Relapse

I really appreciate your input, both your experience and your calm. I am struggling with what feels like grief about this-- and feeling like I did something wrong when in fact I was following the slow titration down from Pred that was dictated-- and had not one clue that my body wasn't on board with this plan! I pay close attention to my body and do not feel I was overdoing, just doing. I need to get beyond the emotion and the fear and chart a course. Thank you.

Not your fault (never mind your body) - but inflexible medical advice that doesn't bear in mind all patients are different. Different in PMR and different in response to pred.

And of course you are struggling with grief. This is a bereavement - you have lost your "me" that you have lived with all your life. We should all have access to counselling - but that ain't going to happen any time soon! So we do the best we can in the forums and support groups.

Haha. I am a psychotherapist!! So many things in life are more interesting to learn about than to live through. Pain is one of them. Greatly overrated.

I have been doing some reading and writing about chronic pain in which I am thinking about it in three dimensions: the sensation itself, the emotions, and "the story we tell ourselves" about what this means, about our imperfection, our future, whatever. With PMR, generally if you are not moving, you don't hurt. (well, I guess I should say that has been my experience). That is a blessing. Often the emotion and the story are the greater part of the challenge. Because the mind is always moving....

I decided to go back up to 10 mg Prednisone today and feel settled in that decision. What do you think is a reasonable time to stay at that dose (assuming it brings relief) in this second go round? I honestly don't remember how long I was there the first time; I'd have to check my old calendar. Thank you.

"With PMR, generally if you are not moving, you don't hurt. "

Well sort of - but there is also the aspect of myogelosis where the muscles "gel" when you are inactive and then you have to get moving again! It's a balancing act - move enough to help avoid getting so stiff and not enough to cause the muscular pain due to overdoing things.

We say a lot that you improve with PMR when you accept the change and stop fighting against it. Fighting is a waste of energy that can be far better devoted to other things. One lady who fought decided she was going to be a "Precious Princess" and not do ANYTHING that she knew caused pain. And she stuck to it. Two years on she is off pred. Coincidence? I don't think so.

Once the symptoms are cleared with the higher dose and you feel as well as it gets then you could try a 1/2mg reduction spread over a few weeks as described in the "dead slow and nearly stop" reduction plan. If that works, try the next 1/2mg. That is the only way to go - get comfortable and then try tiny reductions and slowly. It is amazing how far you can get with that approach.

After several days at the increased dose of 10 mg. I am not noticing much improvement. I am not sure how long one must “wait” before things improve. Relief was immediate with my first encounter with the disorder. So, I have a call in to my rheumatologist and am also considering an injection in my trochanter.

Looking ahead to when I am feeling better (!) and in the spirit of broadening my understanding of some aspects of PMR management beyond the gospel of Prednisone, I have a few questions: 

1)    The role of exercise. I get that one can overdo. When first diagnosed, my rheumatologist said I couldn’t not hurt my muscles and to be guided by my comfort level. Is that a true statement? And how does one discern from overdoing vs. the “good tired” one gets from challenging your muscles? (thinking about weight lifting here as an example)

I am wondering about the value of stretching also. My adductors and hip flexors are super tight. Does it help to try and stretch them even if it is uncomfortable? Are there for instance specific yoga poses that might be beneficial?

 2)    Is it okay to take Tylenol along with Prednisone for pain relief?

 3)    Has anyone found other supplements helpful? Not in lieu of Prednisone but in a supportive role? I have read about natural glucocorticoids, pantethine at 600 mg/day, Vitamin C 1-2 g (which my stomach wouldn’t tolerate), Vitamin B6, etc. Curcumin?

4)    Is anyone convinced that there are dietary considerations that worsen or improve the condition?

I want to make sure that in addition to the Prednisone, I am doing everything I can possibly do to support the best path to healing. All replies invited. Thank you for your generosity in sharing what you have learned. Gail

 

It is possible that your PMR had gone into remission and that was what allowed you to get so low - and this is more a relapse than merely a flare (if you see the difference). People who have had PMR twice say their experiences were totally different second time around. It may make more sense to go back to 15mg and start properly again - providing that dose works. 10mg would rarely be expected to work in a new patient.

Exercise - PMR makes your muscles intolerant of acute exercise. They don't tell you that you have done too much and take far longer to recover - where normally your post-exercise stiffness might last a day or so, with PMR it can last a week or more and if you really have overdone it then you might be in discomfort for weeks. Some experts suspect that (relatively at least) extreme physical exertion can even be the trigger. 

Any activity that involves repeated or sustained actions - like weights or step - is particularly bad in PMR. If you are going to try them - very light weights and only 3 reps each set, and rest between to recover. The blood flow to the muscles is compromised - not enough oxygen supplied and poor removal of waste products. In PMR I doubt there is any "good tired". I did very adapted Iyegha yoga and found it, along with Pilates and gentle aquaaerobics, helped me keep relatively mobile during the 5 years I wasn't on pred (not from choice I hasten to add).

Tylenol - is acetinamophen? The most recent views are it doesn't do much more for anything than placebo. If it works for you - use it in moderation. It is quite easy to overdose, overdose kills your liver! It does help some people - others find no "ordinary" pain killer does much for PMR muscle pain.

I - and others - have tried supplements with little effect. Be careful what you use and always check with a pharmacist (not the counter staff) that it is OK with whatever prescription drugs or other supplements you are taking. Others swear they have recovered due to this supplement or that supplement - PMR goes into remission anyway for most people at some point. There are no controlled studies backing anything. The same with diet. Many find that an antiinflammatory diet helps them and they notice when they have missed their 3 servings of oily fish - others don't. A couple of people have claimed the very strict vegan diet they adopted "cured" them - again, it may have been on its way into remission anyway. 

One lady decided a couple of years ago she would become a "Precious Princess" and did nothing that she knew aggravated the PMR and the hip/bum/thigh pain she had (probably trochaneteric bursitis as that was what caused my identical problems). She has steadily reduced her pred and has been off for a few months now. Others have found Bowen therapy has dealt with specific pains and then probably allowed management of the rest with a lower dose of pred.

But REST and pacing yourself is key. Google the spoons theory by Christina Miseriando - and manage your spoons well!

I guess I am not sure about the distinction between relapse and flare....

So what are people doing for cardio fitness? Cycling? Swimming? 

I can't speak to all of your questions, but I will address the exercise issue. I've always been extremely active (cycling, hiking, kayaking, skiing, etc.), so when PMR hit, it turned my life upside down. I still have the muscle strength and capability to do anything I want, which can be a problem. On a good day, I feel so great that I NEED to get out and do something, but even though I can go for a hike or go paddling, if I don't make it a very appreviated time period & don't try to go fast or hard, I will be sore the next day way out of proportion to what I did. The first time this happened to me, my muscles felt like I had gone to the gym and worked out hard after never having worked out in my life. Very depressing for a naturally active and strong person. For now, I mostly go for my daily 3 mi. walk, which my body tolerates quite well now, but at first it didn't...I could barely walk down the street in our neighborhood. Hopefully, someday I'll be able to get my life back, but at least I can get outside now, which I need for my mental health!

A flare is usually when the current episode of PMR becomes too much for the dose of pred you are on. The most common cause of a flare is reducing too far or too fast but the underlying autoimmune cause of PMR probably doesn't run a smooth course of activity - it waxes and wanes over time. You might reduce to a dose at a time it is at a low point but then it becomes more active and symptoms recur at that dose.

In a relapse, the autoimmune activity has at somepoint burned out and gone into remission. There are no symptoms because there is no disease activity. But it is only dormant and can reactivate at some point. Some people who have had second episodes have said they feel they didn't look after themselves well enough, overdid things or became stressed and it appeared again.

Cardio-fitness? Many people with PMR are delighted if they can walk to the corner shop and back! Seriously - cardio fitness is the least of your problems at the moment!

I seen on here  you can get a DVD orCD also a booklet. About PMR

How can I get them living in the USA?

Contact the PMRGCAUK northeast support site - there is a direct link in this post

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and they will provide the information - it has been posted on here recently by someone from that group but I can't remember the exact details offhand.

I also had a relapse after Rhuemy told me to cease the one Pred I was on.Three weeks later stiff arms ,legs,shoulders Tec,started taking 2preds daily which helped but have uped. to 3 for total comfort.Have just had Esr blood test so hopefully going down. Will stay on 3 for a month then taper down again. Tapering very very slowly tho. I have some bowling friends who have also been told to stop Pred as blood tests were ok and they too are in pain again. We know are own bodies and Docs try to help but they obviously haven't had Pmr. Good luck they do tell us it will go away but after two years one begins to wonder .

When will it sink in to the doctors that there is a good reason for the blood tests being normal: it is because you are taking enough pred to manage the inflammation! 

Beatrice - after 10 years I still have PMR symptoms if I reduce the pred too far. I'd had it for 5 years before I ever got to try pred and it hadn't gone away in that time!

Hi Vicki and Gail,

Vicki, my story is similar to yours, not much skiing the few years pre PMR but walking, hiking and biking was a very important part of my existence.  When I was at 4mg I was able to go for a 7 to 10k hike (with a break half way for a bite to eat by the river) but would need to rest the following day.  Short walks to pick up a few vegs I could handle daily.

I'm now at 9mg after a nasty flare and find that doing a bit of housework, going for a walk for a few blocks and making a meal poops me out😴😴.  I don't remember ever being as tired as I am this time around.  Hoping it will be better as I decrease😕

Hopefully, one day (sooner than later) we'll get our lives back. At least be able to be active enough to be in good health.  Patience and pred are our closest friends till then.

Hugs,  Diana🌸

 

Totally agree with you Eileen,and wonder what the answer to all our problems are. We are each so different with all our symptoms yet all have Pmr. To keep comfortable on the right preds dose is important. This forum is so good for us all.