Heartburn

What is so confusing is Rheumy don't consider even a trial run of higher Pred, to see if head/blurry vision would improve. Seems like being up against a stone wall!  I have also been on hydocodone for pain, so that has probably contributed to heartburn. Thanks for replies!

Thank you so much. I know all the meds cannot be good on tummy. My pain sounds like what you described. I know not to take meds on empty tummy. What a journey we are on!  Not a pleasant on either!  Happy Valentine's Day to all the readers! 💘

I was sent to emergency eye clinic last year because of blurry ryes....nothing found, he said it was the pred.  Eileen suggested I split the dose, which I do, biggest dose am, with breakfast ....lesser amount evening meal, this has helped enormously....we are all different...worth a try...good luck.

Just FYI, I was warned by Doctor, if I take tums, to cut back on calcium since they have calcium in them.

I take 1/2 of my calcium with my stomach irritating drugs, this helps some, but the whole calcium citrate verses calcium bicarbonate...ugh... I'm back to citrate, also learned to not take all 1200 calcium at once, 600 is most body takes in at a time, so divide it morning and night. 

Remember you shouldn't take pred within a couple of hours of taking calcium in quantity - it interferes with the uptake.

Oh, lovely!!! I always did take it fairly close together!!!!!!! Maybe that's why I'm still on such pain!!!!!! 

 

Who knows! But it's the reason we keep saying pred for breakfast, calcium for lunch and dinner - but I obviously haven't said it enough recently.

First I've heard of this

i keep searching internet but only place that says it can be problem w corticosteroids is here in patient.info. So, not to really question you, but... can you point me in direction of this info ither than this sight? Or suggest better search parameters? Or better yet, I'm headed to pharmacist today, I'll ask them and if they say no don't take together then I'll chew them out! Ha, ha. 

Thank you.

Eileen, do you mean Pred interferes with calcium absorption? Or calcium interferes with Pred absorption?  I did ask pharmacist, and she agreed on calcium not absorbing as well with Pred, but wasn't real sure if interferes with Pred absorption, but said take 2 hours apart just in case. Over a year on Pred and no doctor ever said this, a nurse told me only take calcium 600 mg at a time otherwise not absorb. That too was news to me! 

The paper;

Prednisolone-induced Ca2+ malabsorption is caused by diminished expression of the epithelial Ca2+ channel TRPV6.

says

"...An in vivo 45Ca2+ absorption assay indicated that intestinal Ca2+ absorption was diminished after prednisolone treatment. ... In conclusion, these data suggest that prednisolone reduces the intestinal Ca2+ absorption capacity through diminished duodenal expression of the active Ca2+ transporters TRPV6 and calbindin-D(9K) independent of systemic 1,25(OH)2D3."

And in the merck vet manual it says "Glucocorticoids can increase renal excretion and decrease the intestinal absorption of calcium, causing depletion of calcium stores." - same applies here for all mammals.

So taking them 2-3 hours apart reduces that effect in the intestine. I think I remember seeing somewhere that they bind in the gut - so the effect may be reciprocal(I don't know). But the pred definitely reduces the absorption of calcium from the gut. 

You are a real gift and sent by God for all of us. Thank-you for your knowledge. You have answered several questions I had in one today. The intermittent blurry vision, when to take pred and with what. Also learned with this post about pred and Ca. I really appreciate this forum. Could I ask if there are any other members near Charlotte, North Carolina in the USA. I am assuming most members are in the UK or Europe. Would love to correspond with more members. Pat

Hi pat, I am in. USA, but not your state. I am in MI

Thank you Eileen, like Pat said. Wish you could get across to Drs here. I have several appt coming up on these various issues!  Wish there was something besides not eating, to help with the darned weight gain!  But, I would rather be able to have less pIn, and be more active, so I won't stop Pred, no matter what I have to fight!

Forgot to say, yes, on Zantac, too!  Will stop calcium with Pred, though

Cutting carb intake - above all processed carbs - has helped quite a few people in the 3 forums in the UK either avoid excessive weight gain or lose weight while still on pred. I lost the best part of 40lbs (I had it to lose and would like to get down a bit more but am now stuck!). Pred changes the way our bodies process carbs so removing the excess helps both the weight problem and helps avoid the other evils of high cholesterol and high blood sugar which can get as far as pre-diabetes and even full blown diabetes.

Zantac has far fewer side effects - and gastroenterologists wonder why GPs and other non-gut specialists are to taken with PPIs - yes, they probably do stop the production of acid even more effectively but at a price (literally and metaphorically).

Thank-you Judy93591. I appreciate you telling where you are. I live out in the country and don't really know anyone with PMR. It seems we hear more from the forum members in the UK but I don't know if it is more common there or here. My ancestors appear to be German-Swiss and maybe English. Just wish I could do more to feel better consistently. I am willing to try any and all suggestions for getting healthier. Pat

This site is based in the UK and this forum has been running for about 10 years or more - that's why most of us live here. There are several charities here in the UK and 3 different forums, this is just one. There is an attempt to get a US forum going again - there is a link on the info post - but I don't know how successful it is being. There were some in the US 6-10 years ago but they seem to have disappeared and the members at the time came to this site. 

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

PMR is more common in communities with a lot of Scandinavian ancestry. It is very common in Minnesota for example, especially Olmsted County where a lot of research was done on PMR. 

Eileen and Pat, Eileen, you have given soooo much more info than the Drs here know!  It seems they don't want any info offered to them either!  And it's our bodies going through this. I believe they are as puzzled by it as we are. I think if I were the Dr I would want to learn from my patients! LOL I and some of my symptoms seem to make the Drs at a loss!  This in turn is totally frustrating to me!  

Pat, I am a country girl, too. I am German, Scotch,and Irish. Quite a mix!  I get SO TIRED of each issue when it seems like on an upward swing. Oh, well!, try to stay positive, even if hard at times. To others on the forum, I am very thankful for all your sharing, and comments on all the questions I have asked! 

I checked in to that USA forum, but it required one to create another email address with yahoo, and I have enough to keep track of, so I didn't join.  This forum setup is so very smart and nice!

i joined one on Facebook, but it doesn't really inform you of new topics so I don't really go there either. 

Plus these European folks are so darn funny and cute!

 

No - we did suggest yahoo was perhaps not the best place to be! I suppose an email address with them might not be so bad but I don't see why you should have to ...

  

Why do they offer you an emoticom that NEVER works????????????

It wasn't meant to be the bad tempered looking one...  :-P

Funny! 

Hope it wasn't a Freudian slip! Ha, ha, ha... See I can't find the laughing emoticon! 

Hi, just as FYI, I joined back in beginning of this journey, and there wasn't much activity at all. I didn't like the FB one at all and got off that. 

This forum was very active about 5 or 6 years ago and then the powers that be decided to revamp the site. It was almost unusable for nearly a year which of course put a lot of people off and they joined the NE of England forum when it was set up. That had problems last year and IT is quiet at present. This one chugged along for a couple of years and then woke up and is the busiest I've seen it now. The third one is also pretty busy but quite different and nowhere near so international as this. i think I looked at FB once - not my style for support although I use FB every day. You have to to find out what your children are doing these days!

I am wondering how you are,Eileen. How is the flare? Has it eased any more?

The flare is fine - I'm back on 15mg though so it should be.

Been really weird the last few weeks though. I was feeling "strange" all morning so started checking my BP and, right enough, it was spiking high. I went to the GP and she said to go back to the full dose of Losartan I was on originally but which was halved because my BP was low in the mornings. So far so good for months - but since early January I have felt awful in the mornings, but do feel better as the day goes on. From one day to the next I went from being able to walk around the village no bother to struggling to get up the first slope! Out of breath, wobbly legs. The PMR symptoms were beginning to reappear too so we thought it was a flare - still do but we suspect an underlying infection.

She sent me to have a 24 hour BP Holter and I got the print out yesterday - very interesting reading!  My BP is silly low overnight (well under 100/70 and as low as 81/50) but went up to more like 140/80 after I get up in the morning about 9am until lunchtime when it goes back to a more normal 120/80-ish. And one 67/49 with a pulse of 38 at 11am where I know exactly what I was doing and how I felt - we'd just come out of the nice warm baker's where we'd been queuing for a few minutes wearing outdoors clothes for cold weather and then stood and waited until it stopped measuring.

This Tuesday I felt awful - with really bad sacroiliac pain. The GP rang the head of medicine at the hospital who has a special interest in GCA as well on the grounds that would cover all bases. Saw him yesterday and sent for bloods for other rheuma stuff and BNP, an indicator of heart failure just in case. Chest x-ray and ECG. Another appointment Monday morning.

And today I feel much better, not fluey, which I still did on Tuesday or I wouldn't have gone to see her. Walked round the village and felt OK - not outstanding but not like last week. I've done nothing all week - other than sitting at the computer and reading the papers... So - was it an infection that has hung around and I didn't wait long enough? I had had abx because of a ?UTI and for 5 days felt great but then it came back again. Bizarre!!!!!

Eileen, I'm sending you well wishes, good answers, good results, strength, speedy recovery, feel better soon!!! 😀👍🏻✌🏻

ha, wanted to send smilie with a kiss, but that might seem weird from someone you don't really know  

Thank you! Sometimes I think we know each other rather well on these forums despite it being a "virtual" friendship.

I have the result for the BNP - appears to be fine for my age so I'm not verging on heart failure yet   My CRP is at its usual level - <0.5 mg/dl. so the only raised acute phase reactant is ferritin which i never had measured before so have no idea if that is "normal" for me. and cholesterol - which probably means a discussion about statins...

i'm looking forward to meeting some "forum friends" when we are over in canada on holiday this summer. i met a lot of uk people when i happened to be in the right place at the right time a couple of years ago - we had a great time. mg/dl.="" so="" the="" only="" raised="" acute="" phase="" reactant="" is="" ferritin="" which="" i="" never="" had="" measured="" before="" so="" have="" no="" idea="" if="" that="" is="" "normal"="" for="" me.="" and="" cholesterol="" -="" which="" probably="" means="" a="" discussion="" about="" statins...="" i'm="" looking="" forward="" to="" meeting="" some="" "forum="" friends"="" when="" we="" are="" over="" in="" canada="" on="" holiday="" this="" summer.="" i="" met="" a="" lot="" of="" uk="" people="" when="" i="" happened="" to="" be="" in="" the="" right="" place="" at="" the="" right="" time="" a="" couple="" of="" years="" ago="" -="" we="" had="" a="" great="">

i'm looking forward to meeting some "forum friends" when we are over in canada on holiday this summer. i met a lot of uk people when i happened to be in the right place at the right time a couple of years ago - we had a great time.>

You are having quite a time of it and I am sorry. I realise any infection or virus plays havoc with our bodies and especially having PMR. Strange how our BP can fluctuate so much. I wouldn't have thought about heat and queueing having such an effect. It's good that you are having all the checks to discount any problems. I'm not long home from a supermarket shop which I hate but OH who normally goes has been laid low with a nasty virus for over a week.....just beginning to improve! Separate rooms has meant I have a big bed to myself and sleeping well. Bliss😀😀 Stood under a heater in the pharmacy awaiting OH's medication......nearly melted. I had to move but now wonder if it had any effect on my BP. Perhaps that's why some people faint. I've never fainted.....thankfully. It would probably need a tow rope to get me upright!!😳😳 I hope all these medical problems are resolved soon, Eileen. In the meantime as they say 'tak tent'

Isn't one's own bedroom WONDERFUL!!!!!!!!!!! OH has had an awful cough again - and waited for days to take his antibiotics. One night he started coughing about 2am and it just went on, and on and ... Mercifully he moved into the study which was still made up from my BP Holter and only returned last night. Nearly a week of sleeping all night - BLISS  

Yes. It's wonderful.😀 Not sure how I'll feel about the return but as OH is coughing so much it could be sometime yet!! Bedding was having to be changed every morning due to night sweats so that was the final straw. Easier to change a single bed. That has resolved but as the cough continues ....... I've been thinking about installing a small fridge and toaster ......perhaps a wine cooler. I can put on my bedside light and read whenever I want. Perhaps a glass of wine would be a bridge too far......on the other hand 😀😀

That all sounds very cosy - ideal! Why too far? 

Coughs and night sweats make me very twitchy - it was just the virus? Are you all sure?

Thank you, Eileen. Yes. I'm the same so made OH go to the GP and he's had blood tests and she phoned to request a 2nd lot plus another test. I think I know what she's looking for and she said nothing to worry about. Sweating has ceased and coughing is much less and improving daily. Bloods are checked regularly because of blood disorder. I think it has been a particularly nasty flu type virus which is going the rounds. I appreciate your thoughts.

Ok...what does OH stand for? All this time I thought it was husband's initials, but both of you have OH! 

Eileen, what at area of Canada do y'all vacation to?

I've been to western side many times back when I was dong ironman triathlons. Such gorgeous country! Calgary to Pentictin to Vancouver, in August when the roadside fruit stands were rampant! 

Other Half 

We have a meeting in Chicago in mid-July so beforehand we are flying to Chicago early and on to Calgary, have a bus tour down to Vancouver and then a cruise up to the Hubbard Glacier and back to Vancouver before heading back to the meeting. I will be in Vancouver for a couple of days in May as well when I attend a rheumatology conference in Whistler as a patient research partner. See what I suffer for the sake of PMR...

Oh wow! Never heard of that glacier cruise, I just looked it up, looks gorgeous !!!  Some day... We will do an Alaskan cruise, so good to know about this one! Thanks for sharing! 

I hope Lake Louise is on your tour, near Banff, another wonderful spot. 

I'm so excited for y'all.  sounds like a good reward for the good of PMR suffering...ha, much better without the symptoms of course!