Pmr and cold, maybe bronchitis

Thank you. I will tough it out. My groins and thighs are stiff, but I suspect that’s from being so sedentary.  

My husband and his friends had bronchitis in early December; he (hubs) went to urgent care 3 times; they recommended over the counter stuff, no antibiotics.  He is fine now...took over 3 weeks.  I’ll think long and hard then before going back up to 6 1/2 mg. But will if any more pmr  symptoms appear.

Thank you so much. I’m just mad all over...about the cold.

Do the steroids suppress our immune system? Or do they reduce the inflammation?

i thought it was the other drugs - DMARDs? Methoxotrate? That suppress our over active immune systems?

Really interested to know

It is the steroid suppression of the inflammation that is important for relieving our symptoms - but they do also have an immunosuppressant effect through a different action on other cells. Like everything else it varies from person to person. Pred has never seemed to affect my immunity - I don't get more inections than I did before. OH gets humdingers of colds and I rarely catch them (thank goodness!!). Pred is also said to delay healing in wounds or injuries - hasn't made any difference to me at all, in fact the doctor was impressed by the speed with which a completely torn knee ligament repaired.I haven't had any problems with it since either - touch wood.

Thank you - as ever, no definitive answer with this disease/drug!

Bizarre that it's my first cough/cold since diagnosis, and there's been little benefit to my psoriasis

Are they sure it is PMR? If you have psoriasis a very likely contender for your symptoms is psoriatric arthritis. A few of us had rheumies desperate to diagnose us with that despite never having had any sign of psoriasis in our lives and typical PMR symptoms.

I definitely had more colds the first winter I was on pred (as any cold was more than the none I'd had for years).  The second winter I think I had a couple, plus a bout of some stomach bug which I hadn't had any for decades, so assume this was just one of those things.  But so far this third winter I've already I've had two colds.  I checked my diary, the first one started exactly one month after the second.  And this has not happened to me since I had toddlers, little germ factories that they are.  I feel generally all over not as strong or as well as I used to.  In fact I'd say my overall sense of physical well being is the worst it has ever been in my life, undiagnosed PMR year included.  Do I blame this on pred?  Possibly, in fact more likely probably.  

This is certainly true for me...feeling unwell since the pred.  But I’ve had colds, bronchitis, tonsillitis, bad bouts, every winter my whole life.  Used up all my sick days at work for these beasts. One time a doc said “when you get a cold, you’re out for 3 weeks, aren’t you?” Yep, just about always.  And yes, my sense of well-being is that I’m not ok.  But I plan to rebound...you?

Well, Twopies, the thing is I've been very resistant to getting anything for years and years, really ever since the kids graduated from nursery school, although I worked in a public service job, a children's library, for nearly twenty years.  It's just since I had to increase my dose of pred to deal with a flare.  Last year when I was at 1.5 I felt so well, really as normal as I ever have, except for low stamina when it came to activities, I tired easily.  I hoped I was in true remission, and even my energy was coming back.  But the last couple of months I've felt kind of wretched, and maybe it's just getting older, but I don't like it.  And maybe it's the PMR, but I don't recall this kind of over all misery before.  I would hurt when I started doing things, but once I got rolling I'd be fine.  Not so nowadays.  I feel like all my muscles are getting so weak and I guess I'm getting a bit depressed about it.  This morning our church  had a special early levee after service, ending a year of celebrating 200 years of our parish, and I couldn't even face the smoked salmon, etc, refreshments, or  summon the energy required to schmooze, so I left hubby behind to do his chatty thing, and walked home.  But it was very nice of one of the clergy to catch me before I left and invite me to join the book club, so I think I'll do that.  I just feel so very old, and it doesn't help when people say age is a state of mind in other words it's my fault I feel this way and I should just brighten up and have a more youthful outlook.  Sorry, didn't mean to sound off.  Usually I delete posts when they dissolve into self pity, but maybe I'll let this one stand.  

On the plus side, along with the bitterly cold weather we have had a lot of bright sunshine.  🌞

I think you should consider that MAYBE it wasn't you trying to go too low that caused a flare but that you could actually be having an active relapse. Even mine, which I'd say has probably never gone away, varies with each return. Plus it is winter - a very depressing time under any circumstances. Feeling "not right" just makes it worse.

You've suggested this before Eileen and I'm hoping it is PMR as that might go away, whereas PsA looks like it's progressive.

my symptoms fit PMR, not PsA but I've yet to see a rheumatologist. (Raised CRP, ESR, instant response to steroids)

the lung specialist I saw last year suggested it could take up to 10 years to get a definitive diagnosis for auto immune inflammatory arthritis

Happy New Year!

Eileen this has appeared under the wrong message!

PsA does have other medications that help. Actually - I think the 10-year figure does tend to be for the less common autoimmune disorders rather than the inflammatory arthritides. Not that it makes that much difference as the starting medications are similar to try to prevent progression - which is why early identification is important and why GPs should hand over patients sooner rather than later to specialists. There is a pretty high rate of PMR diagnoses by GPs being incorrect.

It's the way the forum works - it appears at the bottom of the "conversation" that is going on when you post. It is preferable to the nesting system on the HealthUnlocked forum - here at least each post tells you who it as replying to! Though not which of a series of replies by the same person. You get used to it eventually! Still irritating though...

Thank you Eileen.  It may well have been a combination.  It would be nice if I could point to something and say that's what caused this flare.  And in retrospect I had a couple of mildly stressful things happening simultaneously (my computer woes, planning holidays, and then the too early reduction and increasing pain which I really did take too long to deal with, but nothing like what went on when PMR first struck).  The flare started in summertime so can't blame the weather.  It's so silly, really.  Thought I'd reached a place of acceptance but apparently not.  Miles to go before I sleep.... 

Don't know what I'd do without these forums.  The only other person I know with PMR, d-i-l's father, is in hospital at the moment with aspiration pneumonia.  Rushed there by ambulance a day or two after Christmas but fortunately recovering well. 

But if what you suggest is the case, then perhaps if I get safely to 3.5 I should stop there for longer than normally I'd have planned?  This whole episode seems to be taking forever! 

Happy healthier New Year!   🎉?🎈

Wherever you feel best is where you need to be!

Poor DIL's dad - what led to his aspiration pneumonia? Not a good place to be at this time of year - lots of poorly people with allsorts going on.

He's a few years older than me, doesn't look after himself properly, has diabetes, a pacemaker, is overweight and despite some good intentions over the past year doesn't exercise.  Guess instead of grumbling about my condition although I do look after myself, I should be counting my blessings! 

I too have had a relapse...since about midNovember. I can’t quite put my finger on why.  More fatigue.......and just doldrums and feeling weak, and angry that the days and months are passing me by.

I am wondering if you have kept up with your great exercise routine.

I know my level of exercise has gone way down since winter weather has arrived.  So being more active (at a PMR level, of course) is my current goal / New Years resolution.   I’ve done 3 days in a row and must say I feel a little bit better so I have high hopes that I am onto something!  It’s hard to walk on the treadmill - so boring - but I think I can stick with it if I find some interesting podcasts (I go to a fitness place so can’t have my TV in front of me  🙁 ). At least I am warm and dry. 

I was well on my way to 2 1/2 mgs when my troubles started and I ended up at 4 mgs for a few days to get things back under control, and then many 3-something days before I could get back to 2 3/4 mgs. 

I sure wish I had a PMR friend here as we could get each other to exercise.  Some days it’s so hard to get out and moving!

 

I understand how you feel.  Maybe it would help if I explain my view of PMR journey...I see it as 5-6 year long, so it does not bother me if I stay longer on the same dose. I tried to reduce from 5 to 4.5 more then 15 months ago. The body complained, and I went back to 5 and stayed at that level for 6+ months. Then I reduced to 4.5 and 4. When I tried to go to 3.5 last September, again it did not feel right, so I went back to 4. I will try tapering lower this month and see where that goes. Thus far I did not have a flair, knock on wood.

The point I am trying to make is that if you  look at 5 year journey, and 60 months, there is plenty of time. Reducing pred is like pushing on the string . It dos not work  if underlying PMR is active, it requires certain level of pred. There is no point to stress about the things that are out of our control.

"I can’t quite put my finger on why"

At a guess because you have reached your goal: the lowest dose that manages your symptoms. Then you carried on. This is a VERY low dose you have got to - I'd stick at 3 until the spring. There are a few rheumies who tell patients not to reduce during the winter.

It appears dil's father (there must be a name for that relationship?) has been the victim of misdiagnosis,  For some time he's been treated for COPD (I think since his pacemaker was inserted a couple of years ago) but now that he's in the hospital and they've run him through every possible test it turns out he's got asthma, not COPD, and the treatment for COPD (plus another med to deal with side effects) has done him no good at all.  One reason he's rallying so quickly after literally being at death's door is because they've withdrawn that med and are now working to control the asthma.  So one can hardly blame the poor man for not wanting to carry on with his exercise regimen, despite good intentions.  He must have been feeling ghastly for some time.  And, unlike me , he's one of those older people who sort of accepts what happens, has faith in the doctors, doesn't ask questions, and even if he did he probably wouldn't hear the answer properly.  So now his two daughters will make sure that at least one of them accompanies him to every appointment, his wife apparently being rather unhelpful when she's with him!  There may be further drama in the family later this month as my dil has a sebaceous cyst, which should have been dealt with over a year ago, and wasn't thanks to our stuttering healthcare system,growing and pressing on a nerve in her neck and causing more headaches to go with ones she already suffers from..  I think we are all worried about what can  happen with the operation to remove it, but one thing we do have is top notch specialists, if you can see them in a timely fashion.  There's always something, isn't there?  

And, creaky though I am, I do count my blessings.  Best wishes to you for a good 2018.

Hmmm - can't remember of the top of my head the percentage of patients in hospital who are there because of medications being wrong in some way but I do know it is scarily high! 

Get well soon sir, and all the best to DIL.

Thank you for your thoughtful reply, Nick.  i do agree with you about not rushing things, and I hadn't been.  Eileen has suggested that it wasn't the premature taper to 1 mg which caused a flare, but rather an increase in the disease activity itself.  But I think the reduction did indeed trigger what's going on with me.  It's too much of a coincidence.  So I think when you're as carefully balanced with pred as I was, and I did at 1.5 feel well enough to wonder if I was approaching true remission (obviously not) but repeated attempts to go to 1 mg made the disease flare up and it's been much more difficult to control again than I expected.  I should have hung around at 1.5 for a long time.  And I can only blame myself for not heeding my inner voice instead of attempting to do as my doctor suggested.  I think she's learned a lesson, and I certainly have.  I have some experience of steroids and tapering because since childhood, off and on I've had dry itchy skin which responds to mild cortisone ointment.  But unless I carefully withdraw the ointment, gradually substituting something else, my skin flares up worse than ever, and the red patch covers a larger area.  So the treatment worked, but it's withdrawal causes much worse symptoms. Btw this was something which pred cleared up completely of course.  I think that's exactly what happened to me last June and July.  I withdrew too quickly, tried too often and now I may not be as badly off as I was at the beginning, but I'm certainly worse off than I was a year ago and will have to admit that it will take a long time to get back to 1.5 again, and right now I can't even try.  But it's so annoying.  My hair had got back to normal, and now, a few months after having to increase my dosage fairly minimally in the big picture, it's gone all limp again and I feel my muscles are wasting away. what's left of them.  The polar vortex gripping our country is finally loosening its grip on the east where I live, but there are predictions of a big snowstorm in a couple of days.  Maybe this time I should heed the advice not to taper in the wintertime!

All the best to you for a good 2018.

I believe that after cancer and heart disease, incorrect medication is the third reason for deaths. 

A sobering read:

https://www.ncbi.nlm.nih.gov/books/NBK225187/

Last year I watched a series on Netflix, a sort of alternative history of ancient Egypt.  Certainly was a distraction from the boredom of the treadmill.  

I believe it.  My father had lung cancer.  In the course of his last few years first error was opening up the wrong side of his chest, meaning ribs on both sides had to be cut (the mistake not caught until the surgeon viewed the exposed lung), so twice as long under anaesthetic.  Then later he had laser surgery on his brain where the cancer had spread.  Surgeon felt he had managed to get all the cancer out and was very optimistic.  After the operation my father was left unrestrained in his bed, and when he awoke he was unattended, although a nurse had been employed to be with him at all times, attempted to get up, fell, broke his hip and undoubtedly damaged the surgical wound in his brain.  He never really recovered from that.  This man was a physician being treated by the best.  Mistakes directly by others, not necessarily the doctors, in the system, although the business of cutting open the wrong side of the body completely baffles me and I think the surgeon bears a lot of responsibility for that.   

I've always said I'd get OH to write "HERE" and "OTHER SIDE" with arrows if I needed a unilateral intervention!

My stepmother worked as a nurse back in the 40s and 50s and she said whenever an op had to be done on one of a pair of organs (eye, limb, etc) while the patient was still awake they marked the side to be operated on, and confirmed with the patient.

Hi Eileen,

Do you happen to know why rheumies advise not reducing during the winter?

I would think that winter would be a very good time to reduce. For example, I am less likely to overdo (eg, no gardening) and I am less busy generally so can focus even more on how I am feeling. 

Judging from the way I feel these day I think it's the cold.  That being said I had no problems tapering my first two winters on pred.  OMG this is my third winter! 

I have had a couple of ops in the last three months and each time they have marked the limb and asked me to confirm. I suppose they assume I am not suffering from dementia!!

The leading ortho surg in our city was sued last year for replacing the wrong knee. Odd because each member of the surgical team comes in beforehand and asks which limb. The surg initials the site. Then in the OR they go around the table with each member of the team stating what procedure they are doing and which limb.  How he screwed this one up defies imagination but the poor patient is a few million dollars richer.

It is now generally accepted that weather influences many disorders - and rheumatic diseases don't usually do well in cold or wet weather. Quite often I can tell you 3 days ahead the weather is going to change! 

OTOH - if you yourself know weather doesn't bother you, yes, there is logic in reducing when you will be quiet.

I'm sure the compensation will make up for already having both knees replaced...

My husband was with a surgeon visiting a patient before an amputation because of diabetic gangrene in order to get the consent form signed.

Surgeon: "Now then, tomorrow we're going to be taking away your right leg..."

Patient: "No..."

You can imagine the conversation since the surgeon assumed that the patient had sufddenly decided not to have it done. Eventually the surgeon had the gumption to ask why not.

The patient threw the cover back.

"Because you already amputated the right one - I've only got a left leg! ..."

Result - one speechless surgeon. Which isn't a common occurrence!!!

Hi twopies, one really cannot credit, quite unbelievable. The trouble is we assume that you get a vast payout but it is not as easy as that. You have to sue as they never admit fault initially even in obvious cases and it can take years of total hassle and dealing with nightmare individuals to get your hands on the money. 

I recognise what you are saying about how you are feeling, Anhaga. It happened to me when I reached 1.5 a number of weeks ago and suddenly realised I had overshot at 2.5. I went back up to 3 and have stabilised. I am going to start the DSNS method next week when I will feel life is more stable. Have had recent stress again plus all the extras of the festive season. Good luck and best wishes to you and all on the forum for 2018.

I know, it's terrible.  My husband has had 2 knee replacements, the recovery time is awful.  The doc is still in business, just about as sought after as ever.