Still having symptoms after 2 weeks

[masieg]

I was diagnosed and put on 10mg . After a week I did see an improvement in the pain and the morning stiffness went completely which is amazing. I also don't feel like I've been hit by a bus anymore ! Now 2 weeks later I haven't had any further improvement and still having pain washing and drying my hair . Is this common?

[DorsetLady PMRGCAuk volunteer]

Hi, Any reason why you’re were started at 10mg, it’s very low. Usual is anything from 12.5mg to 25mg, with 15mg being the more normal starting dose.

You need to speak to doctor, advising what’s happened, and suggest you raise the dose to 15mg.

10mg does prove you have PMR, but it’s obviously not enough.

This might give you a bit more info - healthunlocked.com/pmrgcauk...

[masieg in reply to DorsetLady]

I am seeing a Rheumatologist who started me on that dose as i'm a small frame and my bloods were all normal. I'm seeing him tomorrow so hopefully he will keep me on this dose until its completely resolved. Its made such a difference already that I could live with this !

[DorsetLady PMRGCAuk volunteer in reply to masieg]

You might be able to live with it.....but uncontrolled inflammation can still cause issues. And if you get side effects from Pred, which you probably will, even at 10mg, it’s a bit of a lose, lose situation.

You might find that an increase to 12.5mg is enough.....

[PMRpro Ambassador in reply to masieg]

Size has relatively little to do with it - a study in Italy found that 75% of subjects got a good result in response to 12.5mg starting dose. The better results were achieved by small women but even for them it took time. The advantage of starting at a slightly higher dose is you get a speedy response - 10mg is often not enough even for small women and if it is enough you will be able to reduce quickly to 10mg anyway. But clearing out accumulated inflammation is important in the long run too.

[masieg in reply to DorsetLady]

Just for an update - went back to see the Rheumatologist who suggested I stay on this dose for a month and then start to reduce at 1 mg a month . Coming in to the last week now and all the pain has resolved except on one side of my shoulder which can be troublesome at times - I can't believe how I got used to living with the pain now ! I'm really glad I paid to go privately as my GP sent me off for physio and discarded my suggestion of PMR. Apparently GP's are told it can't be PMR with normal ESR and CRP! The only downside is I wake up most nights and have problems getting back to sleep - taking Sominex now once or twice a week - seems to be a common problem ?

[PMRpro Ambassador in reply to masieg]

Depends on the GP and their reading - I eventually had a GP who was less interested in blood results than in the symptoms and response to pred. Some are well-educated enough to understand when it says that most patients are over 50, most patients have raised blood markers, it doesn't mean that ALL patients fulfil those criteria.

[DorsetLady PMRGCAuk volunteer in reply to masieg]

Good, and yes disturbed sleep is a common side effect of Pred...but it’s a trade off......like most things. But it should improve as you get lower on the medication.

Just remember on the 1mg a month in future, just make sure you feel okay.....don’t just carry on regardless! Many people find 1ng too much, and try 0,5mg per month.

Even the guidelines say 1mg every one or two months depending on patient.

[PMRpro Ambassador]

It probably would be with a starting dose of 10mg! That is very low and while it does sometimes work, 15mg is more usual and more likely to work. The most recent recommendations say the lowest effective dose in the range 12.5 to 25mg - 10mg doesn't get a mention! If you only need a bit more than 10mg you will be able to reduce from 15mg fairly easily once all the accumulated inflammation in soft tissue around joints has been cleared out by the higher dose - I started at 15mg and some of the pain (hips, hands and feet) took a few months to disappear altogether.

[paulst955]

When I was first diagnosed I was started on 20mg and it took the best part of 2 weeks for full relief you where started on to low a dose. Go back to your GP and complain. Please don't try and rush down on pred it will only leave you in pain.

[Jackoh]

I always find it interesting that some medical practitioners, in my case it was my GP, in your case your Rheumatologist, think that you don’t need so much pred if your bloods are normal. My GP was of the opinion that my PMR was not so serious because my bloods were normal. 20% of folk have normal blood readings and normal blood readings do not equal less symptoms or less serious PMR. 💐

[PMRpro Ambassador in reply to Jackoh]

Nor shorter!!!!! Though as I say, to be fair my ESR was running at about 4 o 5 times my normal even if it was just in the "normal range"