Hi all, I am new to this, diagnosed December with GCA, biopsy clear although had been on 30mg prednisone for 10 days have been diagnosed on symptoms, temple headache, scalp tenderness, pain at base of scull, slightly raised ESR and my mum had PMR and GCA, I felt better straight away in 30mg, reduced down to 25mg 4 weeks ago and last week 22and a half, have felt really good until this morning with headache, lethargic and generally not great, I haven’t got temple headache but my scalp and base of scull tender, I’m due to stay on this dose until first of March then reduce to 20mg, what I’m wondering is if this is a flare up or is it just my body adjusting to the lower dose, this has been so difficult for me as the diagnosis is only 50/50 but went on steroids to be safe, I really didn’t want to as I saw how they affected my mum in so many ways, I’m am trying to be as healthy as I can, but now realise that weaning off of the steroids is the biggest part, I already have glaucoma and osteopenia, this site has really made me understand the whole process, thank you all
steroid reduction : Hi all, I am new to this... - PMRGCAuk
steroid reduction
Hello, I too was diagnosed on the basis of symptoms as my biopsy (also after Pred) was negative and my blood were largely normal. Also, what made them keep me on steroids was their rapid effect on my symptoms. It is possible you have just reduced too fast for the early stages of GCA. I was kept on 40mg, the usual lower starting dose, for 6 weeks before dropping to 35mg. I do think I needed every one of those 6 weeks.
Was that the schedule you were given?
hi and welcome,
Like SnazzyD I do wonder if 30mg was enough - I also had GCA and was on my initial dose for longer [slightly different circumstances & doses].
You should also be aware that a negative biopsy doesn’t necessarily mean you don’t have GCA, just that the sample didn’t show it, that may be due to you already being on the Pred, or that the artery was not affected…cells aren’t distributed uniformly throughout the blood vessels.
This link gives advice on steroid withdrawal/flare - but my personal opinion would be that you don’t have full control of your disease….and really with GCA you cannot afford to pussyfoot around with a dose that is too low.
healthunlocked.com/pmrgcauk...
Think you need to discuss with your doctor and go back to 25mg at least.
This link may also help even though you do know more than a lot of new patients -
healthunlocked.com/pmrgcauk...
Snazzy D and Dorsetlady thank you so much for your replies, I felt good on 30mg and 25mg, my Rheumotologist first said 40mg then changed her mind to 30mg, my appt with her last Thursday was good and positive but I had only cut down to 25mg the day before, felt amazing until yesterday, generally felt awful yesterday, today headache not as bad, she has asked me to cut down again on 1st March but obviously only if I feel ok, will be seeing her again in the 22nd March and go from there, I think if this persists I will go back to 25mg over the next day or so,.Is it normal with GCA to have pain at base of scull, forehead and real tightness generally over the scalp, I do get temple pain but this seems to be the less of it all, she seems to home in on the temple pain and dismiss the rest, thank you so much for replying, I think you will be hearing from me a fair bit
My first symptom was pain at the base of my skull and scalp tenderness. The temple was a niggle but not dreadful. When it kicked off properly my whole felt weird and my temple and scalp felt like there was acid just under the skin. Other people have reported different issues like more in the ear or eye or a really bad headache. I suspect it depends which arteries in the head are affected.
In the early months each reduction caused me to feel ill from around day 1-4 for a few days and occasionally a week. This was a general headache, very tired, achey and feeling a nondescript offness. After a while you do get to know the rhythms and signs of things. Make sure you don’t over do it with the false energy that Pred gives you. That was a sure fire way for me to feel ill and the tell tale burny feeling. After about 8 months it stopped happening so easily.
It really is hard when you feel at odds with the medical advice given and many here had said similar things to you. I was the same but luckily for me, after 6 weeks I was forgotten about and was left to my own devices for about 6 months.
Think your Rheumy should have stuck with her first thought of 40mg -after all that is the lowest recommended dose for suspected GCA-which even though biopsy was negative the symptoms strongly point to it.
Your description of head pain sounds very much like mine pre diagnosis-and my temples nor temporal artery were affected..but that is listed as a symptom which most doctors lock on to!
I would agree a return to 25mg is wise -and hope it relieves your pain -but if it doesn’t you do need to discuss before 22March…
One of the areas that GCA likes to settle is the occipital region and that is what would cause pain at the base of the skull. Many doctors ignore that fact despite it being in the literature AND being the area where the blood flow to the optic nerve would be affected - I have no idea why they take their view I would slow down with that taper and if the symptoms worsen try and get in contact with the doctor.
Thank you all for the replies, really does make a difference knowing you are all there and understand, my husband is brilliant but friends family I don’t think realise that it’s a big deal, one having these conditions and two the medication, I think I was on a massive high on feeling so good and now not so, will take your advice and will go back up to 25mg if headache persists, it is definitely better today than yesterday so will keep everything crossed, I can get in touch with my rheumatologist easily, thank you all
Hello momdadlove, curious, re your diagnosis, I had what appeared to be GCA symptons, and inflammation markers, flagged hi on bloodwork, so my rheumy sent me for an ultrasound on the head, temples etc. , results were negative, had read ultrasounds more effective in diagnosing, as biopsy,s may not get the part of artery affected, wondering if there was any suggestion of an ultrasound, and was put onn 40 mgs immediately for only one week, then on 30 for 2 weeks, then 20 for 2 weeks, then advised to go to 15 for2 weeks, so seems very fast in comparison to some of the comments have read here now, but I too had some weird side affects, at least think they were side affects, felt zombie like, light headed, losing my balance, ,fatigue, like lead, so I only cut down to 17 1/2 this last week, see rheumy tomorrow, ESR was flagged as hi, still not sure what signficance that is, anyway point being, tapering very quickly according to other stories hearing here, and wondering if others have had ultrasounds done to help with GCA diagnosis
Hi Arvine, I should of had ultra sound sooner, there was a mix up with the referral and by the time I had it the radiologist said that the steroids had probably done their job, I started medication early December at 30mg now 22nd a half, I think over the next few days will tell if it’s medication reduction or a flare up, like you yesterday I felt very light headed, tired, grumpy, nothing like the day before when I could of taken on the world! I’ve realised from this forum that slowly reducing makes sense, and a lot of people manage their medication themselves as they know the symptoms and by how they are feeling if they need to adjust
ok, thank you , yes, Im hoping my rheumy is ok with me only reducing to 17 1/2 for 2 weeks, instead of going directly down to 15 so quickly, I am sleeping a little better, only legs and body feel pretty weak and lead like most days, but seems to be getting better, maybe body adjusting to lower dose, did go for MRI, showed, subacute diffusion, which rheumy called subacute stroke, so now have to go for ultrasound on neck arteries, Mar 31, seems one thing after another this last year, little frustrating and depressing at times.
You've got a great understanding of GCA and pred from your mum which will stand you in good stead. It's all about understanding your body and the relationship between GCA and steroids, but in the early days it's hard to distinguish what's going on. I always suggest keeping a symptom diary.
Though the course of illness/taper symptoms often change in a non predictable way. I found they were all over my head, never particularly bad, rarely in the temples.
You have had the pred euphoria which is a bonus, but unfortunately very time limited. Tiredness and feeling out of sorts comes and goes but gets better on medium doses.
It sounds like you will need to go back up, but I learned over time not to react to things immediately and to take a bit of time to see whether things settle as you are doing. Usually withdrawal reaction is pretty quick and lasts up to a week but I found it could go on for a fortnight. As you will know, the exception which needs immediate action is red flag symptoms such as headaches getting worse, anything to do with eyes or jaw cladication.
By the way I have glaucoma in one eye and after two years on pred it is doing fine - I have regular checks though.
Thank you, I think you’ve got it spot on and it’s a learning curve, I’ve actually felt ok today so will hold out and see what the next few days bring, that’s really positive about the glaucoma as that is a big worry of mine
just reading people experiences really helps, lots of good advice, thank you, really encouraging regarding the glaucoma as this has been a big worry for me, I will definitely start a diary, really good idea
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