PMR in Hands and Wrists

Hello Constance and Daniel

I was incorrectly diagnosed with PMR.  I had high calcium (and PTH) and I was actually suffering from Primary Hyperparathyroidism.  Some of the symptoms are similar to PMR but the high calcium is a red flag - it is tightly regulated in the body and if it becomes elevated it is quite likely you have Primary Hyperparathyroidism (PHPT).  Eating less calcium when you have high calcium is not going to help.   I would suggest you look up PHPT and check out all your symptoms.  The steroids did not work above 5 mg for me being treated for PMR and because they gave me extra calcium too to cover the steroids, I got a whole lot worse.  If you have high calcium you need to see an Endocrinologist not a Rheumatologist.  PHPT often causes a low Vit D too so if that is very low as well, then even more reason to check it out.

N.B. parathyroid disease is different to thyroid disease, there are 4 small glands behind the thyroid that regulate calcium in the body and if it is high, it means you have a problem.

 

I don't know if my calcium is too high as I haven't been tested, but a couple of months ago I found out my Vitamin D was near the toxic level so I assume calcium may be high too.  This is most likely due to the presence of sarcoid granulomas in my body, as apparently they activate Vitamin D, thus negating the body's normal balance.  How is your Vitamin D level?

This is very interesting.  I don't think my calcium level is super high, but a bit.  I will check my paperwork in a bit.  What struck me is that a friend of mine was diagnosed with PMR, but then diagnosed with Hashimoto thyroid. She had the nodes in her neck that were affected.  I have low thyroid, but not what she has.  She is on something called Armour, prednisone (the doctor is weaning her off of this, and methotrexate.  He has also said that she has RA based upon one little finger that is stiff and sticks out in the morning.  I am curious is you know anything abotu Hashimoto as I would like to pass this on to her.  Good luch, Rosemary

My Vit D is good.

Good!

Hello Donna, thank you.  I'm afraid that I don't really know much about Hashimoto's except to say that I do know someone who had it, she had a thyroid goitre and had to have her thyroid removed and is now on synthetic thyroid hormone replacement which is difficult to get the right level/balance.  She also lost some of her parathyroid glands in the surgery as they were enmeshed in her thyroid gland although I don't know how many, I think she has only 1 of 4 left now, her surgeon doesn't do that much parathyroid surgery.  Unfortunately her vocal cord was damaged in the surgery and she had to have speech therapy for a while and now has to have 'teflon coating' treatment about once a year.  Sorry I can't be more helpful on that subject but I do know quite a lot about parathyroid disease as I had it for well over 6 years but am now cured (I had my surgery in Tampa although I live in the UK) because they are the most experienced surgeons in this disease.

Did you check your calcium levels?  If it is a bit high more than once on testing, it means you likely have a parathyroid problem and need to see an Endocrinologist.

Good luck and let us know how you get on and if your calcium is elevated.

Best wishes.

Rosemary (This is the 2nd time I've tried to send this, it said bad gateway last time)!

 

Thank you so much for your response.  Oh, my goodness, your poor friend with Hashimoto disease.  She was really put through the wringe.  I am glad that your thyroid disease is taken care of.  Yes, I did check my calcium level. I think it is okay.  It was 10.3, the normal range listed to the side said 8.8 to 10.2.  So mine would not seem to be too elevated.  I will keep an eye on it and ask my doctor. I do remember asking him at the time as the lab had an H for high next to my reading.  He told me to look at the rainge and that it wasn't really that high.  I had forgotten that we had that discussion, but I will certainly be very aware of it in the future. I appreciate your knowledge in this area.  I love this forum.  I cannot believe how much I have learned.  Thank you, I hope you continue to improve.  Donna   I am in California

Many thanks for your reply Donna.  Forums are great for sharing information.  Yes I feel sorry for my friend because she had her op about 3 years ago now and recently said to me that she 'feels off balance' because it's difficult to get her replacement thyroid hormone level right and I know lots of people have that problem.

What I had wasn't thyroid disease - it was PARAthyroid disease.  So many people get this mixed up because they've not heard of the parathyroid glands - the word PARA means around and they just happen to be situated behind the thyroid gland but they do different jobs.  The thyroid gland deals with metabolism in the body and behind it are these 4 tiny glands the size of a grain of rice which have the job of keeping the blood calcium level in the blood in a tight range, not too high and not too low.  If the blood calcium level is elevated outide this range, then it is likely you have a benign parathyroid adenoma on one of the parathyroid glands.  This means it goes wrong and instead of producing the right amount of parathyroid hormone to regulate the calcium in the blood, it produces more than it should which in turn raises the calcium level.  This makes you feel ill although it may not be noticed right away and it causes lots of symptoms some of which are similar to PMR which is why my doctors wrongly diagnosed me with polymyalgia when what I really had was high calcium and a parathyroid adenoma.  Parathroid disease is the 3rd most common endocrine disease after 1. diabetes, 2. thyroid problems. 

The level of calcium that is normal for people is age-dependent.  Teenagers and young people have a higher level and it reduces a bit as you get older.  Adults over 35 should have a calcium in the 9's for it to be normal, so if it is over 10 it is suggestive of a parathyroid problem.  I don't know how old you are but over 35/40 years of age it should not be over 10.  That is probably why your calcium had an H next to it on your lab report because at 10.3 it is likely a bit out of the range for your age.  You need to keep an eye on it.  If it happens just once, it is likely ok but if you have more than one elevated calcium you need to see an Endocrinologist.  If you want to check this out, there is an important educational site on the web of a hospital in Tampa, Florida where they do parathroid surgery (they are experts).  If I were you I would have a read of it.  There are 21 different symptoms with parathyroid disease and you may find you have quite a lot of them.  We are not allowed to advertise email addresses etc and the like but if you search for it under Tampa, it will give you all the information you need to know about Primary Hyperparathyroidism.  I wrongly had steroids given to me for polymyalgia for a year which made me so much worse as it was the wrong disease and I would hate to see other people get misdiagnosed as well.  I just wanted to highlight that it is important to check your calcium levels to make sure you really do have polymyalgia and not parathyroid disease. 

Hope this helps. 

Kindest regards,

Rosemary

 

For some reason I was having trouble getting this page to open, so didn't respond sooner.  I very much appreciate your very invaluable information.  You are very well versed on the subject of parathyroid disease.  I will be keeping a very close watch on the calcium blood level and will discuss this with my rheumatologist next month.  I will ask about a consulation with an endochronologist.  Fortunately I do have the better insurance here so I will not need a referral, but I will want to be advised as to a good doctor in my area.  Many in the U.S. have HMOs and do not have the option of just picking up the phone and calling a specialist, I will be able to do that, but want to be sure that I get the correct on.  You asked my age.  I am 79.  I see by the charts that my level should be about 9.9, so it is definitely in the higher range.  Thank you for all of your information.  I love all of the things that I have learned on this forum.  I am thinking that I really do have PMR as it has responded so very well to prednisone.  I had mentioned before that I am pain free and have been since I started splitting my dose.  I am able to be very active again, I am taking very long walks and getting a lot of things done around my house that were not getting done when I was in pain.  Have a blessed day, Rosemary.      I hope that you are feeling well.  Donna

Hello Donna thanks for your reply, yes it's great to be able to share info and learn new things.  You sound like a really amazing lady!  I'm glad you have good insurance.

You may well have polymyalgia rheumatica (which just means many muscle pains) but may I just mention a word of caution since you mention that you have osteoporosis.  When you take steroids the doctor should also give you calcium and Vit D supplements (and usually a PPI to protect your stomach).  

When you have parathyroid disease and your calcium is already elevated, taking extra calcium and Vit D is detrimental and the calcium will not help your bones and the parathyroid disease also removes calcium from your bones.   I would recommend that you keep an eye on your calcium level and get your bones scanned again at some point to see if they are improving with the extra calcium and Vit D.   The steroids can mask the symptoms of parathyroid disease.  They did work down to about 7 mg for me but beyond that not at all but all the while they were damaging my bones because I had parathyroid disease and the symptoms can overlap.

Just wanted to share that with you.

Blessings to you too and I hope you can manage all your symptoms well.  I got a whole lot worse despite the steroids before getting the correct diagnosis and would not wish that on anyone else.

Kindest regards.

Rosemary

 

Why the PPI?  that's just another medication which can have side effects.  

Hi Rosemary,  This will just be a quidk note here, but I wanted to let you know that l do NOT have osteoporosis.  I am not sure where that came from.  My bone density tests have always been fine.   I will certainly take into account that I perhaps should not be taking vitamin D and will stop taking the calcium.  I have a taken these supplements as a precaution due to my age.  I am not really at risk for osteoporosis as I do not fit the profile.  I am not fair, my skin is not fair at all, I have brown eyes, and brown hair.  I know taht often they talk of fair skinned people as being more prone.  I so appreciate all of your great advice.  Have a blessed Day, Donna

Not a bad idea to have DXA scan if you haven't already, as prednisone can cause bone thinning.  There are a lot of nutrients which have to be taken to ensure bone health, and calcium is usually plentiful in a well-balanced dkiet.  It's the magnesium, vitamin K2 and a few other things we need to be alert to getting enough of, because they help calcium and vitamin D to do their job!

Thank you, you have a wealth of information.  I appreciate you taking the time to inform me.  Donna

The PPI (Omeprazole) was given as cover for the steroids (Prednisolone) because long-term steroids can increase the risk for stomach ulcers.  I didn't like taking all those meds, had I learned sooner that I didn't actually have PMR, I would have refused to take them.

I've been on pred for over a year and haven't needed any meds for stomach.  I think they aren't necessary for most people.  We just make sure to eat before taking our pred.  

I really didn't think I needed a proton inhibitor either.   I have never had any problems with my stomach.  I also make sure that I take my prednisone emmediately after a nice breakfast and after dinner.  Never the less, my doctor insisted on giving me a prescription for Pepcid. I am sure it doesn't hurt me, so I dutifully take it.  :-)

I thought pepcid would just be over the counter, not a prescription med?  There is some thought that by artificially reducing stomach acid all the time we're setting ourselves up for future problems.  

I will make sure that I am getting enough magnesium and K2.  Tnank you.   I appreciate your help.  Donna

Hi, I'm glad you didn't have any stomach problems,

I think the Rheumy instructed my GP to presribe them and she was the one who misdiagnosed me in the first place.  She also tried to diagnose me at first with another very rare disease, Bechets, which affects Middle Eastern people and I'm English!  She was a very nice lady but sadly got it wrong.  The Omeprazole was odd, it made my stomach feel sort of slimey and if I was sick, there was no stomach acid at all and it felt odd (sorry if too much info).  [smile]

It sounds like you were a real mystery to the doctors.  Are you feeling well now?  You could probably write an article for a medical journal describing your journey!

I think the only difference is the strenght.  My OTC is 10 mg and my prescription which is called Leucovorin is 20 mg.  I think it is cheaper getting it through insurance, so I am not complaining.  I bought the OTC first while I was on a trial dose of prednisone, once my PMR diagnosis was official, the rheumatologist gave me the Leucovorin.  Donna

Wow, I looked up Leucovorin.  Interesting medication.  Not sure I'd ever want to have to take it, though.  

OMG, I goofed.  The Leucovorin is the day after pill for my methotrexate.  I only take one five mg tab a week.  Yikes.  I am glad you checked.  No, the Pepcid one is Famotidine.  I cannot believe I mixed those two up in the conversation.  You are right about the Leucovorin.  I have read about it and the Methotrexate.  I waited three weeks before even starting those, but went ahead.  I have been on those for three doses now.  I am glad you wrote back so that I could clariffy.  Oooops, Donna

Whew - I was a bit worried there.  I couldn't quite understand the connection with pepcid!  

I am glad you brought it up.  Pretty silly for me.  I am so new to all of this.  So this is my routine.  10 mg prednisone with breakfast 10 with dinner, then on Monday, down the hatch with 6 2/5 mg methotrexate, then on Tuesday the 5 mg leucovorin.  I chose Monday for the methotrexate as I thought it would be easier to remember.  Up until now I had a very simple routine.  I do take low dose aspin, BP med, and thyroid med for low thyroid.  Those were just down the hatch the second I open my eyes.  Due to not being able to eat following the thyroid (1/2 to 1 hour) that has been hard.  So I can't eat as soon as I get up.  I have to wait and then eat so I can take the prednisone.  It all seems to be workign for me though.  The best thing I ever did was split the dose of prednisone.  My energy has come back.  I am active, and best of all no pain at all.  I will begin the tapering very soon though.  I don't want to e over confident.  Thanks for all of your concerns.  I have written magnesium and K2 down for my shopping list.  What strength do you recommend??? Thanks, Donna

Well, the Rheumy said there were about 4 things it could be!  If only she had included a calcium test in the work-up she would likely have realised it was PHPT not PMR or fibromyalgia or anything else.  She went by an elevated ESR and as my American surgeon said, an ESR is a non-specific test, yes it shows there is inflammation but it is non-specific.  PHPT (Primary Hyperparathyroidism) means you have an adenoma (benign tumour) on one of the 4 parathyroid glands behind the thyroid. The parathyroid glands regulate the calcium in the blood to within a tight range so it stays in the normal range. All cells of the body need calcium.  When it is elevated, esp with PTH (parathyroid hormone), it very likely indicates you have a tumour.

Long story short, Endocrinologists over here are still in the dark ages with this disease so I went to the world's only specialist clinic, in Tampa, Florida in December 2013 to have my adenoma removed.  The tumours can be ectopic in 20% of people and - lucky me - mine was! making it a lot harder to find.  But they have a gamma probe there which also helps to locate the tumour and it had to be bisected from my thymus gland, deep under my collar bone at the top of my chest.  Over here they just wouldn't have found it (no probes and the NHS in our area would not fund one) and also it's a completely different operation in Tampa (local anaesthetic v GA over here).

I had to stop all the extra calcium and Vit D prior to going there for the op as when you have a parathyroid tumour, taking extra calcium and Vit D can cause a heart attack or stroke but also makes you feel worse and it did.  The surgeon also said to stop the steroids - which luckily I wasn't on a high dose by the time I got there.   There are 21 different symptoms for PHPT and I had a large number of them.  I felt like I had flu every day, had chronic fatigue, couldn't think straight, was forgetful, developed heart palpitations, had severe headaches most days, nausea and sickness and had muscle and joint aches and brain zaps.  Those are just some of the symptoms, some people get kidney stones but luckily I didn't get those.

I don't have most of those symptoms now although I do get a bit of stiffness and joint aches occasionally but nothing like it was.  After taking the steroids I developed osteoarthritis in my knees (which I didn't have before, I was very fit prior to that) and the muscles above my knees had wasted and got very thin so all the treatment for PMR made me a whole lot worse before I was finally treated for the PHPT.  All of this has however caused some heart damage (althought there is none in my family).  I now have 2 small heart leaks and diastolic dysfunction with fluctuating high blood pressure and my heart is a bit stiff on one side causing slow relaxation so it feels like my heart just stops fleetingly sometimes.  But overall since my operation I am a lot better.  I do also have osteopenia (which was almost osteoporosis at one time but after the tumour was removed, the extra calcium and Vit D has put quite a lot back now).  It did however cost me my job (after 11 years) in the NHS as an Administrator in a GP surgery) because I became too ill to work and my symptoms were just so overwhelming.

So I am I would say about 80% better, my bone numbers are still negative but are a lot better now.  What kicked off the calcum test and bone scan was when I told my GP I had broken 3 teeth!  Sorry this is rather long but as you kindly asked, I thought I would tell you my story.  Even if it helps just one person, it will have been worth it.  That's why I say to people if you have similar symptoms, always get your calcium tested as it's not routinely done with other blood tests.  Also people with PHPH very often have a low Vit D as the body suppresses it in the presence of a parathyroid tumour as a protective measure.

Better get off to bed now, you may have nodded off reading this LOL (sorry, don't know how to do the emojees)!

Rosemary

 

Thank you so much for sharing.  Have you also posted on whatever forum would be relevant here?  There must be one for parathyroid.  It's a story worth being widely known, even if you want to keep yourself more anonymous outside the forums.  Thanks again.

BTW the four little squares at the top right of your post or reply box give you some options for tarting up the text!

I'm not going to go so far as to suggest dosages.  I think there's a fair amount onfinfo online and also sometimes the people in a health food store can be helpful.  I happen to have read a couple of volumes about K2 and one about magnesium but I'm not allowed to post info here.  Let's play a little game.  The volumes include the name of the nutrient - vitamin K2 for one and Magnesium for another.  The writer of one has the first name Kate and the other has the first name Carolyn.

I tried a couple of google searches with that barebones info and it is possible to find out what I'm talking about....

I have been sitting here Googling.  I have found some very interesting information and reallhy appreciate learning of all of these things.  I do not blame you for not suggesting dosages.  I should have realized that this owuld not be appropriate.  :-)  I do appreciate knowing what to look for.  Have a lovely evening, and thank you so much.  Donna

Hi Anhaga, sorry for delay in reply.  I managed to trip over a step i didn't see and fell and my wrist hurts now (and I now have sore knees too) -- can do without things like that with my thin bones.(thanks for the tip on the emojees btw).

I did actually post the info on the thyroid/parathyroid forum and it has been helpful to a few people.  The more we share our experiences about the possibility of a wrong diagnosis, hopefully the more aware people will be and hopefully get diagnosed quicker.

Sorry to hear about your latest problem.  It's a tricky one as there could be so many causes.

Have you checked your blood pressure and full blood count recently?

Hope you get to the bottom of it soon and feel better soon.  

Hi Donna - sorry for delay in reply - i managed to trip over a step and my wrist hurts now and so do my knees! 

Sorry, my mistake re the osteoporosis.  I know you said your calcium was noted as a bit high with an H by the lab.  It could be that your calcium has only recently become elevated so your bones are still ok, one very slightly elevated calcium is ok but if it continues to be elevated, there could be a parathyroid problem.  Parathyroid disease always eventually leads to osteopenia then osteporosis if it goes undiagnosed because the calcium is leached from the bones so keep an eye on your calciums and maybe have another bone scan if they keep being outside the range.  You may not fit the profile for osteoporosis, but parathyroid disease will lead to it because the adenoma on the parthyroid gland will create extra PTH which causes the loss of calcium from the bones and it goes into the blood hence the higher level.  You could also get a PTH test done (parathyroid hormone) and if that is raised as well as the calcium, then there could be a parathyroid problem.

It doesn't hurt just to check, better safe than sorry.  I just wish I had found out sooner that my calcium was out of range, my bones would not have got so bad and I would not have got so ill.

I hope you stay well and that you have a blessed day.  Let us know how you get on.

Rosemary

Ow.  Nothing broken?  Good sign!

I 'm reluctant to see doctor until next regular meeting in about a month. Will wait a bit and see.  

OH, my gosh, I hope you are okay from your fall.  That is my biggest worry as I have poor peripheral vision.  A really bad fall may have caused all of this in the beginning, not definitive, but it is possible.  I have such a fear of falling.  I appreciate your concern.  I am taking steps related to the slight elevation in the calcium and know the relationship to parathryroid.  I love how everyone is so knowledgeable and shares such a wealth of information on here.  Sure hope you are okay.  My bones are eveidentally quite good.  I had another fall where I fell right on my right hip.  I mean I really hit hard on cement, had e-rays and all was totally fine.  I dodged a bullet on that one.  Be well.   Donna