just been diagnosed with. pmg

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hi. im andy have started tretment of 15 prednisolone 5 days ago havent had any reduction  in pain so far how long does it take to take affect.it probably varies but would appreciate your experience thanks

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  • Posted

    Hi again, I'm now on day 6, my blood results today show a remarkable drop ESR from 67 down to 27, and CRP from 106 to 6!!

    I am taking 15 mg preds, and will return to see GP in 2 weeks.

    I asked him today if I need to take bisphospanate, he thinks it's to soon?

    Alls going so well I spent 3 hours gardening yesterday, bit daft as I ache today. I'll be more careful in future.

    Anyone any views on bisphospanate?

    • Posted

      Have you had a Dexascan? If not you should have one to check your bone density.
    • Posted

      Hi, I also asked about a bone scan, the GP again thought it a bit soon? Is he being over optimistic, he seems to think I'll be through this in 6 months, thats not how I see it from following these posts and reading the book.
    • Posted

      Does your GP think you have PMR? If so perhaps they should read up on it! I think most literature says it is long term and mentions two years for starters. If you are going to take steroids for any length of time you should have a Dexascan in the first three months or so as a side affect can be reduction in bone density and you may need something to help this. I would wait for a Dexascan before taking biphosponates though.
    • Posted

      Yes he has diagnosed PMR, proof being my almost instant pain relief when started on preds. I will see him about a scan, when I mentioned it he said he would have to collect some figures?

      Having read more about bisphospanate the side effects sound awful so I'm in no rush if it's not absolutely necessary.

      The morning I'm struggling with back pain again, I overdid the gardening and have learnt a lesson.

    • Posted

      Your doctor does not seem very well up on PMR, I do despair of them sometimes. It would be interesting to see what figures he is collecting. I filled in a pink form signed by my doctor and PMR was actually mentioned on it as a priority for a Dexascan amazingly. I am sure it varies from place to place. As I helped raise money for the scanner I think I had a certain entitlement though.

      I love gardening but try and plan it in bits nowadays. I must admit I managed to get a lovely display in my front garden this year by flook, things came out together and the colours matched! 

    • Posted

      Like ptolemy - I think your doctor needs some serious education. And he should start with the guidelines where starting the patient on pred and vit D and calcium supplements includes the advice to order a dexascan to get a baseline reading - whatever it is. You need to know where your patient is BEFORE they are on long term steroids. And 6 months is in his dreams!

      If I haven't already recommended this link

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      I am now saying to look for the "Bristol paper" and print it off and hand it to him to read. It is aimed at GPs to help them manage PMR and is from a top UK PMR rheumy (not in semi-retirement I think, still doing research) so don't let him diss it - it isn't from Dr Google. Their reduction scheme is a bit optimistic but it's better than what your GP is going to offer I suspect. It is aimed to be spread over 2 years - as a minimum, it must be individualised and that recommendation comes from the latest (2015) international recommendations from the EULAR/ACR (European and US colleges of rheumatology) for which there is also a link.

      With a bit of luck you may be able to get him round to a bit more sense without getting his back up...

    • Posted

      Don't rush into the bisphosphonates.  Do a lot of research.  Studies have been done showing that natural methods for improving bone density work as well as or better than pharmaceuticals.  
  • Posted

    Hi there Andy,

    For me I was relieved of pain within hours, literally within five hrs I felt better & by the next day all pain was gone. Everyone probably does react differently to the prednisone but usually you should feel some relief within a day or two. My problem is that I was pain free for two months of taking 10 mil once a day, in the am very early at 6. My Rheumy started to taper me a week ago to 5 mil, after the first day on the 5 pain began, I was frantic, day two full blown pain again. He then upped me back to the 10, better now but not the 100% pain free I was befroe the taper and don't understand why. I am learning that you must advocate for yourself because Dr's are not willing to accept the symptoms and want to go on with all these tests, MRI's, bone scans etc. Good luck!

    • Posted

      Sharon, you are lucky that your doctor actually pushed for lots of tests, mine just said I had a virus, lasting over three months! I went privately to a rheumie in the end.
    • Posted

      From what I've read the drop from 10 down to 8 is very difficult, ie a 20% reduction. I'm a newby on 15 GM's, my GP tells me I'll be put on 14 mg in a couple of weeks, he has two other patients who have PMR so has some experience.

      The last thing we need is more pain, from reading this forum I've come to the conclusion its best to reduce preds very carefully.

    • Posted

      "he has two other patients who have PMR so has some experience."

      but you just said he has suggested you'll be over this in 6 months - so are these also new patients?

    • Posted

      Hi Ptolemy,

      Yes he does want tests but MRI isnt going to show any more now than my scans & exrays which already shows arthritis & bad osteoporosis. He tells me it will show whether my condition is degenerative or not, well we all have some degree of degenerative arthritis, thats where it begins. He also wants to see if I have anything wrong in my hips, Ive has hip scans & of course it showed arthritis so I feel that the mris are a waste of time. Also my scalp pain would have nothing to do with the mris he ordered so he needs to treat my symptoms and not look elsewhere where I have no problems.

    • Posted

      You CANNOT drop from 10 to 5mg in PMR. Not after 2 months on 10mg. PMR is not the same as other inflammatory states where a taper of pred is used.

      You have been lucky to be OK at 10mg, that is a low dose this early, but I was also fine at 10mg the first time I got there: 2 weeks at 15mg, then dropped to 10mg for 2 weeks. Then I was to drop to 5mg for two weeks and stop - at 5mg I was also OK, I could have lived with that. But I was to stop - and in the same 6 hours I got the relief like you did, after missing the first 5mg tablet I was in worse pain than before. I had to go back to 15mg to get it under control and I never got below 9mg for a few years without a flare. 

      Like ptolemy I think you are very lucky he wants to do a lot of tests - there are some there that i'd like to have done but it isn't going to happen. But see the post i've written to jancorb further up the page. I know yours is a rheumy - but he needs educating about PMR too. The reductions must be slow below 10mg (providing you got there in the first place). No reduction should be more than 10% of the current dose - 1mg at 10mg, 1/2mg by the time you are down to 5mg - and for many people even that is too fast. There is a slow reduction scheme in the replies posts of that link I gave jan

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      It may look very slow - but it can be 1mg about every month and you don't need anything faster than that. Even 1/2mg a month that succeeds is faster than trying 5mg at one go that fails and sends your patient back to 10mg with unmanaged pain.

    • Posted

      Hi EileenH,

      I forgot to mention that today the Dr went over my original exrays & scans which he said did show arthritis, I already have severe osteoporosis for many yrs due to eary hysterectomy & I take extra calcium & vit d, my d levels are fine. He said that the MRI's which I rescheduled probably will show what we already know, but of course it was the Rheumy who ordered them so he would not say whether to have them or not. He did say that I do not have a fractured hip or bone because it would be very painful and I have no pain. Some of the tests, like full body bone scan, mris will only confirm what is already know, arthritis, bursitis, or tendon damage but in the long run the treatemtn witll be the same or at least similar. Shots, meds therapy etc. While I have excellent insurance covering it all except for a deductible I still would rather wait for some of these tests until compeltely necessary, not as a meansto rule things out becuase I feel it is all guess work on the Dr.'s part and theyt use these tests  just to cover themselves. I may be wrong but I have so many that proved negative to what they tell me...(Thank God).

    • Posted

      CMB (cover my butt) medicine - generally practised in the US because you are predominantly paying patients and they can make lots of money out of you. It has also been shown to happen in some places in Germany - far too much surgery for exampe where conservative medicine would be better. But conservative approaches mean watching and waiting - and you can't charge for that...

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