Side effects

[aladymo]

Can new side effects develop the longer we are on pred?

[Soraya_PMR]

Yes indirectly.

As in osteoporosis leading to fracture. Or weight gain leading to increased OA pain. Or uncontrolled blood sugar leading to diabetes. Is that what you mean?

[PMRpro Ambassador]

If you aren't taking active steps to minimise the risk, yes. Cumulative dose (the total amount you have taken overall) is felt to be significant and 10g is said by Prof Dasgupta to be a significant threshold - OTOH, my cumulative dose is WAY over 20g and I have no identifiable adverse effects.

Anything in particular?

[aladymo]

My feet are burning and toes sensitive. Some Dizziness and heart palpitations. Dr yesterday told me I’m not reducing fast enough (started 60mg down 5 a month now 2.5 month from 30) can choose side effects or try 2.5 every 2 weeks. Says it’s poison and wants me off. I did not have the side effects when I first started. ( October)

[Yellowbluebell]

Pred is not poison, it's the only thing that gives us back a sort of normal life. Some gp's and rheumatologists seem to think that coming off pred in as short a time as possible is the best way but pmr will take it's own time and it doesnt respond well to tapering too fast.

[aladymo in reply to Yellowbluebell]

I really like my rheumatologist I was just surprised by his response because he could not wait to get me on the drug now he can’t wait to get me off! He was not upset, he told me to do what my body wants but there is consequences. I was just curious whether I could get more side effects the longer I stay on and slower i taper.

[Yellowbluebell]

I have only had diagnosis since Oct 18 so not experienced enough to give advice on long term side effects but I can see pmrpro has already responded to that bit. Its.not logical to say you are not tapering fast enough but also tell you to do what your body wants.

[aladymo]

Its logical , I probably didn’t post it properly. Thanks for your input.

[SnazzyD]

I think you get an accumulative effect so that you start to feel it as time goes on and it depends on dose too. Therefore it can seem like side effects are new. Some things like face shape, bruising, muscle wasting and all the problems that go with that take a while to kick in. I got to about 30mg a few months from starting at 60mg and definitely felt “preddy” (can’t describe it) and overloaded with it so I was desperate to get it out of me. Hair loss if it happens is often delayed. I have new pains 2 years down the line due to the consequences of muscle laxity and fragile

ligaments. If one doesn’t control blood sugar, sustained rises will also have an effect eventually, so that’ll seem new. Is that what you mean?

[HeronNS]

I think so,especially something like muscle weakening, thinning skin or increased fatigue as I've found. But some of that can be attributed to aging anyway. I do think pred speeds up the aging process.

[stonecreek in reply to HeronNS]

tell me more

[aladymo]

Thank you everybody appreciate the responses and knowledge.

[Blearyeyed]

Everybody else has mentioned all the usual suspects in side effects that can grow over time.

Many because of the way long term steroid use ( of most sorts) can have on blood sugar , calcium and bone health , and collagen production .

Taking lots of the tips on diet and lifestyle we get on here help reduce many of these side effects , even if you are on Pred longer than your Rheumy would want.

Some side effects go as you reduce , like Moonface , Pred Insomnia , Hunger and weight gain.

Some pain will change as you reduce , as sometimes other muscle or nerve pain can be felt now Pred doesn't mask it .

Some side effects can increase over time , like muscle weakness and laxity if you haven't been able to cope with any exercise for a long time which can slow recovery.

Or Fatigue , which if you didn't have it during the beginning , can hit like a sledgehammer before your adrenals take over from the Pred again near the end of the road.

But , despite the side effects it does seem that not rushing is the key to success .

If you want to win the race quicker it is actually better when you taper to be a tortoise not a hare.

Listening to your body , building it up gradually as you go , and letting your system balance between tapers seems to help reduce the overall effect it will have long term.

Pred is a friend even if it has a sting.

We often forget just how bad the pain and lack of movement was when we didn't have Pred , especially if we were lucky enough to get a quick diagnosis .

It's then that the side effects make Pred into a criminal rather than the hero it actually was for most with GCA/ PMR.

Having spent time on doses below what I required I know I am happier to have the side effects and monitor them then go back to that level of Pain again just to be off Pred quicker or part of Club Zero. One day .... Just not any day soon for me.

Good luck with it all xx

[stonecreek in reply to Blearyeyed]

Very good info. Thanks. I will NEVER forget the pain prier to Pred.

[maria40]

I developed SVT some nine years after starting pred. Could have been unrelated but I've seen a few people on here mentioning palpitations and arrhythmias after taking it for a while

[HeronNS in reply to maria40]

I wonder if these side effects are an indirect result of pred having an effect on our electrolytes? I know that after I started to take in more salt (I must have become sodium deficient) a sort of skippy heartbeat I had vanished and hasn't returned. Been a year now. Apparently either too much or too little can have this effect.