Predisalone side effects.

[Rocketronzy]

I suppose I am one of the lucky ones I have been on predisalone for years with not a single side effect.

[SheffieldJane]

You are lucky Ronzy or pretty tolerant of minor things. I find that I let them trot on through my life without taking too much notice these days.

[Lucybud3 in reply to SheffieldJane]

Anyone have indigestion as a side effect from prednisone?

[Jackoh]

That's good to know Ronzy and may give encouragement to those who are fearful of taking them : that not everyone gets bad reactions.

[olive2709]

Just being nosey how much do you take daily

[Rocketronzy in reply to olive2709]

25 mg. doc reduces me down to one 5 inn mon because im going to see specialist. 😖

[PMRpro Ambassador]

Mine has depended - with prednisolone and prednisone I've had no side effects I could label other than the weight I had gained due to PMR-induced inactivity redistributed itself to the usual places. On methylprednisolone it was another matter entirely - weight gain, textbook Cushingoid, beard, skin and hair went mad! On prednisone - all disappeared ...

[Toenti in reply to PMRpro]

I suppose that some people are not much affected by meds,including prednisolon. I must be one of the unlucky ones. Tremendoes weight gain,Cushings,hair loss and total loss of confidence thanks to my weight. High bp,racing heart sometimes.Enough to make me want to reduce in a hurry. Which I won't as that causes flare-ups. After 18 months, I am on 13.5 mg sorry for the rant,but I had to let it out

Wishing everybody on this forum all the best and a fast recovery.

I want to thank PMRPRO and many others for their input. It has helped me along a lot.

Edith

[PMRpro Ambassador in reply to Toenti]

I had palpitations and raised BP - it was not due to the pred though. It is paroxysmal atrial fibrillation and was caused (the cardiologist is confident) by the autoimmune part of PMR. I know it was nothing to do with pred because I had had it and mentioned it to my GP during the 5 years it was beyond him to work out there was something wrong, it wasn't just "my age". He was OK for other things or I would have voted with my feet.

[jwb43 in reply to PMRpro]

Pred can cause palpitations though. It did for me. Because if I don't take Pred I don't have the palptiations.

[PMRpro Ambassador in reply to jwb43]

I didn't say it doesn't - but a lot of doctors will tell their patients with palpitations it is due to the pred. It isn't necessarily and anyway needs to be investigated and managed where necessary.

[Ciar in reply to PMRpro]

I know this is an old thread, PMRPro, but did your arrhythmia go away when you took steroids to control PMR? I developed arrhythmia for a few weeks before taking Prednisone, then it went away. Did not know that could be PMR.

[PMRpro Ambassador in reply to Ciar]

No - mine didn't go until it was treated with medication after a severe drug reaction that caused a/f and it was finally diagnosed. I realised after that, that that was what the previous episodes had been.

[marigoldb in reply to PMRpro]

Interesting to hear you have had atrial fibrillation. Jan this year I woke at 12.30am, heart pounding and dripping with sweat. I waited an hour, then rang 111 Uk, advised to get to A and E within an hour, as there was someone living nearby who could take me. Said if there was they would not send an ambulance. That being so, I left it a while as I thought my son or daughter hadn’t been asleep long. Anyway I rang 4.30 am, and my son took me, and we arrived 5.50 am, luckily all was quiet. I was put on heart monitor, seen by cardiologist A and E consultant, and eventually 9.am was given this tiny white tablet, and in 20 minutes heart went back to normal!, it had been going up to 200, not very comfortable!

Seen at our London hospital, as was due to have hip replacement. Tests said ok for anaesthetic.

I am on Bisoprolol at night time , and Apixaban am and pm, and so far no further occurances.

Mine is Atrial Flutter, by the way, and I have moderate aortic stenosis as well, and of course the PMR, osteoporosis, and osteoarthritis.

However I do manage to enjoy life most of the time, but do have pain when trying to do too much, and the awful fatigue kicks in

Interesting to wonder if mine was connected to PMR as well?

PMRpro are you on blood thinner as well?

Best wishes

[PMRpro Ambassador in reply to marigoldb]

Of course - that is probably the most important thing to reduce the risk of stroke due to a/f.

I'm on Pradaxa - one of the ones particularly recommended in a/f. I've had no problems at all with it. I was on a relative of warfarin for 4 years until suddenly we couldn't get the INR stable, it was swinging about all over the place for no apparent reason.

[Rocketronzy in reply to Toenti]

I am sorry to here that 😖Keep battling on 😉👍

[Klah in reply to Toenti]

Not to sound discouraging, but you are just 18 months in and it is hard not to focus on the dose. I am almost 4 years in and wish I had not tried so many fast tapers, had so many flares in trying....did not find this forum right away, or the DSNS method of tapering! Having the side effects from the pred makes it worse, I know, but there is no rushing thru this PMR. Hang in there😊

[BloomingtonIndiana in reply to PMRpro]

Regarding the issue of prednisone side effects, I am approaching the 24 the month of taking this drug for PMR. Currently at 2.5 mg per day tapering to 2.0 mg per day using the dead slow method. Fortunately my adrenal gland seems to have awakened.

My cumulative consumption of prednisone is around 3,000 mg. The exact number is on a spreadsheet.

If I am able to reduce to zero, is there any medical guidance on when the body sheds the effect of this drug.

Your daily comments are appreciated.

[DorsetLady PMRGCAuk volunteer in reply to BloomingtonIndiana]

Been off it for 11 months, and feel really good - was on for 4&half yrs, starting at 80mg. Dread to think ŵhat my cumulative figure was!

Can take anything up to a year for all hormones etc to settle, but the boost psychologically for me was immediate.

Good luck with your tapering.

[PMRpro Ambassador in reply to BloomingtonIndiana]

As DL says, it is said that it takes a year or so, sometimes more, sometimes less, for your body to get back to normal post-pred when you have been on it long term. Above all, adrenal function may not be reliable for that time so you should bear that in mind and are advised to still carry your steroid card, just in case of an accident or illness where you can't communicate your history to medical professionals, and also tell them before having procedures done (dentist and so on).

But you also have to remember you are x years older - and at an age where that x years is likely to have made a difference anyway

[BloomingtonIndiana in reply to PMRpro]

I appreciate your thoughtful, informed comments. I am fortunate to have a rheumatologist who diagnosed PMR, but my follow up appointments have been somewhat disappointing in terms of helping me to understand the progression of the disease. This support group and Kate Gilbert's book are far more helpful.

[Klah in reply to PMRpro]

How much do we have to worry about “internal” damage from the prednisone vs damage from the inflammation....is it a guessing game if you don’t have symptoms?

[PMRpro Ambassador in reply to Klah]

You are supposed to reduce your dose to the point symptoms reappear and then go back to the previous effective dose. So there shouldn't be much excess.

[SheffieldJane]

I think Dorsetlady said that it takes about a year to get properly back to normal. I suppose there has to be a survey of the damage too, weight etc wardrobe full of smocks.

[PMRpro Ambassador in reply to SheffieldJane]

At least you can take "fat clothes" in - adapting "thin clothes" is more difficult...

[Rocketronzy in reply to PMRpro]

Shall we start a sowing group. 😂

[Rugger in reply to Rocketronzy]

Vegetables? or should that be sewing?! (

[Rocketronzy]

Very true

[Rocketronzy]

Sewing. 😂😂 or sueing maybe😂

[Lucybud3]

Anyone have indigestion as a side effect from prednisone?

[PMRpro Ambassador in reply to Lucybud3]

Loads probably. Most doctors prescribe omeprazole with pred to prevent it. It has side effects of its own - and many people on the forums find that yoghurt helps protect their stomach just as well. Or you ask for enteric coated/gastro-resistant pred.

[Rocketronzy in reply to PMRpro]

Another problem maybe Side effects

Toothache ??

Did I read on hear about someone on here having problems

I went to dentist today and neither of us could tell which of my two big teeth at back is the problem.

So he left it and gave me Amermoxilin for a week

Ads pain killers only paracetamol 😳

But it’s so strange how pain comes and goes. In the waiting room it was intense but it included cheek bone and above.A bit like newralger (hard word 😂)

[Judioz]

I think I am like that as well. Seven years, but only taking 3mg a day now. Keeps the pain in neck, upper arms away. I originally had trouble with my legs, hips etc as well, so found it difficult to walk any distance. My legs are back to normal now. I do have curly hair! And a couple of fatty deposits - but that's ok!

[Gary1310]

I thought we were suppose to get off Prednisone as soon as possible. My Rheumatologist had me reduce to 0 in 11 months. I had a few twinges but not a real flare. I still walk funny, have fatigue but I have adapted my lifestyle. My swelling has reduced, my gut problems are about gone. I was diagnosed Jan. 2019.

[PMRpro Ambassador in reply to Gary1310]

You are meant to get off pred as soon as possible - but it is entirely dependent on how long the underlying autoimmune disease lasts. The pred cures nothing, it is an ongoing management strategy for the inflammation until the a/i disorder burns out which can be in any time span from about a year (very unusual) to several years.

All I can say is that I'm glad he's not my rheumy! There are some who insist that PMR lasts 2 years - if it isn't gone then it isn't PMR. However - a top name in the world of PMR has said recently that the 2 year PMR myth must be dispelled. A lot of patients end up suffering badly because of it.

[Gary1310 in reply to PMRpro]

Thank You…I think I am still dealing with something. Not exactly sure what. The initial intense pain (flare) was intense and appeared overnight. Initial prescription was 20 mg Prednisone and I immediately responded. A miracle! I liked my Rheumatologist, who was at Marshfield Clinic, in Wisconsin. He guided me though the 11 months. If not PMR…..wonder what it could be.

[PMRpro Ambassador in reply to Gary1310]

It could be PMR - about 1 in 5 are said to be off pred in a year or so but remain at a higher risk of relapse later. By 2 years maybe a third are off pred. Then a bulk seem to take 4 or 5 years of so and then some are real longterm patients who seem to form two groups - one on a low maintenance dose of pred and a few needing amuch higher dose for comfort. It suggests PMR comes in maybe 4 or 5 versions.

What we need above all is a reliable marker for GCA and PMR

[Gary1310 in reply to PMRpro]

Thank you. A clear diagnosis would be great! Whatever happened to me was a year or more of vague symptoms. Swelling of hands and feet, fatigue….a sore knee., constipation. Then suddenly a flare. I am still unable to walk any distance because of weak legs but have adjusted.