Please help- worried about husband sleeping too much, aging issues?

Sorry for the delay in responding. Our garage door, oven and cooktop all stopped working in the same day. 

By " aging " I mean that it is like he went from being a vibrant and 

reasonably active person to one who has daily physical challenges as well as mood swings. And of course he does...I have just been fighting the concern that this is permanent.

But to give perspective, I wouldn't be handling the weight gain and uncertainty  nearly as well as he does. But the changes in him  are so striking that I am still trying to grasp this new reality.

. Last year, we could handle yardwork,such as power  washing our home's  exterior, weeding, etc. We took long walks. 

Now his energy  and activity could be compared to his parents in their early  80s..or my mother in her 90s. Napping often. Very inactive, although he gives it his best, being careful not to overdo it.

He is in his mid 60s. So it is such an abrupt change in energy and mood and that is what I mean by aging. 

 

I'm sorry to hear that you have the extra stress of items breaking down. I recognise what you are saying about your husband and that's how I was at the beginning. I was always full of energy and able to do masses of work both around the house and garden. I wasn't sure how we would manage as my husband had major heart surgery which was touch and go. He also has a life limiting illness which means he is not as fit as he should be for his age. We have a large garden which needs a lot of attention. I thought we would never manage as neither of us was able. I made the decision that we would do what was necessary to keep us going in the interim. It removed a lot of the stress of both the effects of PMR and my husband's condition. The PMR was a double whammy for us as I had been able to keep going when my husband can't. I think what helped me was to decide if a task was necessary and if not then it could wait. It was and still is my motto to decide what is important in life. It certainly helps one feel less stressed. I am a very placid even tempered person and the mood swings were just not me . They are the side effect of steroids and for me partly the frustration of not having the energy to do what I  could always do before PMR. If you are able to reassess what is important and leave the rest until your husband's energy returns then I think it will help get you both through his PMR. At times I didn't think my energy would ever return but it has come back  though not yet to the level it was before PMR. I am now able to plan and be able to carry out my plans. The rest and sleep that your husband is having will help the healing process and is a positive if you are able to look at it in this way. I did exactly the same and it has paid dividends. It does get better though it may not seem like that at present. I realise it's hard for the carer so make sure you do something that helps you cope. Best wishes.

It's interesting, and infuriating, isn't it, when a bunch of appliances decide to pack up at the same time?  I think they must be able to communicate with one another!  

I am also interested in hearing your reaction to your husband's illness.  It's enlightening to hear the other viewpoint.  In my case, there are many things I would like to do, and before I got PMR I used to do them by myself for the most part as hubby's interests and mine had diverged so much over the years (no, I have no more interest in watching young men I don't know play soccer in the rain than he has in attending a lecture or an author reading).  Now I find more often than not I just don't do things because I haven't the energy to get myself there.  I mentioned to a friend my husband's apparent disinterest in the fact that for a while I was quite disabled and still am not myself, and she suggested that probably he was in denial.  He doesn't want to know that I'm not the person I used to be.  I think this is a kind interpretation.  Frankly I think he is completely oblivious!  So it's really moving to me to read about someone such as yourself who is so deeply caring and concerned about her life mate.  

I recognise what you are saying and I have fallen asleep watching a DVD with my grandchildren. We also read stories together at THEIR bedtime and I've been the one falling asleep when they read to me!! I love your attitude. Will you need to be chained to the motorcycle for your own safety? I found myself nodding off a lot for a long time and am more tired again as I reduce. I am at 3.5 now but there was an optimum time for energy and I can't remember what I was at then. The pain still hovers if I do anything repetitive but after 2 years I can see some light at the end of the tunnel. I am heading towards 70 so 2 years further down the line. I think I will probably not regain my energy before PMR but I am anticipating a good quality of life which is certainly improving. I find it is good to look back to what I could do at the beginning of PMR and what I can now do . It gives me hope for the future. Best wishes for your motorcycle trip and also to all on the PMR journey.

Cindy- Yes, I am extremely grateful that he is here. When I am at my most selfish,though,I miss the lost time with him being fully awake and present, although I do have good friends and plenty of my own interests. It's just that we had a certain lifestyle and shared activities and  now there are adjustments...and a certain pulling back or lessening of some of our usual activities to allow time for him to get better.

I do understand this but sometimes my emotions get the better of me ( although I don't stress him with them, keep them hidden, mostly) 

. 

Just checking in on you.  Is your husband feeling the same?  And how about you?  This disease does effect spouses as well, and I wish I was there to give you a big hug and tell you a couple of good jokes.  

Cindy

The doctor is still trying to determine the relatiinship between my husband's auto-immune condition and that of other family members. He believes there was a vulnerability, something genetic. 

He has seen it many times, Tapering the steroids has been challenging but he's encouraged my husband to stick with it, with time off when the pain surges and doesn't get better. He has also said that he'll have to withstand some pain to allow his adrenal system to get up to speed. 

 

"The doctor is still trying to determine the relatiinship between my husband's auto-immune condition and that of other family members. He believes there was a vulnerability, something genetic."

If he manages that then he is a better man than most of the PMR/GCA/other a/i illness researchers around the world! It's hardly rocket science that there is very likely a genetic tendency - it has been said for years that Scandinavian genes increase the risk of developing PMR. That was based, I suspect, on the work done in Olmsted County in Minnesota. Personally, I suspect the high numbers found there are possibly a reflection of a changed cultural/environmental situation because the people with PMR I know in Scandinavian countries know very few other people with PMR although you would expect the incidence to be very high there. It isn't particularly.  It is established that there are temporal/seasonal and spatial variations with clusters appearing in both senses - suggesting environmental or infectious causes. But some people have a genetic tendency to develop certain disorders - it applies to a lot of things and that is becoming clearer.

There is a massive amount of overlap between the various identified/named a/i disorders - I envisage developing a/i disease as going into a shop where all the wares are displayed on shelves behind the counter. The assistant hands over a selection of symptoms, just grabbing them from the sections fairly much at random. The label you end up with later depends on which are the most obvious signs or symptoms - and when some aren't particulalry differentiated, nowadays you may get a diagnosis of Undifferentiated Connective Tissue Disease. You have a disease but it isn't close enough to lupus or anything else to get that particular label. 

In the past, doctors recognised various common factors - and some who saw them in a few patients sat down and wrote a communication about them, perhaps giving them a name. Often their own, Sjogren's, Hashimoto's, Wegeners, that then went down in history. Nowadays they are able to identify far more complex commonalities because they have increasingly sensitive imaging and laboratory options and those diseases have been renamed - and in some cases split into several sub-columns. 

I think your doctor is falling into some very common misconceptions, about management of PMR at least. It is slowly being accepted that a great deal of the return of symptoms while reducing the pred dose is due to going at it like a bull in a china shop. If you reduce in large steps - and large is relative, for some people even 1mg at a time is large -  then it is likely you will cause a return of symptoms for either (or both) of two reasons. If you reduce too much suddenly then many patients develop steroid withdrawal rheumatism - so similar to PMR that you think it may be a flare and go back whereas if you remained at that dose and stuck it out it would have improved as the body got used to the new dose. Or, by dropping too far, you allow the inflammation to be more than the new dose can cope with - and you develop symptoms again. If you try to stick THAT out - you will allow in a flare as the inflammation mounts up and leaves you back where you started. Only worse off - because once you get into a yo-yo pattern subsequent reductions seem to become more difficult. 

I can only offer anecdotal evidence - but dozens, probably hundreds now, of patients on the forums have used one or other of a few very slow reduction plans very successfully. Even rheumies in the north of England have tried 2 of them - and were surprised and delighted to discover patients have fewer flares and less discomfort while reducing. One of them is being used in a clinical study in the north of England - and the feedback under controlled conditions is good. 

"He has also said that he'll have to withstand some pain to allow his adrenal system to get up to speed."

Really? I suggest you ask some of the people who have used the slow reduction approaches if that is true. There may be a few - but they are very few. Go about it slowly enough and most people will not only return to good adrenal function but will have got there without much in the way of pain. In fact, I'd say if a patient has pain the doctor isn't doing their job properly. And my local Head of Medicine says exactly the same. It isn't pain that is the limiting factor for most of us - it is the fatigue that develops when you keep reducing below about 7mg. That too may not be too awful if you listen to your body and are patient. If a patient has pain at low doses of pred it is much more likely to be the fact that the PMR is still active and requires a bit more pred to manage that. A dose of 5mg is often quite adequate to manage many people's PMR inflammation - and it is also just low enough to nudge the adrenal glands into life. And those patients usually have as little pain as they have all the way through the PMR journey.

Softly, softly, catchee monkey...

 

What a FANTASTIC post this is Eileen !! - highlighting many of the more nebulous yet significant details about PMR and autoimmune illness more generally. This wonderful description (below) of yours is almost exactly what my ophthalmologist brother said to me when I first told him what I 'had':

'There is a massive amount of overlap between the various identified/named a/i disorders - I envisage developing a/i disease as going into a shop where all the wares are displayed on shelves behind the counter. The assistant hands over a selection of symptoms, just grabbing them from the sections fairly much at random. The label you end up with later depends on which are the most obvious signs or symptoms ...' 

Of course this makes itsometimes confusing for medicos and more importantly all of 'US' but at least we know some things and that Pred is an 'invaluable' drug for all the stuff it does do well.

I am just also reflecting on how one day - researchers - in a hopefully not too distant future - will read these archives and think how far things have come through interrelating patients' experience and medical science. Clearly many contributions here and on some other excellent fora could be regarded as part of important 'citizen science' as so many people have provided qualitative - and some quantitative 'data' which is not only mutually and currently supportive - but also has possible future value for treatment (like the DSNS method has done) -and which maybe one day will assist in goals of 'prevention and cure'.

Wishful and hopeful thinking perhaps ... as I am eyeing off that 'monkey' 

Best and thanks again for all your invaluable contributions.

Rimmy

Thank you 

Interesting comment, Rimmy, my ophthalmologist gave me lots more information about prednisone than my gp did.  I saw him because I knew about the possibility of GCA but my gp didn't mention it.  They must train the eye doctors better than the gps!

I was thinking Rimmy's thoughts as I read your post just now!  ?

Hi Eileen its wonderful that you know so much about PMR., I thought I would look out what the Rheumatologist sent to my GP. My inflammatory markers on the 3 March when I was diagnosed was (ESR 29,CRP 7) as well as autoimmune profile(ANA negative, Rheumatoid factor negative, CA-125 normal) I was tested for Rheumatoid Arthritis as my brother has had this

since he was 17, he is know 60. 

my diagnoses was PMR with bilateral shoulder and pelvic girdle stiffness,

which I had, had since September'16 I just thought it would go away as I did not have a clue why I was so stiff, it wasn't until I found driving difficult that

I went to see my GP who thought I had Syaticia. After one session of Physio she said that was not what I had and needed to see a Rheumatologist within

a week I was seen, hence the diagnoses.

i am worried about going back up to my previous dose as I was told to

reduce Pred by 1mg a month, I know the stiffness has started to return not as bad as the beginning of diagnoses, maybe I need to see what happens if

when I reduce in July another 1mg this will bring me down to 16mg a day. Does anyone know if a GP is happy to give advice on Pred if  are under a

Rheumatologist Consultant.

 

Your Input is extremely helpful.

Normally in the UK PMR would be managed by a GP and often they make a better job of it than a consultant - purely because they are more accessible when something goes wrong (even if it still takes weeks!) and are more realistic about your problems. There are exceptions, of course, but you can find the person who has most idea about PMR in a practice and then always see them. Since when did anyone see the same person twice in a row in a hospital? 

The paper we refer to as the Bristol paper in the reading list was written by hospital rheumatologists to provide reliable background for GPs in managing PMR - and to some extent GCA once a diagnosis has been made. While it belongs in expert hands, the diagnosis of GCA must intially be suspected at the very least by a GP. But management between hospital visits - if you have a competent GP at least - is likely to be by the GP.

And it beats me, it really does: sciatica is a SYMPTOM that something is wrong. The skill is not in saying "you have sciatica", it is in working out WHY you have it.