First flare up
Posted , 5 users are following.
Very disappointing, but I suppose to be expected: I am having my first flare up. History: diagnosed PMR, 2 weeks 10mg pred, 2 weeks 15mg, 6 weeks 20mg, diagnosed GCA, 4 weeks 60mg, 2 weeks 50mg, 2 weeks 40 mg, 2 weeks 30mg, 6 days of 25mg with steady increasing stiffness in the shoulders and hips, cramp in one leg (the one where I have a damaged nerve near my spine). Today back to total stiffness, fever, a headache (that I recognize), sensitive scalp and jaw pain. Not good. It seems that I have not made much progress in the past months with the underlying disease....
Now back to 30mg, hopefully, it will be high enough to suppress the symptoms. I am afraid that if my eye darkens again, I may have togo back to much higher doses.Patience, patience, how very close to patient...
0 likes, 14 replies
Nefret koen1
Posted
Are you able to contact your Rheumatologist and/or doctor? I feel that this problem should at least be recorded in your medical notes, even if you cannot see him/them in the short time before the Christmas holidays. A phone call might help?
koen1 Nefret
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Oregonjohn-UK koen1
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I can only state that it seems you were either increasing up - wrong as Nefret said - and if you did start the right way it's far too fast.
koen1 Oregonjohn-UK
Posted
I had a strange complication after one week of bliss on 10mg. I got pleuritis, which lasted for 4 weeks and was under control when I got 20mg. That's when the head aches, nightsweats and fever came that in the end led to my right eye darkening almost completely. Then panic and up to 60mg...
I believe that I have Merck to thank for the whole thing, since my first symptoms of stiffness occurred right after I got a Zostavac injection.
EileenH koen1
Posted
I suspect you may be right - Zostavac has PMR listed as an adverse effect from the clinical trials. if it can trigger PMR, then it could trigger GCA. Some work has shown the presence of the zoster virus in temporal artery biopsies from patients with GCA - of course there are people where it was found who don't have GCA and probably people with GCA who don't - there is a correlation but correlation is NOT causation!. However - I do hope you have submitted an adverse event report? Yellow card in the UK, FDA report in the USA and I believe a patient can make it - obviously doctors and pharmacists can, and they are important as that is how the REAL incidence of adverse events is established. The trouble is - doctors often don't understand their significance.
As others have already said - I think too you have reduced too fast. A study done in London/Southend a few years ago showed there is evidence of inflammation remaining even after 6 months at high dose pred, considered as over 20mg. However, most UK reduction schemes would keep you higher for more than 3 months.
Just hold on to what Nefret has said - it is protecting your vision and you are being looked after. And it is early days. All the best.
koen1 EileenH
Posted
I tried filling out a form on the CDC website, but it got to technical for me and was likely meant for doctors.
I think all of you are right. The lowering of pred was too aggressive, but you do want to know that the slower pace is really necessary and that you don't get enormous amounts of pred over time that were not needed. Our plan was to move much more slowly from 20mg down, but now I suppose it will be much slower from 30mg down. That is if 30 is enough to get the severe symptoms I now experience to go away. It feels worse that when I was diagnosed with GCA and I was on 20mg. I am really checking my eyesight regularly to be sure.
EileenH koen1
Posted
If the symptoms aren't improving - don't mess about, go to 40mg. There is no point at all being on a high dose that isn't doing the job - all the downsides and no benefits to balance them out.
Perhaps speak to a pharmacist about the reporting? It's easy in the UK.
koen1 EileenH
Posted
Again as you mentioned, correlation is not causation... but collecting data is hugely important.
koen1 EileenH
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koen1
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This is my third day back on the higher dose of 35mg. I compromised between the RN (30mg) and Eileen's (40mg) recommendation. This is the third day and the symptoms seem not to be improving much. Actually the pain is worse than when I was diagnosed GCA in September. Head ache, sensitive scalp, stiff shoujlders and hips and especially jaw pain in upper and lower jaw, mostly right side of my face where I had eye trouble before. So far no problems with my eyes.
My question is: how long should I try a certain dose before expecting an improvement? I am reluctant to just up the dose, even though I realize that I could go down to the 30mg level pretty quick, since I was OK at that level.
EileenH koen1
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koen1 EileenH
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Anhaga koen1
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koen1 Anhaga
Posted