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My Rheumy Retrospective

My Rheumy Retrospective

I had an appointment with my Rheumy last night... it was the 3rd, in as many months. I requested the appointment because I need to understand why I still feel like "CRAP," most of the time!

It's been 113 days since I started treatment! Shouldn't there be a notable difference?

My complaints included: My legs feel like they weigh a ton! My arms feel like stiff, pipes hanging lifelessly from my rigid, frozen shoulders. I have tight, achey bands that runs across my back (between the shoulder blades) and across the upper chest (between the collar bones), there is a pain in my left buttocks that runs down my left leg, I'm generally exhausted and fatigued even when I've had lots of rest, I get out of breath walking short distances, if I have a good day, the next day is usually a bad day, I experience heart palpitations sitting on the couch watching TV, for the most part I'm anti-social, moody, and emotional and my skin is so dry, I may just turn to dust and blow away...

She listened patiently, jotted it all down and (not in a patronising way) reassured me that she believed that most, if not all, of my complaints were attributed to the nasty side effects of being on this particular panacea.

Hmmmmm? Where have I heard that before?

Oh! Here on this website, from all of YOU!

When might I start feeling better?

When I'm down below 20mg daily

When will that be?

At our current rate, not until August 2018.

Will I make it?

Only time will tell.

PS - Good news!!!! She (the Rheumy) was doing Admin on the system Monday, and saw my GP Referral. She "triaged" it and as of April 18th I will be seeing her under the NHS! "Yes, Virginia, there is a Santa Clause."

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Sounds about right I’m afraid. I entered a twilight zone of horribleness exactly as you describe above. It is a gradual process of improvement so I can’t say when I felt better but 30mg seemed slightly more humane, then about 20mg and so on. It hasn’t been wake up a new person one day but realising that my skin hasn’t been dusty this week or my eyes haven’t bled, or my nap was only 30 mins or I didn’t cry about nothing for half a day. Every drop in dose made me feel rubbish for a time too so it felt like I was on a roller coaster. I took a rest at 18mg for 5 weeks and it was a relief to feel evenly bad instead of wild fluctuations.

I have to say though, it made it so much easier when I stopped waiting ‘for the door to open’ and stopped trying to do much more than walk the dog for half an hour and cook the family meal. It wastes energy trying to fight the Pred and takes it from your body that is doing the best it can. As I said somewhere else, I don’t think acceptance is giving up, it is being flexible and the good thing is, it is temporary, honest.

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Thank you SnazzyD... happy to know I'm in such god company! : )

I remember being so thankful for the "Pred" when it took away the disabling symptoms of my GCA, i.e. the blinding headache, the excruciating pain in my temples, the debilitating pain in my neck... I believed it was the "elixir of life!"

HA!

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Hi Melissa

I am so sorry to hear you are still feeling as bad as that - it just doesn't sound 'right' to me that you have so many body aches and pains at a still quite high dose. But I realise we all experience our own - individual expressions of these AI illnesses and some aspects are more amplified or possibly less obvious in each of us. On a similarly 'high' dose I couldn't feel my body much at all - no remnant stiffness, aches and pains a few hours after my first dose - with only a few re-emerging when I got below 20mg. The fatigue and low or even sometimes 'depressed' mood I often have felt seems to me to be unaffected by Pred dose and I gather other bothersome - if not 'serious' things like fragile skin and moon face are just a few expected side effects.

I am not sufficiently well educated in the medical side of things to pass an informed opinion - but I'm sure PMRpro and DL among others will have some helpful comments and suggestions as you seem to be doing it 'very tough'

Big hugs !!

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Thanks Rimmy, And "YES," that's what I keep thinking!!!! And the weird "body aches" seem to be mimicking PMR discomfort! Is that just a coincidence???

My specific question to her was why am I experiencing PMR symptoms if I have been on 55mg or higher for 3+ months; shouldn't that high of a dosage have alleviated all the PMR the symptoms, by now?

She just said she thought they were steroid side effects, not PMR symptoms...

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Good question - it will be invaluable to see what others here think - however this pans out Melissa - keep your chin up if you can - we all WANT you to feel MUCH better than you have !!

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Cheers.

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I know how you feel, my fear when I get breathlessness/dizziness/sweats pain etc.....is they jump on that old bandwagon everytime....it`s the steroids!!.....what a minefield it all is....

Going to visit teenage grandchildren today.....a big effort and try to look "normal"......down with the kids!!.......as if...

Onwards and upwards....spring is on the way...oh for a bit of sun!

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"Down with the kids," Made me laugh, thank you!!!!

Thank you Longtimer, it's good to hear you feel my pain. Literally and figuratively! : )

Hope da kids are down with you

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Love it☺

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Poor you! what a shame that the remedy is sometimes as bad as or worse than the disease!! I hope you make it to 20mg soon and pain free!!

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Thank you stellafmdm. Yes in this case,

“Sometimes the cure is worse than the disease." ~ Martha Moody

I hope I make it to 20mg!

Cheers!

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Honestly, I'm not being patronising but: Patience sweetheart!!!!!! Rome was not built in a day.

I promise you that a year from diagnosis you will look back and see how far you have come. You have a serious systemic illness, the pred is managing the inflammation but hasn't altered that systemic part, it is still there wreaking its havoc everywhere it has reached. And then you have to add on the less desirable effects of pred at high doses. You have to hold on to the fact that the pred, however horrible, is what stands between you and, primarily, being blind but also other potential long term comorbidities due to the inflammation.

It will improve - but you won't see an improvement from day to day. not even weeks, you have to stand back and look at months.

And Snazzy has already mentioned a very important point: stop fighting. Acceptance isn't giving in:

"Acceptance in human psychology is a person's assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it or protest it. The concept is close in meaning to acquiescence, derived from the Latin acquiēscere (to find rest in)." (Wiki)

When you stop fighting you will have so much more energy to devote to getting better and learning to live with your gorilla in the house.

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Thank you for these wise words PRMpro❤️

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Thank you. Early days for me. Diagnosed 20th February taking 20mg prednisolone and it's working. Always been a fighter learning to accept. Amor fati - love your fate. Thanks once again. Your responses have been my life line. I even quote you to my husband. And my blood tests were 'normal'!

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I like that "amor fati"

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A_c_c_e_p_t_a_n_c_e _ yes. I'm trying, I swear I'm trying. ...but I don't even feel like I'm fighting it! If I am its totally unconscious.

It's just that I feel like I'm stuck in my own version of the movie, "Groundhog Day." ...but mine is not half as funny and there is no Bill Murray!

More bad news...

How Many Days Did It Take to Build Rome? Apparently, 1,009,491 days and counting.

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Take a leaf out of the Roman builder’s book? Never do today what you can put off until tomorrow ;)

I wonder if you are leaping from steroid withdrawal to steroid withdrawal? I think you’re reducing 5mg every ten days? Mix that up with a good dollop of pred side effects, stir in some PMR and GCA systemic symptoms, and you have a recipe for feeling like Sh....ugar!

I think it was this forum where I read something which struck a chord with me..... along the lines of.... you’ve rescued a poorly kitten and it’s warmly ensconced in the pouch of your sweater, it needs rest to recover, a good diet to enable recovery, safety and security, take all its worries away, and give it time, LOTS of time, more time than you think. Be led by it, it will come round, it will flourish again, but in its own time, not your timetable. Watch and wait. That kitten is of course you.

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Can I put things off until the week after next in 5 years time???????????

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Sounds like a good plan.

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Thanks, Soraya_PMR, I wish I had a rescued a real poorly kitten, it would give me something else to focus on, as I'm pretty freaking boring lately!!!!!

And yes, that sounds about right really, "steroid withdrawal to steroid withdrawal." I'm reducing 5 mg every 10 days; however, on the 11/03, when I go down to 50mg, I stay there for 30 days... and each dose after that I stay there 30 days. So maybe that will help a bit. Cheers !

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Well here’s hoping that you achieve some kind of equilibrium from staying at the same dose for 30 days. Then you may be able to separate the symptoms from the SW from the pred side effects.

Boring! Tell me about it! I was thinking similar the other day, don’t go anywhere, don’t do anything, and decline if it’s offered! As the saying goes, ‘my get up and go got up and went’. I’m all out of oomph.

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YES!!!! My Mom used to say that all the time!!!! Too funny! Boring's better than dead, I guess. ; 0

And fingers crossed 30 days will do the trick!

Cheers!

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For your sake, I certainly hope it will help.

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I am the worst when it comes to steroid withdrawal - cannot get lower than 3mg for 17 months now so HAD to accept it for now..... I tend to say to you that you are expecting too much too soon, listen to all the advice give, I don't need to repeat and you WILL look back and say why did I stress about it all. I recall sitting in the waiting room to see Prof D - 6 month from diagnosis and got chatting to a lady 4 years into her illness, she had managed to get off Prednisolone 6 months prior - I was horrified to say the least. I naively thought the reduction programme given was gospel - how wrong was I?

So back to you - you are at the stage when although you say you are not stressing you are.... I only started to feel normal when I got below 5mg!!...I will add though I have always suffered from allergies and reactions to medication before all of this so am doing pretty dam good considering - you need to talk to yourself the same and you will see a difference - patience my dear from now on....

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Hi Telian, You'll get there! I know you will. I do like your attitude though, "... so HAD to accept it for now." I guess none of us really has a choice do we?

And yes, you are probably right... about me "stressing." I am, I must be.

I am consumed with thinking about these diseases 24/7. Everything I do, everything I eat/drink, everything I DON"T do, pretty much my whole life is dictated by these stupid diseases! So that has got to be stressing me! I am going to try harder to make friends with the them both (GCA & PMR) and try to be patient with and understanding with the course they need follow...

patiencepatiencepatiencepatiencepatiencepatiencepatiencepatience

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You are so funny - keep that sense of humour and concentrate on the knowledge that you will get there too - but without the stress - I'm afraid it takes listening and learning properly (and I've been the worst in doing it) to what you are gleaning on this journey and you, like me, appear to be too damned independent for our own good.

What you are going through is a learning phase and you will be top of the class when you graduate!

I only wished I'd known about this site in the early days instead I've learned the hard way by stressing out when my reduction programme had to be rewritten again and again and again - for even though I've got a good Consultant and GP looking after me you cannot get the same interaction and any better advice than talking to fellow sufferers - and taking the bits that suit you!! You cannot buy that anywhere else.

From one independent to another.

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Hi Tellan, ME? "....to be too damned independent for my own good?" I have NEVER been accused of the before! HA!

I agree. This site has been a Godsend! ...and the fact I found it days after my initial diagnoses, was a miracle!

I suspect you are right, I will be at the top of my class, when all is said and done... if it doesn't kill me first!!!! ; )

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Wasn't an accusation just an observation and not meant in an offensive way by any means but one thing's for sure you will definitely be tops after this masterclass!

I know I'm repeating myself but it is such an advantage you found this sight so quickly after your diagnosis so continue to embrace it and you'll get there.....

PS It won't kill you first as you're already taking a slightly different path (mentally) I feel that already by your responses and that can only be good.

Best wishes mamici1

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Ohhh, sorry my humour and sarcasm did translate!

I was JOKING!

YES, you were right on the money... I am too independent for my own good, gets me into trouble every time.

It's all good!

xx

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Not to worry I'm quite hard backed most of the time - was more worried I'd been offensive - I'm ALWAYS getting into trouble for it yet I only want to help - I've learnt that sometimes the help isn't appreciated and I am trying to curb it! can you believe I have to think very hard before writing in case I offend!

You're a good sport..

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Not at all offensive!!!! It was funny, actually!

My Life Motto - "Sometimes things are better left unsaid... which I generally realise right after I have said them."

: )

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VERY true

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I know just how you feel when you say bored. And patience was a problem for me too. I won't say that I have completely conquered either but I'm definitely much better.

For the boredom I found jigsaw puzzles! A friend bought me one for my birthday. I hadn't done one for absolutely years and I had forgotten how satisfying they can be. It doesn't matter how quickly or slowly you complete them and you can stop and start whenever you like. I even take a photo when I've completed one.

As for the patience, well I have to take that one day at a time in the knowledge that i will improve gradually and acknowledge that is what my body needs now.

Getting on top of the boredom has helped me a great deal as it's sooo frustrating that you can't seem to accomplish anything and it feels like time is slipping away. I did try knitting, crochet and things like that but my arms wouldn't let me do these things. Reading helped but my eyes tire quickly so I can only do this in small doses. So, for me at the moment it's jigsaw puzzles.

Hope this helps x

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Hi Footfairy, thank you! Yes.... time does feel like it is just slipping away and I am accomplishing nothing! One day just kind of melts into the next and there is little if anything to differentiate one day from the last.

I'm happy to hear you "got on top of the boredom," that's half the battle. I have my blog and I enjoyed the paper mache' so back to both me thinks! Thank you, again!

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Daft question. But are your preds coated? You may not be absorbing the full dose? I know some people on here only get a low % of absorption rate, but cannot find the relevant posts.

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Hi Sheffield-Karey, No, I don't think they are. (?) It does not say on the box, and they are a white, chalky colour, not that semi-shiny coating that I'd expect the coated ones to have.

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Gastric coated are red (5mg), brown (2.5mg) and yellow (1mg).

But it shouldn't really matter, most GCA symptoms would go at 80mg even if you didn't absorb all of it and that is the purpose of th titration of the dose - and why some people need more than others.

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Sounds like they are uncoated. Then it’s a mystery why they are not helping your symptoms. You aren’t taking them with anything milky which again hinders apsorption? I take mine with a cuppa and 2 slices of wholemeal toast. My only carbs of the day ...

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Well, I take with Natural Greek Yogurt and water... but a lot of people do. The general consensus (here and Rheumy) seems to be that I am not experiencing PMR "symptoms," per say... but the side effects from high dose steroids for 4 months and perhaps a bit of steroid withdrawal each time I reduce 5 mgs... which is every 10 days.

PMRpro also said, ".... someone has suggested - pred withdrawal symptoms which often mimic the illness for which the pred is being used. It's like an onion - a load of layers, with thin skins between that make you cry."

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Might be worth experimenting taking them with something else - can’t hurt, you can at least rule that out. Hope you start to see improvements soon x

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True, thanks!

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Hello ,does Hemp milk or Almond milk count as milky? It sounds like a silly question but I wondered if it was just Dairy milk. Thank you

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Hi Dewdrop456, I don't think it counts as it's not really "dairy."

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Thank you

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It has nothing to do with dairy milk at all I'm afraid! In fact, there are attempts to stop the manufacturers calling it "milk" since milk is a biological product in its own right with particular characteristics.

Almond milk has little protein and unless fortified it has very little calcium. Large amounts are not good for thyroid function. I eat almonds - I wouldn't drink almond "milk". All it is is soaked almonds that are drained and then liquidised with water and the liquid that is drained off is called almond milk, and has about 2% almonds in it. Hemp milk has less protein but more fat than dairy milk. Both are likely to have added sugar unless you buy unsweetened versions. Hemp milk is claimed to boost the immune system - so do we really want that?

This is a pretty good article about all the different sorts of milk substitutes:

huffingtonpost.co.uk/entry/...

As long as you think "something different to drink" they are fine - but they do not replace dairy milk as a nutritional source. If you want to go vegan - you have to find those nutrients somewhere else.

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Thank you for explaining this and all the other advice that you give to us.

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I love the pictures you post Mami! Those r us for sure.

Same thing at my last appointment with the rheumy ..., all symptoms are from the pred and the answer is to reduce, 10 mg ar a jump. I still feel those symptoms too, not as bad as what you are experiencing... you have really had a time of it. I’ve Been on 40, 45 for 2 months now and about to start going down.

Have you been able to do any more art? That always saves my day. I couldn’t access your photo of the gin masterpiece. Well your writing is art...you have a talent. Hope your day is a good one❤️

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Thank Mstiles, It helps to hear you had similar experience.

Funny you should ask... I bought some balloons yesterday with the idea of doing some more paper mache'! I really enjoyed it and it was easy and cheap and I have a lot of the supplies now!

I had this idea to make paper mache' masks that depict how I'm feeling about my GCA/PMR/Steroid side effects on any given day. : )

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Masks, Great idea! I have an artist friend who did a series of snapshots of herself every day with the title “feeling ..whatever,’.. they were not glam photos!

Love paper mache. What’s your mache technique?

I taught college art before all this and I’m trying to get a few people (not more than 2 or 3!) together to do some easy fun art things. Respite for all.

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Ummmmm, technique? Goopy, flour water... paper... a balloon. Make a mess.

I'm no artist. Until my "monster" (fuelled by the ROIDS!) showed up, I had never displayed a creative/artsy side, ever! She has brought out this creative side, who I'm just trying to get to know...

I love the snapshot idea.. but need something that takes up more of my time.

YES! Get that group together!!!

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Fun with goop! I was actually thinking of paper mache or some kind of paper sculptures using a ton of paper I shredded one day when the manic part of prednisone was kicking in with my new group.

I remember making a paper mache cobra way back in elementary school and painting it green and black

Can’t remember why I came into the kitchen though

The fact that you feel so crappy can help the creative part because you won’t get distracted by socializing, housework .....

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Hahahahahaha. I never remember why I go into the kitchen or any other room!!! Yes, being creative makes me forget about everything else! And since it's usually writing or the the Brighton Gin Bottle Competition, I just sat in one place and did my thing... so no exertion of physical energy!

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Madam Project Manager, it's time to draw on your life experience.

Think back to the many projects you were assigned where you had a clearly defined goal, had a myriad of unknown and unknowable variables over which you had little or no control, and severely limited resources.

What did you do? Did you rant and rave and demand that the variables stand still and that the resourcce allocation change in type and quantity? Well, maybe, at the beginning. Then what did you do? Did you keep wasting time, energy and resources fighting the circumstances? Or did you use what you had and solve the problem?

You accepted the situation, got flexible, resourceful and creative with what you had to work with, and got down to business.

You're the new project. Manage it using your professional skills. Many variables are unknown and unknowable, others range from the weather to random viruses. Your resources are Pred, nutrition, a bit of exercise or activity, help from your loved ones, and lots of rest - physical and mental.

You know how to do this. Time to break out that bag of tricks you've been accumulating all your life, and dedicate it to your new project.

Remember: We get better.

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Oh good on you GOOD_GRIEF!!!! Fabulous analogy! The one think I'm sure of in my lifetime is that I was a "kick ass" Project Manager, to be sure!

And although I may have (at the beginning of each new project) ranted, raved and demand that the either the cost, scope, timeline be changed... I ended up "accepting the situation, got flexible, resourceful and creative with what you had to work with, and got down to business."

Good grief, GOOD_GRIEF... could it be as simple and "MANAGING" the illness and as needed, mitigating the Risks and Issues as they arise?

YOU'RE A GENIUS!!!!!!!

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Not a genius at all.

And yes, the secret to this, and to all of life, is that it's all about managing what we have to get what we need. And once in a while, we can even get what we want if we manage everything else well enough.

Last year at this time, I couldn't reach across the bathtub to reach the water taps on the backwall of the enclosure to take a shower, much less turn the taps. After a couple of weeks of having to ask my Pookie to do it for me at 4AM every morning, I thought and I thought and cast about for a solution. Finally, my glance fell on a nearly empty plastic bottle of mouthwash. I dumped the mouthwash, refilled it about 1/3 with water, and had a tool that let me reach and hit the taps without marking them, allowing me to turn on the water myself.

Mick Jagger and Keith Richards are the geniuses:

"You can't always get what you want

No you can't always get what you want

You can't always get what you want

But if you try sometimes

You just might find

You just might find

You can get what you need"

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BRILLIANT!!!!

Making the simple complex doesn't take ingenuity. Making the complex simple, now, that's ingenuity! ~ Ernie J Zelinski

Perfect song... perfect.

Now it's an ear worm! : )

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And while it might hurt the ears of others, singing very loudly is threaputic.And fun, especially when the dog chimes in. And once my Lucky Dog starts, every dog in the neighborhood joins, even when all the windows and doors are closed against the second Nor'easter in a week.

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Hahahahahahahaha. I don't have a dog (unfortunately) but I do have a feisty, monster, I'm sure she'd like to give it a go!

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Actually, she might back off for a while beause you're being creative and making fun out of nothing, using very little energy to lift your spirits and polish your spoons.

She doesn't like that.

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Hmmmm, I need to get back to being "creative!"

Since I submitted "Divine Gintervention," for judging, I have not been very creative at all.

I think that is part of the of the problem... to much time on my hand to read horror stories on health and medical websites!!!!

...back to the goop, I say! Masks! Paper Mache' Masks.

Now you all know what you can expect from me as your Christmas present!

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The only gift I want is for all of us to be better in body and soul.

And it's a gift only we can give - and first we have to gift it to ourselves.

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DEAL.

...but you know you want an mamici1, priceless original!!!

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Not going to add much more than.....as PMRpro said..Patience....and then some more.

In this world we expect, no demand, instant remedies...well this is one case when no matter how much you demand, stamp your feet, swear, cry, cajole, rant - it ain’t gonna happen.

The sooner you accept that, you don’t have to like it, but you do have to accept it ...you will learn to manage your illness...you don’t have to be best friends, but you have to learn to live with it amicably. If you don’t, life is going to be a misery!

Be positive ...concentrate on what you can do...not what you can’t do!

Sorry for the Pollyanna speech, but get a grip girl😉 you are going to get through it!

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Hi DL, Thanks for the reality check! I needed that!

Please know, I'm trying... I'm really trying. I'm m not even aware that I am fighting it!

My head just won't stop questioning why I feel soooooooo crappy. It keeps asking if these aches, pains and niggles are normal/expected/standard!

It doesn't help that 90% of my symptoms come up under "12 Cardiac Symptoms Women Must Never Ignore." : 0

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"My head just won't stop questioning why I feel soooooooo crappy. It keeps asking if these aches, pains and niggles are normal/expected/standard!"

And the short answer is: Yes. Emphatically, in this context, yes.

And could I suggest restricting your reading of the magazines at your hairdresser? Or their on-line equivalent.

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*laughing* Yes, thank you!

Rimmy suggested earlier that I "lighten up" reading list.

Back to the paper mache' me thinks...

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Hi,

I know what you're going through ..that maybe doesn't help.....but, I can say you will get through this very traumatic time.....life will and does get better.

Don't keep beating yourself up about it. It's not your fault!

Most of the aches, pains niggles are normal/expected/standard - but because there isn't a piece of paper telling you that, you don't believe it!

I know this forum is a lifeline, but is there a local support group you could go to? I've been to one this morning, and just seeing people face to face who know what you're going through, because they are as well, does really help. If nothing else, it makes you realise you are NOT alone, you are not imagining all these strange feelings, and a cup of coffee( or whatever) and a chat never did anyone any harm.

Invisible hugs...

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I suspect where mamici comes from she has a choice!!! Brighton obviously - but also Worthing meet-up.

pmrgca.co.uk/groups/

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Thank you. I do appreciate all the time an patience you and the others afford me.

I still see me as the excited puppy, trying to get out of the box and peeing everywhere!

I just saw a local Brighton group.. they met on Feb 12.. I'm emailing them to see when next meet up is. ; )

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What a useful thread you’ve triggered. I sometimes think I am a freak for still feeling bad at low levels because people don’t really describe the suffering. I’ve had plateaus of feeling better but this last bit is confusing (6 mgs) so symptomatic! The recovery from these diseases is not linear at all and can be much helped by external diversion. Tell Mr White to divert you.

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Ahhhhh, SheffieldJane, I feel guilty admitting that I'm happy you are here with me... but misery does love company! I'm a little disappointed every time I hear someone is struggling at 5, 6, 7, 10 mg... I thought all my problems would be solved if I could just get to a low dose. No such luck, huh? Okay.. time to manage and mitigate!

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The struggles below 10mg are of a different genre. They aren't your problem at the moment. Just take one thing at a time.

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Yup.. I hear ya! I hear ya... One day at a time. Just like an alcoholic!

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Having read the paper that PMRPro attached to her post, I have come to the conclusion that I would feel safer being treated for GCA on the high doses, getting all the worst case scenarios completely zapped than often wondering whether the PMR I have been diagnosed with is going to develop towards the GCA end of the spectrum one day. As you can see I understood a relatively low percentage of the paper. Seeing Sarah Mackie soon ( Rheumatologist). I am in safe hands.

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Oooooo lucky you! Good luck with that!!!! I hope she is a miracle worker for you!!!!

Yeah, I am re-reading the paper and PMRpro's response tomorrow when I am sharper...

I like what she wrote about, "... someone has suggested - pred withdrawal symptoms which often mimic the illness for which the pred is being used. It's like an onion - a load of layers, with thin skins between that make you cry."

That made sense to me and explained why I THINK I'm having PMR symptoms when really I'm having the side effects of high dose steroid and steroid withdrawal symptoms...

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Sometimes I cannot read this bl**dy disease at all! I just know it hurts. Like riding a bike, when you think about it too much you fall off and the precious equilibrium you have achieved scatters to the four winds.

Going to see the end of term production of the famous theatre school, tomorrow, that Benedict Cumberbatch went to ( husband’s work). All that excitement and hope, maybe it will rub off.

Do I feel like it? Guess.

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Ohhhh, maybe you'll really enjoy it! Maybe you won't. : ( Mr White has a habit of surprising me with tickets to Stand Up Comedy acts here in Brighton... which is something we used to love doing together. He has no idea that just the thought of me getting ready for something and leaving the house at 7:00pm, is now my worst nightmare now! : (

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It's time, methinks, to post this again,

Things Take Time, a Grook by Piet Hein:

T.T.T.

Put up in a place

where it's easy to see

the cryptic admonishment

T.T.T.

When you feel how depressingly

slowly you climb,

it's well to remember that

Things Take Time.

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LOVE IT!

T.T.T. a good motto to live by

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Oh mamici! So many of us will identify with , what you are going through. As I said before, and PMRpro too, PATIENCE. A very hard word, but the only way. I found that it was not good to put a time/date for coming off Pred. Yes, 12 years ago, I was saying'I'll be off them by Xmas/Easter/my birthday,' and so on. Despair sets in. My journey would have been 'easier' if I had known about Kate's book and this incredible forum, sooner. I tried to taper from 7mg, recently, didn't work, and now back to 7mg. My hormones, at present, are all over the place, and everybody/everything gets on my nerves.It'll pass, just as what you are experiencing, WILL pass.x

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Hi karools16, Wow... see struggles at 7mg!

So the fact that I'm at 55mg, is not the issue. I need to let go of my expectations and accept whatever side effects each dose gives to me because apparently there is no "side effect free" dose!!!!!

12 years, wowsers. You are a Steroid Rock Star!!!!!

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It depends - the dose is not the defining item, it is the patient and their particular version of GCA/PMR. Usually GCA is easier to dispose of than "just" PMR - and I suspect that is because many of us with PMR really have a cross-over that is closer to GCA but we are never identified and managed as such. On that basis - you are a step ahead of some of us.

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Not sure I understand... so I had PMR for a long time (without a formal diagnosis or treatment) and it morphed into GCA (which was diagnosed an treated). The GCA now seems to be gone... but the PMR which I was never really aware really (other than unrelated, nagging aches and pains that were never connected).

Now, I just suffer from the residual side effects of the cure .

...but how am I step ahead?

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Because your PMR that was a symptom of GCA turned into full-blown GCA - and has been recognised and now managed. Had you had the PMR diagnosis earlier and it had been treated - you MAYBE wouldn't have progressed. There is no guarantee but Dejaco says that is possible

academic.oup.com/rheumatolo...

You are confusing what you know of PMR with what you are experiencing of GCA and high dose pred. And as someone has suggested - pred withdrawal symptoms which often mimic the illness for which the pred is being used. It's like an onion - a load of layers, with thin skins between that make you cry.

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GOT IT!!!!! GOTIT! It took me awhile!!!!! ... but I got there in the end!

THANKS, now it makes perfect sense!!!!! I am confusing what I KNOW about PMR with what I'm experiencing of GCA and high dose pred!!!

PERFECT!!!!!

CHEERS!!!!

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I enjoy reading your posts,,,they always make me smile,,,good for the soul!!!

You have a great sense of humor,,,we could all use a good laugh right about now!!!

Thank you mamici1

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Ohhh, thanks carolpatriarco01, Nice of you to say! I appreciate your support and if I make you smile or laugh al the better!!!!!

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Hi again Melissa

You have been getting some great support here I can see from so many insightful and experienced people - what a fantastic forum this is !! As I mentioned before it is clear each of us seems to have in many ways an individual experience although obviously the material we derive this from - the substance - is something we call - 'PMR' and/or 'GCA'.

This thread has made me reflect a little more kindly upon those doctors who must try to decipher what is going on from so many 'ambiguous' and 'variable' (to use Sarah Mackie's terminology) symptoms. I for one was surprised for example, to read how relatively 'dramatic' your Pred withdrawal symptoms have been - having not experienced those myself - but it seems even at those high doses this is more common than I thought. But regardless of what any of us have experienced ourselves or think about these things you are still the person who is struggling with them at present - so I just wanted to also say in an 'old fashioned' way that I hope you feel MUCH better really soon !!

Rimmy

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I so love you Rimmy... truly you are my sister from another mother!

And today on International Women's Day (not that one day is near enough!!!!) I celebrate you and all your awesomeness!!!

Thank you.

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Thank YOU so much Melissa !! - what a delightful thing to say - I feel the same familiarity - and really love that super generous adjective "awesomeness" - what a descriptor to (ever) be able live up to. And I agree that one day's celebration of women is not enough - not nearly - I think in fact IWD should be 'EVERY' day - reflecting the undeniable reality that women everywhere and every day are so courageously 'holding up the world' .

R.

X

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I'm currently on 30mg pred. Twice I've gone down to 25mg and my GCA has flared. I think I'm learning to live with the constant fatigue, brain fog and 'flu-like symptoms'. I take great pleasure in small things that give me a sense of achievedment. At the moment I'm knitting up my lifetime's accumulated left-overs of 4 ply yarn into small garments that go to charity. I'm determined to use it all up - I'll use any short lengths for decorative embroidery. My alternative occupation is completing jigsaw puzzles. The last one was L.S. Lowry's 'Coming from the Mill', my current one is a picture of some very exotic frogs - both of them very challenging and rewarding when finished.

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Good on you Marijo1951, what a lovely thing to do for charity!

...and hey, maybe third times a charm, with the taper down! Good luck when you try again!

Knitting? Hmmmm? I have always wanted to learn to knit... not jumpers and scarves, but BIG, BOLD CHUNKY wall sculptures!!! I see this huge, circular, chunky piece done is a silver, thick, metallic, course yarn... (?)

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I stick to the more conventional jumpers and scarves etc, having had 2 husbands, 4 children and 4 grandchildren I suppose, as well as nieces and nephews. Regarding the tapering I'm due to reduce to 25mg in a couple of weeks, but I'm now taking Methotrexate. We'll find out if it makes any difference. Thanks for the kind words.

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I do hope it makes a BIG difference for you. Good luck with the taper down.. fingers crossed that it all goes well!!!!

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Great creative idea Melissa- for which you'd need to use broom handles or similar dimensions - but to learn essentials perhaps knit a bulky scarf first in a basic purl or stocking stitch. Great thing is you CAN learn to knit online so easily these days - videos are best and youtube has hundreds (tho avoid the ones in Hindi perhaps- unless you are a speaker). I am a knitter from way back it always relaxed me - and I also have an obsession with those exquisite vintage Fair Isles garments - although have only managed a few contemporary ones myself - but I have made a lot of patterns up which becomes easier the longer you do it. These days I prefer not to read ultra complex patterns but knit things where I hardly have to look - so I can multitask (LOL). My aunt in her 80s is still a fab knitter - she did it for dept stores in Canada for years and has also knitted literally 1000's of garments for charity - she says with enough yarn to circle the earth several times and to go to the moon and back ... IMAGINE ..!!

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Thanks Rimmy, good tip! I'll check out the online videos, as I wouldn't know the difference between a "basic purl" and a "stocking stitch" if I tripped over them!

And... "yeah," I will avoid the videos in Hindi! ...also a good tip!

I'll bet with your creativity and fashion sense, you knotted some fab things, didn't you?? Oh.. I just googled "vintage Fair Isles garments," BEAUTIFUL!!!!!

Good on your Aunt! "1000's of garments for charity," isn't that just so very kind and generous! I hope her good karma has caught up with her... she deserves it!

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It sounds like your wall sculpture will be fabulous ! Please create it and show it to us.

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Working on PMR/GCA Masks right now... will def post! xx

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Thank you that will be great. I am particularly interested in seeing how your wall wool sculpture will turn out though. Your idea sounds fantastic.

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Oh my goodness Melissa you're going through the mill at the moment with all those different symptoms. I do hope that everything starts to settle down for you - as you say, maybe when you come to rest at one dose for a bit longer. Just a thought - have you tried listening to some sort of "guided relaxation" or meditation CD? This is something I try to do every afternoon, just for half an hour on the bed. My thinking is, if these diseases are brought on in part by stress, then anything we can do to help the body de-stress and unwind has got to be a good thing. Also I find them quite good at slowing down a racing mind.

Sending you lots of love and virtual hugs,

Kathryn

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Thank you Kathryn, That is a great idea... I have some CDs that will be perfect actually. I shall dig them out! It definitely won't hurt, that's for sure!!!! Cheers!!!

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I think you have the gift of verbalising what a lot of folk are going through or have gone through. I think many of us in the past have been get up and goers and this / these conditions just have stopped us in our tracks. We don't understand it, we want to work it all out and we want a definite plan forwards to deal with it but unfortunately it doesn't often play ball. Loved the advice from Goodgrief about using those skills you already have to use yourself as your next project. You've been on such a rollacoster and reducing very frequently must have muddied the waters. When you get to your three week taper plan I'm sure it will be a little more understandable. In fact Melissa I feel you're going to be a great encourager and supporter of others on this journey because of all you've experienced and your ability to put into writing what a lot have felt or experienced. Patience is the key isn't it - a new skill that many of us, me included, are having to learn.

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Well thank you so very much Jackoh! What kind, lovely words... You have brightened my day! Thank you.

If my words provide a smidgen of encouragement or support to someone going through this "hell," then at least I would have reason to be more accepting and at peace with my journey. I'd see at least some positive impacts coming out of this nightmare!

Thank you so very much.

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Oh, Melissa, I'm so sorry this is so rough, for all of us. In comparison, my symptoms, are relatively minor. But leaving work this morning, I thought to myself, I'm so done with this; I just don't want to be sick anymore, and I want to stop taking the dang pills. I thought of you and others who are struggling with this disease, and told myself to buck up. The prednisone works fairly well for me, and I'm beginning to taper. But, I feel my evil friend lurking in my arms, pain but not quite pain, and I'm afraid of a flare. I'm finally worrying about the damage the prednisone is doing to my body (the pain relief superseded any other concerns initially.) Horrible quandary. You are an inspiration, lady. I'm just sorry you feel like crap.

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Thank you Testadura! That post was written a month ago and I must say I have had a few weeks of feeling pretty "okay." I still struggle with side effects of the Pred, because I am taking 50 mg a day and have never been lower than 45mg, but maybe my body is getting more used to it, as I don't seem to have near as many horrible side effects. Yes, I too "feel my evil friend lurking in my arms," and legs. As you say it is not a pain, but they feel like heavy weights.... Hopefully you will avoid a full fledged flare!!!! Fingers crossed. Thank you for thinking I am an inspiration... I'm not sure how, but I appreciate you saying that!!! Be wel and be happy! This to shall pass! xxx

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Hi mamic1, I too have been dealing will awful disease. (1 1/2 years now). The first year was spent mostly on the sofa, with naps daily. Barely leaving the house. No energy at all ! Now it seem like a every other day life. I’m even doing a little sewing these days , so hang in there and go with the flow as they say!I know easier said than done. maryanne

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Thank you for sharing that! A light at the end of the tunnel!

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