Hi, I'm new here , just recently diagnosed with PMR (November 2017) , and at the stage now where I'm interested in finding out more about the condition. It's great to find this site to read about other peoples experiences.
I was started on 15mg Prednisolone, and just now gone to 7.5mg following latest blood test and GP review. Having some symptoms which GP says could be either side effect of Prednisolone or of another drug I take to control BP , so have been prescribed another drug which also comes with a long list of possible side effects! Treatment is obviously not as straightforward as I initially mistakenly thought.
At this early stage, I've been having regular GP reviews and followed his advice regarding prednisolone dosage. I see from some posts on here that some people take more control and adjust their dosage according to their current condition. Is this something to be undertaken when I'm further along and is there any guidance you can point me to? Grateful for any comments.
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chriss48
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Hi chriss and welcome to the site. You have gone awfully fast in your tapering down. I was diagnosed in March 2016 and have only just been flirting with 6.5 mgs using the dead slow nearly stop method recommended on this site. I have had no flares and only now am I struggling with extreme fatigue. This is probably because my own Adrenal Glands are having to wake up. If your symptoms are like the early days of PMR then your body is telling you that the inflammation is building again. The only way to prevent a flare is to go back to the last dose you were comfortable at.
What other meds are you on? Are they so called steroid sparers?
Diagnosed same time. Started at 30 (which I have learned here is a tad high) and now tapered down to 12.5. Wisdom here helps me negotiate a kinder and more sensible dose than my doctor sometimes first suggests. (She wanted me to go from 15 to 10 which is more than then10% recommended here, so 12.5 was good compromise).
I was diagnosed with PMR late in October, and have tapered on a split-dose from 24 to 10 mg with few hassles. I too wonder whether 24 mg was unnecessarily high because split-dosing muddled matters.
My approach has been to taper a little every week rather than DSNS. Currently, I am tapering at roughly 0.4 mg prednisolone a week but I expect this rate to slow somewhat as I approach 7 mg.
Thanks for all helpful comments and suggestions, there's so much to take in, I feel as if I'm just starting out on a long journey. As a first step, I intend to buy the book suggested by Dorsetlady, that sounds really helpful.
Re the pred dosage, I've started with a wheezy chest, had it 4 days, tried to get GP appt. but none available. I'm just wondering if I should try an increase in prednisolone and if so by how much? Be grateful for any advice.
Welcome chriss48, you've had all the advice I can see but I would not increase your pred at this stage- see your GP first it might be a chest infection - I have these each winter (a non- smoker) after starting pred (I do have GCA also though) so tread carefully before upping your doses - all advice needs to be carefully considered as it is not a one size fits all journey to recovery.
All the best
Hi chriss48, I am a "Newbie," too; diagnosed with PMR/GCA in November 2017. If you read my posts don't freak out... I don't think my journey has been 'typical." It's been a roller coater of ups and downs.
I don't have enough knowledge or expertise to give you advice or comment intelligently on the medical aspects of your disease, but if you need emotional support... I'm here.
Good luck and I hope your time on this road is short and easy.
Thanks Melissa, I have just been reading through your posts, what a journey u are having, but great that you have kept your sense of humour throughout it all, hope things improve soon . I have felt totally isolated with the diagnosis, nobody I know has ever heard of it, apart from one person who commented, "oh poor you, that never goes away". Not really what I wanted to hear!
I've obviously read the various advice and information leaflets on PMR but there's nothing like being able to tap into fellow sufferers for information and support. So glad I found this site.
It is (they both are) very isolating disease(s)! I'm so glad you found this site too! You won't feel so isolated anymore I promise you!!!! We have your back!
As SheffieldJane says you have tapered very fast. When I did that it last year it triggered a flare which has taken me months to recover from. I had to go back to 15mg and and am now on 9.5 and have learned to take it very slowly. Think tortoise not hare If your symptoms are like the PMR symptoms that took you to the GP in the first place I would definitely go back to the Pred dose you were last comfortable at. You need to get the underlying inflammation under control and stabilised before you consider tapering down. Ideally speak to your GP first but if you can do something to avoid a flare, personally I would! Good luck!
Not really helpful -"it never goes away!" Which isn't necessarily true either. Glad you've got DorsetLady's missive which is very helpful as is Kate Gilbert's book. Also look up things under this site under search and that gives you a wealth of info. too.
Welcome Chriss ,l am sure that like myself you will find this site very helpful ,l cannot add to the good advice you have already been given and am sending you good wishes as you manage your PMR.
Thanks everyone for your welcome and messages of support, they are very much appreciated. I'm sure I will be following up with lots of questions.
That reminds me, just a quickie, does everyone carry a steroid card? I know the guidance says a card should be carried and kept up to date, but I've had various reactions when I've asked about one. The practice nurse said she hadn't seen one for years, the GP said try the chemist, and the chemist looked blank, had a look in various cupboards and sent someone to see if another chemist nearby had one, but to no avail. They are supposed to be ordering me one but haven't seen it yet. So just wondering if no one really bothers with one any more, be very interesting to have anyone's views on this, thanks again.
I managed to get a card from my chemist, rather dusty though. I do wear a bracelet as well as I thought that would be more obvious if I were in an accident or something. Some people put information on their mobile phones too.
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If your symptoms are like the PMR symptoms that took you to the GP in the first place I would definitely go back to the Pred dose you were last comfortable at. You need to get the underlying inflammation under control and stabilised before you consider tapering down. Ideally speak to your GP first but if you can do something to avoid a flare, personally I would! Good luck!
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