War On PMR (Cont.): I'd like to talk to as many... - PMRGCAuk

PMRGCAuk

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War On PMR (Cont.)

LarryLeek profile image
13 Replies

I'd like to talk to as many peeps as I can find who have had PMR & are or have been in remission. I want to find out if there are any threads tying them together. Maybe theres something they have in common that they did or changed. Obviously the cure is right under OUR nose because it goes into remission according to reports, usually within 2 to 6 yrs. I want to rage WAR on this crippler & find a way to beat it permanently & MUCH faster than 2-6 yrs. 2-6 days would be more like it....

Thanks.

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LarryLeek profile image
LarryLeek
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13 Replies
SheffieldJane profile image
SheffieldJane

Sorry LarryLeek you aren’t going to like this, but the people who do best are not at war with this disease anymore. It seems to me to be about accepting the limitations that it imposes on us and in my case at least, looking for the learning in why I was felled by PMR. I have discovered a lot of things in the way I lived my life and thought about my worth that have led me here. It has been an opportunity to re-evaluate everything. “ Re-evaluate along the dotted line, you’ll see a million of them down on Heart Attack and Vine” quote from a Tom Waits song.

Patience and peace then it’ll get fed up and leave you - no sport here.

PMRpro profile image
PMRproAmbassador

I think you'll find that most people here at present have given up on waging war on PMR/GCA - because it doesn't work. And the ones who have got through to the other side and are still here certainly have. Most of them aren't here, they are getting on with living life.

Most people arrive angry and talking fighting talk - many say they won't take steroids because they are evil, dangerous, the devil's tictacs. Almost without exception they return within a few months having realised that acceptance is the name of the game and they are taking pred. That isn't giving in - it is being realistic and making the best of the cards you were dealt. For 95% of us it will go away, for a quarter maybe even in the optimistic 2 years that too many doctors preach about. But for the vast majority it is a journey of 4 to 6 years and one that leads to a lot of surprising results - like friends you have made you wouldn't have otherwise. You will learn a lot about yourself - and usually turn out a better and nicer person who lives life more fully than they did before.

You have to practice grace and accept you are where you are and then you can live well with the constraints of the disorder.

markbenjamin57 profile image
markbenjamin57

Greetings and Welcome Larry :-)

As one of us relatively few Lads with PMR I share your frustration. And, yes, it does feel like a Battle (or even War!) to try to Win, somehow. Wow, a cure within 2- 6 days? - if only things were so simple...!

As SheffieldJane says, the real challenge for many of us (especially when newly diagnosed?) with PMR is in accepting that we have a serious, sudden onset and mysterious, initially crippling Auto Immune illness which, unfortunately at the moment, has no clearly understood single Cause and for which there is currently no medically validated 'Cure' - only the typically advised 'management' of the condition with Steroids, for better or worse, until it hopefully goes into remission. As you say, this can be from 2 years (to best) to several years depending on the individual. Yes, it sucks... :-(

I think the hardest bit (especially psychologically?) for many previously fit, active and relatively young PMR sufferers is in learning to Roll With, and not to fight this complex health condition. Stress is one of many known possible triggers of, and exacerbation PMR symptoms. And, as many people report here, learning to adjust our Lifestyle and Pace our physical and Mental 'Load' are often Key to coping with this nasty illness at the same time as managing the symptoms with Steroids, good diet, relaxation etc.

All I can say is you're in good, Expert and trusted company here - and I'm sure you'll get plenty of responses to your Post. The Forum 'Aunties' PMRpro and DorsetLady are also worth listening to, even though they can be straight talkers sometimes, as I well-know!

Hope this helps and keep us posted

Best wishes

MB

LarryLeek profile image
LarryLeek

Thanks MB for your kind words. Yep I’ve heard from both PMRpro & DorsetLady. Wow controlling my stress is really going to be tough lol. As a senior bridge inspector & dealing w/ crooked contractors most of the time & also the fact that I’ve always had a short temper won’t make it any easier lol. I just came down w/ a cold, my 1st in 7 yrs. & that just magnifies the pain & sleepless nights. But I’ve alwa S been a fighter & I always will be. I will learn to accept my condition for sure, but the war I mentioned will be. thru research not fighting w/ the disease. I’ve already figured out that exercise can make it worse if not done in moderation & I’ve already started changing my diet. I just hope & pray that we ALL beat this crap, but I’ll always look for more answers. I was reading last night about. new drug they have come out w/ to fight GCA. I forget what a t (not turmeric) the article says it’s shown positive results but right now it’s still not approved by the FDA, BUT @ least it’s a step in the right direction. I will try to find the article & post it here.

markbenjamin57 profile image
markbenjamin57 in reply to LarryLeek

Good on you Larry! :-) Like you, I've always been fit, strong and active, and going down with PMR at age 57 was a shock to the system, physically and psychologically. Stressful or what? GGRRRR!!!!

Good to hear that your 'fight' with PMR is through research and knowledge (not denial)! :-D And, Yep, learning to pace yourself is important too (although easier said than done for an Action Man).

On the positive side, there's ever-increasing awareness of PMR and similar AI illnesses through forums like this, and that in-turn brings more research funding and breakthroughs re. possible causes and cures. Fingers crossed one day this will be an easily curable illness...

So, keep up the good work and keep us posted. And.. don't forget to have a therapeutic laugh or two along the way. We have a lot of fun here in between talking about the tough bits! ;-)

MB :-)

PMRpro profile image
PMRproAmbassador in reply to LarryLeek

Then you were reading out of date info. The biologic Tocilizumab/Actemra has been approved by the FDA, first giving it breakthrough drug status for GCA and now for GCA generally since last year. Some insurances will cover it, others won't. There are rheumies using it for PMR but I'm not sure how they get the reimbursement. It allows most people to get their pred dose down very quickly but not necessarily always to zero. If you use the search box at the top right of the page and type in ACtemra you will find links to a lot of posts about it.

But if you think pred is risky - the biologics aren't exactly M&Ms either.

LarryLeek profile image
LarryLeek in reply to PMRpro

Very cool PMRpro thankks for the tip.

redmulp1 profile image
redmulp1

Hi Larry,

Like you i was really annoyed to get this diagnosis, although 70 years i was pretty fit skiing cycling gardening etc, I think there must be a cause linking us, but i don:t know of any data base doing this, do you or anybody out there know, this pmr knocked me for six, I think stress is a big factor, I was mega stressed at the time and am still struggling with stress, Try and slow down the work, get your stress levels down, I am now going for a bike ride trying to get to 10 miles, are you doing anything like this, chin up.

PMRpro profile image
PMRproAmbassador in reply to redmulp1

There is no single cause of any autoimmune disorder. Various factors put stress on the immune system until eventually one is the straw that breaks the camel's back - and the immune system flips out. It is a culmination of a life-time of such stresses, physical, emotional, infection, trauma, environmental. At least in PMR we have had a life - many people develop a/i disorders in their teens and 20s. Some even as small children. Often leading to short lives of chronic illness. PMR at least does not kill us even if it is a pain in the butt.

LarryLeek profile image
LarryLeek in reply to redmulp1

No I’m not doing much exercise wise like I did for years b4 I contracted PMR, but I’m going to get bk. In it gradually. I’ve noticed from work that even the smallest activity causes additional pain & stiffness unlike b4. Its almost like the exercise aggravates the PMR even more.

markbenjamin57 profile image
markbenjamin57 in reply to LarryLeek

Yep Larry, with PMR we really have to slow down and accept that things have changed. Difficult, I know (!), but a case of adjusting our perceptions of what we can physically do now, compared with before PMR. It's not your fault - don't blame yourself for 'catching' a nasty health condition that's beyond your control.

Just to say: try to keep positive - and calm. It will help in your recovery on the PMR Journey ;-)

marigoldb profile image
marigoldb

Larry, I think patience is the name of the game with PMR. Times when I have been really fed up with side effects etc, I remind myself I am not in the middle of chemo, or terminally ill. That pulls me up!

I had it first time in early 50 years of age, in remission after 3 years or so for 18 years . It cane back as a consequence I think about a year after my husband suddenly died in 2013. Think it was 2015, not sure . Am down to 4mg daily now, and no pain from pmr, just fatigue when I try to do to much!

Best wishes

Hindags profile image
Hindags

My interpretation of your goal in your WAR on PMR is that you want find out by polling as many people as possible whether there is any secret to success in healing from PMR or at least helping it into remission. I think I'm doing ok, but don't consider myself to have any secrets.

I will share a bit of my operating assumptions in how I go about living with my PMR. I say MY PMR because everyone's PMR is a bit different.

I think there are two stages of this condition for me. The first has been about reducing active inflammation by taking steroids and giving the immune system time to re-regulate itself so it stops over reacting to stress and stops producing strong inflammatory reactions. This means to me that I have to create the right conditions for convalescence: diet, rest, minimal but consistent exercise. The latter is most problematical for me because it is so easy to exacerbate inflamed places and one does not want to alarm the immune system into an over- reaction.

The next is about the body adrenals coming back on board and healing the places where the effects of inflammation (and maybe also the steroid treatment) has caused damage to the our tissues.

I'm now at 7mg. (thank you PMRpro for you 38 day taper) so I'm not near the end of my journey. I am aware of waves of energy that come and go during the day. I am aware that at low energy my mood also drops and I get emotionally sensitive. I also am aware that for me, steady activity seems to be the best approach to dealing with these waves. I imagine myself telling my adrenals that they are needed, so please come back on board, like coaxing a seedling to sprout. (I also talk to my plants). I honestly don't know if this makes any sense. I can imagine that if the bottoming out gets any worse I might not be able to keep up the gentle momentum that I have found to be helpful in getting my energy back to a stable level.

As far as healing the effects of inflammation on ones tissues, I'm still confused. I think time will help and finding the right exercise program that I can follow and modify as needed. My mother, who lived to 100, used to say that everything takes at least two years. It was her way of saying we need patience. Toward the end of her life she complained from time to time that with everything taking two years to heal she might not live long enough. I don't know what she'd have said about PMR.

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