Aches and pains but not PMR/GCA

[PuttyPenguin]

I’m now down to 10mg pred , having come down from 60mg, and I’ve started to ache all over and painkillers are pretty useless. Spoke to the GP, who immediately got me in for a blood test which has shown that my ESR is still down to a wonderful 2 but my white blood cell count is higher than before. She told me that the higher blood cell counts indicates that I have an infection – what infection she doesn’t know (I have a normal temperature, just extreme flu-like aches and pains and a negative covid test). What she did say is that this indicates that my own immune system is working which is an extremely good sign. I was just wondering if other people had the same reaction when their immune system started working again?

[DorsetLady PMRGCAuk volunteer]

How do you “know” it’s not PMR/GCA?

Your ESR may be low, but that’s not 100% proof it’s not your illness…….as we are always saying on here, blood markers often lag behind symptoms, sometimes by a few months.

You have reduced quickly from 60mg to 10mg, so it is quite possible it is your illness…I would be inclined to try an increase for a few days to see if it makes any difference…..it may, it may not, but if painkillers don’t help…..it’s worth a punt.

[PuttyPenguin in reply to DorsetLady]

Thanks Dorset Lady!

[SheffieldJane]

I have felt like this often over the years of PMR/GCA/LVV it never occurred to me or my doctors that it was anything other than symptoms from my autoimmune diseases. I agree with DorsetLady’s advice. It’s a pity, I like your doctor’s positive spin on it. Perhaps you have been overdoing things? That’s when I get hit by those awful flu feelings and sleep does restore. The blood tests don’t tell us much when we are under treatment.

[PuttyPenguin in reply to SheffieldJane]

Thank you so much for the reassurance Sheffield Jane! I'm taking it onboard. x

[PMRpro Ambassador]

Ditto what DL said - she cannot be sure it isn't the PMR, especially if ordinary painkillers don't do anything - they usually would for an infection.

Come to that - which Covid test? The UK rapid tests seem very hit and miss - Andrew Marr caught Covid for a second time at the G7 and had 2 -ve rapid tests before a positive PCR so was spreading it around inbetween

[PuttyPenguin in reply to PMRpro]

Thanks Ms Ambassador! Your views are always welcome. In reference to the painkillers - that's a really good rule of thumb and something that the GP didn't take onboard. I've just done the rapid test but I don't have any symptoms other than my body aches. Taking it back to 12.5mg (as I have done the past two days) does seem to be helping. I think I was a bit thrown as this - my only flare-up - came after being on 10mg for three weeks and I thought that a flare-up would happen within the first week or so. But I guess it can come at any time. Again many thanks for your words of wisdom. This website does give me so much more confidence and a huge sense of relief when reading the words of others.

[PMRpro Ambassador in reply to PuttyPenguin]

Not necessarily - if the new dose is only a tiny bit too low it can take weeks for the left-over inflammation to build up to a level that is enough to cause symptoms and it is why we bang on such a lot about not being in a rush - often it can take a month to know you are still fine at the new dose.

[PuttyPenguin in reply to PMRpro]

Thank you!

[jinasc]

I had GCA and started on 60mg, if I have read your profile correctly and you were diagnosed in January 2021. That, to me, is a very fast reduction for GCA.

So I thought you might just like to read my experience and what I have observed over the years.

It took me 8 months to come down to 20mg and then a flare............my ESR and CRP never moved from being diagnosed until I got a kidney infection.

So back to 40mg and then no more than a 10% reduction till I got down to 20mg, another flare so back to 40mg and once again no more than 10% reductionat a time.

Once down to 10mg, then followed tapering plan - remission 5 years later and still ongoing.

It is not uncommon to have a couple of flares in the first 18 months - it does not happen to many people - but it does happen.

[PuttyPenguin in reply to jinasc]

Bloomin' hell! Your snakes and ladders have been quite extreme - 20 then up to 40 a couple of times. I was actually diagnosed in November last year and this is the first time I've had any problems so I guess I've been quite lucky. Sorry to hear that it's still ongoing for you some 5 years later- did you listen to the rheumatologist on the PMRGCA talk recently? I was amazed at his candour when he said that, quite frankly, no-one really knows how to treat these diseases but they've found that steroids work the best - at least he was honest!

I wish you good health, Jinasc, and thank you for replying.

[PMRpro Ambassador in reply to PuttyPenguin]

No - she was on pred for GCA for 5 years, she's been in remission for years now, since New Year's Day 2012!

Do you mean Saravanan from Gateshead? He's jinasc's rheumy

[PuttyPenguin in reply to PMRpro]

Yes, Ambassador, I do mean Saravanan - and he's jinasc's rheumy! Well she's got a very understanding doctor! What did you think of him? You say remission but surely after 9 years you don't expect it to come back??? Am I now going to be shot down in flames. I am the forever optimist! When I was on a drip in hospital and I asked my rheumy if it would be ok to going running - she laughed! 'you're not running anywhere'. I vowed to my husband that I would have this under control in April...three months after my deadline and I'm still not running and I haven't got this under control...but my optimism is still intact. Thanks again for your input.

[PMRpro Ambassador in reply to PuttyPenguin]

I have met him - he is a delightful guy. We agree to differ on a few points though!

Never say never - once you have an autoimmune disorder there is always the possibility it will wake up again.

" I vowed to my husband that I would have this under control in April." - you have no control over the disease. You have to learn to live with it and accommodate it. If you fight it it will bite back and it will win - it isn't worth wasting the energy, keep it for doing the things that are worth it.

[PuttyPenguin in reply to PMRpro]

I should have been named Polyanna...I can't but believe I will get over this quickly. Life in the slow lane just isn't me. Yeah, I know there's a lot of people out there who think the same and are deeply disappointed, but this chronic fatigue is a killer. Becoming so fat and not being able to do what I used to do, is driving me crazy. I don't know how to accept this condition. I've got a functional practitioner lined up and I'm also seeing a psychologist as I read that these types of diseases can be associated with stress - past and present. I do have a friend who had GCA only and he was ok in 18 months...so, being who I am, I want to beat that! Again, thanks for your time! x

[PMRpro Ambassador in reply to PuttyPenguin]

By no means only stress of the emotional variety but stressors on the immune system can be environmental, chemical, illness, injury and so on. You can't change your history, much as we may like to.

Optimism is a good thing - unless you get to fixated on getting over it quickly, or to a timetable, and that fails as it is likely to more often than not. That is why many people end up here, they have, as they see it, "failed" to do what they expected. It isn't their fault, it isnt your fault. Chronic illness is like that.

What you can do is take control of what is possible to control - for example, you mention weight gain. Take control of your diet, cutting carbs drastically, and you can almost certainly lose weight - it is slower than normal but there are loads of stories about weight loss successes on the forum. I managed to avoid massive weight gain but I do need to lose some weight. Since the beginning of Lent I have lost over 4kg - look at that as a pile of packets of butter and it is pretty impressive! MrsNails tells her story of weight loss last year and there are others.

Not sure a functional practitioner is likely to be much help (I am very sceptical to be honest) and perhaps your psychologist will work on bereavement for you because this is a form of bereavement, losing your former way of life.

GCA is much simpler to get past than PMR - I have seen that on the last 12 years on the forums. Those with "just" GCA have the simplest journey - but even they tend to be 4 to 5 years. If they develop PMR as a symptoms it may be longer. About 1 in 3 is through in 2 years for either - but that does leave a majority who take longer and there is no way to know in advance which you will be.

[bright-horizon in reply to PMRpro]

This discussion is so interesting and seems to be a variation of many similar discussions. I don’t really know if I have PMR or whether the body aches, fatigue and muscle weakness etc I’ve had for two and a half years are all side effects of long term prednisone and methotrexate. It seems like the large muscle and joint aches have become worse as my prednisone dose has decreased. Why?The hospital rheumatologist isn’t much help - he just said I might have PMR. I have been following the DSNS taper plan since 10mg and have had only a few minor flares which have eased by going back up to the previous dose for a while. I’m at 4mg pred now and holding until the increased aches ease a bit. Maybe it doesn’t matter what is causing the pain, but I think I deal better with such difficulties if I know what the cause is. It’s certainly a bumpy road. I get the most encouragement on this forum, reading accounts by of people who are finally off prednisone and feeling “normal”.

Wouldn’t that be loverly!

[PuttyPenguin in reply to bright-horizon]

Sorry bright-horizon, I didn't see that you'd slipped in here. I'm certainly not the person to ask about your medical problems as I'm only 9 months into this world myself, but it certainly sounds like PMR - does the pain significantly decrease with painkillers?

[bright-horizon in reply to PuttyPenguin]

Pain killers don’t help much.

[PuttyPenguin in reply to PMRpro]

Thanks for your advice. Yes I've wondered about environmental influences. We moved down to Hampshire 3 years ago - having lived in London most of my life - and I now know of three local people with GCA. I live next to a small farm, in a little village which boarders onto the South Downs and there are two locals who have had the disease and two of us who now have it. When I was in Fulham, London, I'd never heard of it! You'd have thought that being in a so-called better environment, I'd be healthier! I realise things can build up over the years but it does make me wonder.

I know you can't change your history but if there's something that I need to come to terms with - we all have bad times - then I want to heal anything from my past that needs healing. I've also read a few articles that infer that autoimmune diseases can be caused by stress. I'm always keen to explore the idea that 'one' creates 'ones' own health problems by not resolving physical, emotional or environmental problems which is why I'm now looking at other ways of tackling things such as psychologists, etc.

I'm very impressed with your 4kilo loss - well done you, I know it's not easy. It's certainly something to celebrate. As for low- carb diet...I've been munching my way through vegetable noodles instead of potatoes, rice etc and it is getting rather boring and not particularly satisfying. I did read MsNails journey and it was impressive but I feel, for me, boredom is a real issue.

But how do you cope with the boredom of not being physically active? I did read a good book called 'Wintering' by Katherine May, the essence of which kept me subdued and vaguely 'happy' over the winter and early spring but now I want to stop going 'with' the fatigue and start living. I just don't know what to do with myself! I am lucky enough to be able to afford to hire a gardener and a cleaner but I get so frustrated that I have to do so. But I have come a long way - now down to 12.5mg...just a year to go! I've grumble enough, I'll leave you in peace. Many thanks again. x

[PMRpro Ambassador in reply to PuttyPenguin]

I am always amazed when people complain low carb is boring and not satisfying - in general all that you are leaving out is processed foods with lower nutritional quality and root veggies and limiting fruit and added sugar. I eat a wide variety of foods - filling up on above ground veg/salads and high quality protein/fats. It may need an adjustment of recipes to lower carb content with flour-based sauces for example but it isn't difficult. Carbs become a treat - I still eat a cake if I desperately want one - a slice from our superb baker, perhaps 10cm by 5cm. maybe slightly bigger, gives me 3 glorious tastes, one immediately, 2 frozen for another day. I had half a single portion tub of ice-cream last night - only REALLY high quality and each spoonful savoured. I may have the rest tonight. But sickly sweet processed stuff? No thanks - quality over quantity any time. It really doesn't take long for your tastes to change.

And BORED? No - never bored! It is great to not feel guilty about reading. In fact, I still struggle to find time ... I am heavily involved in PMRGCA things, the forum obviously but also research. I think you also need to bear in mind that one's pastimes do change as you age anyway. I spent the winter skiing at least 3 times a week - it was less the PMR that stopped that than injury/other illness in the end. My summer things have been stopped due to not only Covid but also my husband's illness. PMR changes came slowly, they were overnight strikes and very hard to adjust to.

Oh - and do bear in mind that in London you probably didn't know as many people of the"right" age group and when people were ill it was probably less obvious. Living in the country doesn't cause autoimmune disorders!!!

[PuttyPenguin in reply to PMRpro]

I think I'm probably taking far to much of your time but firstly I am coeliac with intolerance to dairy and eggs. I was told not to eat meat from the age of 25. So my diet is extremely limited so I do find it a bit boring.

I'm amazed you can ski - can't wait to join you on 5mg (is that the dosage you're on?) if you have that sort of energy.

And as for my friends and associates in London - I had loads of them, most of whom were of my age group. I only know about 20 people in Hants as we've been in lockdown for the past 18 months and we only moved in 3 years ago - so this is another reason as why I have little to do. Plus keeping my distance due to covid. Whilst I still write and photograph anything that moves, I am seriously hindered - as we all are - by Covid and lack of energy. I am the type of person who was never going to age with grace!

Thanks for your feedback Ambassador! I think I'm getting over my first flare-up and a certain amount of energy has return making me slightly less of a moaning-Minnie!

[PMRpro Ambassador in reply to PuttyPenguin]

No, I'm NOT on 5mg - where do people get this idea from!!! Several people have said it recently despite the fact I have posted about the fact I have needed 15mg for the last couple of years, especially since my husband has been ill and Covid made life complicated. If he were to get Covid it would be curtains given the state of his lungs!

I stopped skiing about 6 years ago - mainly injury related as I said but far too many incompetent tourists making the slopes dangerous meant it wasn't worth spending the small fortune on a season pass! It doesn't matter WHY you have to give something up - the change must be adapted to and is a loss you feel keenly. Now even the replacements for that have gone - more adaptation.

[jinasc in reply to PMRpro]

Think they read 15mg and then decide it is a typo...............🤔👍

Thank you for answering Photojournalist - internet has been down for a couple of days.

[PMRpro Ambassador in reply to jinasc]

[PuttyPenguin in reply to PMRpro]

I'm so sorry to hear about your husband. I was so sure that you told me, some time ago, that you were on 5mg - mia culpa! And right, you're not skiing now - totally understandable but you did give me the impression that you did. Yes life if full of adaptations at the moment. Wishing you and your husband a satisfying life. x

[PMRpro Ambassador in reply to PuttyPenguin]

I got to below 5mg some 5 or 6 years ago and was there for over a year before I had a substantial flare. Since then I have struggled to get to 10 nd that went out the window last year. I don't care - I can function fairly well which is what matters.

[Hidden in reply to PuttyPenguin]

My consultant said my condition of STILLS was caused by emotional trauma and stress.

[Hidden in reply to PuttyPenguin]

Note I have STILLS an AI disease that manifests as fever, rash, sore throat, joint stiffness pain swelling, I spent 6 months in bed snd 3 in a wheelchair chair. It’s very rare. Diagnosis at 17 now 57 and it has affected my whole life but I live with it, manage it and adapt my days to it. It will never go away and as soon as I accepted that, it was easier to process. I do hope you smash it down and get back to running but don’t push too hard.

[jinasc in reply to PuttyPenguin]

Take the time to read this:

healthunlocked.com/pmrgcauk....