First Rheumy Appointment on Tuesday

[PMRMiltonkeynes]

Hello everyone, I have been on Predisolone since 28th October (20mg a day) recently dropped to 15mg. I have my first rheumy appointment at my local hospital on Tuesday and wondered what sort of questions I should ask please?

I believe from what I have read and my symptoms that I have PMR. Back and for doctors since April last year with severe shoulder and back pain, extreme difficulty getting out of bed, terrible paid turning over in bed, hip pain waking me up at night, unable to lie on back, pain then down buttocks and back of thighs, etc. lived on co codamel. After changing GP surgeries my new doctor sent me straight to the acute emergency dept at the hospital where a consultant felt 90% sure I had PMR and put me on steroids immediately. Within 3 days I felt 70% better. I attend a restorative yoga class once a week and also an osteopath to help keep the pain and tension in my shoulders at bay to enable me to work.

On a recent visit to my GP although my ESR had dropped back down from 63 to 8 my CRP from 25 to 3. However the GP was very concerned that my haemoglobin had dropped to 10.8 and it should be 13 and prescribed 600mg of ferrous sulfate which seems to have slightly improved my shoulders.

My personal goal is to get off the steroids as soon as possible as I now need a flaming knee replacement operation and they will not operate whilst I am steroids. However my knee is not too painful (possibly due to the steroids) and know it is important to reduce steroids slowly.

Any advice on what I should be asking would be appreciated.

Thank you

[PMRpro Ambassador]

"My personal goal is to get off the steroids as soon as possible as I now need a flaming knee replacement operation and they will not operate whilst I am steroids."

I'm sorry to have to tell you this but that is a statement that comes under the "how long is a piece of string" heading. There is no "getting off pred as soon as possible" in PMR. PMR is just the name given to the symptoms of an underlying autoimmune disorder which is ongoing. Pred is the only medication at present that manages these symptoms which are due to the inflammation caused by the immune system not recognising your body as "self" and attacking various tissues. Pred does nothing for the actual disease and you will need it for management as long as the autoimmune part is active. That may, if you are in the lucky 25%, be as little as a couple of years but somewhere in the region of 5 years is more likely for 50% of patients and the rest need pred for even longer. Your initial reduction is to find the lowest dose that provides the same relief as that starting dose did. In PMR it is better to reduce 2,5mg at a time (not more than 10% of the current dose in fact so even that is a bit much) so it is less of a shock to the body - and from 15mg many of us would suggest not more than 1mg at a time. Under 10mg, 1/2mg is often necessary. Your "maintenance" dose is not likely to be 15 or or 5 - it will be 12 or 9 or 6 - and dropping 5mg at a time means you miss the real end point and may be on a much higher dose than necessary

If you stop the pred before that autoimmune process has burnt out and gone into remission then the inflammation will build up again and the symptoms will return. Think about it - do you honestly think you could do the rehab which is an essential component of a knee replacement in the state you were pre-pred? Because that is what will happen if you stop pred too soon. I suggest you shop around a bit for a knee surgeon. One lady on another forum was told by her GP she wouldn't be considered hip replacement due to age or until she was off pred by the first surgeon she saw. She looked around - and this was in the UK so it isn't impossible - and found a surgeon who was only interested that she was stable on her dose of pred. Surgery was done at 10mg, she managed the rehab really well because she wasn't in pain, and subsequently was able to reduce her pred dose steadily to zero. It was as if the pain of the hip was aggravating the PMR - and another lady found the same.

Sorry to sound a real misery - but there is no point me telling you that will work because if what you have is really the PMR we discuss here it isn't going to go away any time soon. That is the reality. Setting yourself up to "beat this" and "get off pred" often only ends in bitter disappointment. This is a chronic illness and you will learn to live with it - and your doctors will also have to do so.

The anaemia by the way is very common in autoimmune disorders - and is probably nothing to worry about. Although having a good Hb level does help a bit with the fatigue.

[Celtic PMRGCAuk volunteer]

In the case of PMR versus knee surgery, the No.1 priority is that you need as much Prednisolone as you need at any one time to manage your present PMR symptoms. In other words, we can't make getting off "as soon as possible" our main goal, as much as we would like to. I don't understand they are saying they "will not operate whilst on steroids". I know of several ladies with PMR who have had hip and knee surgery successfully and safely whilst on Prednisolone - one whilst on 10mg. Yes, the surgeon and anaesthetist need to be aware and prepared in advance - in fact, they often give an extra steroid shot around the time of surgery. However, as you say that your knee "is not too painful" at present, hopefully you will have plenty of time to successfully reduce your steroids slowly but surely to a more acceptable dose to keep the medics happy....and to keep your PMR symptoms at bay.

As for what questions to ask at your first rheumy appointment tomorrow (apart from discussing the above, including you haemoglobin!), if you haven't had a DEXA scan to check on your bone density then do request one. You are probably already taking a calcium plus Vit D supplement, but if you haven't already had a Vit D blood test then do request one. If you are found to be deficient, the usual Calcium plus Vit D won't be sufficient to bring levels to within the normal range - that will need a three month course of high dose Vit D3 (Colecalciferol). If needed, the extra Vit D will ensure that more calcium from your diet is absorbed into your body, thereby giving extra protection for your bones. Otherwise, it sounds as though you are managing your PMR very well during these early months, with a good resolution in your symptoms and a return to normal inflammatory markers. Long may that continue, and I hope your rheumy appointment goes well tomorrow.