Doctor weaning me off steriods

Hi Eileen I hope the specialist is more helpful as well the gp has dropped the pred to 10mg form 15mg for 2 weeks then down to 5mg till I see her again my all my muscles feel really sore today is this because I've dropped 5mg😞

That is far too big a drop for someone who may well have PMR but you could well feel awful just because of the drop in dose - it is called "steroid withdrawal rheumatism" and can be avoided by reducing in far smaller steps. If you are lucky then it will improve over the 2 weeks on 10mg so at least Christmas is fairly comfortable for you.

Have you got enough pred to use 12.5mg this week and 10mg next week? That might help the pain some. 

Daniel has said the rest - plus I'm glad she isn't my GP, and I am nasty enought to add her to my little list of doctors I hope develop PMR some day and meet equally poorly informed doctors who look after them.

Yes I do have enough pred.Do I half one of the 5mg ones because I don't have 1mg ones just the 5mg omes?

Are they plain white ones or red enteric coated ones? You can cut the white sort, not the enteric coated variety, the coating is to protect your stomach.

They are the plain white ones.

In that case yes, no problem in cutting them. The chemist will have pill cutters that make it easier but lots of people manage fine with a knife. 

Tablets that are slightly rounded/convex surfaces can be broken in half with just your fingers: place the tablet on a hard surface and place your thumbs on opposite sides of the pill. Press hard and it will break. Doesn't work with flat tablets unfortunately!

Eileen:  Do you ever recommend Lyrica or similar drugs for possible PMR overlap with Fibro?  Thank you, 

I don't recommend anything! Never having had fibro I have no idea what it is like - I just know that there are some things about PMR that doctors will tell you show you haven't got PMR, you have fibro. And it may not be true.

I was working from a platform at ground level - and I realised that whatever it was I had that made life very painful it was either PMR or (though far less likely) fibromyalgia. Some of the things that pointed in the direction of fibro I had had for years but they were very specific and I knew they could be managed with various manual treatments from an osteopath and a Bowen practitioner. The rest disappeared when a somewhat patronising rheumy gave me 6 weeks of a pred taper to help me over a trip to the USA. In 6 hours almost all the pain and all the stiffness was gone - that ruled out fibro and suggested PMR because all the things were absolutely characteristic of PMR.

If it goes away with a moderate dose of pred - it isn't fibro. If other forms of treatment ease it - it probably isn't fibro. If at the end you are left with something that could be fibro - no reason not to try the supposed options for fibro. If they work - it's all good.

Nefret on here has both - she uses some of the other stuff. I'm sure she can comment.

Thank you very much Eileen.  I have been on Pred for 4 years and am tapered down to 3 mgs over 12 months but I hurt like hell.  I am upright can hike but my shoulders, arms, back and hands are weak from pain.  I do not have a raised ESR/CRP but I do have arthritis in these areas.  I shall consult with my Rheum who has listened to me all the way.  I really do feel in my case there is some overlap.  

 

The first question to ask is does a higher dose of pred deal with any of it? I know what is what of my pain so whether it is worth trying a bit more. For some people, even a low dose of pred will stop ESR/CRP rising again but there can be symptoms. It certainly isn't straightforward - but PMR pain is the easy one to deal with. Lyrica and co don't always live up to their claims.

Again thank you Eileen!  I agree, but it is so hard to have come so far after such a long time to go back up to 5 mgs.  It is pyschologically discouraging as well you know.  I am a classic A type and worry a lot and as I get older find I don't cope so well with my life.  Even when I cut back and have nothing to worry about I am still anxious about everything, so what's next the looney-bin or pysch drugs?  I like reading this chat room because it helps me understand the complexity of PMR and the readers with their differences.  If there is one thing I have learned there are NO EASY ANSWERS.  Happy Christmas....

Hate to say my specialist agreed with my GP after I was off Prednisone for GCA (following a stint on Prednisone for PMR) that I now have fibromyalgia.  But, after I finished Prednisone for PMR, I did not have pain.  Only after getting off Predisone for the GCA which followed.  When I had PMR I was mostly pain free when on Prednisone except for a reduction here and there.

Now I have days I'm in terrible pain.  I tend to agree with you however that Fibromyalgia is a quick and easy diagnosis and, in my case, don't really agree and am pursuing other possibilities that maybe can be helped.

Eileen, are you off Prednisone and are you taking something for the "add-ons" that helps?

I have been off pred for 8 years. When I had reached 5 mg I felt such fatigue that I stayed on 5 mg for a year and then continued down in 0.5 mg steps according to a new method I thought out =slow tapering. Eileen has later developed this method into the dead slow method. When you are on 5 mg you shouldn't have any trouble so take it very slowly

No, not off pred, currently am at 8mg working down after a flare. I doubt I ever will be off pred altogether - I've had PMR for over 12 years now.

For the add-ons: my GP does a technique called needling which is also known as/similar to intramuscular stimulation. I also find Bowen therapy and/or manual mobilisation of the hard muscle fibres by a massage therapist helps. If I have trochanteric bursitis I have been given steroid shots. In the past when they were really bad I had steroid injections into the myofascial pain syndrome trigger points.

I'm pretty sure that the reason it's taken me something like eight months to get from 5 mg to 2.5 is because of steroid withdrawal and fatigue.  Have plugged away slowing using a variant of the dead slow method, and have been at 2.5 for over a month now.  Without the slow method which you pioneered I wouldn't have been able to get to this point.  Thank you!

Hi Eileen I rung my doctors to tell her I'm having a flare from reducing the steriods she told me to go back up to 15mg also I had a blood test yesterday and she said it was abnormal she said something about my white blood cell count I carnt remember if she said it was low or high my other blood tests have been normal till now she wants me to repeat the blood test in a few week I hope I feel better for xmas day😞

If your total white cell count and neutrophil counts are high - it is almost certainly due to taking pred and is nothing to get worried about. Unfortunately some GPs seem unaware of that fact!