More or less steroids

[survivalist]

I have been trying to word a question for some time as a sort to rehearsal for a later treatment review with a GP I'm not looking for a definitive answer just some other peoples thoughts.

If I have inflammation that causes pain, I'm assuming it causes damage to the body ?

If I take higher levels of steroids I assume this reduces the inflammation, reducing damage to the body ? But the accumulated dose of steroids causes damage to the body ?

Therefore is it better to take rather more steroids accumulating more long term side effects or take less steroids and have more inflammation causing damage by that means ?

I am aware for many people there is no choice regarding the level of steroids they take but for many there is to a degree a range of steroid level that could be taken.

[PMRpro Ambassador]

You need the lowest dose that controls the symptoms as well as the starting dose did - in which case the inflammation level should be low and demonstrably so if you have reactive ESR and CRP levels. If they are down to normal when they were high at diagnosis there is little or no inflammation remaining. It isn;t a range of doses once you have tapered to find "your" dose.

Pred is greatly over-egged with regard to the damage it does - especially at PMR doses,

practicalpainmanagement.com...

[dancersize in reply to PMRpro]

I read through this and do wonder if what I have is PMR. It did respond well to pred so maybe it doesn't matter what it is. Added methotrexate a month ago and have just had a blood test so be interesting to see what change if any has occurred. I did have a RF of 45 in July 2017. Thank you for the link.

[survivalist in reply to PMRpro]

Decided on a 1mg increase from 8mg to 9mg to reduce inflammation on the logic of less inflammation is on balance of probability better for me than the side effects specificity at this level of Pred but I will test a reduction of Pred again as soon as I feel any significant improvements by a 0.5mg.

[PMRpro Ambassador in reply to survivalist]

Perfect!!! Exactly what I would say and do!

[PMRCanada]

I’d choose higher pred dose and risk the side effects. Not everyone experiences side effects of taking pred., or the side effects are manageable. Yes, some are very negatively impacted when taking pred, so I appreciate their experience and response to the question would very well be different than mine.

Too small a dose and guaranteed I will suffer pain, stiffness and lessened mobility.

Prior to PMR symptoms emerging I had a few chronic knee issues, but never any pain per se. Sometimes my left knee would “go out”, which was more embarrassing than painful. 6 months of unchecked inflammation in my knees rendered them with deteriorated cartilage and pain when walking on RIGHT knee. I’m awaiting knee replacement surgery (age 56). Now my weight and pre-existing ACL tear didn’t help and progressed the deterioration as well, but now I have every type of meniscal tear known between the two of them. More than once I experienced strains and sprains walking a short distance while I was awaiting diagnosis. In the end I was in a wheelchair when I went to my appt with GP when I was diagnosed.

So the answer is simple to me. Pred gave me my life back!

[survivalist in reply to PMRCanada]

I too had knee problems before taking Pred and its gone because of the Pred. I seem to be able to take a range of Pred with corresponding pain on the one hand and side effects on the other. I would have to take a level somewhere between 10-20mg to get rid of all the pain and stiffness altogether but I am sure I could tolerate a life on 7.5mg if it was good for me long term. This morning at 2.30am I decided to take 9mg instead of 8mgs to see how life is on 1mg more. I dont know if I'm going to stay back on 9mg for a long time . Its just to compare the levels. I dont appear to be hyper sensitive to pred levels like some other people where 1mg one way or another creates a criss flare etc. I just get more pain and stiffness or less pain and stiffness.

I put it down to where there's no sense there no feeling LOL

[Suffererc]

Always have to rehearse what I am going to say to my GP, because she always has an answer, the one she wants me to hear. If I question medication I get short sharp shift. In all tho I get pretty good treatment