Newly Diagnosed

[Jackoh]

Hi

Have been reading posts over the last few weeks which I have found very helpful. I would say that I had restriction and stiffness in my neck and shoulders for a couple of years and last year started to have pain in my upper arms. It was only after a long walk, feeling very fluey and finding it difficult to turn over in bed or do up my bra that I went to the doctor in November. From my blood tests these were very inconclusive, ESR reading only 18 and no rise in CRP.My doctor though decided to go with symptoms and has started me on 15 mg of prednisolene. Before taking the steroids I was feeling quite ill, apart from stiffness and pain. I felt very fluey and had lost my appetite and was losing weight. Also I have always suffered from bad headaches but they seemed to be getting worse.

I have now been on this dose of steroids for about 5 weeks. I do feel quite tired, if I do alot( my daughter is getting married soon so we have been wedding dress shopping today) and then my arms feel like lead weights. My headaches are still quite bad but just on the top of my head like a weight being pressed down. I've mentioned this to my GP but she doesn't seem concerned re this. It isn't in the temples, or jaw so I am presuming that it's not serious.

Is it normal to feel so tired and have arms that feel weighed down? I know when I go back to my GP next week she wants me to reduce quite quickly but I'm going ( hopefully with her cooperation) to do it slowly after what I've read. Sorry that this is so long but I suppose because this is all so new to me( never heard of PMR until this point) that it is really good to get feedback.

Thanks a lot

[PMRpro Ambassador]

I think the first thing to say is that the fatigue will maybe last a long time - especially if you are preparing for a wedding! The pred manages the inflammation - you have to manage the fatigue because the pred doesn't change anything about the underlying autoimmune disorder that causes the inflammation and is accompanied by fatigue, amongst other things. It means resting, even having a nap if that is what it takes. It means adapting your lifestyle to make it easier to get what needs to be done, done. It isn't forever - but it will be a few months at least before you feel anything like well - and you have to pace yourself to get the best out of your day.

Above all though - if she wants you to reduce before you feel ready you must be firm. You need to take the 15mg until you feel there is no increase in the improvement - then you can start to reduce. Some people never achieve freedom from pain but they do have a reasonable quality of life. If your GP tries to reduce the dose fast refer her to this paper (if she hasn't already seen it):

rcpe.ac.uk/sites/default/fi...

"Our approach to the diagnosis and management of PMR and GCA" by V Quick and J Kirwan

Their reduction achieves a flare rate of 1 in 5 rather than the 3 in 5 that is common with other suggested reduction plans. Many of us on the forums use much slower reductions even more successfully - slower in the sense of the steps down being smaller, 1mg at a time at the higher doses, 1mg spread over a few weeks further on.

If I had an ESR of 18 it would be high for me - my normal is 4, at any time, however ill I may be. So all power to your GP for realising abnormal ESR and CRP are not necessary, about 1 in 6 patients don't have raised values for either. It is a clinical diagnosis - on the basis of symptoms.

And try to be very kind to yourself until the wedding is done and dusted - because it is very tiring and stressful and both are bad for PMR. Rest BEFORE you get tired and you will get far more out of any day - that hour or so in the afternoon will probably give you another 2 or 3 hours later instead of being exhausted and bad tempered as a result and unable to concentrate or think straight.

[Bailybiscuit in reply to PMRpro]

I would just like to make you aware that GCA can cause headaches in other parts of the head than the temples. My mother had pmr and I knew nothing about it then , she developed what she described as a headache which felt like she was being hit over the head with an axe. The dr she saw didn't recognise it and another didn't . I read up on the symptoms and pmr and found an article talking about getting a headache on the top of the head and it said if you looked you would see some marks like a road way. Sure enough Mum had those marks and I told a dr at the hospital and a biopsey confirmed GCA. I now have pmr and my dr tells me you only get GCA headaches in the temples.

[PMRpro Ambassador in reply to Bailybiscuit]

Occasionally I despair when doctors say so categorically "you don't..." or "you must..." or anything like that!

I know patients who have complained of facial pain, pain in the back of the head, all over their head - and all eventually were diagnosed as having GCA. And then are the ones who DON'T have headache.

I was trying to find a reference yesterday where percentages are quoted for each of the "must have" (according to some doctors at least) symptoms in GCA. I'm sure I remember that headache as the presenting symptom (i.e. the reason the patient goes to the doctor) was only noted in something like 40% and less than 80% ever complained of headache - so about a quarter may never say anything about headache. According to the Cleveland clinic article, 40% of patients present with symptoms "not considered classic for GCA" such as cough, throat pain or tongue pain. And in my experience those patients are told "it can't be GCA".

[Jackoh in reply to Bailybiscuit]

Thank you for your comments. Good to know this.