Possible immune system "PMR algorithm: ...method to the madness?
Posted , 15 users are following.
I'm tempted to just leave my title there and wait for replies, to see if anyone here might be like-minded in trying to understand the oddities of their perhaps ever-changing PMR symptoms.
Relating this to my own symptoms, from the very first days, the condition mostly spread to an increasing number of joints, not to mention the fatigue, ear-aches, head-aches and later, my palms and the soles of my feet.
With prednisone, most symptoms decreased sharply, but as I was on a fast monthly taper regimen of 1mg per month, so symptoms reappeared within six months and new symptoms I hadn't had then also appeared.
Years go by, and I have long since taken control of my dosage based on my symptoms "in real time".
I also noted big seasonal changes in my dosage requirement to the tune of ~100% (worse in Summer, better in Winter, and which persists to this day all of five years later).
But it was the "wandering" characteristic of PMR symptoms which caught my attention, symptoms that didn't appear to be related to any localized stress where the symptoms appeared. It seemed to me that at times the PMR "attack" would mostly leave one area of my body and move to a different area of my body, instead of the overall symptom levels rising and falling in the different areas together.
Now I have posted here periodically as I got down to 2mg/day in Winter, only then having to again use up to 5mg/day when the summer months came.
To be sure, there has been a long-term trend toward lower dosages, though with the past two years being almost the same (but for the fact that I managed to spare myself the Summer flare-up with more-timely higher dosing.
This Winter has now been quite different though. I'd had a lengthy respiratory infection around the holiday season, then a few weeks lapse and then a second, brief, and very different batch of respiratory symptoms with a brief slight fever added in. Not normal for me, but not so unusual either.
Then just three weeks ago, another prolonged nose/throat/airway infection that really lingered despite causing no really severe symptoms such as a plugged sinus or noticeable fever, though accompanied by a nasty case of pink-eye infection towards the end of it's run.
But now the funny thing is that, after cutting my pred intake sharply in order to boost my immune response to the bugs, I suddenly find myself cured of the infections AND taking no prednisone at all.
It's been only ten days with no pred, but my energy levels reflect no more supression of my adrenals, and my skeletal symptoms are almost nil, very tolerable and no flaring as of yet.
So the question I leave here is whether the immune system perhaps needs some sort of challenging distraction in order for it to focus on the distraction and finally restore pre-PMR order when the infection has been conquered(?).
Needless to say, I am extremely optimistic at this point, and hoping my story might give reason for optimism among you all!
1 like, 14 replies
jo66120 dan38655
Posted
DAN, when you got the infections did you take any antibiotics?
dan38655 jo66120
Posted
Good question, jo.
The fortunate answer is that I did not. I was prescribed (and nearly started) a 10-day regimen of penicillin that was prescribed to me during the last days of my first (of three) infections, but held off as I was beginning to see the "cold" symptoms tapering off.
Now for the eye infection, I was using antibiotic drops in my eyes (one infected after the other) for two weeks, just ended. I did a major cleaning and wash of all linens as these conjunctivitis bugs are known to be contageous and can re-infect if the patient is re-exposed.
I am feeling healthy this week, back to bike riding even though the weather here has been mostly terrible.
jo66120 dan38655
Posted
Dan, thanks, I am so happy for you and I hope that the PMR is gone and never comes back. Keep in touch and let us know how you are doing.
Silver49 dan38655
Posted
I find that very interesting as I would be tempted to do the same but fear the consequences. Just yesterday I was querying what has happened to my immune system. I had a virus a few weeks ago but still have the residual cough. It is something which many people here have had for weeks so I am not alone. It appears to go away and then comes back. Two days ago the cough was worse than ever and I was a bit fevered yesterday. Today I have woken with a cold but feel better overall. I am on 2mgs at present and tried 1.5 but it was a very busy time and I had to go back to 2. May I ask what you were on when you stopped? I think it may have been 2mgs from what I have read, assuming it is winter with you. I am hoping you will keep us posted as it would be so helpful. My energy levels are good as I have lacked sleep at times and still manage to cope and complete tasks.
dan38655 Silver49
Posted
I was taking 2mg per day, but it was over the course of two months that I finally ended up needing no pred in the morning.
I managed to run five miles today, first time in a long time. I ran 2-1/2 miles to a shopping center where I had to wait out a rain shower before running home. I feel surprisingly good compared to last year when such an effort would have left me feeling quite sore afterward.
My hip joints have been doing very good for the last 18 months, it was mainly my shoulders and my energy level for which I had to take pred. But the years before that the bursitis/arthritis really affected my hip joints especially, and my shoulders, thumb joints, etc.
By the way, I am 58 years old.
Silver49 dan38655
Posted
Thank you, Dan. You have certainly achieved a lot and made great strides in your fitness regime........pun unintentional. I have been on 2 mg for about two months. Although I am currently experiencing a cold and cough I have no extra pain and do not waken up with pain. Your pain levels sounded similar to how mine are now as it's shoulder and neck pain with no hip pain. My energy levels are good. I think I'll start reducing again rather can coming off completely. I am in my 70's though I don't feel like it. My fitness levels are markedly reduced as before PMR I could swim a mile and even if I missed it for a while I was able to get back to that level very quickly. I am going to build up my walking regime and will get back to swimming when my cold has gone. I wish you continued progress with a non Pred life and hope that this is the end of steroids for you.
Harrie4 dan38655
Posted
What an intriguing journey, Dan! Thx for recounting in such detail.
I cant help but wonder if there is an emotional component to the PMR seeming to have relented in your body. Strangely, I sense a similar kind of letting go -- like the PMR IS relaxing its claws. The onset and flares that I have had are directly related to periods of pretty deep stress in which I nonetheless had to ensure that 'the show' went on. Its taken about 2 years to rebuild my physical and emotional base to a level of sturdiness I can continue to learn and grow from -- just the right amount of new-stuff challenge and the attendant (good) stress to keep me on my toes. As if Im reaching the waning part of a long and difficult transition.
Our immune systems are so bound up with our amygdalas / fight or flight / all that stuff. When we develop healthy ways to live with stress and uncertainty, that too must percolate throughout our physical selves and positively impact our symptoms.
Anyway, well done!! Keep on truckin' and bike riding!
nick67069 dan38655
Posted
Hi Dan, glad that you have come out at the other end of the PMR tunnel 😃. I was wondering what happened to you, since you did not post for a long time. I hope that you are still active and biking, especially now that spring is just around the corner.
I have experienced "roaming PMR" over past several years and it seems that PMR sniffs out weak muscles (or joints) and moves in. How ever I have not seen/experienced seasonality in PMR myself.
Currently at 2.5mg, and exercising actively ( MTB biking/swimming). Hope one day to join "zero club" too.
EileenH dan38655
Posted
Brilliant news - do hope it lasts.
As for stress - I thought I was doing pretty well until the beginning of last year when it became apparent that the B-word was going to be a rather rough journey. My healthcare cover at present is reciprocal on the basis of being an EU pensioner. As of 29th March I may not have any cover and we were "told" (i.e. it was mentioned in the media) about xmastime we should look into insurance where we lived or private cover. Well, private cover isn't going to be an option since I have pre-existing conditions although OH is already an Italian pensioner, he's covered by that!!! We didn't even know until then whether we would be entitled to remain here without a lot of paperwork but Italy finally said we could stay whatever happened just about xmas - again, we haven't had any official notification from anyone. We are lucky - we can afford to pay for state cover ourselves (now we know it is an option) but there are many who aren't in that position. UK pensions don't go far here! But nevertheless I have been in an increasing flare since last spring - probably the worst I have had. Is stress a factor in PMR??? I'll say so!
Anhaga EileenH
Posted
😥 Oh dear, things really have been piling on for you lately. Let's hope that springtime brings brighter days in all ways. 🍀
nick67069 EileenH
Posted
it might be worth while to check what would it take to become "resident". Some countries only require for pensioner to have proof of the income. Changing legal status may make getting health coverage easier.
EileenH nick67069
Posted
I am "resident", the first thing we did after the vote was make sure we had our permanent residency papers which we hadn't needed as EU citizens.
You still have to pay contributions until you are a pensioner - and as far as Italy is concerned that is at 67 for me. That isn't until August and I don't get my pension until September 1st. when I will be covered by the Italian system, It has been the uncertainty about which form of the B-word will result and when that is such a pain - no deal makes us 3rd country citizens, the same as someone from Africa. Maydeal means there MIGHT be reciprocal rights, and then there is the blessed hope of NoB-word or an extension. But the authorities here don't know what to do either - they all still think it won't happen!! We do know that it takes a day to get it sorted, turn up, get papers with the cost, go to the Post Office and pay, show the proof of payment and you are put on the computer. At least they have joined up thinking when it comes to the tax and benefits systems - gone are the days of Italy being the basketcase of Europe - the UK took over that role!
dan38655
Posted
I'm just checking back to read all the replies and follow up on my own condition.
I've been taking 1/2mg/day these last couple of days, mainly as my general shoulders area felt a bit achy and my energy levels fall off 20 or so hours after my last dose of pred.
The timing was right for me to notice my energy level falling off sharply during today's bike ride, I came home feeling like it would be a good time to go to bed and maybe I should have, but for a visitor I was expecting. So now 2 hours after my 1/2mg dose I feel like I could stay up past midnight, and my shoulders feel fine.
Good hearing from Nick, Eileen and the other newer members. I continue to hope for good health to you all, as PMR is just one small part of our health picture.
@Silver49, I would expect that at a slightly higher dosage, strength would build due to greater exertion due to feeling better. At least that is how it has always worked for me!
@Harrie4, I did have a lot of stress when my pmr journey began, but I haven't been able to relate pmr symptoms to stress levels since then.
Nick, glad to hear that you are getting by on a low dosage these days.
Eileen, I hope that your health coverage resolves toward consistent coverage, and that you have no more flares!
I am soon to be heading into spring time and a change of season that always challenges my battle with pmr. Last year was better than the year before, so I am hopeful for further improvement.
dan38655
Posted
Following up here again, creeping up toward 1mg/day, which doesn't surprise me.
Shoulders and knuckles needing a little extra help now.
I'm just wondering what the springtime/summer dosage will need to be, it's always been around 2x higher, though this year is off to a very low-dosage start even compared to just last year (was roughly 2mg winter, 3-4mg summer).
I'm glad to report that even these very low dosages have controlled my seasonal allergies quite well for several years now.