It's day 3 of tapering down from 20mg to 15mg and so far so good. I do have pain mainly in my lower legs (Shin area mainly) along with feeling sore but I can live with that. I'm a bit concerned that I have started to get the odd "flash" headache, they only last a very short time but Ouch it really hurts! Has anyone else experienced this when tapering down?
I've given up trying to get an appointment to see my Rheumy, the person who I've been speaking to there seems to get in a fluster every time I talk to her! As my Rheumy and GP seem to be working together in this for me I'm hoping to see my GP shortly to talk things over with him. It's nearly time for me to have a follow up blood test anyway so while I'm there he can give me the paperwork needed to do that.
I hope that you are all not in too much pain and are maybe even having some good days
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Dee29
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I just read your previous post and I'm puzzled, if you have a possibility of GCA why are you lowering your dose at all at this stage? Twenty mg isn't enough to control GCA although it is near the top of the scale for PMR.
If the inflammation is still active a 5mg reduction may be too much. Many of us reduce to 17.5mg from 20mg as this is closer to the 10% maximum we talk about. The stabbing pain could be the illness or steroid withdrawal. Another reason for tapering gently. As time goes on you will learn how all this affects you personally and you can read your body's messages. You shouldn't feel an escalation of symptoms when tapering.
Hi am at same stage as you going g down to 17mg this week but as I still have pain my knees and hips worse my rehmatlogy consultant now wants me to take methotrexate as well ! Have only been on predicted since beginning of July and think it's way to soon ! Hope all goes well with your bloods and G P appointment think I may have a battle with mine as I realy don't want to take any more drugs this soon Wishing you well with everything x
Sorry I haven't been around for some time, it's been absolutely manic here what with trying to find a car to buy ( I lost my DLA at the beginning of August so lose my Motability car too), looking after my Mum who has Dementia and has been having quite a few bad days and my PMR. On top of all that a visit to my GP 2 weeks ago has absolutely knocked me for 6. I went to get the results of a chest x-ray and breathing tests, the last thing I expected him to tell me was that I have Pulmonary Fibrosis ...so now I have THAT to contend with too!
Getting back to my tapering of Steroids, I stuck with the drop from 20mg to 15mg, the first week or so wasn't pleasant to say the least but it has gotten a bit better as time has gone on. Next week will see another drop from 15mg to 12.5mg, a smaller drop so hopefully I won't get too many more pains, etc. My GP said to try and drop again after 2 weeks of 12.5mg but I think that is too short a time and that I should stick to the 4 weeks that my Rheumy told me to do, what do you think??
Thanks PMRpro, thats all I need to know, I will be giving it 4 weeks for sure. To be honest, my PMR is the least of my problems right now so why rush it
I forgot to say, since dropping to 15mg I have less "foggy brain" and my headaches have now almost disappeared, only the slight one now and again. GP says I definitely have GCA so I'm wondering if this is the case why are the headaches slowly going away??
I hope you are all as well as you can be... even though I haven't been around, I still think of you all often x
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