Reducing advice

[Lacelady]

At the end of January I started on 9.5mg of Pred and after four weeks dropped down to 9mg, after about 10 days I had a dull pain in my lower back so going by the advice here given to others I went back to 9.5mg. I have stayed on this until the 22 of March and tried again. I have been on 9mg since then(8 days) but am now feeling the same dull pain.

My question is should I keep on this dose to see if my body adjust or go back up again ?

After reading the rule of thumb that if the pain comes straight away it is withdrawal but if it comes after a week or so it is too low, my guess is I need to go back to 9.5.

If this is so will I ever be able to get below this amount ? Or how long should I stay on 9.5mg ?

Thank you all for your wonderful advice and patience in answering the same questions over and over . I don’t know what I would have done this past year since diagnosis without you. I have had no advice or input from any Doctor, with your help I have been managing my illness myself.

[PMRpro Ambassador]

You will get lower - just not yet.

The low back pain may be due to tight back muscles - something often due to myofascial pain syndrome that is commonly part of PMR and even mainstream mdicine is beginning to acknoweldge that. I get physio to help manage it but heat also helps.

[Lacelady in reply to PMRpro]

Thank you for your advice ,it is very welcome. I will look into the physio idea.

[TheMoaningViolet]

I tend to wait 2 weeks before I decide that something is not working and as PMRpro suggested ger some help from a physio as you may have a completely different problem that needs addressing not least because it may be messing with your taper.

[Lacelady in reply to TheMoaningViolet]

Thank you I need to look into that.

[alangg]

My physio suggested that some muscles are subconsciously used differently by the body because of the pain from others that are affected by PMR. Therefore, those muscles can hurt more because they are doing things that they are not designed to do, or the muscles that have been unwittingly 'rested' begin to hurt when they are used again. In my case, it was muscles in my chest that were possibly working harder to help my shoulders in lifting and carrying things.

She recommended doing gentle exercises for all the muscle groups that can be involved in certain movements and to try and 're-train' my subconcious to use them correctly. This worked to a certain extent and made me think that it was probably not the lower dose of Pred that was causing the pain as it was a pain that I hadn't had at the onset of PMR.

[Lacelady in reply to alangg]

Thank you alangg that is very interesting. So it could be that I am using different muscles when active?

I think I will carry on for a little longer with this dose and see if it improves. I did think I might go up a 1/4 dose instead of 1/2 and see what that does if it doesn’t.

Thanks for replying

[PMRpro Ambassador in reply to Lacelady]

I don't see it that way - the usual muscles are used differently and subject to different stresses which makes them unhappy. It's like favouring one leg because your ankle hurts - your back muscles are unbalanced and tighten to protect themselves. And hurt as a result.

[Lacelady in reply to PMRpro]

So what I think you are saying is that I might have done something unusual and as a consequence my muscles have tightened up causing pain? Is it still possible it is because I have reduced my pred?

[PMRpro Ambassador in reply to Lacelady]

You don't necessarily have to have "done" anything - I have a scoliosis that makes my back muscles quite precariously balanced. The slightest trip, catching my foot on a step or my head as getting into a car can be enough - or carrying the shopping on one shoulder, a perfectly normal action you might think.

[Lacelady in reply to PMRpro]

Yes indeed . I am sorry to hear that you have that problem on top of PMR it must make life difficult for you.

I have taken some Paracetamol to see if it eases but I did that before and it didn’t make much difference which led me to believe that it was the taper. Which is what you suggest on the forum isn’t it?

Thank you for your help

[petros1931]

Have you checked paracetamol for a day, before you increase ? Try fractionally slower at 9 1/4 . Good luck

[Lacelady in reply to petros1931]

I have taken paracetamol before and it didn’t help so I assumed it was the drop in tables. I am trying agin just to see though. I intend trying 1/4 increase tomorrow Thank you for your reply