I have had GCA for 12 years now and my latest scan showed a residual amount left. So my consultant thinks it is just a case of getting off the prednisolone. I was around the 12mgs level for most of last year and I have been slowly reducing at 0.5mgs every two weeks. I have now got to 8.5mgs, and I have been at this level for about a month now, but finding I get lightheaded and tired if I try to do very much.
So I am not sure how long I should stay here or do I just go back to 9mgs? I don't imagine my adrenal glands are kicking in yet as I believe it's around the 7.5mgs before they do so? I really don't want to give in and go back up on the pred. but life is hard when you wake up tired and just 'yawn' through most of the day and can't do very much! Any advice or enlivening thoughts most welcome!!
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Stkeyna
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Hello there, when you say there is some “residual” GCA, do you mean active inflammation or signs of GCA having been there, or neither?The difficult dose below 10mg isn’t exact and depending on how much a person absorbs, it can occur at, above or below the 7.5mg. This awkward time, when getting up is a trial and one has no go juice, certainly felt for me that the Pred dose was not enough for daily life’s demands but still a bit high for the Cortisol feedback to notice fully. The only way to get past this is to reduce and deal with the frustration of having no oomph until the adrenal production picks up. I had to slow down my already pretty slow life even more until things picked up months later. If you keep going back up towards 10mg for an easy life, it may just prolong the agony. However, I’d say 0.5mg every two weeks might well be too fast; it would have been for me. Around 10-7mg I was doing 0.5mg every 4-6 weeks.
Thanks for the helpful response. I took it from the consultant's attitude it meant there had been GCA there rather than anything active but I suppose how accurate can scans be! Anyway, your going along at 4-6weeks tells me I should hang in there after all what is the alternative - munching more prednisolone which I would rather not!! I appreciate your help!
Thanks and I will. I think my rheumy thinks it has basically gone because the report stated only a residual amount was showing which I took to mean it had been there or was so small it would have no effect. However not sure how accurate a scan can be! So will stay where I am at 8.5mgs but if things don't improve then maybe there is something left that is affecting me!
A PET-CT is pretty good given the right conditions but the patient being on pred can interfere a lot. It also isn't ideal for GCA because the signals are swamped by the uptake of the glucose by the brain. It should have shown LVV though if it was significant.
Hi DL, As I'm now approaching the "Adrenal Danger Zone" your link is very timely. I've printed off a copy and will keep it handy. Once again many thanks. Lauterbach
Thanks and I am wondering where you are now? What level of Prednisolone?
My trouble is I don't know if it is an adrenal deficiency/ lack of energy due to being too low on my pred. If so do I just try and ride it out - yes! Or is it still GCA - a residual amount or not! If it is GCA then should I not creep back to 9 or even the heady heights of 10!!!??
Yes I did get down to 4.5mgs about 5 years ago and I didn't realize that my scan at that time was saying much as it does now. However I started getting headaches and the inexperienced rheumy told me to take more pred. and before I knew it I was back at 15mgs. Little did I realize that my headaches were being caused by the pred and not the GCA. So I reckon I was on prednisolone at far too high a level than was required - for about 5 years. So a bit miffed about that but hey-ho and on we go!!
I feel for you so much, 12 years of GCA & pred & fatigue is a tough call. I have only had the same for 5 years & am very weary of it all. However on a more positive note it looks as though you have turned the corner re GCA & are probably hitting the adrenal issue. I got horribly stuck at 8-7 pred level, felt even more exhausted just getting myself up in the morning was a trial - I sat at 7 for a year as every time I had a go at dropping 0.5 using the DSD method I felt terrible so my Rheumi said just wait,which I did. Then I over 6 weeks dropped to 6.5 was sent to an Endocrinologist who tested my adrenals which were doing nothing, agreed I would try to taper to 5.5, ( he said it would be tough but try to push through) & then get my doctor to do a Basal Cortisol blood test to see if there was any change, which joy of joys showed the adrenals are coming back to life again, be it at a very low level. So now at 5.0 & am scheduled for a Synthacen test.As Snazzy suggested taper 0.5 over 6 weeks & see how you go.
Thanks for the info. and support! Yes I find the mornings tough as well. Some times you get up and move about and feel better and next time you don't.Anyway going to try sticking at 8.5mgs for another 2 weeks and review. I am fed up with not being well as had prostate cancer and kidney stone operations and then a serious infection all in the last year! So hey ho and on we go!
I've had GCA for 12 months , reducing 1mg steroids at a time. Now on 4mg. I'm coping, feel tired, sleep a lot but still functioning. Some days better than others but I never feel 100%.
Thanks for that, I do appreciate it. Pleased you are off the pred! I have been on it far longer than I needed. I kept getting headaches and was told to go up on the pred. Finally reasoned it was the pred. that was causing the headaches!!
Hope you don't mind if I ask but what was your longest spell at a certain level with the pred? Or did you just keep going down even if you were fatigued and struggling?
Well you certainly have been through a lot so very pleased you have come out of it so well. I think it says much about your character and determination to get through it and pull yourself back up towards who you used to be.
Anyway I am most grateful for your help so far. I have one more question, so hope you don't mind, but what approach did your rheumatologist take that was so different? To get from 10 to zero in 7 months seems quite amazing!
What have you done to get energy and stamina back? I don't have the pain now and at 2.5 mg Prednisone I continue to reduce, 10% every 4-6 weeks. I can't stand the exhaustion. I have 8 grandkids and am so tired all the time I literally sleep for 24 plus hours after they go home from spending the weekend.
Thanks again. I take it you are in the USA? I think access to tocilizumab is restricted in this country due to expensive however I will post again on the site and see what pops up. Anyway, and which way, you have given me a boost to not just sit here and take it but to start searching for another way out of the 'nightmare' as you put it! Anyway keep up the good work with the exercising and that's my goal too!
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