous dose]. Some don’t get that.. but do it their way and fingers crossed it works.
Bloods have a habit of lagging behind symptoms… something else they don’t always get.
No being negative about your doctors -just saying they don’t always know these things.
Fingers crossed, yes. I was initially in two minds about speaking to the GP as I was unsure of their reaction. I thought they might want me to stick it out for a few days to see what happened. But I felt in the end that I ought to keep them informed so that it goes on my records. Now I’ve seen him I feel obliged to try what he says.
PS. Its always a different GP as our surgery is run with locums.
I would say try the back to 7mg - but first have 3 or 4 days at adding 5mg to the current dose. That will be less in the longer term than discovering the going back to the previous dose isn't quite enough and then constantly playing catch-up. Have a thorough clean out and then back to dusting ...
Thank you, PMR Pro. I do feel inclined to do something like that. Just for a few days. As I said to Dorset lady, I was in two minds about phoning this morning , but I felt maybe I ought to let them know. Then I was offered a F2F appt, surprise, surprise!! However, I do feel a bit like I did when this all started and maybe it will need a bit more to clear it up. Trouble is, they only give me 28 tablets at a time, so if they are checking on how often I’m ordering, I’ll have to explain. Maybe I’ll have to quietly build up a stock for emergencies. Thanks again🙂
You do need a buffer as a stock for an emergency. You cannot stop them suddenly now so being so stingy is very silly.
That's what I always do if I have a flare. Inceasing the dose slightly or going back up to what it was before a flare doesn't mop up the inflammation that has built up while I hum and ha trying to decide if it's a PMR flare or something else like overdoing it. If I feel rough for over about a week I know it's a flare. Usually 4 days at the 'Plus 5' dose does the trick and I feel better almost immediately I increase the dose. This is just my experience of managing my PMR. I'm unfortunately a long-termer, going into 12th year now so know how my body works and when inflammation has built up to a flare or 'bucket overflow' to use PMRPro's great analogy
Hi, yes. I got up yesterday feeling well below par, so I thought I’d take the bull by the horns and do as PMRPro suggested. Took an extra 5mg yesterday and today. I’ve felt a slight improvement, but a small amount of activity needs a rest afterwards. Plus, in addition to the aching upper back and shoulders, I gave my left shoulder blade a twinge getting out of bed. Treating it with kid gloves.
Hi Indigo2417
Regarding your abdominal pain, I thought you might be interested in my 'abdominal pain update'.
If you recall, I was experiencing similar symptoms to you.
I had an ultrasound scan that ruled out ovarian cysts...... because yes, as Pro has already mentioned, my gynaecologist also was adamant that you can still suffer from them, even at my grand old age of 66yrs!! 😄
A colon CT scan showed mild diverticular disease in my sigmoid colon. (That's at the left hand side) but nothing else of significance.
The gastroenterologist mentioned that left sided lower abdominal pain that comes and goes is frequently caused by diverticular disease and one of the most common reasons for lower left abdominal pain/discomfort.... and for some reason, it appears to be quite common in older ladies!
This now would appear to be true in my case!
Obviously its very important that all other potential conditions should also be ruled out as one of two other things may also manifest with similar symptoms.
Hopefully you'll find the answers you need sooner rather than later and I wish you all the best sorting both this and your tapering regime out.
Hi Kendrew. Yes, the GP I saw last week mentioned about diverticular disease. He said if I needed another ultrasound they would give me laxatives beforehand. Apart from that, he said if the CT scan didn’t show anything up, he could refer me to a gastroenterologist. I’m waiting for the CT scan first anyway. Hope your holiday is going ok. 🙂
Really hope you get sorted.
Holiday is going well so far thankyou. Pacing myself but enjoying myself. Son and daughter in law arrive Fri for a week and we're all going to have some surfing lessons!
Sieze the day as they say!!
You’re braver than I am, trying surfing, but then I’m not really a sporty type. Have a great time with your family.
Haha! I'm also definitely not a sporty type but I genuinely fancy a go....even though I don't expect to be much good at it.
I'm not bothered about how competent I'll be...it's all about just having fun with my family.
At least if you fall it will be on water and not on a hard surface. Less likely to do damage that way. Hope the weather is kind. We have wet today, dry tomorrow and wet again on Friday. It seems to be an on/off summer.
Just a thought are you taking a PPI like Omeprazole, pantoprazole or lansoprazole? If so it's possible that this may be contributing to your stomach problems. I had stomach issues and my gastroenterologist did all the usual tests which didn't reveal anything serious just a bit of inflammation in my stomach which was biopsied and was nothing serious. However, prior to all his tests I had been taking pantoprazole. He asked me to stop them while I undergoing scans etc. Amazingly my symptoms went.
So we discussed this and his thoughts were that ppi could have been the culprit especially where the constant diahorrea was concerned. I didn't go back onto them and instead was prescribed an older style H2 inhibitor called Cemitidine. I've had none of these issues again.
I do have IBS which I control well as I know my trigger foods but no longer have the pain or constant diahorrea.
Extra joint pain was also present during that time which my Rheumy thinks was related. Funny enough I've also had extra joint/muscle pain when I've had tooth infections too. My dentist says that it's not uncommon with dental infections. Seems like infection/inflammation elsewhere in my body causes increased pain in joints etc.
These are all symptoms that we commonly see in people on PPIs - and it is beginning to be realised they aren't the golden answer they have been regarded as.
I wonder if you have a reactive arthritis going on as well?
My Rheumy has suggested that this could be the case. Who knows with this body which seems to wear out more daily!
I was taking Lansoprazole, but stopped in April, after discussing it with a GP. I wasn’t happy about the effect it might have on my osteoporosis. I now take my Pred with yoghurt.
I'm on Cimetidine as a H2 blocker too because I react to a lot of foods, particularly fermented and acidic ones as they are high in histamines. I'm pretty sure I have some kind of mast cell activation problem that is triggerd by histamines but there is no help available for it other than meds such as Cimetidine or Sodium Cromoglicate which I have to take before eating trigger foods and many meds or its set off stomach and other allergy-type reactions
Has your GP done a CA125 blood test to rule out ovarian cancer?
Yes. They did that and the FIT test. The CA125 came back at 10ku/L. It was after those tests that I had the rather disappointing telephone call with yet another GP, who suggested that 95% of ultrasound scan don’t find anything and they’re very expensive. He obviously didn’t think it was worth investing the money in me, not being an economically active member of the workforce. He also said that ovarian cysts don’t usually occur in women of my age. Anyway, I persisted and got the scan, but they couldn’t see the left ovary. The latest GP has referred me for a CT scan, which he thinks may be about a month. On the plus side, the ache in my back sometimes takes my mind of the stomach pain and sometimes its the other way round.
That's good, it was just a thought as my bestie was dx with Ovarian cancer last year. First they fobbed her off and told her that her symptoms were IBS then they said it was a hernia but when they operated to do the 'hernia' found it was a massive tumour that had already spread to other organs. The CA125 when they eventually did it was in the high 100s. You deserve answers, don't give up!
One of my first thoughts after bowel cancer was ovarian, as from things I’ve read the symptoms can get passed off as something else. I’m sorry that it has turned out this way for your friend. It does make you more aware of pushing for explanations. I’m lucky too that my husband comes with me for appointments and is very persistent about not getting fobbed off.
I once asked my rheumatologist (who is amazing) for advice on how to handle appointments with other consultants and get them to listen as I'd had a very bad experience with one notorious git. Her advice was always take a man with you, ideally around 40 years old as they the only people taken seriously. Very elderly men seem to get treated better too, my nearly 90 yo dad always gets thorough investigations as does my 101 y/o neighbour!
Re my friends' ovarian cancer, when she found the charity Ovacome and started going to their support seminars she met so many other women, of all ages, who had been diagnosed very late and their symptoms missed. Doctors keep saying it's a hard one to diagnose but that's because they're not looking for it or even thinking of it! I knew it wasn't IBS, you don't suddenly develop that at the age of 57. Her prognosis is uncertain, but she is stable and optimistic atm and although some of the cancer is still there even after full hysterectomy and having other bits removed it is dormant with an ongoing chemo that stops it growing back.
It’s dismaying isn’t it, when you feel that you’re not being treated equally. I read an article along these lines in a Good Housekeeping magazine recently. Probably about April time. It said about women’s pain not being regarded in the same way as men’s. With apologies to all the men on this forum, who are no doubt well aware of the pain of PMR. My husband is definitely my best back up on appointments and he sometimes asks questions that I haven’t thought of. Wishing your friend all the best.
There have been a few best-selling books written in the past few years on the topic of how women are treated differently by medics eg 'Sex matters - how male-centric health endangers women by Dr Alyson J McGregor' and 'Invisible women' by Caroline Criado Perez. Wondering if I can borrow your husband to take with me to appointments? 😆
Funny, my ovarian cyst was identified by transvaginal ultrasound and I was in my 60s by then. I'd have called him on that. Late diagnosis of anything is even MORE expensive.
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