Prednisolone withdrawal and headaches?

[Stkeyna]

I have been on Prednisolone for 11 years now ranging from 70 down to a low as 5mgs. For the last year around 12mgs. I was diagnosed with PMR initially for 6 months then GCA arrived with a great thud! Six months ago had a scan which showed very little sign of any vasculitis, so the thinking was that my headache, dizziness and feeling unwell symptoms were down to the prednisolone set off I set, with my consultant's consent, tying to withdraw. I got to 8.5mg and then the headaches started again, some of them in the temple areas both left and right but mostly in the front of my head. I then went to 10mgs, up to 12.5mgs and now 15mgs. For the last month I have had a lot of nausea but the dizziness has stopped. My experienced consultant appears unsure. I am wondering is it just the prednisolone that is causing my headaches and nausea but a bit concerned why I should, occasionally, have pain in my temple areas? So do I try prednisolone withdrawal again?

[SheffieldJane]

Reassuring that the scan has confirmed that the GCA has gone. Given that you have been on significant doses of Pred for a long time, I wonder if an Endocrinologist would add value at this point? Or some time in the near future. You wonder if the Adrenal system will be able to function now. This may explain some of the symptoms. You may be someone who has to stay on a small maintenance dose for life. Let us know what happens. Yours is not a typical case and it’s confounding better brains than ours.

[Stkeyna in reply to SheffieldJane]

Many thanks for you thoughts which I agree with. However has the giant cell gone forever as why do I get headache pain running down my temples - occasionally? However at present it is in the forehead. Can GCA flare up again!! I wonder if other people who have adrenal problems get temple headaches? As you say a not a typical case!! Anyway do appreciate your message!

[DorsetLady PMRGCAuk volunteer]

If you were at slightly lower doses when problems occur - say below 7mg- I would throw adrenal insufficiency into the mix. Although it might be worth considering - and discussing with doctors.

That causes nausea, headaches and generally feeling unwell.

[Stkeyna in reply to DorsetLady]

Good morning and many thanks for your thoughts. I hadn't realized adenal insufficiency caused similar symptoms to my own but will look into it. It hasn't been mentioned by my consultant but will definitely bring it up with him. However does it cause, occasionally, temple headaches I wonder! Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Stkeyna]

We wouldn’t normally suggest AI until below 7,5mg - but that’ the average.

Normal cortisol Production levels range from equivalent 5-10mg Pred - so if your normal production is nearer 10mg then it’s worth consideration.

[PMRpro Ambassador]

"a scan which showed very little sign of any vasculitis,"

What sort of scan? "very little sign" isn't the same as "none".

[Stkeyna in reply to PMRpro]

Thanks for response and yes you are quite right. You know of my consultant, from previous discussions, and he had told me the level of Vasculitis was about 1 out of 10 when I asked him to graded it... via telephone conversation. I have just got hold of the scan report after chasing. It was a pet scan and the summary states 'mildly increased metabolic activity of the aortic wall consistent with possible low grade vasculitis'. He had also stated there is a faint metabolic activity relating to the aortic wall, predominatelyin the aorta.

So really just trying to find out if is safe to go back to withdrawal from 15mgs if still, occasionally, getting temple headaches. Always seen temple headaches as a warning of CGA? Also, as others helpfully have suggested, my symptons might be adrenal insuffiency? The new sympton, if it helps, is this nausea which I haven't suffered from before!

[PMRpro Ambassador in reply to Stkeyna]

If there is inflammation present at the current dose I would assume there was a risk of it increasing at a lower dose of pred. And I am far from sure that a PET-CT scan would show cranial inflammation - it is brilliant for LVV.

[SheffieldJane]

My whole body PET Scan was clear. My subsequent Utrasound Scan showed large cells in the armpit arteries. I have consequently ( new headache) been diagnosed with GCA after a 4 year period of PMR treatment. My Rheumatologist is applying to treat me with Tocilizumab. My Temporal Arteries were clear at the US but I do get pain there, an enlarged vein/ or artery on my forehead and a knobbly area on my right temple. I guess I’m odd too. I did experience the symptoms of Adrenal Insufficiency at 6 mgs( dizzy, nauseous, headache, tummy pain, weary) and this was confirmed by a Synacthen Test. This righted itself at the next test.

I hope this is of some use. I am pretty bewildered myself.

[Stkeyna]

Sorry to hear about your difficulties. At times, we odd bods, have to grin and bear it, but sometimes we come out winners as well ...by being different that is. Well that's my odd bod way of thinking and I wear my 'different..ness' like some badge of honour...sometimes!

I wonder how you got to an Ultrasound scan? It has never been mentioned to me, in fact, very little has been mentioned to me - no mention of adrenal insufficiency from my consultant and I have been asking for years now ...of what else can be causing the problems? I wonder if these consultant know as much as we think they know or are we expecting too much! I was alwasy led to believe that a pet scan was the truest test but now starting to question that thought!

Anyway well done you as you are helping me greatly. I have never heard of a Synacthen Test so will raise this. I might go back through my own doctor. I feel I have been too inactive due to thinking the experts were on the case....so, because of that fact, stop thinking! Anyway good luck with your progress and yes bewildering indeedy......and a little scary but great we can help each other out!!

[PMRpro Ambassador in reply to Stkeyna]

A PET scan probably is a very good option - but it doesn't workas well for cranial GCA and even a moderate dose of pred will suppress the result so could be misleading.

[Stkeyna]

Interesting.... but then why would a consultant not ask for a cranial GCA and rely solely on a PET scan ? I was on 10 mgs of prednisolone when I had the scan, and queried this with my consultant, who said it would not make any difference... as did the radiologist. My thinking was it would but I am only a layperson! Interestingly for my previous two PET scans I had been told to come off all prednisolone. This was under two different, less experienced consultants. However after that second scan I felt I never really recovered coming off the prednisolone as it seemed to send me into a tail spin which I am still spinning with after five years!

[PMRpro Ambassador in reply to Stkeyna]

I was also told that 10mg pred shouldn't affect the PET scan - despite having read it does in a radiology article. Who knows. Imaging in vasculitis is a relatively new concept - and GCA is a rare disorder. Maybe there is still a lot of dispute?

ard.bmj.com/content/77/5/636