Three weeks ago I thought my aches were gym related and experienced a sense of satisfaction in working out. This morning I'm recognising the likelihood that this is not statin-induced myalgia as I hoped. A blood test showing elevation in CRP and increasing shoulder, upper arm and hip pain, flu-like feeling and stiffness. Two Ibruphen morning and night seems to help a little. My doctor was willing to wait and see for this past week. I really want to delay prednisone as long as I can as all of you will understand. Denial!! A question? Should I ask for a referral to a rheumatologist? I'm pretty freaked out. This time last year I was a month away from my 850km Camino walking through Spain. Those mountains seem mild compared to these ones. I'm a Kuwi and 69 years old by the way. Thank you for letting me join the club that no one wants to join.
I'm new here and very apprehensive: Three weeks ago... - PMRGCAuk
I'm new here and very apprehensive
Why not ask for say 15mg of Pred just for a week and you can stop them immediately after that. At least then you will have some idea what may be the problem. If the Pred works it really is a wonder drug, if it does not you probably do not have PMR. Why go through unnecessary pain? You may not need steroids but something else if it is not PMR.
Piglette what a genius answer. Yes. Spot on. xxx
Thank you for responding it does feel reassuring not having to explain the apprehension. I emailed the GP with the update after the week as she requested. She has asked for more blood tests. Once they come it we will make a decision I guess.
The doctor has prescribed 15mg Prednisone for two weeks after the second tests showed increases in CRP from 12 to 24 and ESR normal but increased over the past week. Although I thought this all happened suddenly, it seems that the onset of symptoms have been relatively gradual. Certainly the pain has increased over this week to the point that I'm welcoming relief. I should have started the meds this morning however being weekend the pharmacy closed early. Tomorrow is the start. She will reassess me in a week having said that I may need 20mg.
That sounds like you have a really sensible doctor, that is really good news. Hope it all goes well when you start and you get the magical effect or at least you can now find out if it is PMR or not.
I agree with piglette - sensible woman!
However - if your ESR has risen it isn't normal for you, even if the new reading is still "in normal range". Normal range is the range of levels found in 10s of thousands of apparently healthy patients - not the range to be found in one person. You obviously have a pretty low normal - like me.
Hello Kinnear darling. I am in Melbourne so I am not THAT far away! I understand your panic. Me too. I think piglette's advice is brilliant. I was in a similar situation where it was unclear what was wrong. I took the pred and it was like a miracle. It is daunting to be diagnosed with this condition but also very very lucky as if it is missed you can get all sorts of damage from the unchecked inflammation so try to look at it like that. You will find so many AMAZING people on here. You will get loads of help. Please update us. Love, Linda xx
Thank you. I will keep you all updated. I'm just uncertain about whether being more active will help or hinder me meanwhile. Frankly I don't feel like doing much! An invitation to the pools for a long soak in the jaccuzi did get me moving this morning and felt great
Kinnear I think it is very much a find out as you go However inactivity is bad for just about everything. I can only manage to walk slowly round my street so I do that but some members can do much more. You are at the start of this so be kind to yourself xxxx
Hi Kinnear, I am in Dunedin and developed PMR in October 2017 and now it is thought that I have a Rheumatoid Arthritis also as a few joints involved. I have been on 60mgs Prednisone but now down to 10mgs and have 2 disease modifying drugs also to manage the rheumatoid symptoms - I am doing ok and some days a bit stiff but can manage ok. Probably the fatigue is the worst symptom now. I too am 69 and I retired from 50 years of nursing in April last year. All the best and keep in touch
Good to touch base with a Kiwi here. Vanity I know but the thought of weight gain when I'm 5'2 is concerning too
I gained over 35lbs - I'm not even 5'2", once I was told I was under 5'! Much of it was due to PMR and lack of activity - couldn't even blame pred as I wasn't on it then. Pred made the fat move around to the usual places. I lost 35lbs while still on pred - by cutting carbs drastically. Most of the pred side effects can be managed when you know how - and avoiding weight gain is easier than getting rid of it, but both are possible. Even on pred...
Hi KinnearD
To lose weight may I recommend Aloe Vera Juice with Cranberry added. Aloe Vera on its own is foul and I couldn't get used to it. Its not cheap but I'm losing at least a pound a day started from 17st 10lbs and am at 15st 7.5lbs this morning. My target is 13 stones to ease the pressure on my rubbish varicose vein valves. I have another condition called Klinefelters Syndrome and veins are a side effect. I can't get the new fangled weights and measures so I always work in Imperial.
I only have G.C.A. and am Male. The weight gain caused by losing my darling wife in 2016 and eating the wrong foods, got depression and Osteoporosis as well. Osteo. is a side effect of Klinefelters and G.C.A.
You've found a fantastic forum where you can get masses of help, don't worry about asking what seems like inconsequential questions. There are people on here who have seen it, done it and got the T-shirt to prove it.
Best of luck on your journey, mine's lasted 4-years and 7-months so far.
Colin
Mr E please tell me more about the Aloe Vera and Cranberry - quantities of each/ before eating or drinking anything else/any other changes like cutting down on specific foods? My OH needs to lose weight and I mean NEEDS, He's just had his second knee replaced, got varicose veins, ticker issues - so could do with shedding loads!!! He loves food and hates exercise which at the moment is difficult 'cos of his knees anyway.............your solution!!! sounds interesting.
Dear MamaBeagle
Reply is rather long you'll see why. If it doesn't all arrive send me your email address and I'll attache it to my reply.
Dear MamaBeagle
Aloe Vera & Cranberry Juice
I get mine from Holland & Barrett of Woodbridge, Suffolk and it retails at £9.27 for 500ml. Described as Maximum Strength, it comes combined so you don’t have to mix it yourself. It is available on-line but is more expensive and you have to pay delivery/postage charges. Don’t fall into the trap I fell into and buy it from Mexico where it is cheaper but there are lots of additives.
Doses range from 1 tablespoonful (15ml) a day to 3 tablespoonfuls per day (45ml)
But as OH is new to it suggest you and he start from 1 tablespoonful dose per day and see how you both get on. (It is much more palatable than the neat Aloe Vera). The maximum dose per day is 45ml. (3 tablespoons).
I was given a copy of the British Heart Foundation diet book by Dietitian at Heath Road Hospital Ipswich which unfortunately is out of print.
Just cut down on quantities It takes a bit of getting used to but its all about reducing the capacity of your stomach.
I was 17st 10pounds when I saw the Dietitian and she said cut out all sugar, stop drinking Lucozade, stop ALL bread. Cut out biscuits and snacks between meals. If you look carefully there are alternatives in the supermarkets there are sugarless e.g. Hartleys do an unsweetened jelly tub sized for children’s lunch boxes in various flavours e.g. blackcurrant, strawberry and others (look where the custard is). Greek Style Yogurt (unsweetened) can top small quantities of apricot halves diced even further.
Cut out ALCOHOL not forever, but only until you reach your target weight and then in moderation i.e. 1 glass a day.
Set a target weight and keep to it. The Dietitian’s target weight for me was 15-stones, but then I saw a Vascular Surgeon (I have Varicose Veins in both legs) and he said because of K.S. you should get down to 13-stones so that’s my new target and I can already see that some of the weight is coming off.
Tesco sell a “Free From” range (free from Gluten, Wheat & Egg) Wholegrain Rice Cakes which are palatable and a good replacement for bread. Yes they do taste like Rice Crisps’ but you can hide the taste by spreading Tesco tuna and sweet corn spread (in the dips section) or laying a slice of Kraft Light cheese slice on top, even a thin slice of chicken will help to hide the rice crispy flavour.
When I told the forum that I was starting a Rice Cake replacement diet there was a lot of laughter, but I had the last laugh as by persevering the weight did slowly come off.
I ate all the wrong food when my wife died in April 2016 and weight got far too high. With my Klinefelters Syndrome I must watch my weight because lots of side effects;
Diabetes, Varicose Veins, Osteoporosis, Breast Cancer, (this is not a miss-type. K.S. sufferers have small breasts), Heart Attacks and Strokes the list is almost endless. Into the bargain I’ve got High Blood Pressure, High Cholesterol, and Depression.
I fractured a spine bone thirty-three days before Janet died and haven’t been able to walk properly since. I can’t bend properly to pick things up so Tesco delivers my food every week, there is a small delivery charge but that is manageable. I’d love a walk in my local forest but I’m afraid of falling over. Falling over is the pits for me because before I was diagnosed with Klinefelters Syndrome I fractured seven ribs and a metatarsal in my left foot. Stupid things like pulling a fishing rod apart, coughing with a cold, moving furniture, hugging my wife. I didn’t know that I’d already had Osteoporosis before the K.S. was diagnosed. If you want a bedtime read look up Klinefelter’s Syndrome on the internet. Failing that sent me your email address and I’ll send you six pages of what I give every new consultant because very few have even heard of it.
Good luck
Colin
Thank you so much Mr E. A really comprehensive replay! You and my OH share several similar problems.... varicose veins operated on about 3 years ago, dicky knees but now both replaced he's just had the second one done, had 4 small strokes in the past and has blood pressure issues!! He's broken ribs several times - last one falling over the communion rail - he was a vicar!!! And no he hadn't been on the communion wine!
We already eat very well and I have cut his portions down!!! And don't do much bread cakes etc etc - a bag of sugar probably lasts a year!! Only use it when visitors take it in a cuppa!
Will go to Holland and Barrett forthwith!
Hello, don’t worry that’s simple. I started on 60mg and didn’t put on weight because I cut out sugar, potato, pasta, rice, flour etc. like many on here. You’ll feel better for it too!
Welcome. It's quite normal for drs to practice what's called differential diagnosis and using Pred in your case would be a sound plan. Piglette is quite correct. You won't know yet, if it is PMR, how it is going to affect you. It is a very individual illness and pred is all we have to treat it, but not everyone struggles. There are some of us who have a easier ride than others so please try not to get too down at this stage. Remember that any stress will cause your body to produce more of the inflammatory chemicals which are causing your symptoms. Devour the pages on this site. There is lots of information about things you can do which may work for you.
Me. Gca/pmr Nov2017 30mg now 7mg. On diagnosis esr 115 and crp 185. Pred started within 1week of symptoms. Bloods normal for past four months.
Thank you for your reassurance
I gained about 5 kg but have lost most of it with careful carb control and I am only 5ft 2 also
I understand your fear - but pred is not half as bad as people often make out. If you delay trying it you will only get worse if it really is PMR. As piglette says - try it first. Then make your plans on the evidence that will provide.
I feel pretty lucky compared to a lot of folk I've met through this site. I too am 69 and don't have any underlying health problems just PMR diagnosed in September 2017. Stunned when I joined this site and realised how much some of our friends are suffering. My doc guessed what it was from the symptoms, blood test following day and told to start taking the prednisolone immediately after the blood test. Pains went within the day, I still walk the dogs and mostly do my 10000 steps. I do get tired yes, I do have interrupted sleep, I haven't gained weight..............but I have learnt to pace myself now. I'm a staunch member of the school of thought that pain ain't normal and the side effects of pain are worse than the side effects of preds. Good luck on your journey - try them if they work you have your answer and if it is PMR then you have no other option! All the Best from Blighty - where are you in NZ?
I'm on the Kapiti Coast. Just retired from private practice counselling. Thank you for the reassurance
Hi,
Welcome,
You’ve had plenty of good advice so won’t add anything else, just to say you’ve found the right place.
There are quite a few Kiwis on here, I’ve met a couple - my daughter lives on SI on Canterbury Plains near Methven, looking forward to my next visit!
Dear KinnearD,
I'm glad that DorsetLady, finally said, the Most Important 'Thing'....Welcome, I echo that.
I'm afraid that I know, absolutely Nothing, about Health care in your Country.....Hopeless aren't I? In Mitigation, I should add, you ARE the other side of the Earth to me.
Hopefully I can Make you smile though- if I don't offend you, sorry if I do. There is the Quantos Pilot, coming into land, at Christchurch, or Auckland, it doesn't matter. He addresses the passengers, as such, "This is your Captain speaking, we will shortly be landing at Christchurch (or Auckland) Airport. I suggest everyone puts their watches back....about twenty-five bl..dy YEARS...) Unfortunately that is the ONLY Kiwi joke that I know, sorry about that. Maybe Two, out of Ten...….for effort......No?,..... oh well. Guess I'll just have to swim the Cook Straight then. How wide, is that, by the way?
As I said above, I hope that I have put a Smile on your face KinnearD, an interesting 'Name' that.
Sending you Best Wishes from our Hemisphere, to your Hemisphere. Take care.
AndrewT
Yes you DID make me smile 😊. I also chuckled at the thought of a similar joke about a planeload of Brits landing in Auckland and how you could tell they were Brits. I won't disclose the telltale sign though. Thanks for the welcome too.
Oh, come on DO tell. I PROMISE not to be offended. Were they all wearing Bowler hats, maybe Sicking everywhere (they would be the Football Fans). How do you keep an Idiot in suspense? I'll tell you tomorrow!
AndrewT
Well I should wait until I start the pred later today cos I could blame them! Hmmm...a polite form then. " the whine continues after the engine stops "
Ahh, now that’s because of the journey to get there....not the country of arrival! 😊 well maybe depends on airline!
You were polite considering what the rest of the country calls Aucklanders!
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