Still working

I'm sorry to hear of that difficult time and very sad period you went through. it's very hard to lose a parent and the sorting out of all their belongings and estate can be extremely stressful.

Best wishes and hugs to you

Hi Adette! I was 50 when I was diagnosed, very young too! But if you react to steroids within a day or so, it's definitely PMR!!!

All the best Andrea xx

Why not? The Guidelines say over 50 - if you have problems with the consultant ask to be referred to another. How are your GPs about it now the locum has left (I assume)? 

"But if you react to steroids within a day or so, it's definitely PMR!"

Afraid not - other things will also respond to pred and many rheumatologists don't accept that criterion any more. It is part of the overall picture though.

"High blood calcium causes a lot of the symptoms people on here have"

I have to disagree with that statement and I'd be very interested to know what makes you think that. In the 7 years I have been involved in the 3 PMR/GCA forums in the UK, I have come across maybe 3 people who have had a raised blood calcium and only one of them had PHT. 

The symptoms are totally different, when they do occur, in PHT - 70-80% don't present with symptoms in the first place, the raised calcium is found as a result of routine blood tests since calcium is almost always included. Patients who are diagnosed with PMR are always symptomatic - they wouldn't have gone to the doctor if they weren't - and the only symptom in common is fatigue. There is no true muscle weakness, any restriction in PMR is due to the pain and stiffness. It doesn't even appear on the differential diagnosis list.

 

The reason I say that is because I was diagnosed at 53 by a Rheumatologist as having PMR - even though she said I was really too young - but she thought all my symptoms were due to PMR (such as stiffness, sore muscles, fatigue, difficult to get out of bed).  Various doctors had said the symptoms were due to the menopause/age!  I was given Prednisolone, a PPI (Omeprazole), and high doses of calcium and Vit D.   The Prednisolone only masked the symptoms but at less than 7 or 8 mg had no effect at all and it later transpired to be the wrong disease, and all that treatment for the wrong disease made me much worse.  A doctor then said during the course of a year of wrong treatment that a lot of my symptoms were due to the Prednisolone!!  The Prednisolone made my muscles weak and the muscles above my knees became thin.  The point about this wrong treatment is that having extra Vit D and calcium when you already have high calcium is that it increases your risk of a heart attack or stroke and it did ultimately affect my heart.  So really this is just a warning, just to make sure the diagnosis is correct.   The majority of people with PHPT disease are postmenopausal women which muddies the water sometimes regarding diagnosis due to the many symptoms people can get.

There are only 2 reasons why people get high calcium - certain cancers can cause it but it's relatively rare, by which time you are already in hospital very sick, and the other is PHPT because one of the 4 parathyroid glands has grown an adenoma on it and is therefore producing excess PTH and therefore the calcium level in the body therefore cannot be controlled within its normal tight range. 

PHPT has 21 different symptoms - and some of them appear to be like those of PMR - my Rheumatologist obviously thought so since she diagnosed them as PMR.   They didn't used to check calcium routinely, I think they do now, it was when I told my GP I had broken 3 teeth - she then did a calcium test which showed I had high calcium and then a Dexa bone scan which showed I had osteopenia almost to the point of osteoporosis.

In PHPT, the symptoms are not necessarily that obvious in the beginning when the adenoma first starts to grow and so the old medical school of thought believed people didn't always have symptoms but the damage from the high calcium is caused by how long you have the disease not how high your calcium goes. 

"I have come across maybe 3 people who have had a raised blood calcium and only one of them had PHT" - even if you have high calcium, if your adenoma does not show up on a scan, they say you haven't got it just because they cannot see the tumour on the scan.  But the tumours often don't show (mine didn't) so I was told the surgeon here would not operate because they cannot see it on the scan.  I therefore went to the States to get mine removed from the world famous specialst centre there (the one the recent Euro lottery winner went to, to get hers removed).  I have a colour photo of my tumour - it was the size of an olive.  The surgeon in the UK who I would have had, not such an expert, removed lymph nodes from one patient's neck thinking they were parathyroid adenomas!!  I had a lucky escape.  I am now cured and no longer have PMR symptoms.

I am certainly not saying that people on the forum don't have PMR.  I worked in a surgery for 11 years as an Administrator and typed thousands of hospital referrals and did lots of courses and I was aware of PMR and PHPT but now I have had PHPT myself and gone through this experience - I am just sharing what happened to me because sometimes people do get misdiagnosed and it's always worth checking just to be sure.   My Rheumatologist did an ESR test which was high and was even more convinced that I must have PMR - but as my surgeon said, you have to be very careful of a rheumatological diagnosis in the presence of a parathyroid tumour and hypercalcaemia (high calcium).   Often people think they don't have symptoms at first from PHPT but after the tumour is removed they feel so much better but the longer you have the disease, the worse it will get.

I had my tumour removed and I am now virtually 100% better (except for bones still a bit thin, but dramatically improved and should improve even more over time) - and I have no polymyalgia-type symptoms any more and am not on any medication.   ESR still somewhat high (but then it always was even when I was in my 20s and sporty - my Rheumy now says a high ESR is normal for me)! and my surgeon said it's a very non-specific test and told me to stop taking the steroids as soon as I finished the taper as you can't stop suddenly.  I do know that not all people with PMR have a high ESR.   Just to complicate things further, it is possible to have a high normal calcium level and still have an adenoma in a small number of people. 

So that is why I say just be sure that you check everything, just in case like me you are misdiagnosed as I had a terrible time with it all.

 

I believe sarcoidosis can also cause high calcium, but don't know if it's the same chemical whatzit as the other causes.  I've read there's a possibility of hypercalcemia as there's a problem with Vitamin D metabolism.

Yes sarcoidosis (which is quite rare) can in some cases cause hypercalcaemia but then the PTH will be low in that case.  (Sarcoidosis was ruled out in my case very early on).  PHPT is almost always diagnosed by high levels of calcium and high levels of PTH together.

The NPC say that if you have high calcium, then the odds of you having hyperparathyroidism as the cause of your high calcium is about 99.9% and the odds of one of the other problems (like cancer, sarcoidosis and a few other causes) being the cause of your high calcium is near zero. 

 

That's funny because i blame my boss and my lovely 2 identical twin step daughters too who are in their 30's but acted out like teenagers againts their father and especially me.

It has taken me 8 years to not give a dame to blend the families and i only have 1 son. I could write a book of horror stories on their behavior and tag teaming.

I've written her off as a bad joke, but I still get really aggitated when I think of her and what she's done to her father (and me). What an emotional train wreck.

He has another daughter that I've 'forgiven' but she's still awful. I don't bother but he's still hopeful they will 'grow up'. They are 24 and 21.

Ours are 37 and the least i see them the better but they are my husband's daughters and he needs to see them and one is now pregnant with twins.

I can tell you now they will isolate themselves from us which is sad. We have so much to offer but they are spiteful.

My husband is a gentle ben and honestly sees nothing and i read them like a book and see all.

We don't need this stress so good for us in saying the hell wirh you.(meaning you and i)

I'm fascinated to read what you and Maid Mariane have to say about stepdaughters.  I was a stepdaughter myself and I have to say my stepmother was very difficult to get along with.  I've always blamed her!  There was a moment when I saw how other people saw her, however.  She had taken me on a cruise with her (very generous, I know, but only because she couldn't find anyone else to go with her).  she'd very unfortunately fallen and hit her head as we were descending the gangway about to head to The Hermitage.  Split second decision, I went on the tour so I could take pictures and get the video, while she was left to medical attention on board.  When I came back she was high as a kite on demerol and absolutely the sweetest person ever.  All I could think was, now I know what other people see in you, why could you never have been like this with me?

Hi Anhaga

My mother-in-law was a lay minister and called me a saint for not lashing out at how the girls treated me like dirt and the same with my husbands sister. As i said i tried everything because it's in my nature to help people but after years of being sh*t on i stay close to my husbands side when near them so nothing is misconstrued. Fortunately they have very busy lives unless they need their father to fix something so i can stay away.

My husband fell off the roof and was badly injured and the one who came to help weekly was my son not his girls or son.

They didn't even come to his 65th huge birthday party but when they need something and you dont run they hold it against you.

Their mother has been dead 10 year and they still celebrate her birthday.

As a past psychiatric social worker from day 1 i told my husband these kids need help.

They tried for family counseling but when it gets to the grit they quit.

What can i say.

My son just says as long as your happy. I know they see a relationship that is very happy and very different from their mom. My sps and i have alot of common interests that were not their with their mom but what makes it worse we are the same ethnic background and what they think is a Ukrainian tradition isn't and i know it. So i know that bugs them that i make all this homemade stuff which mom didn't. As i said i could write a book.

Example i make homemade perogies and they won't let their sps eat them only store bought ones that they bring. Childish. My husbands family now won't eat store bought and request them.

So the stress of them is great and now wirh twins i know whats going to happen which is sad.

I'm glad you have a relationship with your step mom now.

My stepmother passed away about six years ago.  She stayed difficult to the end!  But I don't think I ever treated her the way you say your stepdaughters do.  But the difference may be that my real mother died when I was very young, so there was for me really no other mother figure in the picture.  In fact it was issues around her being willingly defrauded of her money, etc., which started me on the stress downward spiral, I think, which with the accumulation of a bunch of other things led eventually to the PMR breakdown.

That's to bad. Just came back from the beach with the girls and we were talking about my step daughters.

We blame my husband for not nipping it in the bud but that is the one thing i love about him he is so easy going but to blind to these things and is afraid of confrontation.

I hate to say it but raised with poor etiquette. Yet on his side the family is great but have found out through old friends of his deceased wife she was a back stabber and lost friends which he and i now enjoy.

Everything stems from somewhere.

I just encourage him to have a relationship and i minimize mine more than ever with PMR. just can't take the phoniness it truly causes me pain. Whatever was or is their moms i encourage juan to give it to them and i think they know that now which has helped . For gods sake i don't want it.

I don't even know where to start to describe my two evil stepdaughters. Sigh. They are lying, theiving, cheating, coniving b$tches. We've had to change locks, get a safe and lock them out of the house at times. I might sound a bit snobby, but I'm a well educated woman from an honest hard working family and these girls are just trash. And they weren't raised like that. I really don't understand what drives them to be so bloody awful except that they were spoilt rotten by their mother and didn't learn the concept of consequence. If it were just against me I wouldn't care, but they are even worse to their father - it was Father's day here on Sunday - not even a text message. For the third year in a row! From either of them! Not even for his birthday!

... I stared writing about what happened before I got sick, but deleted it as it's just too stressful to re-live. Sigh.

I think between you and i could write a book. My husband turned 65 and i threw a large party with band and all and they didn't show.

Our 1st Christmas the one hosting said they didn't have room for my son and wife but had room for a friend. I stayed home with my son and wife. As i said they are pieces of work. It amazes me that they have responsible jobs. These 2 were spoiled also and like you my family is very well educated.

Nice to know someone else has the same experience. As you say just talking about it causes pain.

Good luck and let's just be happy in order to get better.

Absolutely! I don't engage in any conversations about them (other than at this level), and told Mr Flip that he's welcome to have them over and see them all he likes, but I will never forgive them, and will go out if it ever happens - which it won't because they just don't bother. lol