Do doctor's get it? The ongoing prednisone saga...

Boomer13
Boomer13 Member Posts: 1,931
edited 24. Jul 2013, 13:56 in Living with Arthritis archive
Hi;

I haven't been here much what with side-effects of prednisone, some horrid pain and bad nights. I've just been holed up like the miserable hermit I can be at times. Husband is fed up with me at the moment too.

I have been reading other's posts and been moved by the level of support, and all the various trials everyone is faced with. I'm struck by the seemingly monumental nature of dealing with diseases/pain of all kinds. I know I should be inspired, but here I am having a rant instead.

So after the initial anxiety reaction starting back on pred levelled off and I plunged into severe depression. As if living with the disease wasn't bad enough!! I really do wonder if doctor's understand how much we are affected by these things on so many levels. Now, two weeks after starting pred, the side-effects are improving and I've increased the dose again hoping for a positive effect on joints, etc.

So yesterday I had some energy for the first time in 10 months and the aching may be easing off today, but now I'm supposed to be tapering off pred!!! Arrrrrgh!!! After all this, just to come off it again. If I do, I never want to see the stuff again, ever. The doctor's world is all quick decisions, judgements, lack of emotional involvement, etc. 10 min consults but we patients (and our families) live the in-between time and the results of their judgements; positive ones and negative. I know rational answers are there for doctor's being the way they are: pressed for time, can't deal with all the emotion, etc, etc. but it just doesn't make sense sometimes, given how complex humans are, to make a judgement in under 10 mins that the patient then must then live with for months. This medicine, a scientific endeavor, seems to allow a larger element of chance to creep in than might be desirable. As we know, the trial and error approach to prescribing our various arthritic meds seems very unscientific sometimes. I'm discouraged by doctors right now because I tried getting to know one doctor well and it led to being misdiagnosed & misprescribed. Now I have tried another approach, and while I have a diagnosis, I still don't feel I'm being heard. It just shouldn't be this hard!! Ah, the waiting and suffering seems endless right now; the pred depression at work and winning!

Rationally, I know I'm making progress and must be a patient patient but really needed a rant!!! I've never been very good at being patient!! The pain is really too much. I'm going back to doctor on Friday to present my case for staying on pred longer. If I could just have a small holiday from the pain, I think I could be more effective in my coping and regain my coping-cornerstone, my sense of humor!

Husband is jabbing me at the moment about doing more which is further disabling my sense of humor. He's fed up too I guess.

Thanks for letting me rant.
Wishing everyone peace from pain, at least for a little while.

Anna

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    After seventeen years of this wondrous malarkey I have yet to meet an arthritic rheumatologist let alone an arthritic GP. As far as I am concerned they deal with the theories but we, the mere patients, have to confront the reality. I do, however, know a rheumatology nurse who has RA and she is one of the biggest babies imaginable when it comes to doing her meth injection.

    I first encountered prednisalone when enbrel tried to explode my liver and I had to stop all the meds. I happened to see my rheumatologist during this 'dry' spell and she prescribed the pred: I had no expectations of beneift but, four hours after the first dose of 20mgs, happiness was. I felt better, I could move and all was well in my world.

    Pred has a role but it is not an ideal solution. It can tide one over and sometimes that is what we need. DD
  • stickywicket
    stickywicket Member Posts: 27,100
    edited 30. Nov -1, 00:00
    Oh Anna! You do not sound like a happy bunny right now. And you have much to be unhappy about. Sometimes the whole kit and kaboodle of arthritis/pain/meds/docs becomes overwhelming and we can't see a way back to anything resembling a kind of normality.

    Pred does strange things to us. Most of us have a love/hate relationship with it. It can mess with emotions as well as other things. You've just done anxiety and depression and now, as it seems to be kicking in and you're deriving some benefit, you are due to start tailing it off :roll: Yes, I think a chat with the doc is a very sensible response to that.

    I tend to feel that docs, like the rest of us, are normal human beings who come in all sorts of varieties. Some can do empathy: others can't. However, the one with the crap bedside manner might be brilliant at diagnosing while the lovely kind one who listens might be very unclued up with the very disease we've come with. Until I became friends with someone with Muscular Dystrophy I'd no idea of the full implications of the disease either medically or on her home life. None of us really and truly understands another's pain and difficulties.

    I don't think any doc could live, emotionally, day in, day out with the emotional tsunami they must encounter on a daily basis. To be effective they must have some detachment. I assume I must tell them everything. I expect them to remember nothing. I know they have notes (An entire Encyclopaedia Britannica for my own file :oops: ) but they can't call up everything on every visit. And medicine, especially for something like arthritis, is very much trial and error. We all respond differently to the meds so there's no way of knowing in advance which'll suit who.

    I'm sorry, I don't quite understand how getting to know a doc well can result in being misdiagnosed and misprescribed. I usually find it helps, though seeing a brand new face can also be very useful, especially a young one with fresh ideas.

    I think depression colours everything (black mainly :roll: ) and once that lifts you'll find it easier to cope. If you can have your 'holiday from pain', that should help too but don't get hooked on it. It's not reality :?

    As for the husband – jab him back! Give him The Spoon Theory and There's a Gorilla in my House to read. Mine's always been just the opposite and just as annoying, telling me not to do stuff and to 'save your joints'. For what? For some glorious day when they'll all work beautifully and painlessly? Nah. I'll get what I can out of the beggurs right now :lol:
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Thank you DD and SW for your helpful replies.

    Now that I've got the rant out and had a reasonable day pain-wise I'm feeling a little more sane, and slightly guilty for ranting to you other sufferers.

    The pred is definitely having a positive effect on the joints/enthesitis at least. DD my previous experience was like yours; I could walk comfortably soon after taking it and had no other disturbing side effects. This time, the emotional effects caught me off guard.

    SW your sensible, thoughtful reply really settled my mind. I will carry on fighting off the cynicism and bitterness that have crept in. My disappointment in my previous doctor after a long and mostly positive relationship with him was because he stopped listening, definitely proclaimed I had fibro and that my other symptoms were the result of a worried mind. His discounted my bone and joint pain, as well as gallbladder (yes, another issue!!) pain. While I know it is ridiculous to have so many pain issues at once but I do. I know I'm a tough monkey! I thought having a trusting, long-term relationship with my doctor would insulate me against misdiagnosis & misunderstanding. He then tried to talk me out of further consult with a rheum and treatment with DMARDS. I'm having difficulty understanding why he would do this. I'll do my best to believe this was a one-off, and likely won't happen again with another doc, but I am less trusting.

    I've made up my mind that I'm going to go back and talk him about this one day when I feel better, now that I have a diagnosis. He's a nice person, so I think it will lead to a helpful discussion for myself. I don't have room in my life for resentment and bitterness, so I would like to resolve this. Really, it's all water under the bridge and now I am seeing the appropriate GP and Rheum for myself which is the important thing (oh dear, I'm getting longwinded again, sorry).

    I'm with you on getting all out the joints while we can!! With that said, I'm going to get as much out of my pred-effect that I can, even though it's not reality :( , and get my thinking back to a healthier state for dealing with the return to pain that'll be coming.

    Thanks for your lovely help ((())).
    Anna
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    In the third year of my taking it the easier walking had long gone (thanks to the OA) but I would bowl along regardless - I wonder how much damage I caused to myself? :lol: It was that lovely 'I feel reasonably OK!' feeling which was so pleasant and so hard to give up, but I did and will not go back onto it now - well, that's the plan, being taken off all meds again at some point in the future might change my view. :wink: Not once did I have the emotional side-effects but I know that some on here have and they must be so hard to deal with on top of everything else.

    As for your replies, well, I guess that's what we do on here. One is allowed to rant and rave (the audience does understand) and us old hands are usually around to try to help out with information and support. I won't deny it though - it is nice to be thanked. All of us on here are struggling and if people take the time (and effort) to 'pen' a reply then surely that should be acknowledged.

    GPs are not necessarily our 'friends'. They don't know enough about our troubles and should be more than willing to leave things to those who do, viz the rheumatologists. The system I have (I go to a teaching hospital) is that I see my consultant once every six months and, in between those times, a rheumatology nurse. I also have a Helpline I can ring when in trouble and, if necessary, they will get me in for treatment. Yup, I'm spoiled. :wink:

    Take care, I wish you well. DD
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Anna,

    It's good to rant :)

    I don't have much to add to what DD and s/w have said, but I just wanted to reassure you that everything you experienced while on pred is par for the course, though that may not be too reassuring! :?

    Also, I understand your frustrations with 'DoctorWorld'. It's pretty tough at times. I find it helps to write everything down as I experience it, not just the physical pain but all the worry too, then provide a written summary when I see the doc/consultant. If I try to talk about how I feel, I tend to cry a lot and I miss things out, then I feel rubbish afterwards. Both my doc and consultant found it a bit strange initially, being presented with a report, but they're used to it now. I call it the 'Doc.doc' and it includes a brief history and list of meds too.

    Anyway, best of luck for your next appointment,
    Phee
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Thank you Phee;

    I'm glad no one seems to mind the ranting; it does seem to help somewhat.

    I like your suggestion for taking a report with you to the doctors' office. I get all fuddled too and really "speak" much better in type. I'll give it a try.

    Now I've gone through the pred emotional effect, I'll at least know what to expect next time. I thought I was finally really melting down mentally. Scary. Anyway, thank you, it's amazingly helpful to know others have gone through similar too. It doesn't seem like I need to take it too seriously :) .

    Anna
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    You're welcome, Anna :)

    I speak better in type too in medical situations. During my last phone consultation with my GP, I started screeching with laughter, for no obvious reason. Perhaps that was due to the heat :oops:

    Having experienced my own meltdown on high-dose pred, I agree that it helps to know what to expect. It was strange, because sometimes I'd have moments of clarity and I'd ask my GP whether the thoughts I was having were normal. They were quite bizarre at times, but he kept telling me I was sane. Perhaps he’s on pred too! :lol:

    Hope you're having a good weekend,
    Phee
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    I am feeling quite a lot better, but with getting outside a little more and to the swimming pool, I managed to overdo things. Doctor has agrees that I can continue on my current dose of prednisone now that the side-effects has settled down. Yesterday was absolutely the best day I've had in two years. I still have pain, but just to have a little energy.....I had forgotten what that was like.

    I did the spontaneous, outburst of laughter-thing with my hubby for absolutely no reason the other night. It hasn't happened in so long I didn't recognise the feeling. My husband thought I was really losing my mind and offered to take me to the hospital!! :wink: I think it must be some kind stress/pressure release valve we have. I sure like it better than the spontaneous crying thing. It's weird but I am more likely to get teary when I'm feeling better. I'm a strange 'un.....

    xxAnna
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Laughter is indeed a good medicine - there's an article about it in Inspire, AC's new magazine (my copy plopped through the door yesterday). A good burst of laughter releases endorphins, the feel good hormone and they ease stress, pain and tension. There is little scientific evidence to prove it but I find a good natter with my friends - plus a giggle or two - always lifts my spirits and makes me feel a great deal better in myself. I firmly believe in finding the funny side to life's set-backs even if that can take some time. (After last Thursday's set-back it is taking time but it will happen.) DD
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    I agree DD, nattering and giggling are essential to surviving with these illness. Any excuse for more endorphins is a good one.

    My sense of humour has become increasingly warped, dark and dry but as strange as I may appear to "normal" folk. I think the important thing is to remember to find things amusing and laugh when we can. Mostly, we arthritics do seem to end up lurking against our will on a darker side of human experience.

    Sometimes, I find the various ironies and consequences outrageously funny in a very dark way. Especially the silly lengths I have to go to just to do one simple task that I used to take for granted. I can't help but laugh at it all, it is so ridiculous.
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Boomer13 wrote:
    My sense of humour has become increasingly warped, dark and dry

    Yes, that sounds familiar :lol:

    Great news, getting out a bit more and managing a swim. I found I had a lot more energy while on high-dose pred, plus it's the only treatment that's put me into full remission. Now I'm better able to cope with the emotional uproar, it's a shame it isn't recommended for long-term use, but perhaps something else will win through, eventually!

    DD has it spot on about having a chuckle and I hope you're both having a good week so far :)

    Best wishes,
    Phee
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    OOOOooo, :D I'm glad to hear pred put you in remission. I'd heard stories that it could do this but I thought it was pretty much myth. I'll remain hopeful it will do this for me.

    I'm starting to think it's worth the side-effects long-term for QOL now. The bone loss issue must balance out somewhat if one is able to do more weight-bearing exercise while taking it? I know, that's a question for my rheum.

    Annaxx
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    No, not a myth! I suppose rheums might vary in their definition of remission. For mine, it just meant normal blood-test results. It didn't feel like full remission to me, though, as a bit of delay in diagnosis then years of unsuccessful treatments mean that I've OA too, so I've a lot of joint damage. However, I had a lot more energy, which was wonderful :D

    Unfortunately there are a lot of side effects to be had from pred, not just bone thinning, which is why my consultant won't prescribe it for long-term use. Thinking about it, I've never met anyone on pred alone as their treatment plan. But I'd mention exercise anyway, as a good physio programme's great for keeping things moving :)

    Phee x

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