New diagnosis

Bones, joints and muscles
1

Merry Christmas everyone!

I'm 52 yrs old and started suffering from  the common symptoms of bilateral hip and should pain along with lower back pain. I had also extreme morning stiffness and stiffness getting up from a chair or out of the car.  I had extreme fatigue, no appetite and weight loss (I liked that part!)  : ) I nicknamed myself the "TINGIRL"!  My CRP was normal, Rheumatoid factor and Sed rate very mildly elevated.  My Rhuematologist says that I fit into the 20% of patients who present atypically for bloods and age.  I started a trial of Prednisone of 10 mg to see if I would get any relief and after the second dose I was back to 90% of who I am.  Now I have started this persistent sore throat!  Not a normal sore throat like when you have a cold...  Did anyone else experience this?

2

Have you any other new symptoms? A sore throat - and sometimes a dry cough - can be symptoms of arteries in the chest being affected by a large vessel vasculitis(LVV)/GCA (it is impossible to say if it IS GCA but GCA is an LVV). 

Why is it they think early 50s is atypical? There are a lot more of us than they'd have you believe - and there'd be far more if they were looking for it and not fobbing people off with a diagnosis of fibromyalgia, depression, "your age" or somatism (aka "all in your head" but that isn't PC!). I didn't even have a raised ESR.

You were very lucky to respond to 10mg - but I wonder if you might have been better with a bit more, just in case.

Where are you?

3

Hi EileenH, I am in Quebec Canada, you?  Yes a dry cough - kind of always feel like I just need to cough for no apparent reason.  Tried the 10mg but I take only 5mg in the morning and then by supper time my symptoms are felt again and then I am supposed to take the second half of the dose.  I haven't seen the doctor since he prescribed - I will see him the second week of Jan.  

CGA / LVV is that bad?  The doctor said it is atypical due to the bloods not being high and because the average onset is 70 yrs.  I am so afraid of weight gain, as I am very active and fit!

4

I am in northern Italy - but I'm not Italian, I was born in the UK.

The AVERAGE means there are a lot of people younger to balance out the relatively large nos who are older.

I don't think your doctor knows a lot about PMR: the guidelines say the lowest effective dose in the range 12.5-25mg/day, NEVER less than 12.5mg. They also say the dose should be taken in one go early in the morning to achieve the best antiinflammatory effect. He should also have warned you about the possibility of developing GCA, giant cell arteritis, which is the "big brother" of PMR. It is increasingly being accepted they are the same basic disorder but at different places on the spectrum and about 20% of patients with PMR symptoms go on to display signs of GCA.  

Sorry I can't give you the direct link (it will go for moderation) but Google this 

"The spectrum of giant cell arteritis and polymyalgia rheumatica: revisiting the concept of the disease by Christian Dejaco et al"

for a fairly easy to read article by a group of top rheumies in the field. In the first link (should be the ncbi nlm nih gov one with dots in the appropriate places), below the Abstract and keywords you will see a link that should take you to the full text, free).

I saw him the other day - and we agreed that I almost certainly sit in the middle where all 3 overlap in Fig 1! Which I have been saying for a long time... I was dx'd at just 57 - but had had symptoms for over 5 years that no-one had recognised. I had the typical PMR stuff - but I also had had jaw pain and a sore scalp which lasted a few weeks and then disappeared and also thigh muscle claudication. I had a constant sore throat and tickly cough - that had actually been the main reason for seeing the doctor, I felt as if I had a chest infection but it never came to anything. There was nothing to see. I never lost weight (if only) but that is more commonly seen in GCA than PMR.

Anyway, GCA is a problem because it can also affect the blood supply to the optic nerve and so affect your vision - which is why it is important to be aware of it. I don't want to scare you - but do be aware of increasing symptoms and if you have any visual symptoms please contact your doctor as an emergency.

This is a link to our resources post with a load of links to reliable information and websites where you can get good info about both PMR and GCA.

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

I'm sure a lot of your questions will get answers in there somewhere - if they don't, come back and ask them!

5

Thanks for all of the information Eileen.  I was reading the GCA symptoms - the blindness thing is freaking me out!  I will definitely take that one seriously.  I am a healthcare worker but had never heard of these diseases.  The tickly sore throat is a problem for me and I do feel like more of a dose of prednisone would help.  Oh, is PMR weight gain and GCA weight loss?

It is odd because I was always healthy, never caught anything!  I was always proud of my strong immune system - now it is too strong!  How long have you been treated? and how are things going?  What do I have to unfortunately look forward to?

6

Sadly I'm a 1965 baby too and have had this vile disease for the past year (almost exactly).

or my GP thinks I have it and for some reason is not granting me access to a rheumatologist but I'm going to push him in the new year.

all the time I've been unable to take a deep breath, but the steroids have taken away the lung and shoulder pain, and if I manage the dose which I think Im learning to do, I'm ok. But still groaning horribly in the morning. 

now, thanks to a combination of an irritating coldy thing, plus a terrible 'face plant' from a horse, I have the irritating cough you describe.

oh joy

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Hi Rachel, sorry to hear that you are suffering.  I am seeing a rheumatologist but I am only in the beginning of figuring all of this out.  I am still aching a bit too and seems to be increasing as the days go on.  I also have bilateral carpal tunnel and have to sleep with splints!  My hands are still a bit swollen too.  Awful not to feel like yourself.  The sad part is I am a very active person and it is hard for me to convince myself to work out - but I do in fear of weight gain.. I want to keep my weight below 130 lbs!

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Hello Cyn, glad you’ve had some pain relief from the prednisone. Re your cough - a persistent cough can be a side effect of some medications BUT should always be investigated. I suggest you see your Dr to look into it and maybe give you a chest xray?

9

"is PMR weight gain and GCA weight loss"

No, not really - although I gained weight with untreated PMR simply because I couldn't exercise properly and was so depressed I ate too much! 

You don't want to know about me - I'm extremely atypical! I had no raised blood markers but symptoms that were classical PMR plus a few that were GCA-ish. Except at the time I didn't know as much as I know now and my GP knew nothing! I was untreated for 5 years and have been on PMR-dose pred for well over 8 years. About 5% of patients have PMR for a long time, sometimes even for life. About a quarter get of pred in 2 years or so but half take up to 4 to 6 years. But 75% DO get off pred sooner or later. 

However - I have a good quality of life and no pain because I won't compromise: I take what I need. Now that is well under 10mg, 7mg is about average and that is less corticosteroid than the body makes naturally so I have no side effects I'm aware of or that doctors can identify. I still travel and do anything I really want to - that doesn't include housework which delights me (really does my back in)! I've just been given a roomba for xmas - it is vacuuming the floor as I write lol

I forgot to say before - you are concerned about weight gain: cut your carbs drastically. It has worked for a lot of us. Pred changes the way your body processes carbs, take them away and it reduces the risk of weight gain (I lost 35lbs of PMR and pred associated weight while still taking 10-15mg pred) as well as reducing the likelihood of developing pred-related diabetes.

Don't be freaked out by the loss of vision aspect - you are now aware of the possibility. But whatever you have may not be anywhere near the optic nerve blood supply - as the paper I told you about says, there are a lot of versions of PMR/GCA. However - if you have ANY visual symptoms, head straight for a doctor as if you were having a stroke or heart attack. And they should tell you to take a high dose of pred. Providing that is done immediately that should avert visual loss.

What sort of healthcare worker? I worked in the field all my working life, as a medical technologist but also as a translator which required loads of background knowledge - which comes in very handy here.

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Hi yes I will be seeing my doctor in the new year and we will discuss treatment and what’s going on with the sore throat. I was put on a 10 mg dose prednisone as a trial to see if I would get any relief to use as a diagnostic tool. Apparently if I have pmr I will have some relief and if not then it something else. So since the drugs are working I guess it is omg 

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I wish I could gain weight. I've lost I 5 stone though I think that's due to muscle wastage because the GP weaned me off the steroid far too quickly. It is more usual I believe for people on steroids to gain weight.

12

 It’s crazy to think that you’ve been suffering for so long. I thought it was a temporary thing but after doing some reading realize this could be a lifetime thing? I’m a radiology technologist I do ultrasounds. I usually stick to a pretty low carb diet but I do  Love dark chocolate! Fortunately my GP referred me to a rheumatologist but my first visit with the rheumatologist he basically brushed me off due to my lack of increased markers in my blood. He shipped me off with Celebrex and told me see you in three months hopefully you will feel better you might’ve caught something. But as the next week progressed I was feeling worse and worse and said no this is not normal I’m going back and I’m going to stand up for myself. So I did he was very receptive so we’re trying to prednisone which seems to be working or so it did for the first week. Now I’m finding this week the eggs are slowly finding their way back so I think I need maybe a bit more of a dose.  I’m lucky to work in the hospital so I just walk up one floor to see the rheumatologist so that helps and things are usually speedy for staff

13

Wow well it doesn’t sound like that’s much better than the gaining of weight. I hope you get back to where you want to be soon!

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Bilateral carpal tunnel syndrome is a common part of PMR - and that your symptoms are increasing does suggest there is a lot going on your rheumy hasn't identified and confirms my suspicion you are not on anything like a high enough dose of pred. At the very worst your pain should be stable - but on enough pred you should get to a very low level of pain and then you reduce to find the lowest dose that allows that.

15

I know a few people who have lost weight while on pred - I'd swop!!!!

16

Interesting about the dry cough. When I first developed symptoms, a dry cough was one of the most troublesome. It stopped after I started on steroids, but returned when I went too low. 

17

Sadly my GP doesn't seem to think I'm suffering. So on advice from people on this forum I've printed off a research paper - the Bristol Paper' and am sending it to him with a letter asking to be re-referred to the rheumatologist who first saw me. I've also had to push to be referred to the physio department of my local hospital and to be referred to a gastroenterologist regarding the problems I have eating. So if you have problems don't be brushed off but be determined to get the help you need

18

Yes weight loss is always more fun then weight gain. But if it’s muscle weight that you’re losing and that’s no fun you become weaker your joints become painful and you don’t look as good. Muscle weight and fat we are just numbers on the scale but if you can lose the fat not muscle all the better!

19

Read the stuff I've given you links to and take anything you feel is relevant to your rheumy. The 2015 Guidelines would be a good start - you need more than 10mg as 2x5mg. The Dejaco paper is pretty new so he may not have seen it.

"Lifetime" is rare - 1 in 20 at most. Half of patients are off pred in about 5 years. Good to hear the "colleague" thing still works in Canada! Don't benefit now, retirement has many compensations but that isn't one! But our healthcare service here is very very good.

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Whoops I lost 5 stone not the 15 that my previous post indicated but 5 stone is bad enough