Prednisolone query: Does anyone else with PMR and... - PMRGCAuk

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Prednisolone query

Doraflora
Doraflora

Does anyone else with PMR and on prednisolone have to take Omeprazole to protect the stomach and Alendronic acid to prevent bones crumbling?

My gp diagnosed PMR via phone consultation and prescribed 15mg of prednisolone.Within 24 hours my symptoms had improved and now nearly 4 weeks later I hardly have any symptoms. She’s now reduced the amount to 12.5 mg of prednisolone with a view to reducing even more.

Also, has anyone else suffered with heavy, droopy eyes since taking this med?

71 Replies
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I’ll leave the PMR bit to those who know. It is routine to prescribe a stomach protector with Pred, though some are just fine taking Pred with some yogurt (not me). See how you go with it. As for the bone protector, that is more questionable regards prescribing just in case as it is not without its issues. It does have its place but I said I wouldn’t touch it without having a DEXA scan first to see if I really needed it. Although I had some osteopaenia (not ‘porosis’) I was able to just take vitamin D and calcium as a supplement. There is time because the bone effects don’t kick in for about 3 months according to a Rheumy I saw.

Re the eyes - Pred made me droopy eyed and sleepy for a few hours after it kicked in. However, it may be that you are starting to get the puffy eyed and face Pred effect which is made so much worse by salt. Some can’t even take hidden salt in food without it puffing the face; it is quite individual.

Doraflora
Doraflora
in reply to SnazzyD

Wow! I’m glad I joined this site. You’re all so helpful and I’ve learned a lot! Like not feeling forced to take every med which has been prescribed.

I’m very wary about taking an abundance of meds, so I think I’ll leave off the AA until I’ve had the bone scan.

Hidden
HiddenModerator
in reply to Doraflora

We have been there. I took Alendronic acid 4 or 5 times. My dexa scan was fine. The last one even said I could rely on dietary calcium if I wanted.

PMRpro
PMRproAmbassador

I take neither and never have done apart from 4 tablets of alendronic acid before I had a dexascan which showed my bone density to be almost "normal" and the two scans since have shown it to have remained OK. It is not inevitable that you lose bone density with pred - but it does need to be monitored. Calcium and vit D was adequate.

Hi yes I take both with no ill effects . Like you I started at 15 mg. doc tried to reduce me to 12.5 after only 2 weeks but hopefully you will be ok. Then 10 mg : after that I would follow the dead slow tapering they recommend here. Also splitting the dose a la Dorset Lady really helps. Good luck!

The trouble with Omeprazole is that it can cause aches and pains, just like PMR (side effects).

One tip, always read the side effects on any new prescription and check with your Pharmacist for compatibility. GP's do not know as much as Pharmacists do about drugs. Always check with the Pharmacist before buying any Over the Counter (OTC) items.

Is your pred enteric coated (coloured not white). If so you really should not need stomach protection, if white ask your GP for a different one. Many people with PMR do not have any stomach problems.

Try a plain, preferably a organic Yoghurt (Yeo Valley make one with a pro biotic in it) with a teaspoonful of Manuka Honey in it.

I had a Dexa scan within 4 months, bones 97% and after 5 years on pred (GCA) bones still 97%.

Doraflora
Doraflora
in reply to jinasc

Thanks for that, Jinasc. My pred is whit, so I’ll take on board what you say about asking for a coated one. That way hopefully I can leave out the Omeprazole.

After reading all these helpful replies on here, I think I’ll leave off starting the AA for the time being.

Just one question: you mention Greek yoghurt. Can you suggest an alternative thing for those of us who don’t like yoghurt?

I take 2 small cubes of cheese with my pred and have for a long time and after trying other things. it suits me.

Well, I’m such a fussy so-and-so I don’t like yoghurt or cheese! Wonder if cake or chocolate would work instead 😂

Since pred just has to be taken with food, go for it !! Not to much, though !

Ha, I was only joking. Onwards & upwards - eh.

Hidden
HiddenModerator
in reply to Doraflora

A piece of chocolate especially if dark would work. 😁🍫

Hidden
HiddenModerator

Hi, if you are in the UK you can ask for coated pred and therefore not have any need for omeprazole. It always strikes me as weird that drs prescribe pred and a ppi, the latter of which is also potentially bad for bone density, then prescribe Alendronic acid. Coated pred, a dexa scan then decide whether to take AA. It could be that you only need the coated pred and adcal (calcium and d3). A much better combo than the regime the Dr has put you on.

Doraflora
Doraflora
in reply to Hidden

Thanks poopadoopy. Your answer says it all.😁.

Because I’ve never been on meds before (i’m 67), I felt compelled to take everything that has been prescribed, but all the comments on here have dispelled that theory.

SnazzyD
SnazzyD
in reply to Doraflora

I ended up on coated Pred because I couldn’t get on with any type of stomach protector and can’t tolerate dairy. I had to argue that the cost is about the same as non-coated + PPI and said I would buy my own Gaviscon for bedtime when I still needed a bit of something.

Lonsdalelass
Lonsdalelass
in reply to Hidden

Here, here. I ditched the lansoprazol after two weeks and never took the Alendronic Acid, after insisting for a dexa scan. Also had to insist on enteric coated pred and got them. Changed my doctor, and have also don't take the Adcal any more as it gave me heartburn, so make sure I have enough calcium in my diet, and I take Vit D3 and K2 too. Had no gut or bone problems so far.

Hidden
HiddenModerator
in reply to Lonsdalelass

I was really lucky 17yrs of lansoprazole and was ok bonewise. But took a month or two to taper off.

Lonsdalelass
Lonsdalelass
in reply to Hidden

Blimey, that's a long time! Glad you're off it now.

Hidden
HiddenModerator
in reply to Lonsdalelass

I'm a big woman so suspect my bones are concrete 🤣😂🤣

Lonsdalelass
Lonsdalelass
in reply to Hidden

Ha ha, hope not. 🤣

I was never prescribed with a stomach protector and over 3 years later do not feel the need. I always have my Pred with food and it has not caused a problem.

As for Alendronic acid I was prescribed it and took 3 tablets before my doctor rang and told me not to have any more AA until I had visited the dentist. I read up about it and never took another one. Another doctor sent me for a bone density scan and was told I had mild osteopenia and to carry on with calcium and d3. A year later and my bone density is normal. I also walk over 10,000 steps each day.

Doraflora
Doraflora
in reply to Koalajane

That’s really reassuring to hear. I’m not going to take the AA at the mo. I’m like you, exercise is very important to me and I’m also lucky in that I don’t have a weight problem.

I've taken prednisolone for some months now for GCA. I've taken Dexilant for several years for Gerd and ulcers (no more) and was taking Ranitidine which was pulled last month. I'd had a stroke back in 1982 so I can understand the aspirin but I'd also had a stomach bleed back in the 90s and never taken an aspirin since that time. After my diagnosis last August I have to take a full 325mg aspirin per day. Since they pulled the Ranitidine I've had no stomach problems.

I take Alendronate Sodium 70 mg, once a week for my bones. I do have osteopenia. The more experienced gals can tell you and me if that is the same or similar to your alendronic acid.

Be well and safe!!

PMRpro
PMRproAmbassador
in reply to Grammy80

Yes, much the same.

In the most recent recommendations for management of GCA they have removed the concept of using low dose aspirin as the risks outweighed the benefits in GCA.

Grammy80
Grammy80
in reply to PMRpro

I knew I could count on you...take good care.xo

These drugs are routinely offered. I took Omeprazole for some weeks, then stopped and used Greek yoghurt instead. I declined Alendronic Acid having had 2 good DEXA scans ( bone density).

My GP said she’d put on my record for me to have a bone scan once hospital apps are running again, so I think I’ll leave off the AA until then.

Yes my GP has also asked me to remind her to book me a DEXA scan once things return to ‘normal’. I keep my vitamin D3 levels high anyway which is recommended because of my MS, so hopefully they still are at a good level as the Pred can leech that too she said ...

Hi I find that Prednisolone taken alone makes me very dizzy and sick. It is advisable to eat something a little before taking I have a proper breakfast first and then take them shortly after. I have found this helps and the effects of illness are non exitstent then . Give it a try cant hurt might be of benefit..

On the pack it should say take with or just after food

Phil

Doraflora
Doraflora
in reply to Chezz123

Yeah, I usually have the pred after breakfast, but by mid day/early afternoon that’s when the heavy eye syndrome kicks in. I’m hoping that now I’ve just started on the reduced amount (12.5 mg) it might gradually abate. ✌️

PMRpro
PMRproAmbassador
in reply to Doraflora

Have you tried having a siesta in the middle of the day? Often a short rest then will give you far more useful time later in the day. Always worth a try - especially at present when you have to be at home.

Doraflora
Doraflora
in reply to PMRpro

I’ve been trying to work through it but succumbed to a little rest earlier this afternoon. I think it’s helped😁. I then liven up when it gets to wine o’clock....

PMRpro
PMRproAmbassador
in reply to Doraflora

Exactly! If you wilt in the afternoon it is your body telling you something. Listen to it.

I suffer blurred vision a little while after taking my 25 mg of Pred after breakfast. I now have mouth ulcers, again probably due o the pred. I still have a tender head in two areas only on touching. Jaw still a little uncomfortable when eating. Wondering if we're still protected from going blind from GCA if on whatever dose of pred...this is my only concern. As regards PMR no problem with that at all....just the blessed GCA lurking in the background. Staying on the high strength of pred we get lots of side affects, reduce and we get 'flare up' So between a rock and hard place really. I still haven't started the alendronic acid as yet and will wait until hospital is scanning again to check my bone density. I am taking one omeprazole first thing in the mornings, told to take one a.m. and the other p.m. but leave off the evening one. I think I will ask for the coated pred next time I order.

Hidden
HiddenModerator
in reply to Staplehurst

I hope you aren't still reducing with those symptoms Anne. In the grand scheme of things 30mg plus isn't a big dose until those symptoms truly settle. Learn from grammy80 who has reduced sight in her remaining vision after being stoical (sorry for using you so blatantly Grammy80 😘)

Mouth ulcers .... uncomfortable. A couple of salt water gargles. But if using sea salt just a little as it can seem to burn a little. I hope they get better. 🌻👍

Staplehurst
Staplehurst
in reply to Hidden

Thanks Poops have messaged you

I thought my blurring vision was just due to my medication reduction...no GCA flare...well, I was wrong. Please learn from me. I didn't talk with the rheumy for two weeks and just kept switching glasses. By then, it was too late; now the vision is my remaining eye will never be clear or sharp again. He sent me to the opthalmologist but there was no prescription that would help. When was the last time you were seen? I know it is a difficult time, but I don't have to tell you, we just get one set of eyes. I still feel pretty fortunate, but if I knew then what I know now.......I'd be looking out of both eyes.

😎💗💖

I had my eyes tested a couple of months ago and all was good. I was in contact with my optician and told him about my blurred vision since being on the steroids. He said he'd be concerned if I still had blurred vision when wearing my glasses, which I don't. He left me his mobile number to ring him any time if I want to go over for a pressure test. Maybe I will arrange that and go next week. My eye pressures were good the last time they were taken. My eyes are good when I get up in the mornings then after taking the steroids all day they're blurry, but not once I put on my glasses. I think many people on the forum are finding the same.

Thanks Grammy

Point well taken, that was the scary part for me this last 'adventure'. I have six pairs of glasses....and no matter what I put on, no difference. I wish you all the very best!

Doraflora
Doraflora
in reply to Grammy80

My GP told me when first starting the pred that if I suffered with any vision problems to let them know immediately or go to A&E

Grammy80
Grammy80
in reply to Doraflora

Sound advice~!!!😉😉

I have been on prednisolone for 3 years for PMR... I have been taking omeprazole (I only take 1 a day and seem ok on that🤞)for nearly 2 years and I was taking alendronic acid for about 1 year for osteoporosis that the steroid had caused 😢 But last summer I had a most terrible episode with pain in my chest/shoulders area... it was the day I took my a/acid and luckily I connected it to that and stopped taking it. Saw a consultant and had an endoscopy which revealed I had a sliding hiatus hernia (which is a life long condition...it’s never going away and has changed my life more than PMR ever did😢) .... directly caused by the alendronic acid😢.... he said if I hadn’t stopped when I did then things would have been much worse 😢 I am now desperately trying to come down and off my steroids, I’m going to deal with my PMR drug free if I can 🤞🤞🤞 Good luck to you❤️

Doraflora
Doraflora
in reply to PamJCam

Oh crikey PamJCam that’s awful, but thank goodness you stopped taking the A/A when you did. Hope you can get off the steroids.

Hi, I was prescribed Omezaprole the moment my doctor put me on steroids for PMR over two years ago and I've never had any problems. Stay safe

Yes for droopy eyelids, yes for ppip. Always so much good info and support here. I've had other health issues but so many symptoms since dx with gca. I guess what I want to add is that sometimes rx are prescribed that really have serious potential side effects. I'm learning that in the end, I'm the one left with the symptoms of disease and/or side effects of rx. I'm the one responsible to learn all I can, monitor how I feel, and in the end make decision about rx. It's not easy to decline rx prescribed by Dr but you need to "go with your gut." I trust and respect my excellent doctors, but they're not the ones to live with consequences of the rx they prescribe. Good luck to you.

I’m presuming you mean A/acid when you say ‘rx’?

I meant it's my responsibility to learn about the RX I'm on because in the end I'm the one that has to live with potential adverse effects. For me the medications are: actemra, boniva, prednisone, dexilant, benzonatate, high doses of vit D2 and D3, a few other more minor rx taken PRN.

Last October, I too was started at 15 mg Pred and Lansoprazole (a PPI same as Omezaprole) and a week later when the PMR diagnosis was confirmed (pain much reduced as were the inflammation levels in the blood test) my GP prescribed me Alendronic Acid, which I was hesitant to take.

I was concerned about the Lansoprazole - given its possible side effects and an osteoporosis risk as bad as or worse than that of Pred. At a follow up consultation 1 month later with the GP, I asked if I could stop taking it since I have never had nor was having any gastric or reflux problems and she said to wait until my appointment with the Rheumy in 2 weeks time.

I also said I had not started the Alendronic Acid as I have long term gum disease with receded gums, and asked whether I could have a DEXA scan first to see whether necessary. She did a bone risk fracture calculation and said given my age, ex smoker, the Pred, etc. I was high risk and should start the AA and there was no need to have a bone scan. She gave me a printout of the calculation to discuss with the Rheumy.

Rheumy confirmed PMR diagnosis and instructed I start taper down to 12.5 for 4 weeks, then down to 10 mg and then 1 mg each month. She too refused to refer me for a scan, and said she considered it important to start the Alendronic Acid - so we came to a "trade off" and I agreed to start that and give up the Lansoprazole! (Which I did, and felt no side effects from either).

But most important I feel is that when the AA was prescribed, I was also started on Evacal (a chewable Calcium and Vitamin D capsule) that I have to take after meals, twice a day (to be taken at least 2 hours after you take the Pred). This should help protect your bones from the onslaught of the steroids. Following advice on these forums, I also take this with Vitamin K2 capsules - apparently this helps with the calcium absorption and diverts the calcium towards the bones rather than to other organs.

Hope this helps!

PMRpro
PMRproAmbassador
in reply to kalimche

Wish they understood that the frax score isn't really very accurate without a BMD reading - and as soon as pred is on the list it will come up as high risk. ..

kalimche
kalimche
in reply to PMRpro

Yes I know! I had consulted you kind lot here on the forums and did my very best to plead my case - but it fell on deaf ears, I am afraid!

Hidden
HiddenModerator
in reply to kalimche

And watch the chewable calcium...not good for teeth so make sure you rinse your mouth well afterwards and then gently brush 45 to 60 mins later. Or swap to adcal caplets.

kalimche
kalimche
in reply to Hidden

oh thanks for that - don't think I have heard that before!

Hidden
HiddenModerator
in reply to kalimche

Dental hospital....😁

Doraflora
Doraflora
in reply to Hidden

Oh but my Adcal tablets are also chewable Poopadoopy. My GP prescribed them but I’m going to ask next time if there’s an alternative i can just swallow

Hidden
HiddenModerator
in reply to Doraflora

I have the adcal caplets. If you think about it you can feel the chewables sticking to your teeth. 🌻😁

Doraflora
Doraflora
in reply to kalimche

Ah, my GP has started me on Adcal (calcium & d3) this week. It’s so frustrating that we have to take something extra to counteract any side effects of other meds we’re taking. It’s all a blooming gamble but, hey ho!

At nearly 68 I’ve gone from someone taking no meds at all to now having four different things! I consider myself lucky though.

kalimche
kalimche
in reply to Doraflora

Ah good - because that is what I thought seemed to be missing from your meds - given everything I have read here about protecting your bones! Good luck - and keep safe!

Doraflora
Doraflora
in reply to kalimche

Thanks Kalimche. You too😁

Doraflora
Doraflora
in reply to kalimche

Just wondered if anyone else on Pred has found their blood pressure raised?

I’ve got to monitor mine for thr next 7 days before seeing my GP. It did tend to be a tadgy bit high before from time-to-time, but I’ve just read that Pred does cause an increase.

PMRpro
PMRproAmbassador
in reply to Doraflora

It is a well known and listed effect of pred and many people experience it. Not sure if mine was up because of pred or from other things. Some people have raised BP with PMR and even more GCA - because the inflammation in the arteries narrows them and that raises the BP. So when they start pred - the BP falls!!!!

Doraflora
Doraflora
in reply to PMRpro

We can’t win, can we? Each drug seems to cause something.....hey ho.

PMRpro
PMRproAmbassador
in reply to Doraflora

That's life ...

I’ve been taking since I first got diagnosed. ( with the exceptions of days I forget)

My BP was already high pre Pred and I had already been on Amlodipine for several years. When my GP first put me on the Pred, I had to take daily BP records (I had a machine) and she was happy that they were dropping.... Must admit haven't looked since....!!

Doraflora
Doraflora
in reply to kalimche

My GP phoned today with latest blood results. All greatly improved, especially the markers. My eyes haven’t felt so droopy today so I’m on a bit of a high, plus my BP readings have been lower today😁

However, apparently my sodium level is slightly low so more blood tests on Friday to check again. I looked at a list of food which is higher in sodium and the majority seem to be crappy junky stuff which we usually avoid. Can’t win.

I did try and convince her to stop the Omeprazole (especially if I had the coated pred instead of the current white) but she insists I need to stay on it whatever😏

Hidden
HiddenModerator
in reply to Doraflora

Glad the pred is doing it job and the heady droopy feeling easing. The numbers should be down showing pred doing its work. Don't let them tell you PMR on the retreat because of that. It's just showing pred is working and keeping inflammation under control and now you are just looking for which dose is the lowest and still works.

Unless there is a specific medical reason like ulcers etc or you take aspirin that you need a ppi for, then I don't understand the thinking it's needed for coated pred. Remember they can prescribe but can't force you to take any medication. 🌻

Doraflora
Doraflora
in reply to Hidden

Yes, I guess. But my gp was adamant that I have to stay on everything the other day🙄. I’m no doctor so it’s a fine line what to do. However, I’m feeling so very much better (99.9%) and have no pain now.

Once things get back to ‘normal’ and I can actually see a doctor, it’ll be easier to chat it over. I just don’t like all this cocktail of drugs. I’d rather have an alcoholic cocktail 😂

Hidden
HiddenModerator
in reply to Doraflora

🤣😂🤣 yes it's a spanner in the health works isn't it!

Glad to hear your good results today! Ah well - win some, lose some!! I feel that you are so pleased to be pain free, that maybe you are forgetting that you will probably be on the long haul with this disease. You must take care not to think it is all gone away because you feel so much better - I am afraid it is likely that you will be taking Pred for 2 years at least. I know that I am guilty of feeling that.... like you I am relatively recently diagnosed (last October). Let us know what they say about your sodium levels.

Doraflora
Doraflora
in reply to kalimche

You’re 100%spot on there, Kalimche. My GP did say it would probably mean being on them about 2 years, but if I get reduced down to 10mg or lower then I’m happy to go with that. I just hope some of the other meds can be knocked on the head.

Currently on 12.5 mg it’s a blooming challenge trying to break one of the 1mg in half🙄.

I should get the last sodium results through on Monday. So FX that’s normal.

Onwards & upwards 😁

Hi I found I was a lot better when I stopped taking alondronic acid. You don't need to take it all the time

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