Some symptoms coming back - what dose?

My will to help is so strong!

It makes me want to add something else.

Wish you will find a satisfying way to get some sleep at least.

Although I think it is more traditional to have the larger dose in the morning and the smaller one in the evening when splitting unevenly?

If you reduce in very small steps and very slowly then if your adrenals are going to function again they will eventually adjust - that's the view of the Head of Medicine at the local hospital. It also reduces the discomfort of each reduction step - and is to be found in this forum as the "Dead slow and nearly stop" approach.

You don't say what dose you are on - but if your adrenal glands aren't functioning then the "cure" is replacement therapy with a pred dose of 5-10mg (it varies from person to person). So you won't ever get your pred dose to zero for that reason alone.

One recommendation for us at a lower dose of pred(about 5mg or so) is to switch to hydrocortisone which is felt by endocrinologists to be more likely to encourage the adrenal function to restart.

My ostiopath said to me today that from what he can see and feel there is nothing wrong with the mechanics of my back. This and the fact that the MRI shows inflammation makes him think it is the PMR either causing the pain or exacerbating it. There is also the possibility that it might be myofascial pain (see Eileen's reply further on in this thread). Hopefully the back specialist I am seeing soon might be able to shed some light on this. 

Eileen,

i was on 5.5 mg prednisolone and cut to 5mg.  Terrible pain and stiffness.  Having trouble getting off sofa or doing anything.  Cortisol is 5 from lab work so endo said I have a little bit of adrenal function.  Please explain the titration u think might work,  thanks.

jeannae

im so depressed with how I feel.

I would say then that your long term dose is going to be 5.5mg - 5mg is simply not quite enough to manage the inflammation. It doesn't matter how you try to reduce the dose - if you get to that magic dose and try to go lower - you'll will get symptoms again. It's as simple as that.

Thanks, Eileen.  I did better at 5.5 but they wanted to lower it because I keep getting superbug uti's that are potentially life threatening.  I'm between a rock and a hard place.

Thanks Eileen for (as usual) writing such full replies. My gut feeling all along is that my problem is not a usual back problem and my osteopath agrees as he says he would usually have sorted it by now. Also, I feel the pain is muscular. My next step is to see a back specialist and see what comes up. I was expecting local steroid injections but I gather these have to be done pretty carefully with expertise. Who and how were your injections done? What is needling? 

From what you say, it seems I do need to increase my dose. At higher doses I was almost pain free apart from various joints like knees and hands causing problems from time to time. I will ask my ostiopath  about the manual mobilisation. He is very sympathetic and determined to try and help me. He is as keen as I am to try and find out what is wrong.

I was going to suggest it might be worth trying steroid sparers (methotrexate etc) but they are also going to reduce your immune sytem so really not that different. There are small pilot studies using tocilizumab for PMR that are looking good. It's VERY expensive - but if the problem is superbug UTIs and life threatening - maybe they would justify it??? It's worth asking. Where are you? UK or the USA?

Hugh:

Huh???? Yes, JOINT steroid shots have to be done with expertise - the sort I was given for myofascial pain syndrome were intramuscular and done by the pain clinic in our local hospital ( a bit different from the UK it must be said!).

I'm less enthusiastic about a "back specialist" - they really don't seem to be very good at muscles! If he doesn't do it, can your osteopath not suggest another "complementary" practitioner who does myofascial release or something similar? Quite a few of us have benefitted from Bowen therapy so that might be worth a trial.

I forgot to mention that I was using dead slow and nearly stopped method and had got down to 8mg. Because of problems with my hands I gradually went up to 12 and then started coming down again. Maybe too fast but I guess that because I had been down to 8mg i could gent down there again. I think that I am quite a drug resistant person. At the beginning of all of this, even at 25mg and higher I could hardly walk in the mornings. When I was at about 12 last April I felt pretty good - even completed a week of ski-touring in Norway! That would be impossible now.

I was stuck at 2 mg and couldn't seem to go any lower.  However, I kept trying after staying on 2 mg for about 3 weeks.  I am now going on 2 weeks at 1 3/4 mg.  I keep praying I won't have a flare up.  So far, so good.  As you can see my drop was significantly low, but if that's what it takes, that's the way I will proceed.  I'll stay at this dose for at least another week before tapering to 1 1/2 mg/day.

I'm in US.  Thanks for the info and support.

Was  your pain severe when you tapered, even though it was very slow?  I don't know if I can face another day like this.

 

The first time I tried going down to 1 3/4 mg/day, I had aching in my shoulder blade; started on the right side and then I also had pain in the left side.  I found it difficult trying to work and sleep.  I had to go back up.  What amazed me is how decreasing by such a small amount affected me.  Severe pain was when I got strep throat.  The strep throat wasn't the problem; with antibiotics, in two days my throat felt fine.  However, my PMR rendered me practically disabled.  I was told to increase to 4 mg (but I didn't listen; I went up to 3 mg).  I was able to function at the 3 mg dosage.  I didn't want to start tapering from 4 mg again.  Thank God, it worked for me.  I was told to avoid sick people.  Not so easy when you're around your grandchildren who are always picking things up at school or daycare.  At 1 3/4 mg, I do have occasional aches but nothing severe.  Right now, I'm having a problem with my right foot but I have had that for years - tendonitis (which I guess has something to do with PMR).  I'll wear my ankle brace.  Usually, as in the past, it goes away after a few days.

Thanks.  Unfortunately, I just went up to 5.5 mg because the pain was unbearable.  I'm glad you are on a lower dose.  If u were coming down f ok 5.5 mg today how would you begin your titration?  Thanks.  I know I have to go slow because t they want me to hurry because it f sever super bugs I get in bladder.

I would take 2 mg in am and 3 mg in pm. and stick with that for 3 weeks. However, I don't have other isues going on. I would mention this taper to your doctor to see if he agrees with it. Decreasing by 1/2 mg has worked for me until I reached 2 mg. I found I have to continue my taper 1/4 at a time. I'll be anxious to see the results of my blood work in a week and a half.

Personally I think 3 weeks at a dose at this level isn't long enough to know it is still OK - which is far more reliable than prayer I'd suggest!

Jeannae:

If you have to hurry to get off pred it isn't going to make any difference how you do it - if you needed pred for still-active PMR you will still need pred to manage the symptoms. If you MUST get off pred for other reasons it isn't going to make any difference whether you go slowslowslow or go a bit faster - the idea of the very slow approaches are to make the steroid withdrawal discomfort less likely and to identify the end point more accurately because you are looking for the lowest dose that manages your symptoms.

For you that is very possibly just over 5mg - by most people's standards a low dose. However - if your doctors want you to stop taking pred altogether then you are going to have to bite the bullet and put up with the unbearable pain. It doesn't matter how you try to reduce - once you are below that end point of the dose that manages the symptoms you are going to experience pain. There is no escape to that. 

You must discuss this with your doctors - the pred you have taken in the past hasn't cured the PMR, nothing does, it just made life less painful. You can reduce at any pace to get off pred - but you need to do it in discussion with your doctors to be sure you aren't at risk of an adrenal crisis. This isn't the same as the discussions about using the slow reduction as a titration to find the right dose.

Hi, Eileen

i talked to my rheum about Actemra but he said because my immune system is kicked down so much already and I am a non-metabolizer that it would take it down even further so it is a no go.  Bummer.  Thanks, though.  I was hoping.

Yes, Eileen. Thanks. I know.  I have had three adrenal crises in the last year and then the hospital puts me on IV hydrocortisone and I'm back to square one with the slow titration down once I get discharged.  This is tough. Monitoring my BP at first sign of symptoms and trying to stay on top of it.  If I can stay hemodynamically stable I can avoid another hospital stay.  Scary stuff..  

Have you tried Waterfall D mannose for your bladder infections? It does help some people. Good luck!