Newly diagnosed with PR, and terrified.

Thank you for your reply EileenH. I don't honestly think they (specialists) have been stringent enough in their diagnosis. I have limited movement of my jaw which is indicated in GCA, I have no pain or loss of movement in my hips. I have Knee pain. Certain parts of my body are sore to touch ?? My right hand rib cage, the right hand side of my forehead and nose. The top of my left foot. Being a person who opposes chemical interference in my body for no other reason than I think my body should "cure" itself. Not on any religious beliefs, but just a belief in my bodies ability to(unfortunately very slowly) to do the job. I guess as a person who is incredibly healthy, with a mum who is 94 and healthy, I find it so hard to accept I now have this affliction. Hoping also that GCA isn't really what is wrong with me. I was only on the 10mg of Prednisole and stupidly or not took myself off, with my GPs direction on weaning after 3 weeks. 

My reply really only applies if they are telling you it is PMR - but what you describe there really doesn't sound typically PMR. Limited jaw movement is not necessarily a sign of GCA - jaw claudication is, pain which starts during chewing for example and goes away when you stop the action.

Do you have shoulder pain? One of the criteria for a dx of PMR is hip and/or shoulder pain and stiffness - you don't have to have both (though some doctors think you do) but you do need symptoms in one or other. 

And I think I do agree - your doctors haven't done due diligence. You have something - I'm far from sure it is "just" PMR though.

I may know what's wrong with your left foot simply because I have recently been dealing with the same kind of symptoms. I have an appointment with the podiatrist later this week to confirm this diagnosis. But as a Google search I suspect what I have is midtarsal fault. You might look it up and see if it fits what you're experiencing. And of course have it checked by a doctor.

Most people on this forum would love to find a natural cure for PMR. In the US we have functional drs, who try to get to the root of the illness, and naturopaths, who only use natural means to treat the patient.  I for one wait til the last minute to see a dr (not so for my pups), because I know they'll just throw drugs at me. My mum was a healthy 99 when she died, and was on no meds. But we're all different

Dear EileenH

I have just had this site recommended by my doctor and in the 5 minutes of browsing I can see how knowledgeable and kind your posts are.

i was diagnosed with PMR on Friday having ignored symptoms for 18 months as I'm 48 and work full time, not being able to give in to illness. In November I experienced a drastic gear change and found myself crippled for first two hours on waking, in both shoulders but still carried on with a brave face. Last Tuesday I broke down at work because the pain, fatigue and emotion became too much, I had nothing left. I registered with a doctor and made appointment that afternoon. He sent me for blood tests and X-ray on the Thursday, thinking it may be RA. My results came back normal but with a slight inflammation evident. He prescribed 20mg of Prednisolone for one week, which worked on the morning pain, so diagnosed PMR. 

I returned to to work today, having had 3 days off (I never take time off), but it was a disaster, feelings of complete detachment as though my brain had been taken hostage, confusion, lack of vocabulary along with all the usual discomfort. I work in a highly stressful environment with little or no empathy, just inconvenience. I expected it to be tricky as I barely know what it is myself, or how it might develop/stabilise. I know I can't educate my employers/colleagues overnight, but I wish I could articulate what I'm feeling without sounding like a diva. I have always worked hard, often for 8-9 hours every day without any breaks, full of energy and passion, but right now I can't function enough to do the job.

my doctor has signed me off for two weeks today to adjust to the meds and new diagnosis, which is very kind, but I have no idea how to inform my employers and should I just grit my teeth and go back in tomorrow.

i don't have any answers, feel desperately out of control and quite ill.

i'd really appreciate your views and wisdom please!

thank you for reading and for all your posts, I'm trying to absorb as much real life experiences of PMR as I can.

take care.

with best wishes

nicola 

I think you should take at least the 2 weeks off sick - and it MAY be worth trying 15mg already. It was the starting dose I used and that 5mg can make a big difference to the brain fog and stuff that pred causes at first. The most recent recommendations are "to use the lowest effective dose in the range 12.5 to 25mg/day." If you try 15mg early one morning and it isn't enough you can always take the other 5mg later. Are you on ordinary white pred tablets? 

I worked as a freelance translator from home - I didn't even have to get dressed, never mind get to work! Even so, getting the brain in gear wasn't easy and I can remember reading a page I'd written several times, wondering if it really was right and made sense! All of us on the forums who no longer work have immense respect for those of you who do still have to work. It is hard. Very hard if you have a post like yours - some colleagues/bosses are wonderful and helpful. Others not so much. And PMR and stress are not good bedfellows - to the extent that many will say stress was probably the final straw that sent their immune systems into meltdown with the result: PMR. A few have had to bite the bullet in the end and change jobs  despite the fact that PMR/GCA is covered by disability discrimination legislation so that your employer does have to make reasonable adjustments so you can continue working.

Have you an HR department? Are they helpful? Do you have an Occupational Health department? They are the ideal people to speak to. I worked in the NHS so that was available to me but otherwise I know nothing about the workings of the workplace these days I'm afraid. Maybe others would have suggestions if we knew what sort of work environment you are in. Is parttime an option? Sometimes it doesn't help that you were the one who worked harder than everyone else - and believe me, there isn't the employer out there who will erect a memorial "She gave her all to the company"!

In terms of reliableinformation have you  seen this thread?

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

The NE of England charity site has a lot of info - and they have a DVD called "You are not alone" that was made by doctors, healthcare staff and patients to explain to family, friends and colleagues what PMR does to us. Might that help?

You are in the UK? Whereabout?

Hi Eileen

Thank you SO much for your invaluable advice and insight. I am in the U.K, working as Registrar for an independent school. Only been there 7 months, having worked in a variety of schools for 11 years, travelling extensively for international school in London. Now firmly in one place but a fair amount of responsibility.

I reduced from white Pred 20mg to 15mg today, reducing weekly by a further 10mg on advice of GP, then 1mg per week to see how it goes.

We do have an HR Dept, and a brief discussion resulted in my being informed I could see an 'occupy health' if I wished! Not even knowing what that meant I said I'd let her know!

Just informed my line manager that I've been signed off for two weeks but said I'd go in tomorrow to 'make a plan'. So, I'll be there for 8am to get to grips with task ahead.

Ha! I spent all morning typing and deleting, making no sense of what I was trying to say, as though the alphabet was suddenly made up of symbols I could not recognise! Since I'm now at home in my heated throw, I have slightly more awareness!

I think you are right; a two week halt on my otherwise hectic routine will be just the ticket!

Thank you again Eileen, this is like 'coming home' on this forum, we speak the same language!

Very pleased to 'meet you', are you in the U.K. too?

Nicola

Hi Nicola, I am so sorry you have PMR. Reducing 1mg a week sounds rather fast to me and could cause a flare, keeping it slow seems to work better. PMR usually lasts at least two years so rushing to zero will only end up in pain if you are not careful.

I hope that is a typo/brain fog " to 15mg today, reducing weekly by a further 10mg on advice of GP, then 1mg per week to see how it goes"

To go straight to 10mg from 15mg is often too big a reduction and going via 12.5mg would be better and less of a stress on your body. Weekly is also a bit fast as well - I gave you the links, look at the "Bristol paper" whose recommended reduction scheme for PMR is fairly realistic. However - in the replies section there is also a slow reduction scheme which we developed to help the people for whom 2.5mg steps down don't work. It does seem that if you can reduce from 15mg to 10 early on it is easier - but that all depends on how active the autoimmune part of PMR is. If it is very active you may hit the buffers at a higher dose. Once you are at 10mg you MUST slow down though and even 1mg per month may be unrealistic - but you will find that out.

As ptolemy says - this isn't a few weeks on pred and done and dusted. PMR is a chronic illness and 2 years on pred is a minimum expectation, it may be longer. Once your symptoms are under control life will improve but everyone is different and some struggle for a lot longer than others.

HR probably said "Occy Health" - they know what it is, but for the person who has never needed it it is a meaningless contraction! I would get an appointment with them. The OH doctors are experienced in assessing whether and when someone who is ill is capable of going back to work and support time off as required plus graded returns to work. 

I take it you are going to work this out with your GP rather than going to a rheumatologist? They sound quite sensible! Only "quite" though.

Me? I'm British but I live in northern Italy, half way up a mountain, a very snowy one today, for the first time this year. Bit late really - but there'll be people who think it is fantastic  

Hi Eileen

Not a typo!

20mg for first week, down to 15mg today for one more week, then 10mg on Monday... then, he recommends reducing in 1mg's to see where I can manage the symptoms.

I will certainly question this on my next visit as you have suggested it may be too big an ask.

No mention of rheumy referral, he just said it's not RA so they wouldn't accept referral. However, I have read that my being 48 should trigger a chain reaction and referral??

We tend to accept what the medical profession dispense, without question, but I will be querying the reduction in dose as I'm already feeling dreadful and it's only been one day at 15mg!

Wow! Italy... how wonderful!

You have been truly fabulous Eileen, thank you for everything thus far! I have made notes and will be a little more challenging next appointment!

Have a lovely evening!

Nicola

Then go back to 20mg - if the truly awful is PMR-type symptoms. No - sorry, down to 10 after 2 weeks is far far too fast. Show him the Bristol paper at least. They take 3 months to get to 10mg. 

Darn - yes, young patients SHOULD be referred. There is this mindset that you have to be over 50 - I think it is a load of mdooly but there are other causes of the symptoms and a GP might not be au fait. Where are you?-ish that is.

I've always been a "my body will fix itself" stubborn person. I guess I can accept NSAID's and Paracetamol, but "steroids" conjure up some sort of evil, I'm going to change your body and run it myself scenario.......who said I am paranoid ... Lol

Thank you for the clarification on the jaw problem. I guess my main concern is receiving a diagnosis that fits all my symptoms. I will try to see a private Rheumy and let him determine, thank you again for your experienced words

Jean, I felt exactly the same way, but I have to say by the time I was diagnosed I went to the pharmacy on my way home from the doctor's office and took my first dose of prednisone right away!  I couldn't believe about six hours later sensing that I already felt a little better.  On the third morning when I got up I suddenly realized I hadn't had to plan how to get out of bed.  It truly was a miracle.  Of course the subsequent twenty months or so have been a journey of reducing the miracle/demonic drug to the lowest possible amount!  

I just love the way you refer to the prednisone as a miracle/demonic drug. It definitely hits the nail on the head.

Hi Anhaga.....thank you for your reply.

so tell me....what dosage did you start on and how are you now ? And what is your dosage now....any idea how long you will be on it ?

Jean

Hi Jean.  I started at 15, June 2015.  I was there for five weeks and then followed GP's instructions to reduce by 1 mg per week.  This was fine until going from 10 to 9.  That's when I discovered this forum.  I went back to 10 for a couple or three weeks and then started, with GP's blessing, the dead slow taper.  I've followed this, with my own variations, ever since.  I'm now at 2 mg, but it's taken me several months to reduce from 3 and I anticipate that any further reductions will take at least as long.  There is now the issue of adrenal suppression to deal with, as well as making sure PMR doesn't flare.  I do feel that at this low dose there are minimal side effects, certainly nothing I'm aware of, but the medication is still certainly necessary.  I feel well, have no range of motion restrictions but sometimes, especially when I'm tired, feel what I call niggles.  I don't aim to be painfree; considering I'm rapidly advancing towards my 70th birthday it would be unrealistic to expect to feel 100% but if I felt like this without having gone through the PMR hell I'd consider myself to be very healthy.  One just becomes so aware of every little twinge!

Apparently a doctor in southwest England with the oldest average age of patients in the country says he finds it needs about 3 appointments for him to explain to patients that the twinges they are feeling are absolutely normal at their age and they can't expect to feel 35 when they are more or less 70! 

It was heaven to feel so extremely well during those first heady weeks on pred!  

I often think it would have been great to stay on the original dose with no side effects. Oh well, the wonder drug had a little sting in the tail.

I have had moments when I think, oh what the heck, I'm going to take three times my normal dose and see how wonderful I feel.  Of course I've never done that.  But it is tempting.  

I hate to admit it but I have occassionally had the same thought!

I have on very rare occasions taken double when I knew I needed to be REALLY well...

Hi Eileen,

I did not have a "twinge" or any symptoms at all , and it was like Santa had come down the chimney one night....said you are a bad girl ...cop this.

The next morning I was afflicted

that is too much of a generalisation.....about age.....

Jean xx

If you are referring to my last comment - I reported what a doctor himself said was his experience with the large group of retired patients in his practice. The town has a higher rate of retired people than anywhere else in the UK. 

Whatever any individual may feel, there are only a very very few who will get to advanced age with the odd twinge or two - and in that case I wasn't using the word in reference to PMR. It manifests in two ways - it creeps up slowly as mine did, or someone goes to bed perfectly fine and wakes  the next morning almost unable to move. But no-one can take every comment on the forum as referring to them personally - unless it was in reply to them...