Flare of PMR after GCA diagnosis
Posted , 11 users are following.
I have had PMR since March this year and had pretty much settled on 20mg prednisone. Then just over a week ago became very unwell head and jaw pain, completely drained etc.I was referred to a rheumatologist in the emergency department of our main hospital 70 kms away and had a temporal Doppler/ ultrasound which confirmed I have GCA with inflamed and partially blocked temporal and parietal arteries and possibly inflamed coronary arteries. I am now on 75 mg pred, methotrexate, aspirin etc.
Since the GCA diagnosis my PMR pain has flared, I feel,completely exhausted and spent most of yesterday in bed.
I am normally quite an active person who at least walks the dog every day.
Crazy as it may seem my dilemma is am I giving in to this should I push myself to get up and dressed today or should I have another day of languishing in the pit.
0 likes, 15 replies
MariGrace Guest
Posted
Oh, Joan, reading your note made me so sorry that you are going through all of the pain and trauma of PMR and GCA.
It doesn't read that you are 'giving in' to anything, but instead, taking care of yourself. Your issues are serious ones. Listen to your body, know we are out here with you and will be
eager to hear how you are doing.
You were able to get prompt treatment - that is very positive. Thankful that you have good doctors!
Thinking of you. MariGrace
Guest MariGrace
Posted
Not sure if this is an Australian forum, but I live @bout 70 kms South of Perth in Western Australia, so I am one sat outside in the sun, relaxing and reading.
A good friend brought me a coffee from our favourite coffee shop so mood wise things have improved.
I must be honest my diagnosis particularly the GCA and knowing which arteries are affected scares me as does the high dose of steroids. My fasting blood sugar is already way to high so much so my GP said doing a glucose tolerance test was pointless as it would show diabetes.
Harrie4 Guest
Posted
You’re not alone. You’ve found your way to a community full of of smart, resilient, informed and empathetic fellow travelers and many of them have experienced what you are coming to grips with right now. Above all, treat yourself well. No one can do this part for you. Get lots of sleep and let this change sink in. Your fearfulness is a realistic response. But know that it will slowly diminish as you gain a deeper understanding of the disorder and the resources and options you have at your disposal. As Eileen notes, you are blessed by access to top medical resources and that’s complemented by the experience you’ll see here.
Sending you an encouraging hug!
EileenH Guest
Posted
Welcome!
You have a serious systemic illness and are on heavy duty medication for it. Physically speaking PMR can be worse in many ways - but it is not such a serious systemic problem. You are poorly - and allowed to behave as a poorly person for now. It will get better.
I was just about to ask where you are - prednisone and kms meant Canada or Australiaa rather than the USA! But I saved myself - it occurred to me to scroll down the discussion!
This forum is based in the UK, it was the first for PMR and GCA but there is another one at HealthUnlocked (also UK), started some years later, where there are several Australian and New Zealand members, most of them still living at home though a few are exiles. I'm not sure if there is anyone in Western Australia but what you do have in Perth is probably one of the top departments with regard to PMR/GCA. I met some of your doctors a couple of years ago at the OMERACT rheumatology meeting which this year was held in Australia but the cost was too high for we patients to get much of a look-in - i was gutted!
However - no you are not "giving in", you are being sensible and resting because you are ill. "Giving in" will be if you are still there next week and not sitting up and taking interest. Rest and sleep are important components of your recovery - not to the exclusion of all else in the long run but for now. 75mg is a high dose of pred - and it can have a lot of effects itself. But you won't be on it forever and once you start to reduce you will start to feel better.
ptolemy Guest
Posted
lynda62707 ptolemy
Posted
2 days ago I was unable to take my daily dosage of prednisone till Late afternoon. I usually take it in early am. Man, what a difference a few hours makes! By the time I was able to take it, I was in terrible pain! Is this normal to be so quick to return 2 pain in such a short period of time? Also, much 2 my dismay, I've attempted to watch 3 movies now w/ my daughter (whom I'm visiting in Texas) and embarrassling fallen asleep about 10-15m through each movie! She's been very gracious about it (mostly joking), but I feel badly. But that's not the worst!! Yesterday she had bought us tickets to see a play, (and yes, you guessed it!) I FELL ASLEEP AGAIN!!) It was a musical for God's sake! I'm so incredibly embarrassed and feel so bad for her. Please tell me this has happened to someone else out there and I'm just not a lousy mom!!
MariGrace lynda62707
Posted
Lynda, something similar has happened to me. I never sleep in, one day I did, throwing my med schedule off. Wow. It was very bad and it took days to straighten out. My legs and arms were as though I had never been on prednisone. Nearly had to increase it. The fatigue that accompanies both pmr and the meds we take can be a challenge!
Did you change time zones?
That will cause sleep issues, too, especially while battling a disease.
You are not a bad mom.
You are a PMR mom. Give yourself some grace.
My son is in TX. We are going to visit him this weekend. Can't wait! We live in Arkansas so the trip isn't far.
MariGrace
EileenH lynda62707
Posted
One criterion for a PMR diagnosis is pain that goes with a suitable dose of pred - and returns in a similar time scale when you stop it. I was fine within 6 hours of taking my first dose of 15mg, it was a taper and on one day on 5mg I was fine, the next day, just 6 hours after missing the first dose I was in bed in more pain than before pred.
You really must try to ensure that you take your dose within a short time of when it is due. It isn't just the return of pain - after a few weeks on pred you body is less able to produce its own natural corticosteroid, cortisol, in response to stress of any sort. You are travelling - that is stress. And that will add to the pain and stiffness if you miss the pred dose.
It may sound harsh but there is no good excuse for missing your medication. Set an alarm and ensure you have a small drink with you and something to eat if you need that. When crossing time zones you need to take that into consideration too - how you choose to do it is up to you and depends on how big the time shift is. But it is important.
ptolemy lynda62707
Posted
I tend to fall asleep while watching TV. I have everything recorded nowadays so I can actually go back and check where I fell asleep. It can take me a couple of hours to watch a one hour program, because of going to sleep. I seem to fall asleep virtually instantaneously.
Anhaga lynda62707
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EileenH Anhaga
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I do remember falling asleep during the first act of some Wagner opera or other. But Wagner is a bit like that - you've been sitting there for 3 hours and look at your watch and it is only 25 minutes into the first act...
lynda62707 Anhaga
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LOLOL....thanks for your Great response! I don't feel quite so bad now. I'm just grateful I have a very understanding daughter, who's able 2 see the humor in most all situations! My only sadness right now is my inability 2 lift my 5yr. old grandson and play on the floor with them both! I've always been one for creating great memories, and it's just sorta difficult right now😢.
Anhaga lynda62707
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Sit at the table and make models out of play dough. Or make "aggression cookies" a never fail oatmeal cookie, sure there are recipes on the internet. My daughter in law is a baker and she had two visiting young nephews, both pre-school at the time, baking up a storm, so the little ones do love to do things like that, just find an easy recipe which won't be hard on you to manage the cooing of.
Anhaga
Posted
Elijo Guest
Posted