Anaemia

Hi Andreas , have been diagnosed 5 months now , felt better to start with , this last couple of weeks freel absolutely done in .

Asked the group, who are certainly a great help , and the fatigue it appears can happen any time , I am sorry to say . I go between looking pale and really quite rosey , do speak to your doctor befor taking large amounts of the vit B 12 only I think it is one of the vitamins you can overdose on and it can upset the system .

I trying to put a few things together for a couple days a way and I feel I am packing for the English rugby. Team . It appears that a lot of the friends on this roundabout go up and down with energy and from what I understand is that you have to pace yourself , accept that this is the way of PMR and don't over do it on the good day , and you will get there in the end . Good luck , and do explain to your son how you are feeling.

Something that is often commented about in the medical literature is the "unwell appearance" of the PMR patient.

I do remember that in the days of pre-pred PMR we were on our way on holiday and stopped in Leeds for my husband to give a lecture. I went shopping (as you do) and ended up in Harvey Nicks - a department store with the usual cosmetics section immediately inside the door. I stopped to look around, something I would never normally do, and was captured by one of the ladies who was doing demos. She "did" my face - and I spent over £100 on make-up in the hope it would make me look less "ill". I haven't spent that in the whole of the rest of my life!!

I was as white as a sheet - but my haemoglobin hasn't been under about 16 for years as I spent/spend much of my time living at altitude which increases your level. So the being pale is more likely to be the PMR, it may not be anaemia although a mild anaemia is common in many autoimmune disorders and is soemthing the GP should have checked for when he did the other blood tests to rule out other nasties before making the dx of PMR. The tiredness and lack of energy are typical of PMR, it is the underlying autoimmune part and that isn't changed at all by the pred but it can cause tiredness too. The fussy head can be either PMR or pred as well.

But check with the practice as to whether they did what is called a "full blood count" with the other blood tests. If they did ask for the result. If they didn't, ask for it to be done.

When querying my diagnosis of PMR one of the factors the consultants always brought up was the "slight anaemia" in my initial blood tests. I think the reason they honed in on this - without actually treating it - was that it can be indicative of rheumatoid arthritis. But yes, you should certainly have been tested right at the beginning so I would have thought the doctor would have drawn attention to any significant anaemia

Andrea, I was found to be anaemic during my first undiagnosed year with PMR.  The problem resolved as the illness spontaneously resolved.

However, I have recently heard of a case where an elderly lady was diagnosed with PMR but the steroids failed to make any difference to her symptoms at any dose, but because her ESR improve, the medic was satsfied with the diagnosis.  Some time later another Dr investigated her case, found that although a number of tests had been performed, the missing test was for Vitamin B12.  On testing, this was found to be low so treatment with Vit B12 replacement injections was started, which led to complete withdrawal of steroids over a couple of weeks.  She was completely well within less than a couple of months.  Insted of PMR she had in fact been suffering from B12 deficiency of pernicious anaemia.  

So even if you do definitely have PMR, you would still be wise to ask for a Vitamin B12 blood test.  At the same time, ask them to check your Vitamin D levels as well - any deficiency can cause pain in similar areas to those of PMR.

Unfortunately, fatigue is part and parcel of having inflammation in your body and the steroids add to the problem.  Hopefully, you are taking them as early in the day as possible, and avoiding as much coffee as possible, especially later in the day.

All patients are legally entitled to receive a print-out of their blood test results. There are a number of routine blood tests which should be done if a patient is taking prednisolone, including glucose as diabetes can cause tiredness too, or there can be a combination of factors which might not flag up on blood test results which a doctor might overlook. When you get the blood test printout, it is easy to find out what the up shot might be of higher or lower than average values.  

I looked like a ghost when first diagnosed. My sister came into my bedroom one morning and she thought I was dead! Did you have blood tests checking initially? After a few weeks of pred I got a bit of colour back again. Also I found pred gave me insomnia initially but that did improve as I reduced. I used to lie in bed and was still awake when the birds started to sing. I know how you feel about PMR, I am fed up with the experience and need a new one.

Did they do a Vitamin D Deficiency test before you were diagnosed with PMR.  If not ask for one, it should be done as an exclusion test.  Vit D levels that are not normal cause aches, pains and tiredness just like PMR.  You should get the level tested every year.

I was deficient and once it was corrected I take a maintenance dose of 1000 units per day, bought OTC at Boots and made in the UK.

You can read up on Vitamin D Deficiency on this site.  It is well worth reading.

Hello

I have PMR, but also had various neurological symptoms, numb fingers, tremor etc. I had always come back as negative in ordinary blood counts, but one of my doctors sent me for a Methylmalonic acid test (MMA) This tests the tissues and I have a B12 deficiency in my tissues. The neurological damage may not be reversible because it took so long to find what is Pernicious Anaemia. This wont respond to tablets buts need regular injections, for life. Another Auto Immune goodie!

Hope this helps, worth mentioning to your Doctor.

Autoimmune illnesses often cause a lack of energy and PMR most notably causes exhaustion. Nothing might show on a blood test. Often a number of factors are at work to produce tiredness. Prednisone can interrupt sleep, bump up glucose (regular diabetes tests required), deplete D3 and calcium levels. It can affect the body's immune system making you more likely to suffer from infections. I take tons of supplements and still drop off to sleep in 5 seconds flat.