Prednislone

[cherrysteps]

I want to come off prednislone 15mg daily, as for the past month I have had a headache, that has now become severe, also have red moonface. I was diagnosed with polymyalgia rhuematica 3 months ago and have been taking this dose since. Bone density is normal and I got instant relief in my hips and shoulders, but when dose was lowered to 12.5mg for one week my shoulder pain came back and not able to fully use my left arm, this has never gone away despite going back to 15mg the following week. I have not had one good nights sleep since taking them and now the doctor is sending me to rheumatology in January, as she is not sure it is polymyalgia rheumatica as my blood is still inflamed and I am not overall responding to pred as good as I should. Has anyone got any thoughts on this.

[piglette]

If you have a severe headache and your blood markers are raised, has your doctor considered you may have GCA? If you start to have sight problems you should be treated as an emergency. Do you have jaw pain when eating or is your head tender?

[cherrysteps in reply to piglette]

The doctor has made me aware of what to look out for as regards GCA, but I have wondered myself about these headaches, doctor says the pain would be in the temples and until now it has been a pressure headache. Have just come of the phone to doctors and am waiting for a call back. I have not had jaw pain but occasional stiffness, not sure about tender head as can't seem go beyond the headache.

[SnazzyD in reply to cherrysteps]

Not everyone gets the classic temple pain, especially in the early stages. At first mine was like a tension headache and base of skull/neck. GCA can accelerate very quickly so any changes, especially spots before the eyes (not floaters), you need to get to A&E.

[PMRpro Ambassador in reply to cherrysteps]

As Snazzy says, it isn't always temple pain, back of the head is also common but I have head of a doctor saying that was "the wrong sort of headache"!

[HeronNS]

The lack of relief and the headache are concerning. Your referral should be more urgent than next month. If you start to have any visual symptoms - any at all - go to the hospital emergency department. If you have GCA (giant cell arteritis), and we really hope you don't, it should be treated as an emergency as serious as a stroke or heart attack. It's better to have a false alarm than risk losing eyesight.

[cherrysteps in reply to HeronNS]

Thank you for reply, am awaiting phone call from the doctor at the moment.

[Blearyeyed]

Absolutely agree with the other replies , if your Prednisone worked originally but new symptoms have begun to arrive , especially severe headache you need to go back to your GP and ask them to get you an emergency appointment with Rheumatology as soon as possible , just in case there is a possibility of GCA .

Definitely do not stop taking your medication until this has been checked ( unless you are proven to have an intolerance , although as your GP has not taken you off the medication they clearly have ruled this out currently ) as, if it turns out that you have got GCA , the dose you are on now will not be high enough , but it may just be helping enough to protect your eyesight until your are properly examined.

We don't want to make you anxious . Taking precautions and seeing a Specialist can rule out things as well as spotting them . You will get better advice and more peace of mind.

It may not be GCA , and your GP may be right and it's isn't PMR , you may need a different medication or it may be something else that requires a different dose or type of medication , but until you have had a proper check up and diagnosis from a Specialist you can not be sure , so taking your medication is still important .

Try and relax and rest as much as you can as this will help to reduce the Pain of your symptoms .

And contact the GP today , take care and let us know what happens.

[cherrysteps in reply to Blearyeyed]

Thank you for your reply and advice, the rheumatology appointment is supposed to be an urgent one, but I agree I need one much quicker, I have just come off the phone to the doctors surgery and am awaiting a phone call back, many thanks.

[PMRpro Ambassador in reply to cherrysteps]

Urgent just means sooner than routine - so maybe 2 months instead of 3 or 4. Emergency is the word to be used when it might be GCA, with an appointment within 24 hours.

[gifford7]

It sounds like possible GCA in addition to PMR. Starting dose for GCA is 40-60mg pred.

What level are your blood markers; CRP & ESR?

[cherrysteps in reply to gifford7]

I don't know, but have seen doctor today and it is a stress headache, not GCA. I just have to keep pressing rhuematoligy for a cancellation.

[HeronNS in reply to cherrysteps]

Please tell me how he knows it's a stress headache and not GCA?

Pred can cause headache, but you describe the headache as one you've had for a month which has now become severe. I'm sorry. I've had stress headaches for years and that isn't how they behave. They go away, don't stay and increase in intensity for weeks. They may come back repeatedly if the stress (physical or otherwise) remains, and they can be very painful, but....

[HeronNS in reply to cherrysteps]

ncbi.nlm.nih.gov/pmc/articl...

"Giant cell arteritis or tension-type headache?: A differential diagnostic dilemma"

Your history of a PMR diagnosis is meaningful.

[PMRpro Ambassador]

Thoughts? Why do you want to come OFF pred when it is fairly apparent that you are not on ENOUGH pred to manage the symptoms? Your GP IS out of her depth by the sound of things but given your symptoms and raised markers despite pred she should not be sending you to the rheumy in January but seeking an emergency referral for query GCA immediately.

15mg is the bottom of the range of starting doses, only 8% of patients respond the way GPs seem to expect us to do within a week and only half in 3 weeks. Even for "just" PMR you may need up to 25mg/day to get the symptoms fully under control but if the PMR symptoms and headache are due to developing GCA you may need even more. That doesn't mean you do need all that - even 1mg can be the difference between enough and not enough.

The dose recommendation is in Rec 3 here:

rheumatology.org/Portals/0/...

I think some more discussion with your GP is called for - and please, if the headache gets worse or you develop other symptoms such as jaw pain when chewing and/or visual disturbances of any sort, from blurred vision up, please go to A&E immediately.

[cherrysteps in reply to PMRpro]

I think you are right the doctor is out of her depth and am going to contact rheumatology for cancellations, am waiting for a call back from the doctor at moment and I will ask for a query GCA. I thought the pred had given me these new symptoms that is why I wanted to come of it, but you have clarified things for me, thank you so much.

[tangocharlie]

I once thought I might have GCA even though it was 'the wrong sort of headache'. I went to A&E, explained the situation and got checked out, they looked at the optic nerve and did blood tests. Luckily it wasn't GCA but better safe than sorry.