Arthritis or Rheumatism or just inflammation
Posted , 14 users are following.
Can anyone tell me if PMR is arthritis or rheumatism? Or is it "just" inflammation? The reason that I ask is that I have never even had a suggestion of arthritis or rheumatism. It has not been in the family either. I got PMR overnight last year in November. I was 62 years old. Literally, one day I was doing Crossfit and doing all the things that I love and then ... BAM... the next day I was practically an invalid. I was even able to do various gymnastics and do head and handstands!
Even though I have PMR, believe me, I am very grateful for prednisone which has returned much of my "former" life back to me but at a slower pace. I am still puzzled how I got this diagnosis (which is correct) without any prior history of either arthritis or rheumatism.
0 likes, 27 replies
Rakanne marike57008
Posted
As it has rheumatica as the last word I presume it's a form of rheumatism. I do know its an auto immune disease and "they" don't know what causes it.
Guest marike57008
Posted
Hello Marike,
I guess welcome to the club? I'm new here also and everyone is so kind and supportive, you will be glad you came here.
I'm sure others with come in with more info that I can provide. It is an auto immune disorder which causes your auto immune system to attack the tendons of very particular joints in your body, and that starts the inflammatory process that blows the whole thing up.
I'm glad to hear that you are doing well on prednisone. You might want to read other posts on this board to get a good understanding of the prednisone treatment and, more importantly, when and how a proper wean should be tried.
marike57008 Guest
Posted
I'm not brand new. Just do not post a lot. I've already read most of what needs to be read. I started at 15 mg and am now on 10 mg. I understand life may throw curve balls again and that I may be in pain again, but I understand that in that case, I just need to up my dose to the previous level and try again. B
ut I'm comfortable and happy at the moment and for that, I celebrate. I remember all too well what immobility and pain was like!
Michdonn marike57008
Posted
marike, PMR is an autoimmune condition, research has not discovered what the cause or causes are. The condition causes blockage in cardiovascular system, vasculitis which causes the stiffness and pain. Poly - many, myalgis - muscles, rheumatica- inflammation, welcome to the club. I hope your journey is a short bump free experience. 🙂
nick67069 marike57008
Posted
It is a form of Vasculitis. when autoimmune system becomes hyperactive and attacks walls of blood vessels , causes inflammation and restricts blood flow to the muscles. I was training hard for triathlon when I first noticed PMR symptoms, but it was written off to too hard training and rest was recommended at first. It took 3 different doctors before I got preliminary diagnosis and referral to rheumatologist .
Prednisone reduces inflammation and thus restores blood flow to muscles, but it does not cure anything, Never the less it help us to get our life back. I hope that you went back to your training, I certainly did, but had to take it very slow, just like after serious injury.
Don;t bother with trying to understand why you got it... doctors don't know what causes it. It seems that combination of genetics tendencies, environment and stress and even some viruses can trigger autoimmune system response that ultimately causes condition of symptoms that we call PMR.
marike57008 nick67069
Posted
Thank you. I did stop Crossfit and I did stop training for a while until I felt that I could trust the Prednisone. Then I picked up running and yoga as I felt they were most helpful at the moment.
EileenH marike57008
Posted
It's neither - it is a vasculitis, inflammation of blood vessels, which leads to rheumatic symptoms. Traditionally it was diagnosed by rheumatologists because of the symptoms, and it was realised that GCA was related in some way. It wasn't until the 1960s that PMR got a name of its own as a defined illness, previously it had other names, the original was senile rheumatic gout, coined in 1880 byt bruce, a Scottish doctor.
It wasn't until technology provided the means of imaging the inflammation that it was realised what it affected, a lot of PMR symptoms are due to the soft tissues around the joints being involved, but it does not destroy joints like inflammatory arthritis does.
It is a disorder of the immune system - like rheumatoid arthritis or lupus - which makes the immune system unable to recognise the tissues of the body as self and it attacks them, leading to tissue damage and inflammation. Something sends the immune system haywire but no-one knows what and the disorder you are diagnosed with depends on which tissues are damaged as well as the antibodies that many be formed. If you have one autoimmune disorder you are more likely to be diagnosed as having another but I imagine a/i disease as being like a shop where the symptoms are stacked on the shelves. You arrive and the salesperson hands over a load of symptoms - and you leave to get a doctor to work out what to do. They attach a label depending on what they see - but that may not be all. Sometimes a symptom wasn't selected at the start but the shop sends it on and adds to the picture.
I envisage autoimmune disease as a wide spectrum, all related to each other and really what we have is not PMR, or GCA, or lupus, or one or other vasculitis or inflammatory arthritis but a mixture which should be called EileenH disease or nickdisease or marikedisease because they are individual to us. All they can do currently is manage the symptoms - so treatment means finding the drugs that do that best with the fewest adverse effects. And it isn't easy - even though "pure" PMR and GCA are managed best with pred, some people have other things going on that pred doesn't work ideally for. They are finding biologics that work for some for some time - but not everyone and not always permanently - which suggests the diseases change in detail although the general picture is similar.
But it is better now than it was even 10 years ago - and I bet if you think back you will remember a grandparent or aunt or uncle who had "rheumaticks" - which was almost certainly PMR. But when we were children there wasn't a lot of option, steroids were only invented in the late 1940s. It is said that patients in wheelchairs were given pred and they got up and walked. They probably had what we now call PMR.
marike57008 EileenH
Posted
Thank you.
Michdonn EileenH
Posted
Very good explanation Eileenh. The only thing you left out, named by Jewish doctors at Mount Sinai Hospital New York City and given a Greek name. Why? I guess we will never know . 🙂
EileenH Michdonn
Posted
Have you seen this?
https://www.mayoclinicproceedings.org/article/S0025-6196(11)61208-1/pdf
Michdonn EileenH
Posted
No Eileenh I had not, that is a very complete history. I do not understand, how the other article I read could have been so wrong. Thank you once again. 🙂
andre68439 marike57008
Posted
Hi Marike. You got a lot of good information from the group. You seem to be wondering how or why you got this since your family does not have a history of rheumatism disorders. This PMR was once called the "Vikings Disease" because it is most prevalent in northern Europe particularly the Scandinavian countries. Through migration the DNA spread around the world and again can be found in countries and regions where north Europeans have settled. So it is likely you got it from your ancestor's DNA. I was born in Amsterdam.
Several on here have remarked about extreme training before the onset of PMR . That was also my case as I was training hard for a century charity bike ride (100 miles in a day) requiring me to ride 30 to 60 miles several times a week in the hot South Florida 91 degree heat. I was 60 at the time. Also reported are onset of PMR after an event that slammed the immune system, stress, sickness, surgery, and who knows maybe extreme exercise? I was one of the lucky ones who cleared up with a Prednisone regimen after about 20 months, and went on to complete 5 century rides up to my 64th birthday. So don't be discouraged that your passion for activity will be curtailed; just modify it to be realistic that we are not 30 years old anymore as my wife repeatedly reminds me. That said, now that I know more about PMR I may have been playing with fire by doing more century rides. I did have a relapse 10 years later following a severe head infection (ears, eyes, nasal) which presented after an airplane landing forced my head cold into my ears. Perhaps again a blow to the immune system.
A big lesson I learned from the people in this group was to look at it as an inflammatory condition that is calmed or masked with the Prednisone but not cured. The PMR will run its course and the tapering of Prednisone ideally matches the declining PMR inflammation with a proportionate decline in Prednisone. Best case 18 months, worse case over 10 years, average about 5 years. I personally think the duration can also be affected by your baseline health, since many of the long term sufferers seem to have other significant health conditions. I wish you the best on this journey. Good Luck
EileenH andre68439
Posted
I didn't have anything pre-PMR!! My cardiac problems are due to the autoimmune part of PMR but other than that and PMR I consider myself pretty healthy. Despite 15 years of PMR ...
marike57008 andre68439
Posted
Thank you for replying. I appreciate your answer. I think my worry was that when this is all over (PMR that is) that I would have arthritis or rheumatism for the rest of my life and these answers have relieved that worry. I am not born in Holland but both of my parents were from the Netherlands so you are correct in assuming that I have a high likelihood of having the genetic makeup. So far, other than being on Prednisone, I have been treating the inflammatory part of the disease by reverting to a Keto diet. My diet through much of my growing years and also into my adult life consisted of natural home grown foods, however, treats and yummies were also abundant. I cut down on treats etc a long time ago, but I still enjoyed many carbs. Now that I have reduced my carb intake, the PMR related pains and aches are much less. I am hoping that PMR will run its course within two years or so. Thank you for your encouragement 😃
nick67069 marike57008
Posted
I never noticed correlation between pain and cabs, including sweets. I thought that reducing carbs was done (at least here between PMR travelers ) for weight control. I have kept the same diet, and used exercise for weight control. I am now in my 4th year and down to 1.5mg. While my weight stayed the same, I feel that I have lost some muscle mass and thus became fatter. I have dexa scan coming in a next few days and I asked them to measure muscle/fat component as well. Will see how that turns out.
Michdonn nick67069
Posted
Nick, sugar, can also cause inflammation in the body. I eat an anti-inflammatory diet limiting most of my sugar intake to a piece or two of fruit.
nick67069 Michdonn
Posted
I understand people say that, but I* personally* did not experience pain from carbs or sugar. Trust me my teenage kid and I eat about the same amount of sweets but I tend to burn off most/all of it via endurance exercise. When I was tracking via app my walks, biking ans swimming I averaged 20000-25000 KCal/month, equivalent of burning 7-8 lb of fat... My long term sugar level HA1c is 5.8 and inflammation markers normal.**
EileenH nick67069
Posted
There are quite a few people on the HU forum who have commented on aches and pain, sometimes severe, after falling off their low carb wagon! One lady this week had eaten a single Belgian bun - and felt terrible the next day! She isn't alone!
nick67069 EileenH
Posted
yes I did read that, and again I am talking about my own experience. Life is too short to give up things we like, and for me, if it does not do any harm ( no pain) why shy from sweets. Again MY experience.
Note: just like going on keto diet is a shock for a system, if you don't eat carbs and all of a sudden take some, I am sure that body is just not ready for it.
EileenH nick67069
Posted
Exactly - which is why we usually emphasise low carb rather than keto and often suggest cutting down slowly not going cold turkey. And we do say sugar is pro-inflammatory but if someone can't change their way of eating and is happy enough with how they feel that's fine. But if you eat loads of sugar/simple carbs and gain weight or have pain that's a different matter ...
Michdonn EileenH
Posted
After eating normal diet for a few days minus sugar in January, I had a nice little flare. Back on anti-inflammatory diet, quick up and down with Prednisone and I was back on my DSNS taper. No more hiccups since; for me to live a normal active life I have to watch what goes in my mouth.
Guest Michdonn
Posted
Every body is different, mine is in Michdonn's camp of what I eat or don't eat can have a profound effect on how I feel both physically and mentally
A few years back I stopped eating anything white and was amazed that 30 lbs fell off and I felt good, never hungry and never sugar cravings
Now on high dose pred for GCA I need to get myself back in that zone. I have GCA and PMR and assume pred treatment will be long. I do not want to end up a diabetic or morbidly obese, so I am bit by bit cutting out the few white things that crept back in. I even need to limit fruit, which for me is essentially a bowl of sugar. I have a glucometer and check my glucose 2 times each day it is a great tool that tells me real time results of what my body is doing with what I feed it. Because I have MS, exercise is not a very good option for me to burn what I need to burn
Before being diagnosed with GCA and PMR in June, this spring I had ice cream cones on two occasions. Both times I woke the next day with screaming pain in both knees and shoulders.
Our bodies do talk to us, each with different languages. For me, my body tells me that what I eat is a very important part of my treatment plan. we each find the right place. First I will get the white stuff out then I will study and employ the anti-inflammatory diet.
Michdonn Guest
Posted
Angela, I agree if we listen to our bodies we be better off. I stopped reducing my Prednisone, if I had PMR pain and have able to manage my PMR much better. The same is true with my diet, I always trying to cheat a little, to see what I can get away and it come back and bites me. So to do things I want to I watch what I doing and lead a happy active life. I just think two years ago last month I was in a wheelchair. Live is good as I prepare for another ski season. 🙂
andre68439 EileenH
Posted
Eileen do you think any of these inflammatory reactions to diet changes may be related more to wheat proteins than just carbs? My friend pointed me to a number of research report summaries on line that really seem to indicate that the inflammatory affect of modern wheat proteins can impact more than the gut but actually affect rheumatic conditions among others. I have cut 90% of white bread, flour, cake, pasta , cookies out of my diet a while back. I really love the stuff but what I read was that it can be a low level inflammation that you are not even aware of as opposed to the strong allergic gluten reactions some people have.
EileenH andre68439
Posted
I don't eat wheat products, or if I do I make sure to limit them drastically. I don't THINK I am worse in terms of PMR when I do eat them but what I do know is I don't itch - which was why I eliminated wheat in the first place. I do occasionally eat spelt or kamut - ancient forms of wheat with which I am fine, as well as other gluten-containing grains. It is something in wheat starch that is the problem and it is thought to be very common. Even the NHS article about it says there are people - like me - who have a wheat problem BUT they are able to eat French bakery products: different flour and slow processed. The primary problem seems to be with the high speed processing used in factories to make bulk bread products. Long live sourdough - proper sourdough, not the factory imitation.
Michdonn andre68439
Posted
Hi Andre, my wife suffered from migraines for over 13 years she a couple of books changed her diet. First was gluten free, second refined sugar, plus organic and anti-inflammatory. Guess what no more migraines. She finally has her life back, she even talk about maybe skiing with me again. I don't think we have any idea how important the proper diet is and it may not be the same for everyone. 🙂
nick67069 Michdonn
Posted
I might have given totally wrong impression about my diet. My wife is wonderful cook and makes meal from fresh ingredient either from local farmers market or our own garden. When we buy veggies we know who grew it, because proud farmers put their name on the bundle, even if it is sold in local market. We do mostly eat rice, but bread and wheat products occasionally. However, all of us enjoy small desert after dinner. Can't give up everything in life! Thus far PMR has no issue with what I consume 😃.