Catch 22: When I was diagnosed in March 2016, with... - PMRGCAuk

PMRGCAuk
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Catch 22

When I was diagnosed in March 2016, with PMR, one of the most cheering things was that I learnt via the forum that for most people the disease burns out completely. Especially if you follow the guidance about slow taper, pacing activities, plenty of rest, try to avoid stress ( or at least be aware that it will knock you about). Gradually, almost imperceptibly, the message seems to be that it goes into remission and may reappear at some later date.

I have followed all the guidance and am beginning to feel like the fighter pilot , Yossarian, who was nearing the end of his 25 bombing missions and was then told that he had to complete 35. ( In Catch 22).

Then many doctors cling fondly to the notion that the disease lasts 2 years and “ we really must get you off these steroids”). Catch 22 we are still symptomatic and need the d* *** things.

Sorry just a rant - probably the Synacthen Test this morning and delayed 4.5 mgs Pred. I feel awful. 😣

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Your test was this morning? How did that go? I hear some people fall asleep during it (probably because they have to get up early and not take their pred :D )

Hope you feel better tomorrow.

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Thanks Heron! Slept for 2 hours when I got home, the nurses couldn’t have been kinder. The test itself was pretty easy. I certainly stiffened up without my Pred though - a long wait at the clinic. Results later via the Endocrinologist.

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Funny how much a change in routine can upset the whole day. <3

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Sorry that you have had such a rough day , and I know exactly what you mean.

I've just started to protect my mental health with all of my conditions now by keeping something similar to your Catch 22 philosophy in my mind at each step.

It does seem to help cushion the knocks if you go on your next flight mission knowing that just because something is meant to happen a certain way doesn't mean it always does.

The silver lining is when something does improve or heal as expected it feels like a bonus prize rather than continually building my expectations and dealing with the disappointments.

Hope you feel more yourself again soon and get plenty of rest , as well as some relaxation from doing a few things you enjoy x

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Hi Jane, having missed a 5mg pill of my current 6mg dose I sympathise. I think I am lucky that I have a few chronic conditions that go through various stages. I have usually followed all the guidance I could find and still found that one was active more than in remission. The first few years I did a lot of "when this goes...." Type thinking and was disappointed as each year rolled round and sometimes I had gone 100 steps backwards and often another condition had joined the party.

You are 3yrs in to a condition that the mean treatment time with pred is 5.9years. then of course there are the outliers who have to experience even more years of symptoms and further health consequences associated with pmr. My way of handling the nauseating fatigue I often feel is to lay down until it passes,that is part of pacing for me. I don't try and push through unless it absolutely can't be avoided. Then I rest asap. Everytime I have tried to fight a symptom and resist it it kicks me right up the bottom. Like I say I am lucky, other pre-existing illness prepared the way. I do have the oh no sessions, but I am aware I may have a few years left yet so try to live in each day not the next day, week, year, lifetime!! Hope you feel better today🌻😍

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~Very well worded Poopadoop - couldn't have expressed it better myself~ :) :)

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It does show your wonderful accepting state of mind when you say you are"lucky" to have other health conditions that prepared you. How valuable the advise from those of you who have grappled with health issues before PMR joined along. Thanks.

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My dog helped me too! She was seriously ill as a puppy but if she felt good walked, if not turned back to the car. They tend to live in the moment and I like that.

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Living in the moment is a great quality of life enhancer. I think my cats live for the next meal.😺

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That's me!???😋🍒🍒🍒

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Yes I think I have to agree. I'm the same.

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What cat doesnt? I caught ours sitting on OH head in the early hours trying to wake him up for food!

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I have come to the conclusion that the medical people we deal with don`t always make us feel better....in fact worse.....with there so called knowledge....(you must get off those steroids etc, or like my doctor, you have to accept you will never get off pred)

Yes, we are all fighter pilots....and sometimes would like to just parachute out and be left alone!…..

Like you not feeling good...but we push on!

Keep us informed when you get your results....

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Well done, another hurdle over. I too found the test fairly unremarkable, a bit fuzzy headed & slept afterwards. As you say the nurses were extremely kind & took on board I was worried about anaphylactic shock. Saw the endo last night & he has confirmed I may well be on pred for the foreseeable future. Hopefully not more than 5mg but definitely not less than 3.5mg. My synacthen test brought my bloods up to 240 from 100. He suggested I have blood tests for diabetes& another just to check the pituitary is ok. also think about taking a serotonin drug for a short while to see if it helps.

Just about to drive up to Yorkshire from Cornwall, what fun!

Take care & hope you have positive news soon.

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Rather you than me! Not going to Glastonbury then.😂🤣😂 - thought it would be just what we want!

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The M5...the bain of my life during summer visits to my family in Glos and Somerset.

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Come on Jane where’s your Viking spirit! Hope it’s returned this morning, you know you can get through this, however long it takes. 💛

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Hope you feel better soon Jane. Thinking of you. X

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Jane, now you have had a wallow, up you get back into the longboat, complete with helmet and sword..............you will survive and help people along the way.............that is why you are a Viking..................

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Had to reread your post because I know you started this journey about the same time as me, you got the year wrong.

If we lived in isolation perhaps we would have an illness that followed the text books, but we don't. Thanks to events outside my control I have had three flares which have left me after 3.5 years, unable to get below 10mg. I know there are people much worse off than me and so do you. It doesn't stop me getting low at times, but the people here are the best to help us get through these tough times.

The Viking fighters used to cry " For Odin" perhaps we should cry " For Freya" and go into battle.

Does Freya have a flag?

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Sure I could make one! Dab hand on the old sewing machine!!

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I wait with bated breath!

According to Dr Google Freya was loving and generous, sounds like our DL I thought. Then it pointed out that she was VERY generous with her loving! Oooh!

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Generous...but very selective 😇

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Get Yellow Bluebell on it she's a quilting demon!

I'll just get my old sword , shield and bow out , now all I need is to get a bit more Viking strength to lift it!😋😂😂

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But I cheer you up with coffee and fabric drooling!!

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Occasionally, I think I paid last time!

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You did, and it's my turn next time just not sure where we should go!!

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Doesn't it get very messy?

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Can be a bit wet but scats doesnt drool, thats totally my doing!!

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Keep off the biscuits and cake though ...

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Hmmm we only have a small slice!!

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It's where the crumbs get to I'm thinking of ...

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Oh God never thought about what mess that would make. Do you think I could get the fabric cheaper if its drooled on? I could always blame scats!!

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Thinking of you Jane. I was diagnosed similar time to you and fighting through adrenal wake up time like you are. Trying to be positive as that is my default position but it’s hard. Sorry to hear you feel so low, especially as you have been such a staunch support daily on this forum.

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With you on the rant! Im on GP's "you have to redoce 1mg every month now and be off them". Well thats not going to happen. Let us know how the results go. Best wishes.

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My GP made me feel like a failure. when I saw her Wednesday,....she has mostly been supportive in the past.....

I told her the Rheumie that diagnosed me, prescribed Pred, then wanted me off ASP....….and so it goes on....not feeling good at all today, so had to have a little moan!

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I couldn’t bare seeing my former rheumy after the third appointment. When her assistant would take my blood pressure and weigh me before each visit, my bp would always be high. I would be nervous and stressed out, and leave angry and frustrated. Finally I made the decision it was best to be seen by another rheumy or my GP. I need and deserve support, information and sincere, accurate dialogue, not judgement, shame and misinformation. Would you consider seeing someone else?

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I do only see my GP, who normally leaves things to me, but when I went this week feeling so I'll (like today) weak and low, she dismissed adrenal problems, said it was steroid myopathy, and should accept that after being on pre d 7years, and that it won't stop because I will more than likely always be on pred....😏....

So not a positive appointment......she only wanted to ta lk about me taking A acid.........

She suggested seeing another rheumi e not too far away, but he's all about Osteoporosis....so pretty sure I will get the A acid argument again.....I'm just not up to it right now....

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Hi Longtimer

What dose of Pred are you on now? Sometimes if l wasn’t feeling so well, my husband would suggest l saw my GP & often l’d say I’m not well enough to stand up to a debate on his latest lecture on the perils of Pred!

Have you had a Dexa Scan to prove if you need it or not?

Hope you feel better later? 🌷

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Thank you for that......I have been on 8mg for several months now, can never drop half mg and drop again quickly, I always have to settle for quite a while.

I had a dexa scan about 18 months ago, I have Osteoporosis, and trying to treat it naturally, I react to meds even at low doses.....

Not sure what's going on with how I feel at the moment...it feels like flu.....maybe a virus......so hard to tell.....have been laying down a lot today...feel very weak.......

Tomorrow is another day....🙏

Hope you are ok?

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I’ve been laying down this afternoon following a busy day yesterday! You’re at ‘that dose’ now when it’s so hard, l was at 7.5mg & struggling but had to stop the Methotrexate so l’m now back up at 12.5mg but keep trying to drop to no effect!.....

The osteoporosis is a challenge, l only had osteopenia but my latest Scan was completely ‘normal’ but I’ve had three years on Zolendronic Acid Infusions as an adjuvant to Chemo to try to prevent a spread into the bones.

I do hope you feel better tomorrow 🌷🌷🌷

Kind Regards

MrsN x

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Thank you...and you....

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Shows your GP knows absolutely nothing about steroid myopathy then , and kicked it out as a medical term because it sounded good and it could brush you off .

Steroid Myopathy is not something you should just put up with but needs properly testing and addressing , as it won't just go away on its own .

Maybe the trip to the Rheumy might be a good idea , at least you could discuss things in a more in depth way in a consultation rather than a limited surgery appointment.

Take care x

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I have come to my own conclusion that G Ps are anti pred....especially if you have been taking them more than two years.....so when you feel ill with anything while taking them.....it's because we are still on pred..so frustating....

I am pondering over weather to see another rheumie...maybe elsewhere....thank you....

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My latest appt with gp to discuss xrays of hips showing wear and tear ended up with me walking out sayin "whatever" . His first comment was that pred doesnt cause damage to bones so the wear and tear was just natural. 2nd thing was "you should be taking AA as pred causes damage to bones". Theres goes another gp to add to my " only see if dying" list.

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Couldn't agree more....

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I am running out of gp's!!

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Me too...😕

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Yes , they do annoy me as it is generally their attitude at previous visits that makes people have the " white coat syndrome" and soaring BP that they accuse people of.

Want to see less " white coat syndrome " Docs , don't just ditch the white coat , ditch the attitude!!

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OH saw GP yesterday and mentioned " white coat syndrome ". The reply was " me too, I'm the only one that can take my BP". Nice to know some understand.

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Unfortunately they use " white coat syndrome " as a way to reinforce their ability to brush off genuine physical complaints as anxiety disorders though when they don't have enough knowledge of certain types of Chronic illness and your blood tests come back normal , especially in a GP surgery situation , which is part of the cause for so many people being delayed in getting a diagnosis.

If only they used the syndrome as intended , to explain the fact that your BP or heart rate readings are raised or normal when you have actually described symptoms more in line with low blood pressure or Hypotension.

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I know what you mean. It can be quite a battle!!

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I hope you've had a good sleep and may feel better today, Jane. I was diagnosed around the same time as you - 3 years ago, not 3 months as your post suggests!

I'm struggling at the moment with blood levels rising, without a return of the PMR pains - what's going on? (GP and Rheumy are looking into it.)

Then there are others in the support group who have got to 'Club Zero' before me.....!

I try to remind myself that I'm only half way there, according to the 5.9 year figure.

Using your analogy, I'll just 'soldier on' and be brave. You are usually the one to tell us this!

Take care x

Me: PMR since May 2016. 3 flares and now on 6mg.

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Hope you’re feeling better today Jane? 🌷

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Thank you all for your backbone stiffening admonishments ( good wishes) and the ( well spotted) wishful thinking, year error now edited.

At times like these it has to be one step at a time. It’s no use saying that if I can just make it through this winter then.......

Life is what happens when you make other plans.

Viking inspiration “ Awake now warriors of mine, seize thy Linden shields, dwell on courage, fight at the front, be fierce and bold”.From “ The fight at Finnsburg. ( see Freya, we all still have it).

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Good!

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Haha yes Jane that's you. You just had a short spell out of the boat!!

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😂 you pulled me back in!

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All the best SheffieldJane, sincerely hope you start to feel so much better with the old adrenals. Let us know how you get on so those of us behind you know what's coming! It's a bit scary to say the least. Fingers crossed for you. I always enjoy reading your upbeat posts. Keep soldiering on!

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Yes SJ get that sword and shield out and your hair in twirled plaits and we'll all join you for some sort of 'staggering' battle - and you and me - hopefully ALL of us will 'win' eventually ... in the meantime give yourself a wee 'treat' XX

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Hope you’re feeling better now - seems like it with your warrior head back on.

My PMR is lessening after 3 1/2 years.

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Hi, one of my "days out to sit". In my first years of gca pmr, was to Sheffield botanical gardens where we would sit at the top and have a picnic. Happy days. Oh unable to drive that far now so we sit in my overgrown garden. Happy days.

i guess everyone has had days like this, I know I have.

Sometimes we have to give in to it and let ourself rest a while. Even the Vikings had times off from fighting to rest and recuperate.......... 🤔

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I went to Derwent yesterday and sat on a bench throwing the dogs ball. It was lovely.

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Hello Jane. I hope today is a better day for you. I was diagnosed May 2016 , been down to 5mg three times, then flared!! I've had a synacthen test , last year I think. Had been on 5mg a good while, I think my number was in the 400s. Of course flared again so upped pred. I'm on 6 mg now with hydroxychloroquin added for last few months. I think I have learned to just accept this journey!!

At the moment we have been in Cornwall for a week, one more week to go. Walking as much as I can, today is a rest day as awake through the night listening to really high winds!!

Take care, you are always a staunch supporter to everyone on here. Thinking of you. 😃😃😃😃

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Hi SJ,

🌺🌸🌼 here is a little bouquet to cheer your day.

Kind regards, Jerri

PMR dx 2013, currently 7.5 mg pred

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Hope your delayed pred dose has now kicked in Jane and that you’re feeling better.

As someone whose only “served” 1.5 years, I still have the mindset you described at the beginning of your post. PMR symptoms emerged in Dec/17 while I was 55 years old. Somehow I’ve developed hope that my PMR will go into remission by the time I turn 60. I created this timeline in my head knowing very well that it is not grounded in anything but hope....because this hope keeps me going.

I hear your woes, and certainly wish for you positive results of your test, AND remission sooner than later. One day at a time is a good approach, especially at your stage in disease progress. Rest and let your body get back on track and feel better soon. You are a strong warrior, resilient to have made it this far. Try not to compare your journey to others, it may make you feel worse despite the fact we are all different and our timelines are different too.

Sometimes I fantasize I’m one of the fit males on this forum who seem to wrap things up in under two years. Although I clearly am not, I’m still very happy for anyone whose condition goes into remission.

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Yes a fit male marathon runner who has no flares and easily tapers one a month with no fatigue. Fantasy indeed!👟

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We can be female - look at our women footballers ( US and UK).

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Well I would like to have the energy to simply fantasise about fit Male marathon runners full stop.

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😂😂😂

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How you doing Jane. It's awful when you get into that bubble. It sounds daft but I close phone etc down I stick YouTube on and watch the videos about kindnesses that people do for each other, it can.make me teary but a good cathartic cry following by daft dogs and cats doing crazy things can help me burst a little hole in the bubble.🎈🎈🎈🎇

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Yup! People saving falling babies for an embarrassing amount of time!

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I look up videos on FB that feature people getting surprised with puppies, or becoming grandparents, or people helping one another in one fashion or another. These feel good clips do the trick, sometimes elicit (good) tears, and remind me of the good in the world especially when I’m in a bad place mentally. I also used to reward and comfort myself with food. In order to stay on track with my weight loss, I now grill up a steak and veg and this I find to be very satiating. I’ve recently reintroduced golf and 20 minutes on the tennis court which also helps me out of a funk, and I sleep better.

At the same time I avoid any news in any form. Stopped reading/watching the news when I had PTSD. Important to stack the deck with good vibes when bad ones are lurking.

Hope everyone can find their own unique self-care regime to help them on this long and winding road called PMR/GCA.

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Avoiding world madness is vital for me.

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My own madness is more than enough to contend with.

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Exactly. 🤣🤣🤣

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Hang in their Jane & sorry to hear of your setback - probably Adrenal insufficiency rather than PMR as your test indicates? One thing that puzzles me is that how does <5mg Pred cause any side effects as isn't it just replacing natural steroids that we aren't producing? If it isn't producing side effects, why are people so eager to get off it if they are feeling well? Personally I think i wouldn't mind staying on Pred forever at such low levels if i wasn't suffering any harmful side effects?

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Sending love your way today. Sounds as if you've gotten a second wind by now. I am now at 6.5 after 3 years 5 months. Up until now I have a pretty difficult time reducing. Other conditions confused my symptoms. When I look back on how sick I was and what I did in spite of it I am amazed! Only in the past few months I no longer feel ill. I would wake up everyday feeling bad. I take pred at 230 am so don't have to deal with inflammation making me sick. I wish for you some green shoots of hope in areas of your life where there seems to be desert 😘🥀

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Hi Jane. Good to hear you more like yourself. We are allowed those moments of utter fed up ness( no such word!!) and feelings of “ why me?” I think ,like you, I felt this was an uncomfortable journey but I would do all the right things and it would burn itself out in two years. I started in Nov 2014, the PMR morphed into GCA and I am here now back on 13/12 mg. Life doesn’t always work out as we plan but as you have, you dust yourself down and face another day with courage and fortitude.

You will feel better Jane, maybe you won’t get off the pred , maybe you will. None of us knows what each day brings but we will make the best of each day when it comes. I think yesterday would have been an especially difficult day with late pred and the overwhelming tiredness. Rest today and spoil yourself. Thank you Jane for being there for so many others over your time on this site. Xx

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Sorry you had that day. Glad to see you are better. loved your Catch 22 comparison. ha! Aint that the truth!!!! Carry on ! Onward!! We have this!!! oxoxox

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