I started 20mg of Pred.3 days ago, and am mostly pain free so far.Had my follow up Dr appt today. He will keep me at 20mg for 4 weeks, and then have me to down to 15mg and see how I do. He said the first "jump" down can be that big, but subsequent drops will be by 1 or 2 mg. Is this what most Dr's do? He also said I can start my water aeorbics back classes back up again and it was really up to me whether to go half time for a couple of times, or get right back into it. I am SO happy.......ILOVE that class. There are only about 10 older ladies like me in it, and the instructor is so nice. Feeling hopeful today !!! Went and got my hair cut after my Dr's appt !!!!!!!!!!!!
So thrilled for you. I too am on 20 mg per day and am completely pain free. I am 55 years and very active but 2 weeks ago was so sick I could barely move and had to roll out of bed of morning. I haven't felt this good in at least a year. I see my doc in 2 weeks and will remain at 20 mgs until then. I exercise daily (hot yoga) and feel fantastic. It is ashame that PMR is not easily diagnosed.
Ellen, did it take a year to get a proper diagnosis and prescription?
I waited maybe five weeks before a third physician finally gave me a test-dosage of 20mg, which seemed like an etrnity, but the 20mg kicked in good within 3-4 days.
I had also been unable to sleep much or to get out of bed without a lot of real agony.
18 months later I am just now dropping from 6 to 5mg, after my tapering needed a 6-month break. I am now feeling good with quite-limited symptoms, and I think my course has been fairly typical of PMR. Symptoms have wandered about from neck to feet.
Good to hear Manikki is responding to treatment :-)
I have had significant symptoms since March of 2015 but I initially thought the stiffness and pain must be "aging". My first appointment was In April 2015. My diagnosis was made 16 days ago. I was seen by my primary care physician twice, underwent an MRI of neck and back, 10 weeks of physical therapy twice a week, was seen by 2 neurologists, trigger point injections in the upper trapezius, and was prescribed home cervical traction and 2 pain meds and a prescription nsaid prior to prednisone. I ultimately was diagnosed by a rheumatologist who is a colleague of my husband. I live in the US.
Hello again Manikki So pleased that you are feeling much better.
My doctor has also said at higher doses it is ok to reduce by a larger amount, so I have just dropped from 30 to 25 mgs and am holding it there for 1 month. However, in a month I'm going to insist on reducing by not more than 10% of the total dose as I hear from so many people that coming down too quickly can allow flare ups to occur and tehn you have to go back up again. Very slow reductions are much better for ultimate success.
I started on 15mg of pred and within a day or two was pain and stiffness free, I was on that for 3 weeks and then put on 10mg that was 4 weeks ago he has given me 60 days on this dose, I have no stiffness but I have some tenderness in neck and shoulders and fingers of right hand from time to time , my rheumatologist told me to carry on as normal but I've found if I do too much I get tired and sore so I am trying very hard to listen to my body , don't be surprised if your body reacts to the drop in pred as mine has , I've found this forum a great help and Eileen a wealth of knowledge and information on pmr
good luck to you Molly
Yep same advice given here Molly. "Oh just get back to your normal lifestyle." Well it was fine at first whilst on the highest dose I was given, but now the reduction is taking place, it's just not possible. I've been reading "Living with PMR & GCA" Brilliant guide to managing your life/condition/meds. And the feedback and support here is second to none as you rightly say.
Oh where can I get hold of that from Karen , my rheumatologist just sent me a booklet from arthritis research uk which is really very basic and I think glosses over this condition as if it is just a minor inconvenience which makes it very difficult when you are trying to explain to people you can not always do the things you want or need to do .
I'm not sure if I'm allowed to post the web address on here but if you google "north east support groups pmr" the first one top on the list should be it. They have a shop and I got it there. It cost £5 and it's a 45 page booklet but I find it so helpful and it's obviously put together by people who know what PMR is about. It's going to be well thumbed in our house I can tell you. It's already put my mind at ease this morning.
Thanks Karen I shall have a look for it the more information the better
Hi Manikki,
So glad you are feeling so well!! Sounds like you have a good Doc.
I am in the USA. I had pretty much the same experience. Was strongly encouraged to maintain my physical activities after I was (finally) diagnosed (December 2013) and felt so great at 20 mg and reduced Prednisone similarly to you. About 6 weeks after diagnosis, I fell on the ice and shatered my shoulder. I started PT after 3 weeks and thankfully was back exercising within 10 weeks. I did not increase steroids at that time.
Now at 5 mg. I reduce using a very very slow method. Have been fortunate not to have had a flare. There is a reduction schedule posted on this site, which is very helpful to know, and there are people with exceptional knowledge and experience, such as Eileen, who have helped all of us.
Good luck!
Paula
If you follow this link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find a link to the northeast website as the second entry. The rest are other useful educative links - all reliable and approved.
The slow reduction mentioned elsewhere on this thread is to be found in the replies section of that thread.
You'll all have come across the authors of the book on this forum - and yes, they've all been there themselves ;-) and spend a lot of time trying to educate doctors too!
That's great news - and you have a sensible doctor too!
However - I'd ask him nicely if you can do that big jump 2.5mg at a time - why not? 2.5mg done twice 2 weeks apart is the same as 5mg done once and far less likely to cause discomfort.
I have had significant symptoms since March of 2015 but I initially thought the stiffness and pain must be "aging". My first appointment was In April 2015. My diagnosis was made 16 days ago. I was seen by my primary care physician twice, underwent an MRI of neck and back, 10 weeks of physical therapy twice a week, was seen by 2 neurologists, trigger point injections in the upper trapezius, and was prescribed home cervical traction and 2 pain meds and a prescription nsaid prior to prednisone. I ultimately was diagnosed by a rheumatologist who is a colleague of my husband. I live in the US.
That is a fairish catalogue of people who SHOULD have recognised PMR - in some countries neurologists also deal with PMR and if a physical therapist can't recognise it they need to go back to school. And the physical therapy probably did more harm than good.
I suppose they all made a decent living from it though.
I do despair sometimes.
Ellen,
would you you tell me about your upper trapezius pain , injections, how they found it, ... Was it cortisone injections? Or anesthesia injections? Did it help or just the prednisone helped pain go away?
my physical therapist made me do push-ups to failure and since then I've had pain daily between shoulder blades and even tender spot on right side of spine. Not sure if it's PMR related, I still have some PMR pains in typical areas. So, sorry your diagnosis took so long. Mine was over Christmas so I didn't get in for 6 weeks. And after researching on Internet I said I had PMR symptoms; after high SED rate they agreed.
Thanks, Layne
Lidocaine was injected into upper trapezius. It had no effect. It is a very strange procedure because it causes momentary involuntary muscle twitching which I found odd and uncomfortable. Predisone has completely erased my pain in the neck, upper back, shoulders and hips. I feel great now. I hope you find some relief soon too.
I trust you sacked that PT? How ignorant can you get!
What you are describing sounds like myofascial pain syndrome - the same symptoms I had on top of PMR, I had cortisone shots into the trigger spots but also manual mobilisation - physiotherapist used her fingers to find tha hard knots and work them out. Bowen helps to of course.
Thanks Eileen! Yes, quit the PTs!! At first I liked that he helped me learn to squat down and engage my gluteus muscles and posture, but the last straw was the 2nd or maybe 3rd time he asked why I was on Prednisone!!! Idiot!
I had previously questioned him if he knew I had PMR. I'm tempted to send them a book on PMR!
I'll ask my Bowen gal to work on that area. She's done good with my lower back and shoulders. Tried working my hip flexors... But I think they've turned to Tendonitis.
Live been able to walk more lately due to less lower back pain! Yea!