Pains

[Cosmos22Marigold]

Hi all things are getting better except bad headaches. Dr said to try 19mgs and then 18 mgs on alternate days. Coming down from 20 to 15 mgs was too quick. My pains have gone completely in my shoulders and arms in less than two weeks. Is this normal. Mind you I'm happy about it but wondered if you all had the same experience. Still giddy and a few shakes but otherwise OK. Thanks for all your advice. It's so helpful and stops me worrying unnecessary.

[DorsetLady PMRGCAuk volunteer]

Hi,

Glad to hear your pains in shoulders arms have improved - that’s good, but must admit am a bit concerned that you still have headaches.

Did you change from taking your Pred in the morning to evening to see if that helps as suggested in previous post?

Perhaps you should try that for a week so you can advise doctor if that makes a difference. If it doesn’t then I think she needs to investigate that a bit more seriously....would hate to think it’s GCA.

And yes, for sure the drop from 20-15 was too big.

[Cosmos22Marigold in reply to DorsetLady]

I'm not used to computers. Just lost everything I typed to you but I'll try again. I feel good this morning and took 18mgs last night but I'm not sleeping well. Just seem wide awake. My Dr said he will sort my headaches out when I get adjusted to the steroids. Can't get a face to face talk at the moment can we. I shake a bit in the mornings then it subsides. Is that usual. I have suffered from vertigo for about 40 years so he wondered if it was to do with that but the pain is so different. Vertigo is the balance in my ear. I certainly feel better than I did. All you write is so helpful.

[PMRpro Ambassador in reply to Cosmos22Marigold]

What is the pain like? Where? Does paracetamol help?

[DorsetLady PMRGCAuk volunteer in reply to Cosmos22Marigold]

Unfortunately Pred does affect sleep (and for some it does make them feel shaky ), but if taking it at night helps with the days -it's a bit of a Catch22 situation - you have to decide what you can cope with best.

Not sure he should be leaving headaches - he might be right and they are steroid related, but they may not be.

A PMRpro asks does paracetamol help, and can you explain them a bit more...are they like ones you've had before, or completely different?

[Cosmos22Marigold in reply to DorsetLady]

Headache are totally different from the vertigo. Much more severe but these last two days seem to be much better and easing off a bit. I know it's all trial and error when first diagnosed but when you keep telling the Dr about them and they don't seem concerned then it's worrying and not helping the condition. However the latest Dr said he will look Into it more so with his comments and with all the help on the forum I am more settled. Thanks to everyone for your help and advice. When I have had reasonable good health in my 82 years it has all come as a shock but I look after my husband and need to be well. I think stress is mentioned for one of the causes and I have really had my share in the last 6 months so maybe that's how it came about. Who knows. Just need to settle down and get on with managing this. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Cosmos22Marigold]

Stress most definitely a factor ---for most of us. Better news about headaches -but do monitor them.

[Cosmos22Marigold in reply to DorsetLady]

Will do and thanks for your time sharing. We are all In sad times but better things to come for all of us I hope.

[123-go]

Hi Cosmos. Yes, it's quite normal for pains to go after less than two weeks on Pred and it's good to hear that's happened for you. A month at least on 20mg Pred is needed to get control of inflammation so I wouldn't be trying to reduce yet even though your pains have gone. Have you tried paracetamol for your headaches? If you have and the headaches haven't eased you should ask your GP about having investigations for GCA..

[PMRpro Ambassador]

I do have to agree with the others - the severe headache is concerning.

[Jackoh]

I would imagine too that his suggestion of alternating 18/19 mg certainly for me anyway just wouldn’t have worked out smoothly I could only do a 1 mg reduction and that was using the DSNS method. You might want to look this up on the pinned posts on this site and see if that method would suit you more. You can still drop 1 mg a month on this method. 💐

[Cosmos22Marigold in reply to Jackoh]

Thanks for that. I'll look it up. I was just deciding what mg I should have tonight but it will be 19. I am eager to get off steroids but I don't want to rush things and make it worse. Will see how things go but I do appreciate all the comments from people who are going through this.