need some advce

Hi Faye, no sorry can't help you with that one, but you do speak of a herniated disc, so could there be some sort of trapped nerve thing going on? Just a thought. Hope you get it sorted out soon. Regards, christina 

Faye, I have numbness in the soles of the feet close to the toes and in the toes themselves.  In my case, it is due to spondylolisthesis -  slipped vertebra, so I wouldn't be surprised if your herniated disc is to blame.

I know....I'm in denial.....I don't want any back surgery.....hopefully

I can live with it......Some guy wrote a book titled

Getting Older is not for Sissyies and don't we all know that?

After reading some of these posts I realize I'm pretty lucky.

When I was diagnosed about year and a half ago my doc

started me at 20mg......i actually got down to 4mg per day and

was hopeful I could get off the pred.  But.....along came the

dreaded "relapse" my doc warned me would probably

happen.    I had a horrible attack of sciatica the first of the

year and during that the sed rate went back up so I'm

once again on a weaning program and doing well with it.

If you don't follow sed rate what do you base increasing

or decreasing pred on?  By the way....I don't have any

of the side effects I read about....again....really lucky!

SYMPTOMS, always symptoms! My ESR (sed rate) has never been above 7, it is more often 4, even when I couldn't move. I have only ever been able to go by how I feel. I stick at a new dose for 6 to 8 bweeks before trying the next 1mg step. Any wobbles and I go back to the previous dose, wait a bit and try again. I'm fine at 4mg, not so good at 3.5mg (alternate days 4 and 3mg). Hlaf a mg really can make that much difference.

Originally I was put on a 6 week taper: 2 weeks each of 15, 10 and 5mgs then stop. It was a miracle in 6 hours and the pain was back as bad as ever, if not worse, 6 hours after missing the first 5mg tablet. I'd been OK at 5mg too - but it then took me 4 years to get to 5mg again! Once you mess about with doses it can become very difficult.

Faye

As Eileen says,  Symptoms- your ESR and CRP whilst they can be good as guidelines, that is all they are, they can both or singly be raised for other reasons - all they tell  you is 'something is going on'.

If you follow this link https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and visit the website you can read Ragnar's story.  This gentleman led us to explore reduction and how to make it easier.   There is a Dead Slow and Stop and one called Tortoise and Hare.  They have been used successfully by many people, although they have both been devised by patients.

Anytime I can stay at l0 or below I'm okay with that, doc told

me that's a very low dose and after reading some of these

blogs guess I'm pretty lucky.  My doc always kind of leaves

it up to me always saying "how do you feel?"  Any pain?

Since I have some herniated disc in my back I'm not always

sure which thing is the problem at any given time.  

 

Faye, I was very lucky when I developed PMR. The pain was so specific and so different from any other pain that I have ever experienced before that whenever I experience pain I am able to say if its PMR pain so possibly a flare or simply pain because I have overworked my muscles. Regards, christina 

 

Hi padada, what's importantbis that you stay on each dose for at least a month - I stay on each dose for 6 weeks or more. Let the dose of pred do its work without rushing it. Even if By day 2 of my new dose I experience no pain or discomfort at all I am never tempted to think, oh great there can't be much inflamation there! And so reduce the time I'm on that dose. And of course if you are still experiencing PMR pain do not reduce further no matter how long you've been on that dose for.

if I remember you are newly diagnosed, I've just been through my PMR diary and it was a long time before most of the PMR pain went away for good and the pain I was left with was muscle pain from over working etc. 

Good luck, christina 

There is dispute about the % of normal bloods - but if anything I personally would suspect it is too low! Why? Because too many doctors say "Normal bloods so it CAN'T be PMR/GCA" so those patients with perfectly acceptable PMR symptoms clinically speaking are ignored, classified as fibromyalgia (where the problem doesn't raise ESR/CRP) or something else, and never offered a trial of pred and included in the statistics for PMR at all. Pred does NOT work in fibro - it will work if the patient has either PMR or a mix of both, which is also possible. One consultant I know says in the paper that bears his name that he has never met a patient with normal bloods. I wrote to him offering my clinical history to consider - I got no reply! Mind you - I have been at meetings alongside him now and he seems to be getting a bit more broad minded!

And does it matter whether the figure is 20% or 10% if you are the person with the problem? It is definite that there are some people who don't have raised bloods while others do. The doctor shouldn't be concerned whether it is 1 in 10 or 1 in 5 - for you the problem is for 1 in 1.

Yes, I am relatively newly diagnosed as of November 2014.  You mention that I should not reduce my dose if I am still experiencing PMR pain.  Even on this current dose of 15 mg. I do have some achiness, but not severe pain.  Should I still BEGIN a taper even though I am not 100% pain free? 

You also said that it was a long time before MOST of your PMR pain went away for good, so I take it that during your tapers you still had some lingereing pain.  Am I understanding your situation correctly? 

I guess I am still not clear as to whether I should be looking for a total pain relief as I proceed or if a partial pain relief is acceptable.  Thank you for your input to me.

I want to reduce my dose of prednisone because of the side effects that it causes.  I have loss of appetite, taste, elevated BP,  anxiety and oral  thrush since starting prednisone.  However, the prednisone has stopped my pain and stiffness by at least 90%.  Thank you for any advice or comments.  

Hi padada, I have actually just been on another thread discussing this very subject with Constance who dispite being on preds and her PMR pain being greatly reduced by the preds is nevertheless still experiencing pain albeit nowhere near a bad as it was pre diagnosis. In my PMR diary I was still experiencing some, albeit, spasmodic intervals PMR pain but no where near as bad as pre diagnosis. But the deep penetrating pain in my hips and shoulders had gone and the only way I can discribe it I was left with residual pain. I had this pain well into 2 taperings, over time even the residual spasmodic intervals of pain became fewer and fewer. So yes you have understood me correctly.

i would attempt to taper. You will know if you are experiencing a flare because all the deep penetrating pain returns. I experienced a flare when reducing from 9 to 8mgs just prior to Christmas 2014 and believe me to once again wake up with pain in my neck and hips when that pain had all but gone was heart breaking.

i have just successfully reduced from 9 to 8.5 and I once again experienced some very very mild increase in pain. However, I followed Eileen's go slow and almost stop reduction plan and over time the pain went and has not returned.

there are some of us that following diagnosis and when on prednisolone are very lucky in that most of the pain goes very very quickly and we live our lives whilst still with PMR and on preds almost back to our old self. However, there are definately some whose PMR pain is greatly reduced because of the preds but unfortunately for them still experience considerable pain. Why? I simply don't have the answers. The trouble is that this condition affects us all differently and that includes how and to what degree our bodies respond to the condition and the drugs that are used to control the inflamation. Also you have mentioned the magic 90% reduction in pain and as many say, that may be the maximum reduction in pain they'll ever experience.

you say you are on 15mgs. The usual taper down from there is to 12.5 for a minimum of 6 weeks. If you are still a little anxious why not taper by 1 mg each time , stay on that new dose for 6 weeks and then when you hit the magic 10mgs then follow Eileen's reduction programme, which I follow but only taper by .5. Can I just ask, what reduction plan has your GP suggested and do you ever have blood tests to see how your ESR/cpr levels are doing. Regards, christina 

Then 90% is probably as good as you will get - now you need to reduce your pred dose in small amounts at a time until you find the lowest dose that gives you this degree of management. Although the usual suggestion is to 12.5mg that is too big a step for many people. If it works for you, fine, but if you try a 2.5mg drop and it is too uncomfortable, don't panic, go back to 15mg for a couple of days and then reduce 1mg at a time which should make it much more comfortable. It isn't just a return of the PMR pain you may experience but also the body has got used to the dose of pred it is on and may protest - and the protest usually takes the form of similar symptoms to the illness for which you are taking the pred.

If you follow this link to another thread on here you will find the way I have reduced since 15mg - with no discomfort or flares:

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

We ALL want to reduce our pred because of the side effects - but don't try to rush or ever force a reduction thinking it will be oK. If you do that you will end up in pain again and needing a higher dose all over again. It isn't worth it!

Thank you for all that input.  I get it.  I am ready to taper and I feel armed enough to be able to gauge my pain status regarding the taper. It is so wonderful to hear from people who have been through this and can share what has worked or not worked for them.  Blessings.

I will reduce slowly as suggested and try to discern my comfort level.  Thank you for the encouragement it is so needed and appreciated. 

Padada, this PMR lark is a very uncertain and worrying experience, but having said that we all need to reduce as it's very easy and reassuring to stay on a high dose as that's where we feel secure. I was so worried and anxious reducing from 9 to 8.5 following my flare reducing from 9 to 8 pre Christmas 2014. But I knew I had to take that leap and guess what I was fine. All the best with your reductions. Regards, christina 

I appreciate your expert counsel and encouragement.  There is no one who understands this journey better than someone who has also been on it.  I hope I can be encouraging to others when I have some success stories to share.