Hi all, just went on the forum to see the replies to a question about stopping the prednisone because of the side effects.

[Buenavista]

Why has it been deleted? I was very interested to see the replies, because I have many side effects.

Regards

Buenavista

[Pipistrelle]

I don;t have an answer regarding whether the thread was deleted, but I would say you would not want to stop except under guidance from your rheumatologist, firstly, as simply stopping can cause serious and even life-threatening illness requiring emergency treatment as your body is dependent on the level of the current dose and cannot just be cut off). Secondly, there are other treatment options if prednisone cannot be tolerated but these need to be worked out with your doctor. Just opting for over the counter painkillers leaves a person with PMR at serious risk of cardiac problems or stroke, as well as developing GCA, and this is one of the reasons steroids are used for PMR.

Another point would be whether you are just starting preds as the side effects that can come with it do tend to vanish as the dosage drops. The threshold at which they start to disappear for most people is about 10mg daily, so the period at which one has to tolerate side effects tends to be short as most people get from 20 or 15mg -- starting dose for PMR -- to 10 isn't too long.

If you have GCA then you def would never want to just stop prednisone, as stopping it risk blindness and very serious illness. There again can be alternatives but only taking painkillers would be alarmingly dangerous. Untreated GCA is considered a full blown medical emergency.

I hope that helps.

And yes people do get off the steroids. I had PMR for two years and came off steroids in April.

[polkadotcom]

It's possible that the poster has deleted her thread, there is no admin reason for the deletion. These things do happen from time to time.

[Buenavista]

Thanks for your in depth reply

When I was on 30mg of pred and went down to about 12mg, there was no problem. Then going down to 10mg and lower, the side effects got worse.

My rheumy number 2 said he wants me on the steroids until at least January next year. It's lucky I have a very high pain threshold, so this means the pain does not become to much of a problem. I stopped taking the liquid anti-inflammatory 3 times a day (on the advice from the forum). Also, I now take my other medication at different times. At that time my head, which is the worst side affect, cleared for about 6/8 weeks. Then it came back with a vengeance. It looks like I will have to put up with it.

I like your comments on what does it feel like to be normal, one day would be good.

Best regards

Buenavista

PS I saw a question on Tinnitus, if any one wants any help, please ask. As I have had it for about 36 years due to clay pigeon shooting. Help in what helps it and what makes it worse.