Had to see a private rheumie earlier this year for PMR diagnosis as nhs rheumie and GP were trying to say I had fibromyalgia. Was told to start on 10mgs of pred for one week and if that didn’t help was to increase to 15mgs and start on usual nhs method of tapering. I did have to go to the 15 mgs and after some hiccups I explained the DSNS method of tapering to my new GP and she is quite happy for me to self manage this. She had never heard of it but I am now down to between 12 - 11mgs. I still have residual pain in my lower back, hips and buttocks but understand that not everyone is pain free on pred but as long as it stays at the same level I can soldier on. In August I started having headaches. They are severe, on the right temple and pain in the right upper jawline. No other symptoms but the headache is so severe that it wakens me and for a few seconds I have no idea of where I am and what is happening because of the pain. It always happens around 5 - 6am and goes completely away within an hour, with or without pain killers. This happens for 2 or 3 mornings and then nothing for about 3 weeks. My next GP review is is November and I will mention this but I wondered if any members had any thoughts on this. I don’t post very often but read all daily posts and appreciate the information and support this forum provides. Many thanks in advance.
Unexplained headaches: Had to see a private rheumie... - PMRGCAuk
Unexplained headaches
As you have PMR, most people would automatically think of GCA - and any new headache should be investigated as a matter of urgency . Add in the fact that it so severe just adds to the need to get it checked pronto not wait another few weeks to discuss.
But trying to rule out others less serious issues just wondering as it’s one sided could it be connected to a TMJ /TDM issue - and if you are a side sleeper, do you lay more on that side of body..
see this - nhs.uk/conditions/temporoma...
Or maybe an issue with your neck?
But you do need to contact either your GP or ring nhs 111 asap. It may not be GCA but it does need to be ruled out, as does something else that could be serious.
Thank you dorset lady. I’ve also replied to PMRpro. No I’m not a particular side sleeper and have no neck or shoulder pain. That was resolved with the initial doses of pred and no trouble since. I’m feeling slightly under the weather and very tired. This mornings headache is still there although not particularly severe at the moment. I am in Spain for the whole of October and I know of an excellent medical centre so I think I’ll call the doctor and see what he says. I will keep you posted. Thanks for your advice.
Yes please do... always best to get any headache checked.. hope it can be quickly resolved.
Just had another thought whilst out for a walk -as it comes on at same time roughly early morning - it’s more likely to be something that occurs overnight - I know you are away at present - and you’ve had it for some time -but change of bed, pillows etc may not help..and when you get it, does it correlate with anything you’ve in the previous few days?
I was thinking the same as DL.
In terms of the lower back pain - sacroiliitis and myofascial pain syndrome are common add-ons to PMR. And they can cause trouble further up your back and into your neck. Does it improve after you get up or already resolving before that? When do you take your pred?
I take my pred around 9am and the headaches normally start to resolve before that whether I’m in bed or not. Lately I’ve noticed that they are lasting a little longer. I’m very tired, more so that usual, and feeling slightly under the weather. I am not particularly a side sleeper and the lower back pain has been there since the start of PMR. I’m in Spain for a month and now wondering if I should see a local doctor who may give me a higher dose of pred until I get home at the end of the month. Bit of a quandary
1:5 people are at risk of developing GCA/TA (Giant Cell Arteritis/Temporal Arteritis).
Please make an urgent appointment with the optician and explain you have PMR and presenting with GCA/TA symptoms.
They will see you within a day or two and give your a thorough eye examination. They can check the arteries and if anything untoward is found, they will send you straight to the hospital.
This is a serious condition and must be treated immediately.
Hope this helps you x
Unfortunately, my experience with Rheumatologists over the past 2 1/2 years is that they are not even worth the effort of spelling Rheumatologist.
I'm sad to read this, as it's not my experience or that of some others on the forum. If you say where you live and ask for recommendations, you may find a good one near to you.
Recommendations for a Rheumatologist.
Fat ankles!
Is it PMR, or GCA or neither? 
Tapering from 3 mg ?
Update ... flare has nicely abated...not on methotrexate YET! what do I do when medical insurance stops my cover for PMR?
