I had undiagnosed GCA two years ago, perhaps at the same time PMR started. I had all the classic symptoms. PCP did all kinds of tests for other things, all of which came back negative. However, twice in the middle of it all she prescribed high dose Pred (60mg for 5 days) and while on that I felt great, afterwards it was back to the pain and suffering. I was in bed 2.5 months before being seen by an Arthritis/Osteoporosis doctor who diagnosed PMR and started Pred. , which relieved all symptoms. Over the past two years I have slowly reduced to 2 mg, with only minor pain and tiredness now and then. However, this summer due to circumstances, I have been working hard physically and in stressful situations (some happy stress and some not so good. ) Pains and exhaustion returned and I upped to 3 and then to 4. Had to fight the Arth/Osteo doctor about increasing the dose. Now, the past 30 days I've developed a super itchy head, only on the left side which is where the GCA headaches were. No rashes, no blood, nothing but itches and lumps on that side only, some nausea, pain and some blurriness of vision. We are snowbirds and two days ago finally got back to our Winter home. I tried to get an appointment with our PCP (no openings till November), and the Arth/Osteo doctor's office was closed. Yesterday out of desperation I went to the Urgent Care, and the doctor there checked for head lice, etc. (thankfully none!) and sent me to the hospital Emergency Room. The doctor there diagnosed it as a GCA flare and has put me on an 18-day high dose Pred plan, tapering from 60 down to 10. Since I don't have the headaches or jaw pain, I would appreciate advice if you think the doctor was correct? Today I took my first 60 mg dose, and I guess the proof of the pudding will be: is it removing the symptoms or not?
GCA flare, or not?: I had undiagnosed GCA two years... - PMRGCAuk
GCA flare, or not?
It sounds awfully like GCA. I am glad you were finally taken seriously. Is this a relapse of GCA or your first diagnosis of it?
My own experience of secondary GCA ( non-cranial) makes me want to urge you to use DorsetLady’s slow tapering programme outlined in FAQ, just above the posts. You don’t seem to have been treated according to accepted wisdom and protocol thus far. for GCA the first time it appeared, I am not surprised it is back or never went away. Your GCA, like mine, may not involve your head thus the absense of headache jaw and eye symptoms but remains a threat to the Aorta which should be checked out. The stress happy and otherwise may have provoked this, which maybe a blessing in disguise, it needs to be dealt with properly. Good luck! Please read FAQs.
Thank you, SheffieldJane, for your response! I honestly believe I had GCA first, two years ago, due to reading later about the symptoms. I had continual debilitating headaches, jaw pain when chewing (lost weight bc I just couldn't chew), blurry vision, total fatigue. May have had PMR symptoms at the same time. My regular doctor never diagnosed it, but a couple times she tried high dose Pred for a few days, which took away all symptoms. I told her that was the only time I felt well in 2.5 months. Finally another doctor diagnosed PMR, due to shoulder and hip joint pain, thigh pain, stiffness, and very high inflammation markers, and I started a 20 mg regime and slow taper. After learning about this forum, I've been doing a very very slow taper, as DL has written. Now I believe the GCA is flaring, but in a slightly different way than the first time. When I finish the 18-day taper from 60 to 10, are you suggesting that I taper very slowly on down from 10? I asked the ER doctor what I should do after I finish the protocol she ordered, and she said when I'm done with the last 10 mg pill, I should go back to 4. I have read some of the FAQ pages, but not all. I'll go back and check again. Are there any specific ones that you'd recommend? Many many thanks! You are spot on when you say my case has not been managed well by physicians (I could give many other examples!) This forum is an invaluable resource.
Hi,
As SheffieldJane has said GCA not treated correctly initially, and an increase or two for just a few days was just a short term fix…and GCA has probably been puttering away under the radar as you have now discovered.
The plan you have been given now is still quite rapid, and hopefully will be enough… and yes was the correct action by the ER doctor -always better to be safe than sorry.
As for the advice when you reach the 10mg? Might be a bit optimistic… I would suggest once you reach that dose [provided you have enough medication] stay there for a a couple of weeks and then access how you feel. You may need reduce 1mg a month from there, however you might be able to go down to 5mg in one drop [or 2 with an an few days at 7.5mg] an then resume slow taper… but it’s guesswork at the moment.
Fingers crossed.
Thank you, DL! I would rather be safe than sorry, and think it's just common sense, now that I read what a few of you very knowledgeable folks have written, to taper slowly after 10 instead of immediately dropping to 4. Quite the bummer to suddenly be back at a high dose and have to start the taper all over again after two years, but perhaps that is because the GCA was never treated properly at first, and then tapering to 2, then 3 and 4 wasn't enough to empty the PMR/GCA bucket and finally it overflowed. So grateful for this forum.
Well you’re not starting completely from scratch …. once you get the current regime over with - and get back to 10mg then hopefully things will settle and you can reduce without issues.
Once diagnosed it took me over 4 years get from 80mg to zero - which is about par for the course…pity it took so long to get diagnosed in the first place - but that’s another story.
Good luck.
Thank you! Your story about it taking 4 years, and others who've been on this journey even longer helps me face the reality that PMR/GCA may hang on for a very long time and I just need to be patient and let it take its course.
It is truly a pity, as you say, that this disease so dreadfully slow to be diagnosed. It seems that most of us have suffered for quite a while before someone somewhere finally diagnoses it. My PCP thought it was a brain tumor, then Lyme disease, then blocked carotid arteries, then RA, and I had all the tests for those, plus cortisone shots in the cranial nerves, pain relieving shots in the butt, migraine meds, (none of which helped) and I can't remember what else before a different doctor said it was classic PMR. Even a rheumatologist only did tests to show it wasn't RA, then sent me home.
DorsetLady and PMRpro
G-Jo mentions being treated for migraine while seeking a correct diagnosis . You may recall I have AOSD diagnosed aged 17 now 61 and despite chronic symptoms have been drug free since my mid 20s ( perhaps a mistake). In February I became ill, tests for celiac negative, liver ok, stomach ok, gastroscopy negative, cancer flag in blood tests did not reappear, iron levels ok. Abdominal scan pending..,,, back on 20mgmsx2 daily omeprazole. Twice recently I’ve had dizzy days where I cannot stand upright, these experiences followed what I believe are migraines something I’ve had for many years. This ladies post made me wonder if the dizziness is linked to Stills, or migraine related or the start of a different condition. I have other AI things such as LS for example. I’ve read ( on the internet,couldn’t stop myself ) there MAY be a link with Stills and Non Hodgkinsons Lymphoma which my Dad had. Anyway I digress when my question is should I consider these dizzying headache experience as possibly due to RD?
I think they do need to investigate the dizzy spells - so many possible reasons but it ain't normal!!!!!
Agree with PMRpro dizzy spells need investigating....
Thank you
I would say 10 out of 10 for the ER doctor. It might NOT be a GCA flare - but if it is they have dealt with it pragmatically and a short taper of high dose pred won't hurt and will almost certainly do the job. But at 10mg you will need to assess where you are - it depends on whether the flare was because you had gone just a bit too low and the inflammation had built up or whether the disease activity has ramped up a bit, Don't go back to the dose where you flared though - go to the last dose where you felt good. That is a bit difficult to assess for you I suppose. 5mg seems a fair idea to me though.
Very good advice, PMRPro, and I think you're right that 4, 3, or 2 wasn't the correct maintenance dose for me this summer, as I experienced a lot of fatigue and recurring pain. Tapering slowly to 5 from my ending dose of 10 (in 18 days) will take awhile, but is the wise thing to do. I'm thankful that my DEXA scans have shown no bone lose, and in fact a slight improvement, since being on Alendronate Sodium tabs once a week. So far I have been very fortunate to not have had a lot of bad side effects (knock on wood!) and am hoping this latest flare doesn't create any! Only time will tell. Again, many thanks.
You probably don't need to go ultra-slow. I'd drop to 7.5mg and see if that works.
OK will do that. The ER doctor has me end the taper (from the original 60 ) with 6 days at 20, then 3 days at 10. Someone suggested staying at 10 for a few more days to see if I'm stable there, then decreasing. I do like the idea of going to 7.5 when ready, instead of a very slow taper like is needed at lower doses.
Here it is only day two of 60 mg. and my head is quite a bit less itchy! What an odd symptom of a GCA flare! No itch at all ever on the right side. So thankful for that ER doctor.
Someone suggested staying at 10 for a few more days to see if I'm stable there, then decreasing
Me….
Thank you, DL! I knew it was someone very smart and experienced who recommended that!😉
would consider tapering slower. When I had a GCA flare, was put back on 40 Pred, however when I got to 20mg I got stuck. Every time I tried tapering lower than 20mg symptoms returned. That’s when I ended up on Actemra which was a game changer for me. I fear that from 60mg to 10mg in such a short time you won’t be able to pin point optimal dose that controls symptoms.
Thank you, PMR2011. I will carefully listen to my body when I get to 20 and see what it is telling me! I've not researched Actemra, but will. I have an appointment with Arthritis/Osteoporosis doctor in 3 weeks, and will ask about that. Am seriously considering changing doctors also (this one is pretty arrogant!) His assistant said I was "abusing Prednisone" when I asked to go up to 4 mg due to pain and exhaustion, and he wanted me to taper from 4 to 2 in two days!
The Arthritis/Osteoporosis doctor who is managing my GCA/PMR (the rather arrogant one) had a cancellation this morning so I was able to get right in. Sure enough, he must have been reading this forum because he tweaked the ER doctor's taper schedule (as some of you dears have suggested) to go slower and decrease incrementally instead of big jumps. It will take longer to get back to 5 mg but probably a much safer course of action. I have to increase the Sulfasalazine dose daily too, from 4 (500 mg) pills to 6.
We are snowbirds and have recently returned to our Winter home in Arizona, and two nights ago in the swimming pool a neighbor guy told me that last month he was diagnosed with GCA/PMR. He is still in shock, trying to figure out what it means and what to expect. I am so thankful for what I've learned from this forum and can now share with a friend. I gave him this website so he can get connected with this group also. Many thanks to you all!
Agreed, arrogant docs can actually be dangerous where GCA is concerned!
I have an appointment with him on the 23rd of Oct., and will keep that just to see what he says, but in the meantime I'm going to start the hunt for a good PMR rheumatologist in the Phoenix, Arizona area (USA). That's a 2.5 hour drive but would be worth it. Is anyone from that area and can make a recommendation? Would be greatly appreciated.
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