Normal bloods

[Mayadill]

Woopidoo! Throws hat into the air. Just checked today’s bloods and after 3 years of Pred all the critical bits are normal: urea, creatinine, potassium, sodium, liver function. MCH (part of FBC) is technically low at 26.9 when the normal range starts at 27 and RBC is 5.32 when the upper range of normal is 4.8. CRP is 38 but it’s always high whatever the PMR is doing. I must be doing something right. No, Doc, Pred will not automatically destroy your organs.

[PMRpro Ambassador]

Hasn't destroyed mine in 14 years - that I know of that is ...

[Mayadill in reply to PMRpro]

Just re-read the patient info leaflet. To sum it up - any part of you might be afflicted and the longest list of possible side-effects is under 'Not known (frequency cannot be assessed from available data)' under which included some serious nasties. Do you know the mechanism by which a possible side-effect gets to be listed?

[PMRpro Ambassador in reply to Mayadill]

These days it starts with the cinical trials which log all complaints made by patients on the trial drug and placebo - you would be surprised how many adverse effects placebo can cause For older drugs like pred it tends to be the rather less detailed trials then and added to by doctors as experience is gathered. Pred was developed in the early 1950s to replace cortisone which had been used previously but had unpleasant side effects - relatively speaking, pred had far fewer.

You have to have reports from a lot of subjects and do a lot of detailed analysis since a lot of the effects are seem even without pred, the question is, are there more or more severe ones with the drug. Even with the the structure of clinical trials these day, three stages pre-marketing launch, much information is only acquired once the drug is shown to be safe to use and put on the market to be used in larger numbers of patients and then in Clinical trial stage 4 there is a government sponsored reporting scheme, to the FDA in the USA and called the Yellow Card in the UK where doctors, pharmacists and patients can all report things they think their medication caused. This provides real life documentation - amongst far larger numbers which is when the REALLY rare effects are seen.

A few years ago doctors from the Mayo clinic in Rochester looked at patient records of PMR patients on pred and compared them with non-pred patients of the same age with comparable histories. They found that most of the effects that have been ascribed to pred are also seen in non-pred cohorts - except cataracts, there were more of them.

practicalpainmanagement.com...

[Mayadill in reply to PMRpro]

Thank you. That was really interesting. Another science question please if you've got a min. I think I read somewhere IL-6 can penetrate the blood-brain barrier (or was that just in mice?) and is associated with depression. I really wasn't paying attention in class and I can't remember where but if that is the case, then wouldn't it/couldn't it/mightn't it be the case that the mood changes listed on the PIL (and there's a lot about emotional state) are in PMR patients actually possibly attributable to IL-6?

[PMRpro Ambassador in reply to Mayadill]

Perfectly possible - and I have said several times that in the 5 years I had PMR before pred I experienced a lot of things that are often blamed on pred, Definitely weren;t due to pred for me!! And it included mood swings, anger and depressed mood which itself does figure in lists of symptoms of PMR.

[Mayadill in reply to PMRpro]

Thanks again. Poor old Pred, it does so take the rap! In myself at its simplest I identify two distinct mental states. You could call them floating and sinking, or just functional and non-functional. On objective measurement…these have nothing to do with symptoms, pain, amount of sleep. I can be on Planet Normal with stiff legs or inert while fit as a flea. ‘It’ is there or it isn’t, ‘it’ being whatever you want to call it, get up and go. I call it ‘the force that through the green fuse drives the flower’. For me, fractiousness, volatility and the rest of it are just the result of that thing not being there, of feeling totally unable to deal with anything at all. I lounge around until it wanders back, which it does within 24 hour periods. I think I’ve pretty much decided there’s no point in so much as washing up a mug if I’m in some sense working against myself, forcing myself to do something which is otherwise barely noticeable, and which however ludicrous it is might well have me in tears if I dropped the mug or spilled the washing-up liquid! I don’t think I noticed this at the start, or for that matter when after my marathon year on 10 mg I dropped to 4 without further ado. Very roughly it does seem a blight of a period between about 13 and 9.

[PMRCanada in reply to PMRpro]

I had the same symptoms prior to starting pred and am certain it was due to the PMR, AND being in constant, worsening pain/stiffness. After 5 months no wonder I was angry, depressed and experienced mood swings. Not knowing what was causing the mysterious pain/stiffness definitely impacted my mood.

[PMRpro Ambassador in reply to PMRCanada]

Not to mention the adopted disinterest of the GP ... "Your bloods are fine ..."

[Hidden in reply to PMRpro]

I can't help but believe that you are a true outlier in this regard.

[PMRpro Ambassador in reply to Hidden]

After 13 years involved with the PMR/GCA forums I don't think I am much of an outlier - other than the 5 years without pred, most people get diagnosed sooner than that. But you do have to have PMR quite a while without pred to know what it is capable of doing to you.

[Hidden in reply to PMRpro]

I have definitely gotten some schooling on the affects of PMR. My life is no where near the same. I'm working through it with pred (tapering), physical therapy, and counseling. I hate this beast, but it is my reality. The downside of long term pred use is pretty documented, so that's why I believe you are a lucky one (outlier) for not apparently having any long term, negative affects. I understand here is nothing easy, straight forward, or guaranteed about this condition. I just don't want the pred to "allow" me to do more than I should be doing. It's a bloody hard balance.

[PMRpro Ambassador in reply to Hidden]

Oh don't get me wrong - I have had quite severe adverse effects but they were almost all only when I was put on to methyl prednisolone for a few months, By being switched to prednisone and making lifestyle changes, mainly dietary, they went away. PMR has robbed me of a lot, pred returned most of them so that life is worth living. It is all a balance but PMR took away more than pred has done.

[Hidden in reply to PMRpro]

I believe that, for sure. PMR robs QOL. Part of my 3-pronged strategy (pred, PT, MH) is to get to what my baseline really is - which may, or may not be what it was. I'm hoping and praying for an eventual remission, but am currently in this "forced slow-down" and realizing what work it is to get through this.

[Mayadill in reply to PMRpro]

Then I'm really in a minority of one! Maybe not in the PMR population as a whole, but at least on this forum, where people are so often much more medically complicated than I am, have other things besides PMR, and things much worse than PMR, are on multiple drugs, who were already on medication for something - another long list on the PIL is 'tell your doctor if you're taking'. The only one of those I have ever taken in the whole of my life is the occasional aspirin and (30 years ago) an oral contraceptive.