I am trying to reduce my preds from 40mg to 35mg but after 2-3days the headaches(temporal) and jaw ache return, sometimes with "fuzzy " vision. Diagnosed with GCA in Feb this year. Also my legs are very heavy and extremely wobbly sometimes can hardly walk, and keep dipping over
and have now ordered a walking stick!!
Any thoughts very welcome
xx
Hello. Only you can tell if your headache is exactly like your GCA headache, but at that level on about day 3-5 I would get a withdrawal headache, weakness, aches and general horribleness for a few days. I got pain around my temporomanibular joint and biopsy scar would hurt too. It felt almost but not quite like a my GCA. Whether to hold your nerve and ride it out for a few days is a tricky decision, but I did because of the early onset of the symptoms. I figured that if it was build up of inflammation it would take longer, but I guess that depends on how active your condition is.
Like you I get the weakness and pain etc. I started at 60mg back in Feb and the Rheumy , when I saw her in March gave me a programme of reduction, which after reading about it on the forum seemed very rapid. I have an appointment with her in July. My GP, 2weeks ago was very understanding and told me to increase to 40 then try 35 the following week but then the headaches started again. If it is withdrawal maybe I should try and ride it out.
Thanks for your help
If you are confident that these symptoms are a return of the symptoms you had before then the underlying cause of the GCA is obviously still active - the pred has cured nothing and only relieves the inflammation to reduce the symptoms. You simply aren't ready to reduce that far yet - 40mg is the bottom end of the starting dose range.
It is possible it is withdrawal as Snazzy says though it does usually appear immediately you change the dose but you could try reducing by 1mg at a time and see if the symptoms are still controlled. 1mg every week is still 4mg a month.
My first thought is that your start dose was overly cautious and low and you never really got on top of the GCA inflammation. You need to return to your Rheumatologist ( I hope you’ve got one and this isn’t a GP). Please stay at 40 mgs until you have had expert medical advice. A more usual start dose is 60 mgs and begin the taper when your symptoms have settled down. I bought Nordic Walking Poles for a holiday in Greece ( accommodation at the top of a cliff). I only used them that one time. My mobility really improved - I hope you find that too. ( They are great though). Let us know how you get on piggypink! 🌷
I see you joined us in May............what dose of pred and other meds please.
I am assuming you were started on 40mg and it is now only 22 June and I astounded you are even trying to reduce.
Whom did you see - a GP and referral to Rheumatolgist or? So a little more information please.
In the meantime stay at 40mg and do not reduce until you are clear of any fuzzy 'eye' symptoms.
I had GCA and started off on 60mg and it took 6 months to get down to 20mgs.
Remission after 5 years and still going strong into 8th year of remission.
I started at 60mg in Feb. Have seen the Rheumy once, in March, due for another visit in July. My Gp is very good. Rheumy gave me a programme to reduce but as I said above it seems very rapid compared to the advice given on the forum. I think I'll go at my own pace as she wanted me to get to 20mg by mid July.
Thanks for your help
Your rheumy can want all she likes but it is the GCA that is calling the the shots!
Your Rheumy seems a bit cuckoo if s/he thinks you can do a fast taper 😉
It takes a while to recognise what symptoms are steroid withdrawal and which are GCA still bubbling away. I would be going to the last dose I was ok on - the Rheumy' gave you the ok for 40mg at last meeting ?? Stay there for a few weeks...at least until visual symptoms calm. Once things settle and the inflammation clears out you can try the much smaller reductions. It's not worth having to go up to 60mg or 80mg if you drop too soon and in the long run it may be less pred across the time of the condition being active.
Put your Rheumatologists name in your search engine and read up on her specialisms, alternatively go to the hospital website as she will be listed on that site with her specialisms.
Then make a decision either before or after your next meeting, whether to look for another or not.
I would also suggest you read this:
pmr-gca-northeast.org.uk/us...
BSR and BHPR Guidelines for the management of giant cell arteritis.
Knowledge is Power.
Thanks jinasc. I spoke to my GP this morning and he agreed with me , that I should stay at 40mg until the end of July, then reduce to 37.5mg in August, fingers crossed!! Meanwhile I see the Rheumy mid July and discuss it with her. He has ordered extra medication for me including a supply of 2.5mg tablets. Feeling much better with a bit more energy ,being careful not to overdo things.
Take care xx
I will. Sometimes" No" is the hardest word, but I'm learning. The forum has been very helpful, thanks to everyone.
xx
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