Newly diagnosed with PMR, please can I ask for some advice?
Posted , 13 users are following.
Have just been diagnosed with PMR and have already found this forum invaluable, it helped me work out what was wrong with me before my GP did! Reading all the posts on the dreaded Pred I was bracing myself for having to start steroid treatment but of course it was inevitable. Started taking Pred last week and almost overnight noticed a huge improvement in my symptoms, even though I havent yet taken the prescribed 15mg , only 10mg so far. Im wondering if its best to start with taking a dose I can function pretty well at, rather than being completely symptom free, to reduce my chances of unwanted side effects, as well as withdrawal problems down the line, as I understand I will be trying to reducing the dose in a few weeks anyway. Due to see my GP again in 3 weeks following more blood tests, but any advice in the meantime would be greatly appreciated.
0 likes, 11 replies
EileenH sally38004
Posted
You will need what you need - and it isn't a simple case of no/less pred good, pred bad. The uncombated inflammation also does damage so you really do need the right dose since if you take too little to manage the daily dose of inflammation it will will build up again and, just as a dripping tap fills a bucket sooner or later, the inflammation will build up until a level is reached at which the symptoms return.
It might be worth trying a few days of 15mg - if it makes a significant difference then rethink your dose. But maybe 10mg will be enough after a month or so and then you will have saved some pred. Pred isn;t half as bad as many think. I've been on it for well over 9 years and haven't fallen apart yet! Most side effects can be managed or avoided when yo know how. Just ask!
sally38004 EileenH
Posted
Thanks so much Eileen, that make sense and helps me understand the whole thing better - I think I
ve been kidding myself that Im managing ok on 10mg - I will take the prescribed 15mg - it would be great to be really symptom free and feel well again. Its early days so accepting Ive got to take steroids having been medication averse all my life is a challenge, but of course I realise its lucky that there is such an effective treatment available for the symptoms of PMR so Im grateful for that and staying positive ( most of the time!)EileenH sally38004
Posted
And let us know how it goes - you come round to pred when you feel well!!!!
Michdonn sally38004
Posted
Hi Sally, coming up on 3 year anniversary. I have learned a lot on the forum with great help from EileenH. Couple years ago my Rheumy was trying to rush me off Prednisone and rushed me into a crippling flare. My suggestion is to control your inflammation do not let it get ahead of you. You will end up taking much more Pred in the long run. Get yourself stabilized PMR pain free, then start a gradual taper using DSNS method, never taper if you have any PMR pain. Someone will post the link and do yourself a favor read the article on Pred long term side effects. I am lead a very normal life on Prednisone. Good luck on your PMR journey, stay positive, active and try to smile. 🙂
sally38004 Michdonn
Posted
Thank you so much for your helpful advice - this forum is really helping me understand the whole process and stay positive, so it`s very much appreciated, thanks!
Michdonn sally38004
Posted
You are welcome Sally, the forum has been a great help for me .🙂
Pmrsurvivor1 sally38004
Posted
no
the advice is that if you try to stay just below" symptom free" it will never go away. if the pain is at 7 your pred needs to be at 8 and not at 6.
always keep the pred 1,notch above the pain, and settle in for the long haul, and if you want another bit of free advice , give up all wheat
bob
patsy59716 sally38004
Posted
Hi Sally, I was diagnosed last September and started off at 10mg following advice of my rheumatologist, not knowing anything about PMR. All I can say is, I wish I had known more about it, because I have not been able to reduce my dosage since then. I sought out another rheumatologist, who confirmed for me that my starting dose was too low, and I believe that most of the other members on this forum will have the same opinion. My advice to you would be to take the 15mg you have been prescribed, and hopefully you will much more advanced in your reduction when you get to the stage I am at now. Don't be frightened of the dreaded Pred, there are side effects, but I have found with a good diet and moderate exercise weight gain is minimal and life can still be very enjoyable.
sally38004 patsy59716
Posted
Thanks Patsy, really interesting and helpful, I am starting the 15mg dose today.....
Michdonn sally38004
Posted
Sally, my wife and I have chosen an anti-inflammatory diet all organic. I has worked for us, it stopped or cured her migraines and when I cheat too much I get a flare. so I am a believer!🙂
sally38004 Michdonn
Posted
That`s really great to hear, thank you for the tip! Already starting to try to cut out some well-known inflammatory foods ( all of which are favourites of course, but it will be worth it!) and will read up on the subject - thanks!