PMR

Are you having pain all day or just mornings?

It took me over a year to figure out that taking half the dose mornings and the other half at night gave me my life back.

good luck

What can also happen is, once the awful pain abates, one drastically ups activity and overdoes it- and pays a price with aches and pains. I found I injured myself very easily while not noticing it at the time.

Be very careful with prednesone. Many side effects.. outweighing some lessening of pain..weakening bones (contributed to a compression fractured vertabrae). Very important to taper off slowly, and l do stress slowly. l'm still dealing with chronic fatigue. ..double edge sword with this drug. Good luck

Have you increased your activity because you felt better? The pred has cured nothing, it just relieves the inflammation that causes the pain and stiffness - the underlying disease is still active and leaves your muscles intolerant of acute exercise. Do too much and you will get really bad DOMS (delayed onset muscle soreness) that will take longer to resolve than usual.

Alternatively, sometimes the PMR progresses and you need a bit more. Sometimes it can even progress to GCA - so if it continues to get worse, do see the doctor again asap.

PMR is life changing, so you have to slow down and smell the roses. All the steroids do is help the pain, the PMR has not gone away.

I think many would agree that 15 mg is quite a low starting dose. I started on 20 mgs and some start on 25. Try upping your dose. Also take notice of what others have said; don't overdo things because the steroids, initially, give you an energy boost.

Realise you may have a long journey ahead of you. Learn to be patient, learn about the DSNS ( dead slow nearly stop) Google it, method of tapering your steroids. Don't be tempted to rush things or you will end up back where you started. Remember that the median duration of this disease is five point nine years. Start cutting your carbs drastically now before you start to gain weight from the steroid use. Start taking a vitamin k 2 and calcium supplement for your bone health. Find some gentle exercise options like swimming or tai chi . Stay connected with this group forum it's invaluable!

Good luck, you will get there!

many thanks for your replies. x

I am having a phone consultation with my GP on Wednesday. i will raise my concerns then.

Hi LJDuguid, we all have had different experiences. My advice to you is to learn to listen to your body. It will make your PMR journey easier. Do not reduce your Prednisone dosage if you have any PMR pain. Have a bone density scan, so you know the conditions of your bones. Look into taking Calcium, Magnesium, vitamin K2 and MSM for bone health. The side effects of Prednisone are not pleasant, but it controls the inflammation, which must be controlled. My PMR was so bad at one point I could not walk and was in a wheelchair. Stay ahead of the pain, which will keep you ahead of the inflammation. Good luck on your PMR journey stay positive, active and try to smile. Here's smiling at you. 🙂☘

Advice to increase your dose is good BUT you are just starting out on this journey so this needs to be cleared with your doctor. Later when you are established on successful treatment you will, and should, have a lot of control over how you taper. Your doctor needs to know how you reacted to the 15 mg, and I suspect they will in fact suggest an increase is in order. But they need to know. There is always a chance that the diagnosis is in question so you don't want to muddy the diagnostic waters.

Let us know how you get on.

Hi,

Can I suggest that you cut out carbs (potatos, rice and pasta).

I have also gone to gluten free products, eating lots of eggs nuts and protein. Also lots of berries.

I have managed to reduce from over 20 mlg of predisolone in September to nine this week. I am sure that it is the diet that has helped. My GP also feels the diet has helped.

My bloods have returned to near normal. I am now trying to reduce by 1mlg a month but I have now gone to taking half in the morning and half before I go to bed.

This has enabled me to do more things in the mornings as before it was impossible because my head was not in a good place.

We are all managing this horrid situation individually, but I do feel positive that it has worked for me.

I couldnt even lift a cup in the mornings when first diagnosed.

Check with your doctor. 15 might have been enough to 'knock it back' but not keep it down, speaking of inflammation. Beware of big drops in mg and unnecessarily big jumps back up. Question every thing your doc does/says/prescribes. Is it a rheumatologist or another doc? You want a specialist in steroid use which is more rheumatologist than GP. These forums have taught me more than my doc has had time to educate me. But ultimately I lean toward his knowledge. I have learned invaluable understanding from forums in regard to what questions to ask my doc. Make list before you go!!