Can't seem to get over the 4 mg hump.

As always thank you for being the voice of reason.  I felt rather well at 4mg and will take your advise staying at that dose for a few months more inspite of what my Rhemy wants for Christmas.  Thanks again for your reply.

If you feel well at 4mg - that's where you need to be for now. It's your pain and your body. 

Do you get more sense out of your GP? 

Hello again Eileen,  I wish I had known about the correct way of reducing with out now suffering the latest relapse, but anyway, have been to the hospital this afternoon with the blurred vision/headache etc, and it was ok, which is a relief in itself.  They think it`s the lowering of the Pred that gave me the symptoms....they also said, look out for temple pain, jaw pain when eating and sharp eye pain (for GCA) So hoping by going up to 20mg again...this will put me on track.  What I would like advice on is...can I seperate the dose, by taking 10mg am, 10 pm, would this work?  I don`t sleep on this high dose and feel very odd....thanks for any advice.

The best anti-inflammatory effect and lowest rate of side effects is achieved by taking the whole dose in one go as early in the morning as possible. Some people find splitting helps, others don't. Some people find taking the dose at night immediately before going to bed works - everyone reacts a bit differently. So, yes, it may do - just try. 

If you reduce with the very slow method I describe these "steroid withdrawal" problems are less likely to appear and in the end it is often a faster reduction overall. You can reduce almost continuously at first and then slow down as you get closer to the "maintenance" dose - for Jo-anne this seems to be 4mg. Many people get stuck at 10, others at 7 - but it seems to be lower using the very slow reduction pattern.

Yes, my GP seems to be more knowledgable about pmr.  During my  last visit to him we were discusing how my Rhemy wants me off the pred ASAP and he comented that 2 years is a bit unrealistic it is more like 4 or 5 years.  

If I were you Jo-anne, I'd abandon your rheumy, providing of course your GP is supportive. Your GP is right, you have a diagnosis, you know how to reduce and you are doing well and if your GP isn't going to disappear in a puff of smoke I'd ask them to manage you. After all, all you need now is a prescription for enough pred and the odd blood test.

Thank you Eileen, I may wait till after xmas to split the dose, don`t want to make things worse than they are.......y.es, the tapering will be VERY slow for me next time, and my doctor agrees.....they seem to be more realistic in their thinking of tapering than a lot of Rhemy`s, maybe it`s because they have to deal with us when it all goes wrong.....Thanks again...(for all advice on here)

Hi John- Thank you for your well wishes.

I have also experienced that morning stiffness, especially now that I am trying to regain my post 3.5 mg attempt.  Before starting my recent reduction I felt great at 4.0 mg, I would have to say I felt 95% of pre PMR.  That is the reason I tried to reduce again but my body was not ready yet as Eileen had stated.  My doctor said this is the only condition that 0.5 mg of pred makes a world of difference.  

I am so thankful for this forum.  Before I found it over a year ago I felt like I was the only one going through this.  But now I am encouraged by those that have said good-by to PMR and I am grateful for where I am when I read of those in much more pain then I.  I am wishing you and all on this forum a less pain full 2015 and to all thanks for being there.

Another doctor to clone! I've said this for the last 4 years!

I simply cannot over-emphasise the fact that when you are reducing you are looking for the lowest dose that controls the symptoms. It might be 9mg, it might be 4mg - but that is a longterm dose which you stick at until the underlying autoimmune disorder burns out. At some point you might get a bit lower - or if you are really unlucky you may have to go up to accommodate an increase in activity of the autoimmune problem. 

It will go at some point, that is obvious from the Club Zero members - but when that will be remains a mystery. In the meantime you need some pred if you want a decent quality of life.

I wonder Eileen if you could throw some light on  a mystery to me!!  As I have posted previously, I relapsed at 7mg, went to hospital, and was checked for blurred vision etc....well, I have now been on 20mg for 9days, and strangely enough the eye problem is easing, but the pain in shoulders/hips etc are not...by 4 o`clock (I take Pred at 6pm) the pain starts.  What I can`t understand is, before I relapsed at 7mg, I wasn`t in pain, and 15mg did the trick before, when I had to start at the beginning again (with previous relapse)......I definitely do not want to go higher unless really necessary.....any suggestions would be welcome please!!

Thank you.

I've written on another thread this morning about myofascial pain syndrome. Google it for an explanation - but in it concentrated areas of cytokines form to make trigger points and they can then cause knots in the muscles which irritate or even pinch nerves. Two of the main trigger points can be in the shoulders and they cause referred pain into the arms, upper back and neck. Another pair are in the lower back, about over the sacroiliac joints, and they cause referred pain into the hips, buttocks and thighs. If they get really bad you can have sciatica down to your ankle! 

Over a longer time and at higher doses oral pred can ease it but any extra tension, carryong shopping or even tripping can make it far worse. Local cortisone injections work far better than oral pred, but you can also get physio to mobilise the trigger points (not exercises type physio, that just makes it worse, so you do need a physio who is "of the faith" so to speak), a massage therapist can also do the necessary - and I and a few others have benefitted greatly from Bowen therapy.

But the MPS and the PMR can easily be confused and so, in its early stages, can bursitis in the hips.  

Thanks again for that, I have looked it up, and it seems more than likely the problem....(MPS) I live in Norfolk, and will try and find a Bowen paractioner, don`t think there are many  to choose from though.  I have had massages in the past, but they have made me worse.  However gentle I ask for, they are too firm! We  have stress in the family at the moment, so don`t think that`s helping...anyway, sorry to have bomabarded you with all my queries in the past...thanks again, and hope we can all on this forum strive for a stress and pain free Christmas!!  We live in hope.....

No need to apologise! That's what the forum is for - and it is far more use when someone with the t-shirt responds isn't it! Isn't it funny how different we all are - I still love a hard massage and it doesn't make me worse usually. But I do drink a lot of water after one - to flush out the released nasty bits!

And you are quite right - stress, especially family stress is definitely contra-indicated in PMR!