I was diagnosed with PMR in June and have tapered from 20mg to 9mg of prednisone. In the past two weeks I have had a new pain in my right temple on 3 occasions that lasted 10-30 minutes. It doesn’t seem to fit the symptoms of GCA. It not an intolerable pain and no jaw or scalp pain. Does GCA symptoms ever start slowly? It is my understanding that it appears suddenly with intense pain.
GCA Symptoms : I was diagnosed with PMR in June and... - PMRGCAuk
GCA Symptoms
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Trident58
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It can come in every version really, What you describe is not what would be described as typical and I would be surprised if most doctors would jump to the conclusion it is GCA but never say never. The GCA experts will be along I'm sure but my suggestion would be to be very aware for it worsening. Have you really no other symptoms? Even things you don't think could be GCA?
The only other pains I have are right shoulder pain that comes and goes and miscellaneous other pains that I am sure all of us have from arthritis. I wouldn’t think twice about it but I haven’t had a headache in many, many years.
Just be aware for the moment. Have you tried ordinary painkillers? Or doesn't it last long enough to be worth it?
The longest it lasted was 30 minutes. It was unpleasant but tolerable.
If I were you I'd ring my GP or rheumatologist to be on the safe side especially if there's a recurrence of pain. I think that GCA headaches are persistent but you need peace of mind and reassurance.
There will others more knowledgable replying soon.
DorsetLadyPMRGCAuk volunteer
“It is my understanding that it appears suddenly with intense pain”.
Not necessarily - it can build up slowly - really depends on how and where the arteries are inflamed....and although usually bilateral, one side can be worse than the other.
Did you lose sight at any time, or any sort of visual disturbance?
I think you need to get your eyes tested ASAP by Optometrist (they can check any issues) but you may need to be referred by your GP.
Hopefully it’s not GCA, but obviously there is something not right.
Obviously if this happens again, a trip to A&E/ED would be sensible.
No vision issues. Please excuse my ignorance but what is A&E/ED?
Accident and Emergency or Emergency Depart - The walk in emergency department at a hospital or clinic for injuries and Urgent medical issues.
TY
Thank you. I live in the US and didn’t know what it was.
ED is one of the standard terms in the US and increasingly used in the UK. So I use both.
Actually, over here we refer to it as ER, short for emergency room. Thanks for your posts and responses and those of others, they have been quite helpful. This blog (I am not sure what you call it) is the best source of useful info for PMR I have found.
I beg your pardon - all my US friends call it the ED, but then, they are mostly in the healthcare service!
My daughter is an RN and all her hospital friends say ER Ive never in my 70 years heard it referred to as ED At least not in the 3 states ive lived in
Possibly other states not sure !!
SnazzyD has answered - wasn’t sure if you were in UK or overseas.
My GCA built up and then one day took off. Once set in the pain it didn’t go. Keep an eye on a ramping up of PMR and head, neck and eye changes. At the moment you don’t know if the bouts are from a nerve directly (eg shingles), from the jaw joint or referred from the neck muscles. Any odd sight abnormalities need to seen as an emergency.
I had a low grade headache for 2 weeks, which wouldn’t go away, It was behind one eye. I then got jaw claudication & tender scalp.
My headache started slowly and was intermittent- as time went on it became more regular and eventually never went. It felt like I had a heavy sandbag on my head and didn’t respond to painkillers. I felt so ill and had visual disturbance - I lost the vision in one eye and was fast racked to Rheumatology - my sight was saved.
Don’t wait and see - get checked out.
You could try an increase in your steroids as you may be on too low a dose for your PMR. Whatever is going on it can’t be ignored.
Good morning, It's hard to differentiate between the symptoms of PMR and GCA. DorsetLady educated me yesterday that in fact they can be the same. Dorsetlady only ever had GCA, where I have had both. Started off in Dec 2019 with PMR - symptoms were: found it hard to get out of bed from the pain in shoulders, hips, knees, buttocks and a very weird headache that started off as a tingle on top right side of my head. All this disappeared after taking the first 15 mg of Pred within half and hour. All went well until I tapered to 8 mg, that's when GCA kicked in. My symptoms were: jaw claudication, tender head and my top back teeth ached. Immediately had to increase the Pred to 40 mg. Managed to get down to 10.5 mg then I had tenderness in right temple, but no pain, tenderness only on touch, also tender head and headaches. Headaches would go though after taking painkillers. So I decided to increase to 12 mg and I'll stay on that mg for the time being. I saw my rheumy on Monday 5 Oct. Thorough examination was carried out, Blood test, BP, Weight , Urine sample etc. My CRP has risen slightly since last blood test in Sept this year. It was 7 and now 13. ESR has remained the same at 2. I asked my rheumy if I could have a Dexa Scan to check my bone health as I've never taken HRT. He told me that Daxa scans to check bone health on the NHS are cheap to do, so he's sending me for one (different story from my GP who refused to let me have one, just told me to take the Alendronic acid and Calcium) never did take the AA, but definitely the Calcium with K2 and an extra D3 later in the day. Will be interesting to see what my bone health is like. I did mention to my rheumy that approx 5 months ago I noticed that the toes on my left foot were numb. He's referring me to a neurologist. So seems I have a good'n in my rheumy, who is young.
Side affects from taking Prednisone: Shaky, both thumb nails have gone very rough and index finger on right hand looks as though I've caught my nail in a door, big dent in it. Lost all the hairs on arms and legs (could be the Omeprazole that's done that though). Weight gain, but the cravings have subsided and watery eyes with raised eye pressures Worst of all for me is the terrible mood swings and very grizzly for no reason. My poor husband !! I'm hoping to be able to reduce the pred again soon but decided to take 10.5mg one day, 9 mg the next, then back to 10.5 mg the following day and follow this method and see how it works out.
I hope you get yourself sorted Trident58....is that the name of a plane ?
Anne
Trident58 in reply to
No, but there was a British Trident 548 flight from the 70’s but it was an ill fated flight. No relationship though.
Bcol in reply to
It was a type of plane by Hawker Siddeley. The first thriple engined T tail rear engined airliner, around 1964 I think.
115 HS 121 Tridents were built between 1962 and 1978. I flew Trident 2's for Cyprus Airways until the Turkish invasion of 1974. Highly sophisticated avionics allowed us to land with only a 12 foot Decision Height as long as one could see either 3 centre line approach lights, the touchdown zone lights, the runway centre line lights or the runway edge lights.
Hoobabes in reply to
I am in the middle of a gca relapse and on 60 mg of pred I've been asking gp and rhuemy why I shake I thought it was the pred but I also take metformin for the diabetes that the steroids have pushed me in.
I'm so grateful to you amazing people for the insight you give me.
I struggle to maintain my body temperature too some days
Anybody else
in reply to Hoobabes
I'm pretty sure the shakes are due to the Pred as I'm experiencing it too...such a horrible feeling. What mg did you reach when GCA kicked in and what were your symptoms ? dreading this happening to me
Hoobabes in reply to
I was started on 30 mg
But with this recent relapse in on 60mg
The shakes are really dreadful some days and leave me feeling like I'm tingerly.
I'm reducing diwmnto 30mg again as the rhuemy at the hospital has told me again I dont have gca.
Clearly I'm just making this all up and i love taking steroids
Metformin .
And a huge cocktail of meds for the sake of it .
And the symptoms are in my imagination.
Why because my bloods dont show what they should and they never have .
And I couldn't possibly have more than 1 condition .
I'm so glad I have your support.
Its enough to send you batty as well as everything else.
in reply to Hoobabes
There are loads of people on this forum where their inflammation markers CRP & ESR are normal. Mine back in Dec 2019 were running at 515, so that was flagged up on my blood test results. Managed to get the CRP down to 7, then as I tapered it rose to 13. Had a blood test at the hospital on 5th Oct when I saw my rheumy, plus other tests, but can't find out the blessed results. His NHS secretary is never in her office, so I keep leaving messages for her. I really want to know what my markers are before I decrease. Having another blood test this Thursday, repeated from a month ago as my white and red blood cells are abnormal....probably due to PMR/GCA.
What are your symptoms for GCA ? I didn't get them all. I had jaw claudication, tender head and back top teeth ached.....all gone now though, but not holding my breath !! One thing many of the ladies seem to suffer from is fatigue, something I don't and seem to get. I have lots of energy. Just hate the feeling of shaking inside, it's not visible, is yours ? And of course the eyes, which were really bad this morning when I got up. Oh, one last thing, my sleeping pattern has change again and not sleeping at all, so do feel quite exhausted all day.
Anne
Hi Trident58.
My GCA came on suddenly and my headache was really intense. It didn’t go away with taking paracetamol. I also felt very unwell but they discovered I had early signs of sepsis too! If the temple pain continues it would be worth getting it checked out. I didn’t have too much of the scalp sensitivity. Good luck. Let us know how you get on. 👍🙂
in reply to Skysey
Since a slight increase with Pred everything has settled back down again. Currently taking 11 mg which I will stay on for a month, then decrease back to 10.5 mg for another month and carrying on like that.
I think the many answers you are getting confirm that in the early stages GCA symptoms aren't always exactly the same person to person. At least until they are roaring away. And that's one of the problems for those of us on the receiving end in recognizing it for what it is. And why this forum is so useful. But what ever you do don't make the mistake I did of gritting my teeth and putting up with it until it was very nearly too late. Your symptoms may end up being something or nothing, which will be great. But they may not!!
Was your diagnosis in June of this year (2020) and you are now at 9 in October? That seems to be fast tapering from what i have been reading and advice given. My rheumatologist warned me about tapering too fast and said 1 mg a month to not only attempt to prevent adrenal insufficiency but also GCA. I am not sure the medical efficacy of that advice, but just a thought.
I started at 20mg early June and was told by my Doctor to step it down a week later to 15, then 10, then 9. I had a problem at 9 and went up to 12.5 After i contacted DorsetLady, she sent me spreadsheet to follow for tapering. I am now back down to 9mg w/o any problems. Except the three pains in my right temple which I don’t know if they are related to anything. I will talk to my doctor next week about that.
Best of luck with the temple pain and do hope it goes away. Unrelated and prior to my PMR diagnosis, I had cluster migraines that caused temple pain on one side usually.
Do you know where I could find the tapering spreadsheet you mentioned? I am in my way down and hoping that I make the right decisions
Thanks.
Yes I will. I will have to send it to you in a private message.
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