Fighting one for 4 years

i dont understand, im not very bright. you take pred only every other day? or do you mean you are toggling 2 1/2 with 2? i dont recall reading posts where patients are taking pred every other day, except at much lower doses.

also...the lab numbers dont mean a lot, as they lag behind the flare up of the illness and sometimes never increase at all.. further, when i first was becoming so ill with pmr my sed rate was only 31 which the docs ignored, they said it was negligible. it wasnt until it was 58 that they figured out it was pmr. it sounds to me like you need to increase your dosage for a few days to see whether that brings you relief. best wishes.

Just as an FYI, my rheumatologist is retiring and in our last appointment I asked what was the lowest dose that would be tolerable as a long term maintenance dose, given that 0 mg is best but that RA patients are now being allowed low dose pred on an effectively indefinite basis. The number I got was 3 mg. I'm sure that there are nuances and constraints I'm not aware of, but if I were in your situation I would try 3 mg daily and see if that stabilizes the symptoms.

Best of luck!

WOW 114 is super high

whenI was diagnosed last year my rate was 76 and I was in so much pain it was a challenge to do anything and never mind sleeping - was up super early every morning as lying in bed was too painful.

I just turned 70 when I got it so I feel fortunate that I was spared my 60's

Now at 13 mg and still have crappy mornings

Rates are still in the 30's for ESR and CRP

I am considering seeing a holistic practitioner to see if there is anything that can help on

that side - diet and supplements may be a strong consideration.

Also someone mentioned PRP as a potential treatment, I will be asking my rheumy about that in September.

Good luck to you

Having come through two bouts of PMR I am very aware of the disappointments and frustrations of this curse, believe me.

I have had OA for many years and advancing age does not make it any better but I find it much easier to deal with than I did PMR because I can discern patterns. I am useless until around 10.00AM but know that a hot shower and breakfast and generally moving about will have me up and running and, as long as I do not sit still for too long, I will feel passably normal until bed time.

With PMR there does not seem to be any pattern either for individuals or for patients as a whole. That is bad enough but we read over and over again that there are doctors who behave as though there are "rules" which they prefer to believe rather than listen to their patient. It doesn't matter how low your ESR and CRP are, they are not great if you are in significant pain. One formula I've read gives age over 2 minus 10 as being " normal" and would make your 28 a bit raised ( but clearly a whole lot better than 114! ) but if you type in "normal ESR "you will find quite large variations quoted. And then we read that for as many as 20% they are not relevant. No wonder we become frustrated. Do they think we are making t he pain up?

Did you doctor recommend going back to a higher dose? I've just looked at my records and see that at one point when pain returned at 4mgs. my GP told me to take 10 for a week. I was then able to return to 4 and continue reducing. It took five years altogether.... three years with my first episode.. That is all six years ago now and so far, so good.

My suspicion is that because you are toggling between zero and 2.5mg the 2.5mg is dealing with the inflammation for enough of the time for the liver not to be triggered to make the proteins that raise the ESR and CRP levels but on the day you aren't taking pred the symptoms resurface once the antiinflammatory effect has faded which happens after anything from 12 to 36 hours. If you have symptoms - the pred dose is too low. No ifs or buts - and symptoms ALWAYS trump lab results.

Hi Patti,

It is not impossible to completely get off the pred. But you have to prepare your body to have it successfully done. I had the PMR diagnosed 2015 and the sed rate is over 100 crp was about 8.9. I successfully got off pred in the same year December. As we understand that our body produce to maintain 7 mg anti-inflammatory substance daily to maintain our body to fight inflammation. When your PMR is getting better to allow you to decrease taking in pred and meanwhile your body is not capable to produce enough anti-inflammatory property you will start to feel the symptom comes back. That why you have to prepare your body to produce anti-infmty substance while you decrease the pred down below 7 mg. I go on-line to look for all kinds of food including food, fruits, veg, herbs, supplements and oils that contains high anti-inflammatory properties. I select those that are suitable for me and add big amount into all my daily meals during the whole pred. decreasing process. and keep taking them constantly every meals for a whole year after completely stopping pred. I am completely got off PMR, completely no pain and in my ever normal life like before.

The next thing that we have to deal with is the pain and stiffness. We have to understand that the tissue and tendon near the joints are burnt by the inflammation, that's why even the index drop to normal, we still have a lot of pain and stiffness. They call this frozen joint. For this part I went to physiotherapy to unfreeze my shoulder , my hip and so on. My whole body was in lots of pain and I spend a whole year 2016 to do therapies to fix the stiffness of each joints. Keep doing therapeutic exercises for another year 2017 in a daily bases. At the end of the year 2017 I completely flexible , no pain an stiffness.

I hope my experience can cheer up and help you.

All the best to everybody.

Really don't like what you are doing. I had PMR for around two and a half years. My Doctor gave me the option of reducing dosage of Pred to every second day or a smaller amount each day. I chose the latter.

Really didn't like the sound of missing days. I started on 25mgs of Pred. per day and dropped after a couple of months to around 5mgs per day. It was a few years back so the figures might be out a bit..

What struck me was how hard it was to drop below 5mg per day without the PMR resurfacing.

If it resurfaced i immediately lifted the dosage to the previous level for a month.

I gradually got the dosage down by reducing it down by half a mg or LESS .Had a number of periods where it resurfaced. Eventually i got the dosage down to about a quarter of a mg. per day.

I stayed on the lowest possible dosage by breaking the pills into eight.

I was petrified go go off the smallest possible dosage and stayed at this level for three months until i stopped. Eventually i stopped and have not had PMR for about three years..

So for me the secret was very small dosage reduction to the very smallest possible dosage.

I don't think i would have been able to drop from two and a half to nothing without the PMR resurfacing.

Take to heart the advice often given on this forum:

The goal is not getting off prednisone! That may be the doctor's goal, but realistically, the goal is taking the smallest dose that will control your symptoms!

Four years is not an exceptionally long time for PMR to last. Doctors often say 2 years, but Eileen has given links to studies that say 6 years is common and it may last longer.

Once you are at or below 5 mg, the prednisone is replacing what your adrenals would normally produce. It is hard to get your adrenals to start producing the corticosteroids again, but you should not be worried about what the steroid is doing to your body at that dose.

Believe your body!! You are not babying yourself by noting that the pain has returned.

Finally, I decided that "fighting" PMR is not a good image. It will be there as long as it is there. I view taking pred as helping my body cope with an immune system that is attacking it. Have sympathy for your poor body! Most autoimmune disorders have no effective treatment- with PMR, most of us can take prednisone to control (not cure) it. Prednisone is your friend!

Above all, be patient. That is particularly hard advice to follow after a slow successful decrease followed by a flare that puts one back months, but it is the only defense against insanity!

All the best, Snapperblue