My Gran had PMR and GCA | Arthritis Information

 

I've been spending a lot of time with my mum this last week, as she has been sick, and we have talked about various family illnesses etc, as you do! Once we started on PMR, an incredible story emerged. My grandmother, who died in 1986, aged 86, suffered from an illness for several years during her sixties. It was never diagnosed as PMR, but as my mother described it in detail, she was actually describing classic text-book polymyalgia which carried on to be complicated by temporal arteritis, and sadly finally resulted in my grandmother having a stroke. I won't describe all her symptoms here, but they were exactly what I have been suffering since I got PMR. All the upper arm pain, stiffness, aching shoulders, neck, hips and in her case very sore thighs. She had trouble with dressing, using her arms etc and was in pain and unwell. I was about 10 years old at the time, and I remember her lamenting that she couldn't understand what was wrong with her, and felt she had suddenly become very old and tired and sick. Then she started having "new" headaches and head pain in the temples. I especially remember how she had a very sore scalp and head, how she could not comb her hair, wear her glasses, wear curlers, or even hold the telephone receiver to her head.She had earache which wasn't earache, rather pain in the ear area, classic jaw pain when chewing, tongue pain, the lot. I remember her as always wearing a wool headscarf around her head because of this pain. My mother took her to the best doctors looking for help and all she ever got was a diagnosis of "rheumatism" and prescriptions for antiinflammatories, aspirin and antidepressants, and one doctor diagnosed her head symptoms as "arthritis of the skull"!  In fact my grandmother never had RA. She did have some osteo like we all do, but never had hot swollen joints. So her PMR was undiagnosed and untreated and developed into temporal arteritis, also untreated, and finally she suffered a stroke. After the stroke she rehabilitated quite well and lived another 20 years, and the PMR/GCA burned itself out eventually. Although she was never the same, and remained an invalid. It sounds crazy diagnosing a dead person after all these years, but if in fact my grandmother did not have PMR/GCA I would eat my hat! My mother, who has a fantastic memory for detail, and who cared for my grandmother, agrees with me. We can only assume that in the sixties, in New Zealand, there was not a wide knowledge of this condition. My grandmother was taken to more than one doctor, although I don't believe she was ever referred to a rheumatologist.  My gran was a lovely lady, very intelligent, spoke several languages, was active and well until the PMR. Then the GCA caused the stroke and she was left barely able to speak even one language and an invalid for life. What a waste. So sad. I hate to think of the suffering and waste of life these two conditions have caused so many people. Even correctly diagnosed and treated they are a misery. Just imagine having full-blown PMR and GCA and not being recognised and treated. My mother says that at her worst my Gran would cry and say "no-one believes me about the pain". So I will take my pred without complaint. I don't want to follow my grandmother and have a stroke. chico39349.7123842593

How terribly terribly sad for your grandmother.

It is bad enough  to have PMR and be properly diagnosed but to have it and not 1 doctor  understanding what is wrong and being able to treat it ,no matter how horrible the medication, it is beyond sad.

I guess it may be  hereditary afterall What an incredible story, Chico. How sad and yet hopeful at the same time, I
can't imagine having this horrible condition and GCA before they were
diagnosing it. She must have really suffered.

At the same time this gives you an understanding of her and a connection to
her in ways I can only imagine. Thank you so much for sharing the story with
us. It means a lot to me to hear her story. You describe it so well that I can
picture her in her later days if not with the good memories i hope you have
of her prior to PMR/GCA. I guess it is helpful to all of us to see there may be
a genetic component.

Thank you Chico
pgr

My goodness Chico, that breaks my heart.  I can't imagine how hard that must have been for her.  Thank you for sharing your story.  I'm amazed sometimes on how strong people can be when they are faced with such dire circumstances. She sounds like a wonderful woman and her memory will live on through you.  Make sure you write down as much as you can about your mother and grandmother while you can.  After my mother passed away I started to write about her and so regretted not knowing more. 

I have a different view of the Pred after reading about your gran. I'm thankful for the diagnosis and the Pred...couldn't imagine what life would be otherwise.  If putting up with a good amount of fatigue and some pain is what we have to do, then so be it. 

You take care, Kathy

 

Yes, I have read there is possibly some sort of genetic component to this disease, along with environmental influences. Although we live in New Zealand, at the bottom of the planet, my family is from scandinavian europe, where PMR is apparently more prevalent. My mother has never had anything like PMR and I know of no other family member on either side with it. My grandmother's mother did not have it, but I don't know about any further back. They may have had other autoimmune conditions, I don't know. I have one sister with lupus, other than that, it's just me and Gran. It might be a good idea if we all talk to our families about this disease and ask if anyone knows anyone in the family who had such symptoms.

My gran wasn't a complainer, really, but she was obviously really suffering and being fobbed off with antidepressants and aspirin! I am going to find some old doctors to talk to and see exactly what was known about PMR and GCA in the 1960s. I know that prednisone was only developed in 1955, and there were years of trial and error with it, so even if she had been diagnosed correctly, they probably were not treating it with pred.
Wow, Chico!

What a heart-rending account!! Sometimes I wonder how on earth people back when ever coped with such pain, and to have no one understand or believe what they were going through makes it even worse. I think the older generation is a lot more stoic than I am, or maybe a lot of us are more knowledgeable with the internet searches we can do, and so demand more in the way of diagnosis and treatment. I could never have made it if I'd been in your grandmother's shoes. She must have been a wonderful and strong woman.

With our mobile society, so many of us do not know much about our relatives. I think my grandmother on my mother's side had RA. No one I know had any other rheumatic diseases. My mother has Crohn's disease, but I don't know if that has any bearing on things. My mother was born in Germany. Is that close enough to Scandinavia? Thanks all, for your interest and feedback.Of course it is possible that I am wrong, but I think that the chances that I am right about this are very high. My mum knew nothing about PMR till I got it, and even then didn't know any details and definitely knew nothing of GCA at all. So when she was describing my gran's illness in detail, she didn't realise she was actually describing ALL the classic symptoms of temporal arteritis. After all, PMR is essentially a clinical diagnosis, based on symptoms and groups of symptoms - as we know the laboratory does not play a major role in diagnosis. Even an artery biopsy in arteritis is not entirely reliable.

Not that any of it matters really, except that it brings the possibility of complications of PMR closer to home for me and more real. I had seriously considered not taking pred, at some stage early on, because of fears about the drug, but now I really feel it's important to treat this PMR, mainly because of the possibility of complications.

Reni, yes, Germany is definitely close enough! I have read time and time again about PMR that it is most frequently found in white women of northern european descent. How far north exactly I don't know, but one article specifically mentioned white women of scandinavian descent in particular. Now I don't know if that means a genetic thing or an environmental thing. In my case, I was born in a totally different environment to my grandmother, so must be genetic I guess.
Chico,

I've often wondered about that, too - whether it meant a genetic or environmental thing. The articles weren't too clear on that, or maybe I just don't understand. I'm glad you've decided to stick with the prednisone. We'd hate for you to get anything more serious than the PMR, and the GCA definitely sounds scary if not treated promptly.

Take care, and I hope you are feeling all right.

Reni
Chico,
It seems I read i that aricle or another like it that it is "northern, darker
climates". What is it like in your part of NZ? Maine is certainly a dark, gray,
cold climate. And Germany DEFINATELY fits that!

There i also a high incidence of MS in Maine and I have heard the same
about that horrible disease.
pgrChico,

Thank you so much for the story about your grandmother, you have given
me a model. When the tide goes out and there are only barnecly rocks to
walk on, I will think of her and what she went through and I will endure also
until the tide comes back in with relief. And when the tide goes out again, I
will think of her and have strength.

a heartful thanks,

Libeth

Chico.....what a heartbreaking story and what a wonderful grandmother you had.  Poor dear, she really did suffer and it does sound like PMR.

One of the first articles I read on PMR said it was heredity and mostly women of northern European descent were diagnosed with it.

My grandparents on my mother's side both came from Schleswig Holstein providence in Germany, which borders Denmark.  Just two years ago, I found out my great grandfather's first name was Andreas.  So at the time, I thought that his mother, my great great grandmother was probably from Denmark and named her little boy with a Danish name.

Can you imagine the pain those generations must have went through.  My heart really goes out to them.  I also read an article that there is a county in Minnesota where about 20% of the people have or have had PMR.  Minnesota was heavily settled by Scandanvians.

Thank you for your story.  I makes me appreciate my ancestors much more and I wonder how many poor souls suffered with PMR.  I wished I could have known them.   Mary

Chico, your story about your grandmother has deeply touched many of
us. As much as I complain about pred I am thankful there is a treatment.
She must have lived in misery much of the time yet bravely persevered. It
is a model for me too.
I too have Scandanavian ancestory and live in a gray, cold climate.
I often question the contention that pmr leaves no ill effects on the body.
I have read that pmr burns itself in a few years with no lasting damage
except from the trearment. But it doesn't seem logical to me that having
widespread inflammation for years can be harmless.
I recently reconnected with an old friend whose mother had pmr
undiagnosed for a number of years. She progressively deteriorated until
my friend brought her mom to live with her in a different city where she
was finally dxed. But by then she needed such high doses of pred to
function at all that the side effects were intolerable. The mother passed
away in a couple of years. I don't the cause.
Point being, I will take my evil pred until I don't need it and I'm sure I'll
keep complaining too.

Thanks to everyone again. This forum is so valuable for learning and
venting.

Keep smiling,
GeralynHi again all. Interesting that there are a few of us with the northern euro ancestry. About where we live now, I don't know if that would have any relationship to whether or not we develop PMR. My grandmother certainly spent the first half of her life in the cold northern climes, short summer, long winter etc. But I have lived all my life in sunny temperate New Zealand, most of it in the northern part where it is warm and sunny with long hot summers. I think it must be in the genes!
I think my gran's PMR did burn out because in later years she did not complain about that sort of pain anymore, although she was never the same woman and her brain was damaged by the stroke of course, as well as some physical disabilities from it. Just goes to show, that the quacks were dead wrong in saying she had "rheumatism" and "arthritis of the skull", cos if she had, it would not have just gone away, it would have stayed all her life, probably getting worse. Whereas her illness was a definite systemic one with a start and a finish, although it lasted a number of years altogether. By the way, has anyone ever heard of "arthritis of the skull"??? I know the skull has sort of joints, but they are not moving joints! That's sad and wrong that your friend's mother should have been undiagnosed, Geralyn, not in this day and age!

Chico/All,

My father was from Finland (100% Finnish) and my mother was Sweedish and German.  My parents are both deceased and I haven't asked any of the relatives anything about PMR symptoms but I will.

Chico you mentioned that your gran didn't complain in later years about pmr type pain.  I hope it went away for her, and she wasn't just being brave and not complaining as she got older.  My mother was that way. She didn't have PMR, but had other health problems and I remember finding her crying quietly when she thought nobody was around due to extreme pain. I always called her a "pioneer woman" because she was so strong. I think she just got tired of complaining and felt the pain was something she'd have to deal with and tried to get used to it. I of course would take her to the ER when I found her like that and they would ease the pain for her temporarily.

Anyway...you story is so touching for us who have PMR.  The genes connection is a very interesting part of it all.

Take care, Kathy

 

Kathy, with parentage like that you are a sitting duck for PMR! Sorry about the weak joke old duck, I know it's not a funny business I am so touched by the strength of our matriarchs! They suffered in ways i
hope none of us ever have to, My mother was 1 of 6 girls; there are only 2
left now. My grandmother was from what was probably Poland at the time...
somewhere among the constantly changing borders. I plan to call my aunt
this weekend and ask about some of these symptoms.

Hope all are feeling ok... Chico, hope your mom is doing better... get rest all
and ake care of yurselves!
pgrSpeaking of cold gray climates, what time of the year did most of your start to hurt.  I started in mid-August and it was one of the hottest weeks of the year in 2006.   MaryMary,

I started to hurt in July. Not too hot here in Oregon at that time.

Reni
I started in June... the transition time from gray cold rain to summer here
pgrAugust.....and I am from northern european decent aswell. (Dutch)I am Swedish from both sides of the family, was born in the Pacific
Northwest and have lived here most of my life. I have three friends who
have MS, who also were born in the Northwest. I understand the incidence
of MS is high in the Northwest, and that seems possibly to be true of MPR.      
That Northern European heritage looks more and more like a factor. Which
could be attached to dark, cold climates. What research is being done
about, does anyone know?

Curious, Libeth

I started suffering symptoms in the summer, july-aug of 2005.  Funny how many of us started in the summer months.  It's not too hot here in Oregon but it was hot enough.

Kathy

I had odd random symptoms over quite a few months, and was miserable, cold, fatigued and unwell over the previous winter, but not with PMR pain, It all came together, with pain and stiffness in late summer (March/April this year). ie my autumn is your spring.

Re the weather etc. I think that that it works like this (just guessing!): We INHERIT the genes of some sort of immune system abnormality. This genetic thing is more prevalent in the gene pool that originated in northern europe. Even if we are several generations down the track, living in a completely different place to northern europe, we still have the gene, we still develop the autoimmune disorder which makes us susceptible to PMR and/or GCA. Some people, who carry the gene (like our parents, other relatives) may never get PMR. They may, instead get another form of autoimmune disease - rheumatoid arthritis for example. But some of us will get PMR, thanks to our great great great great granny who married into a family with that genetic abnormality (of course we don't know if its carried down the male or female line, or both). So we have no idea this will happen to us, till along comes a TRIGGER - could be an infection, a vaccination, virus or whatever. This trigger does not cause PMR, just triggers its development, in the same way that certain foods will trigger migraine or asthma. The body is already programmed to have PMR, migraine or asthma, it just waits for a trigger. Very well thought out , Chico. It makes scientific sense as well. Thank you
for being the calm head that thinks it throughChico,

What a great analysis!    I have been thinking along those same lines. The
idea of a trigger really rings true to me. The postings seem to show
people who are achievers, doers, goal oriented, always wanting to do
more, "mind" is in control and "body" goes along with it as long as
possible until it can't anymore. Years ago I heard someone described as
having a Cadilac mind and a Ford body. It struck me then and have never
forgotten it. Maybe because it was fortelling my future! I also have
some thoughts about why PMR strikes more women than men. In
families, the woman is the one who takes care of everybody else; no
matter how she may feel, she is there to patch up everyone else's
wounds. She is not thought of as being in need herself, and she does not
see herself in that light either, so she keeps going no matter what.
Interestingly, my family has not been especially helpful dealing with this
"affliction". Perhaps that is a form of denial, or simply that they cannot
see me as being in need. Thank God for for all of you!

LibethLibeth,

That is kind of sad that your family isn't being helpful dealing with your PMR. I suppose it is hard for family to switch gears when the one who has being caring for them all the time suddenly needs the care. Or maybe they look at you and see that you look fine on the outside and so just can't understand the pain. I used to say I wouldn't wish this on anyone, but just once in a while I did want someone close to me to experience it for a day or two. I am going to apologize in advance if this is a long post but i have a few
things to respond to/talk about that are related to this thread...

Libeth, I also am sorry your family hasn't been able to be supportive...
Thinking about myself and my familes response, I wonder how much I
contribute when they are NOT supportive (my husband is MOST of the
time, but not always, kids get it less, the older (22) does more than the
younger (17)) by trying to just do what I have always done & not sayng to
them thaT I hurt or can't do what ever at that time. Fits the whole woman
theory thing huh?

Now back to the Gramma theme: I just got home from the day with my
cousins - My mother was one of 6 girls. All married and had kids and
since my grandfather died before all but the 1st grandchild was born, we
were really a matriarchy run by Gram. We spent all the weekends together
and our cousins were our friends. Now I am lucky that 3 of the girl
cousins, my sister and myself get together every other month or so... we
are very close. It was worth the 2 hour drive in each direction that I may
pay for tomorrow to be with all of them today.

All of our mothers have passed (there are still 2 aunts alive). I asked what
people remembered about PMR type symptoms - the only 1 who had
anything that could have been PMR that we are aware of was MY mother.
She couldn't get going in the morning, had trouble putting shirts on and
couldn't really reach her arms up in her later years (early 80's) She also
had osrteo-arthritis & scoliosis tho... so who knows. I do plan to call my
aunt tomorrow since no one could really remember much and I want the
info from the aunts while they are alive.

So not much info there, but thought I would share...
Hope you all had a good day!
pgr
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