ongoing tapering

[Motida]

Thank you so much for the advice about dropping a couple of steps from 13 to 11.5 and then 10.5. I followed this but wonder how many days I should take 11.5 before dropping to 10.5. I would hate to mess up the tapering again?

I asked the GP about a blood test to make sure the dose was appropriate and she refused. Last one was in March 2023 and she said next one at least 4 months if then. She firmly believes that eventually I will taper to 0mg. I respectfully showed no reaction to this comment!

She was interested to hear about Healthunlocked/PHRGCAuk as it was all new to her, as was Rod Hughes and the research going on.

She could not give any advice on the different covid boosters, so will wait till near the end of June when the offer closes.

Hope you are not affected by the floods in Italy. They sound quite terrible.

[DorsetLady PMRGCAuk volunteer]

Guess this is following advice in another thread re flare and reducing back down to just above previous dose. If so, I usually advise 5 to 7 days on the interim dose …

[SheffieldJane in reply to DorsetLady]

I hope you are miles away from the car fires!!!

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Yes thanks -and somebody has been arrested -and released apparently 🤔

[Gossiplady in reply to DorsetLady]

hi DorsetLady and all! I am now down to 1.25mgs , doing well, but can you tell me please when should I take Omprezole? At the same time as Pred, around 2am or in the mornings with my breakfast? Many thanks of course.

[DorsetLady PMRGCAuk volunteer in reply to Gossiplady]

You can take either on empty stomach or with food. I think most take in morning -I did…

[Gossiplady in reply to DorsetLady]

bless you for as usual your excellent advice. It took 6 minutes to get your reply, what took you? Lol. Xx

[DorsetLady PMRGCAuk volunteer in reply to Gossiplady]

watching the rugby -European Champions cup!

[Gossiplady in reply to DorsetLady]

obviously PMR giddy old ladies are more important than mere rugby. Bless you.

[DorsetLady PMRGCAuk volunteer in reply to Gossiplady]

But we can still multitask..😊

[PMRpro Ambassador in reply to Gossiplady]

In the morning on an empty stomach, half an hour before anything else allows best absorption and effect.

[Gossiplady in reply to PMRpro]

bless you. How wonderful is this forum!

[PMRpro Ambassador]

Not wet here in my region - all south of here and today west - as can be seen from the Giro d'Itlia pictures on the Swiss border! We've finally had rain, a few days of steady drizzle rather than rain, but gratefully received as we were desperately short of water.

5 days on your interim dose should be fine.

[Mayadill in reply to PMRpro]

Been trying to follow the Italian Open (tennis) in Rome, constantly disrupted by rain, right now in chaos because second men's SF halted and women's final was supposed to follow it at 8.30. No roof. I shall tell the furious Twitterati that Italy needs rain.

[PMRpro Ambassador in reply to Mayadill]

They would have preferred it had been the gentle drought breaker we have had - and even we have had landslides as the rain has destablised slopes where the trees are badly affected by drought and/or Bark beetle. Our emergency services headed south on Wednesday to help with all sorts of large boys toys to play with. It is horrendous. No idea how the Giro managed to get through their stages at the start of the week.

I haven't seen any tennis - I used to have a tennis channel which always covered it but it has disappeared. Not much interest here now the local lad - Janik Sinner - is out.

[Mayadill in reply to PMRpro]

Oh dear, landslides are nasty stuff - no loss of life, I hope. Of course, yes, Jannik Sinner is not a resoundingly Italian name. "Jannik Sinner was born 16 August 2001 to Hanspeter and Siglinde Sinner in Innichen in the predominantly German-speaking region of South Tyrol in northern Italy. He grew up in the town of Sesto, where his father and mother work as a chef and a waitress at a ski lodge.[2]" Local boy makes good indeed and still in World Top Ten.

[PMRpro Ambassador in reply to Mayadill]

No, he's from just over 20 miles up the road. Seppi is a relatively local lad too and was a great favourite here, they are delighted Sinner has replaced him.

[SheffieldJane]

I don’t think blood tests tell us much about inflammation when we are on Pred which controls it.

[jules1955 in reply to SheffieldJane]

Hi SheffieldJane, you replied to someone earlier today about taking Pred with Yogurt - you said Pred had affected your tummy and you had something like IBS from it ? I can't find your post and just wondered what it is called ?

[PMRpro Ambassador in reply to jules1955]

Have a look at SJ's profile page and her replies

[jules1955 in reply to PMRpro]

Thanks PMRpro I did but couldn’t find it. X

[PMRpro Ambassador in reply to jules1955]

Trouble is, it doesn't show replies in an internal thread - forgot that

[jules1955 in reply to PMRpro]

not to worry I’m sure SJ will reply soon x

[SheffieldJane in reply to jules1955]

I have always taken Pred with Greek Style yoghurt. Following a year on Actemra/Tocilizumab, I began to experience lower abdominal pain. This has been diagnosed as Diverticular disease that flares up periodically and is painful with diahorrea and food sensitivities. It was diagnosed by a capsule, camera colonoscopy. I have been prescribed Buscopan but think I may need antibiotics.

Is this the information you need? I think I was responding to someone. IBS was casually mentioned by a GP.

[jules1955 in reply to SheffieldJane]

Hi Jane, yes thank you. I have similar problems but they started when I had my gallbladder removed about 5 years ago and I have since always put the problems down to this, my GP just said to take Imodium when needed. Does the Buscopan help ?

[SheffieldJane in reply to jules1955]

I don’t know about you but I am finding the pain a misery and quite disabling . The diahorrea is a relief if anything. My GP surgery is very reluctant to prescribe antibiotics but the hospital said I should be on them. I think the Buscopan offers some regulation of the bowel and relief of pain.

[jules1955 in reply to SheffieldJane]

I have quite severe bouts of diarrhoea, where I have to dash to the toilet, pain comes on suddenly - not always after eating, so I worry when going out as it is unpredictable. A friend suggested Buscapan so I will give it a go. Don't we all have so much fun eh ?? 😂

[PMRCanada in reply to SheffieldJane]

I’ve been prescribed the same two types of antibiotics with the 3 diverticulitis flares I’ve had (by hospital surgeon first time and my GP the last 2 times). It was explained that there was infection from food or bits of feces stuck in the pouches. I had a phlegdom in my sigmoid colon during my first bout of diverticulitis as seen in the CT scan at the hospital which definitely required ABX. This addressed/resolved my symptoms of pain in lower left abdomen, fever, headache, nausea and chills.

Of note I had not taken any antibiotics from 1998 to 2021 as my GP during that time was very against prescribing them. He took a “wait and see” approach and thought the cause of my presenting ailments was viral. I’ve been fortunate that my current GP is ok with prescribing ABX when I have diverticulitis and thus far I’ve avoided IV ABX in the hospital.

I feel bad that you are still dealing with abdominal pain….any chance you would try a 7-day course of ABX? Surely if the hospital says you should be on them it is a safe route to explore. I will say after I finished my course of ABX I had no pain or other symptoms and my bowels were functioning normally. I did have to follow a liquid diet for a few days followed by a low fiber (beige) diet consisting of all the foods I usually avoid, and then a slow introduction of fiber with lots of water.

Whatever you decide SJ I hope you get some relief soon!

[SheffieldJane in reply to PMRCanada]

That is all very useful. I am going to try on Monday with the GP. I am in varying degrees of pain all day and every day. Did you have particular tests to diagnose the detail of your diverticulitis or is that just how it is? I have had an MRI in Leeds where my Rheumatologist is and a colonoscopy in Sheffield where my GP is. It has been confirmed that I have diverticula disease but no detail and no follow up. I am possibly falling down the cracks here. ( The MRI was for Vascular involvement). Is thirst part of your symptom picture? I am sure I get feverish, I woke up shouting for my mum the other afternoon - very hot. She died in 2013. I was convinced that she was in the house.. I appreciate your concern. All my GP is good at is being inaccessible.

[PMRCanada in reply to SheffieldJane]

The first bout of diverticulitis meant going to our local hospital as it was a Sunday. The pain in my lower left abdomen was brutal and I was nauseous, had a mild fever, chills and diarrhea. The attending surgeon was called in and she ordered a CT first thing the next morning that showed diverticulitis including a phlegdom.

The second and third time I had a diverticulitis flare I was familiar with the same symptoms that presented themselves, and occurred after eating food outside my normal diet. My GP sent me for bloodwork prior to prescribing the ABX and did a physical exam. Sure enough my ESR was elevated and my CRP was higher than when I was diagnosed with PMR. I believe it wasn’t PMR related inflammation as I had remained on the same dose for the month prior, no PMR/flare symptoms.

I recently (Feb/23) had a colonoscopy that revealed diverticulosis and the surgeon hand wrote “no complication of diverticulitis scope passed easily”. 2 months earlier I was dealing the a diverticulitis flare, so I believe the ABX were key to addressing it.

I get a contrast MRI annually to keep an eye on some cysts on my pancreas (IPMN). At the end of the latest report (July/22) it mentioned “signs of colonic diverticulosis”.

I haven’t noticed thirst as a related symptom but if I eat something out of the ordinary, or eat too much fiber and not enough water, I do have a return of mild classic diverticulitis symptoms which requires a diet change. So presenting symptoms can wax and wane.

It’s been a challenge accommodating for all my health conditions in my diet (PMR- low carb/sugar/salt, cholesterol that’s creeping higher, extra calcium rich foods to combat weakening bones). Geez, some days it’s low fat/high calcium yoghurt and homemade soup/broth.

You’ve been through a battery of tests but it sounds like you’ve received little in the way of treatment. Perhaps that is why your symptoms have persisted. Our medical team should want to help us alleviate the symptoms that impact our quality of life….ongoing pain being at the top of the list! Having the health professionals communicate with one another helps them see the big picture. I am fortunate that my GP, surgeon, and rheumy are all in the loop. My GP gets the results of all tests.

[SheffieldJane in reply to PMRCanada]

Thank you for your patient helpfulness as ever. X

[greengages in reply to SheffieldJane]

this is interesting as I was diagnosed with diverticulitis in December (scan and sigmoidoscopy) having another bout of it now (given antibiotics, refused to go hospital for intravenous antibiotics and to be monitored- had a fever and heart rate 118 resting) Do you think the pred can cause this and how does the yoghurt help when taking the pred please. Somewhere in this scatty brain I recall reading something about this but I can’t recall . Thank you

[jules1955 in reply to greengages]

Hi greengages, pred should be taken with food, sometimes when taking very early you don't always feel like eating too much and yogurt is good as easy to eat/swallow.

[greengages in reply to jules1955]

Thank you Jules normally take mine with my porridge on a morning as I have no trouble eating anytime, but wondered about the yoghurt Thank you

[PMRpro Ambassador in reply to greengages]

Some take their pred long before getting out of bed, some at 2am - taking the tablets with yoghurt is easy, no need to get out of bed!

[greengages in reply to PMRpro]

thank you for that, that’s a great idea, is there a link between pred and diverticulitis we have a good diet and organically grow our own veg and berries Thank you for your help this site is amazing

[PMRpro Ambassador in reply to greengages]

Not that I know, Diverticulosis, the formation of pouches in the colon is pretty widespread at our age and diverticulitis occurs when food gets stuck in the pouches and bacteria get into action. Fewer than 20% of patients with diverticulosis develop diverticulitis. There is some thought that long term pred has some protective effect but at the same time may mask perforation by making the symptoms less apparent. There should be a low threshold for concern in long term pred patients with abdominal pain.

I'm not really sure what sort of diet reduces the risk of diverticulitis, to some extent it depends on the person. Patients with diverticulosis are told to eat lots of fibre and drink plenty to keep stools soft but if diverticulitis develops then a low fibre diet, even a liquid diet in the early stages, is recommended.

[greengages in reply to PMRpro]

thank you PMRpro have tried quite a few things these last few months but not the low fibre or even liquid one. I will give that a go until the inflammation settles down. Thank you for prompt answer. Seems I could be blaming pred too much ( just had cataracts done in one eye, optician blames the pred for their hastening) so now putting everything wrongly down to pred. Thank you again for advice it’s really appreciated and helpful

[tempusfugi in reply to PMRpro]

I'm thinking of trying the 2 am bit but, I'll have to get out of bed to clean my teeth I'm thinking, coz I'm already seeing a periodontist for gum disease and don't want to make things worse.😕

[AuthorJ in reply to tempusfugi]

hi Tempusfugi. I gave the 2 am pred a good try. I would have a banana at my bedside so I would not have to get out of bed. It was nice to get up in the morning without any aches. However I usually would not be able to go back to sleep. I truly value my sleep and all it’s benefits so I have gone back to having my pred at breakfast and am back to 7/8 hours of sleep. The minor aches disappear soon enough.

[tempusfugi in reply to AuthorJ]

Hello AuthorJ, thanks for your comment. I can see it could be a problem if you can't get back to sleep easily. Fortunately, I don't have to worry about that (I was up this morning because of pain in both arms. Made a cuppa, took a Paracetamol and still went back to sleep for a few hours). Added to that I am a 'late bird' so 2 am shouldn't be too bad for me.

I appreciate what you say about the value of sleep though and am glad that your minor aches disappear soon enough (mine do too, at the moment). Have you tried splitting your dosage twixt morning and night, btw? I see a lot of people seem to do that.

[PMRCanada in reply to greengages]

My surgeon who diagnosed diverticulitis in the hospital (and performed my colonoscopy) shared the following risk factors for diverticulitis:

- Aging. The incidence of diverticulitis increases with age.

- Obesity. Being seriously overweight increases your odds of developing diverticulitis.

- Smoking. People who smoke cigarettes are more likely than nonsmokers to experience diverticulitis.

-Lack of exercise. Vigorous exercise appears to lower your risk of diverticulitis.

- Diet high in animal fat and low in fiber. A low-fiber diet in combination with a high intake of animal fat seems to increase risk, although the role of low fiber alone isn't clear.

- Certain medications. Several drugs are associated with an increased risk of diverticulitis, including steroids, opioids and nonsteroidal anti-inflammatory drugs, such as ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve).

She also mentioned possible genetic connections and both my parents suffered with diverticulitis, especially my dad who had to have surgery to remove part of his intestines. I had 5 of the risk factors!

[greengages in reply to PMRCanada]

Apologies thought I’d replied must have forgot to send!! I’m slim, 66 years, don’t smoke do yoga and walk dog everyday. We grow and eat our organic food, fats come from avocados nuts etc. Both parents and brother died young, sister has a had a sluggish bowel all her life but no diverticulitis or anything like it. So have 2 risk factors my age and I don’t count that as being old and I’m on steroids. Perhaps it is genetics if parents had lived longer it may have developed. Thank you for your reply it’s very interesting to hear about others and what they have discovered. I hope you stay well and No diverticular flares

[SheffieldJane in reply to greengages]

My trouble coincided with my adding Tocilizumab to the mix. I think my abdomen had been grumbling mildly at times prior

[greengages in reply to SheffieldJane]

that’s really interesting SJ these drugs obviously affect the biome of the gut bringing their own unique problems I’m not on that only pred but I do sometimes wonder that since starting steroids they have brought problems and yet for others nothing. It must be genetic or our unique constitution I doubt whether we will ever have full answers. Stay well and thank you for your reply

[Koalajane in reply to SheffieldJane]

I have stopped getting blood tests for ESR as I believe symptoms are more important

[AuthorJ in reply to Koalajane]

TRUTH

[agingfeminist]

There are many of use who find symptoms much more reliable than blood tests. A routine annual blood test is useful to check lots of things but it is better to taper according to symptoms.

[Mayadill in reply to agingfeminist]

True, true. I have routine bloods every 2 months and like knowing Hb, urea and so on but so far as a measure of PMR goes, bit of a joke, never found any correlation between symptoms and ESR and CRP. I know what my PMR's doing when I wake up in the morning!