Those that can't do... rant.
“Head to Toe” – A layperson’s Guide to the Signs ... - PMRGCAuk
“Head to Toe” – A layperson’s Guide to the Signs and Symptoms of PMR/GCA; and the Possible Side Effects of High Dose Steroids
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139 Replies
•
Oh mamici, dear God in heaven this is so not typical, you poor soul.
I ticked every one of the 30 or so mental/ emotional symptoms, and some of the PMR more typical symptoms (from earlier in my disease process). I had groin pain that prevented mobility - not so much hips. I realise that although I have reached the moaning 7 s ( mgs) I am in fact a million miles from that state now two years on and gloom has magnified the general winter malaise and my old friend Arthur Itus has returned from his holidays. I have “only” PMR. Your head is so tormented. What can they do for you? Save this blog for the Actemra eligibility panel.
Has anyone suggested that there are other conditions at work in you? Thank god the GCA was diagnosed. Did you never get the Pred miracle at all? Blessed relief, take up your bed and walk, euphoria?
Respect mamic! You are a warrior amongst women.
May all that is good give you relief and wise physicians.
• in reply toSheffieldJane
Dear Jane, No worries... It's all good. I don't have all of the signs, symptoms, side effects all at the same time or all at once! Thank goodness!!!!
Yes, I did get relief at the beginning on 60 mg. I felt AMAZING, until I tapered to 45mg and then "crashed and burned." I had to be taken up to 80mg to get same relief I had received previously at 60 mg. Then I think that's when the steroid side effects and steroid withdrawal symptoms started to take hold... and that's when 90% of the 30+ on the list started to creep in...
I'm no warrior, I'm just a vocal victim, who's stuck between a rock and a hard place... just like YOU!
xxxx
SheffieldJane• in reply to
That is slightly reassuring, I can now see the muddle of high dose Pred, dropping too low, a flare, going right back up and the 24 month unchecked inflammation at play here.
All the newbies can come out of their dead faint then?
I prefer a vocal warrior as a descriptor, there cannot be enough vocal warriors.
Stuck between a rock and a hard place, you only have your voice.
✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨
• in reply toSheffieldJane
So true. ....and YES, I like "Vocal Warrior," I don't like being the victim, even if that's what I am! ; )
Wow, Mamici, I really related to several of the unusual symptoms you described, like the stabbing pains in different parts of your head.. and I don't even have GCA and the highest pred dose l ve been on is 20mg..you sure seem to be a candidate for Actemra, hope you get it soon. . How you have the strength and motivation to write such great stuff in your condition amazes me. You put me to shame!
• in reply toGaijin
Thank you Gaijin, I appreciate your support and kind words. I am glad you could relate to some of my signs, symptoms, side effects... it makes me realise I am not alone and I am not going crazy! : ) I find the writing very therapeutic... "Better out, than in," as they say!!!!
Thank you again.
• in reply toGaijin
...oh and yes we will see what Rheumy says about Actemra! Although side effects are alarming at best!!!
Ohhh good! Thanks for that feedback.. I was hoping it might useful and FUNNY to people just starting their journey!!
Thank you!!!!
Like I said, you may get some, you may get none of the signs, symptoms, side effects... either way, you are hopefully better informed and prepared for whatever comes your way!
And thank you for the well wishes! : )
I loved this blog. Very informative and humorous ( in a positive way). I am a newbie “PMRer”, and you put my mind at ease ( especially about the feet, mine go numb and one foot is actually much paler the other ( bath helps restore balance). I wish you relief, and successful recovery. Keep bloggin - you’re a natural ✔️
• in reply toaladymo
Thank you... thank you so very much. Thank again thank you for the well wishes!
I hope your PMR journey is quick and uneventful!
If you see a "sign" that says GCA... GO THE OTHER WAY!!!!!
Clearly I have demonstrated a sense of humour failure. In spite of your creative and humorous presentation of your symptoms, I couldn’t help feeling the suffering underneath and I mean feeling.
• in reply toSheffieldJane
Nope, I think we're good... "Feeling" is fantastic!
You're a sensitive soul... and it moved you, that's quite a compliment... thank you!!!!!
I can’t watch violence on TV without getting an actual pain, so with this fashion for protracted torture scenes in shows, has me behind a pillow a lot of the time. A therapist told me that I had too much empathy. Who knew you could?
Interesting. You know those ‘funny’ videos when people fall off skate boards and crash? They give me actual pain too. I cannot watch them. I’ve never been one for horror or torture type films, just can’t be doing with them.
Apparently it’s a thing, you actually do feel another’s pain. What about nursing and all the injuries you saw and uncomfortable procedures you had to do?
I’m not even great with childhood accidents, I give the appearance of deathly calm but I am absolutely catastrophising inside. Bad for a Granny. Fortunately Theo is a careful little soul, mindful of accidents. Mummy thought it was my fault, but he’s the same 6 months on.
Nursing (I have found) is different. One has to maintain a professional calm (a bit like ducks swimming smoothly, whilst underneath legs are paddling madly!) plus there’s a big difference when you can actually do something to help. Even if that help is just talking or explaining.
It’s the things that I am impotent to help that make me shudder and ache. Although, occasional views of paramedic type TV progs don’t bother me as the professionals are present.
My last job involved helping the victims of domestic violence. I heard such horrific accounts. You’re right, a professional calm and a strong desire to get the person to safety or help in any possible way, stops the over identification, you’re too busy.
• in reply toSheffieldJane
Yeah, I agree... I can't watch any horror or overly violent stuff either; I get visibly stressed and uncomfortable.
Mstiles• in reply to
Me too. Why show this? I don’t understand how people can watch it. “Too sensitive” has been used to describe me.
Me neither SJ - but trying to find something to watch which ISN'T filled with violence - often totally gratuitous is increasingly difficult - just the emphasis on crime programmes highlights this. Not only is much 'entertainment' loaded with forensic and sometimes pornographised violence it often extends into drawn out and revolting torture scenes and THIS is meant for for our 'entertainment'.
I can understand in certain contexts - and given the world is full of violence in many domestic and social/historical contexts it cannot be avoided completely but there is a focus on detail and graphic portrayals now which pushes the envelope just TOO far - for me anyway. Then there is the line between 'deconstruction and reconstruction' - are we MEANT to be critiquing this stuff or are these images 'recipes' for re-enacting it - that obviously must depend on who is watching and interpreting these scenes and regrettably I don't think the critique is sometimes there .... When I was child and 'discovered' there WAS such a thing as 'torture' I just couldn't understand it - and still can't ....
Rimmy
It has got so much worse, are they competing with computer games? It seems to be added in ,to feed what appetite in what kind of viewer?
Everything has to be so extreme these days, no wonder kids are confused.
You may have missed one - or my Pred head missed reading it. Does the back of your head ever feel like it’s filled with sand? I swear, there are times I feel like someone has inserted a slightly heavy sand bag inside my head. Are there others that experience this?
• in reply toInsight329
Hmmmmm, no I have not experienced that one!!!!!! I get heavy arms and very heavy legs... a heavy, pressure in my chest... my head gets foggy, achy, fuzzy, painful, but not heavy!
You found a NEW one!!!!! Yeah!!!!!!!!!!
Good job!
Insight329• in reply to
Snort, yippee for me.
As a child, i would play with a sandbag paperweight my grandfather had. Some days I feel like that has been surgically implanted in my head.
• in reply toInsight329
Hehehehehehehe. Well, let's hope not!!!!
• in reply toInsight329
Sounds like when I feel my head falls off. Or rather feels that way. It doesn't seem to have happened as much lately perhaps due to stretches. It's more crepitis now. Mmm maybe my head fell off and is scraping bone now 😂😂
• in reply to
OH NO!!!! That doesn't sound nice at all.
That’s interesting Insight. I get a really bad pain where the skull joins the neck. I describe it as if I have been hit on the back of the head with a cricket bat. I thought it was Cervical Spondylosis and too much screen time. It predates my PMR diagnosis but coincides with early retirement from a job that involved a lot of computer work. Your description sounds like when it is wearing off.
These diseases are so freaky in how many different ways they present. I’m so sorry you get that ‘hit by a bat’ pain. That sounds so painful!
They are freaky and we don’t tell doctors the half of it because they don’t have time and they get muddled and you lose credibility. Yet that peculiar symptom may be the key to it all.
I got that same type of pain, at the base of my skull when turning my head a certain way on one side, before the headache in the occipital area, same side.
• in reply toSheffieldJane
That pain was the worst! It is gone now and I have more range of motion in my neck, but not much more,, I still occasionally get stiffness in my neck and under that skull ridge....
• in reply to
I have always had discomfort in that area when I laugh a lot and when I used to dance when a bit tipsy. The addition with PMR, or at the same time, is a sharp stabbing pain in the left hand side of my neck if I look down to where a breast pocket might be. The base of my skull was swollen over the weekend...not the first time. I tend to just ignore it now...like the physio Dr and rheumy. It's all part of life's rich tapestry.
• in reply to
Hmmmmm? I have not noticed swelling.. but then again I have never really looked!
Okay, your comment, " I tend to just ignore it now...like the physio Dr and rheumy," made me laugh out loud! Hahahahahahahahaha!
Ahh, yes the RICH TAPESTRY!
Tough honest post Mami. Beautiful. You do it your way. Fine writing. We all hope the best for each other. Always a rainbow! Well sometimes in Brum!
• in reply to
Awe, thank you Pepperdoggie, appreciate the support! ...and the lovely words!
We do all "hope for the best" for each other... Always a rainbow back at ya!!!!!
Cheers.
Love it, gives a good description of the stuff we have to go through, some more than others, but we never know what is going to hit us or when.
• in reply toJulianJ
Thank you Julianj! We never do know, do we?
Hopefully, it will provide the Newbie's (newer than me!) with an idea of things they MAY encounter along the way; and they won't feel too freaked out by it, because they've heard of it!
Thanks.
loss of appetite???? I'm starving all the time!
I’ve never had a brilliant appetite. But pre-pred I lost a significant amount of weight. Further loss of appetite? Or simply because I couldn’t be bothered?
Then I met pred and if it wasn’t nailed down I ate it 
Gained a stone, then cut my carbs and am keeping my weight stable now.
I am trying to cut the carbs.. I do fine for a few days and then maniacally eat like a starved crazed mad woman. I have gained about 12 lbs since I started the prednisone in November. (but my wrinkly face is all smooth now! )
Snap I felt faintly sick all the time before Pred and got quite thin, now I am a gannet ( for Pepperdoggie from Brum) a bird that eats greedily all the time.
• in reply toSheffieldJane
Hey! Jane. I did have a smidgen of education before the mines closed down you know!!!
SheffieldJane• in reply to
Gannet was something I remember hearing when I lived in Birmingham for a few years. The interpretation was incase it was just a Brummy saying. 😊
I don't have an appetite, but I don't loose any weight!!!!! Worst nightmare!
Nice job, Melissa! PMR and GCA are certainly not for sissies!
• in reply totestadura
HA! No they are not!!
Like ageing!
Many thanks for your support and kind words.
Here’s an odd one. I’ve written before about having to go bra-less at the beginning due to rib pains. Now I wear a light bra, no hooks or wires. Three or four times now I’ve got into the shower first thing in the morning and had the distinct feeling that I have a bra on! I wonder if this is a milder version of your ‘elephant on your chest’?
One thought re your change of taste...I get a chemical taste with a cup of tea sometimes. Not absolutely sure, but it might be a prelude to oral thrush for me. Last time I experienced it I treated myself for thrush and the odd taste went. Worth a check?
The heavy back/between shoulder blades, sounds like something I went to the chiro for before the typical shoulders/hips came along. I remember describing to her ‘my tired back’.
I can tick off lots (most) of your PMR symptoms, and some head stuff 
You know, reading that long list, it’s no wonder we feel unwell is it?
• in reply toSoraya_PMR
HA! It's a wonder we are still here to talk and laugh about it!!!!! : \
Sorry if I made you feel like a freak Melissa but it seemed really extreme to me especially not abating with Pred. I need to engage brain before I type, sorry.
• in reply toSheffieldJane
Nope... Not at all! And it IS really extreme.
I definitely feel way worse since being on Pred, than before it.
So that is kind of freaky, right?
I felt really tired and had the head, neck and shoulder issues, but now... THANKS to Pred I have experienced so much more of what PMR, GCA and steroids have to offer!!! Hahahaha!
PS - Dr Hughes had said I may be "Steroid resistant" and I'm still trying to understand what that means exactly?
SheffieldJane• in reply to
Well it’s got everyone thinking, and talking openly about their symptoms, especially the peculiar ones. It’s better than being frightened and feeling alone. When I woke up this morning I felt better than I have for ages.
• in reply toSheffieldJane
OMG! That is fabulous!!!!!!! GOOD ON YOU!!!!! And yes, it better than being frightened and feeling alone!
I unfortunately have a NEW ONE!!!!! Hahahahaha! Pain and a bit of swollenness, behind my right knee. (?) Of course my mind immediately raced to DVT!!!!! : 0
SheffieldJane• in reply to
Someone posted last week about Baker’s Cysts behind her knee. See if that fits.
I am trying to find out how to copy and paste links to articles using an IPad. 🤨
• in reply toSheffieldJane
Oh my goodness... Too funny. I just returned from doctor and she thought Baker's Cysts! She ordered an ultra-sound, but that will take awhile....
Hmmmm, How did I miss that post?????
Thank you so much! If you keep doing my research, I'll have to start paying you!!!!!
: 0
Insight329• in reply to
So what DOES that mean? Did you get any relief from the Pred? Or not as much as a non-steroid resistant patient gets? (I was going to say normal, but that would imply you aren’t normal. But as I type that I remember you ARE a special person (your witing is incredible, you’re extremely compassionate. . .. Ok, my loopy brain is looping...get back on track.) Or did it trick you and now you are suffering from the side effects of the GCA/PMR and Pred without giving you any or much relief? And if that’s the case, did Dr. Hughes offer up any advice on alternative treatment? Actemra? Have you been able to have that discussion?
• in reply toInsight329
I am so not normal and I do not take offence to that suggestion! : ) I find the whole thing quite baffling!!!!
I initially had the more prominent GCA symptoms and the Pred (60mg) made those go away. I felt amazing! Then we started a taper down and when I hit 45mg, I became sick as a dog.
When put back on 60mg there was no improvement. She had to put me on 80 to get me where I had been.
However, at 80mg, I began to have all these other "signs, symptoms, side effects." I have now tapered down to 50mg, but still have many of these oddities! I'd say I feel worse now, than I did when GCA originally hit! That's weird, right?
My Rheumy, GP and experts on this site have attributed a lot of these things to either high dose steroid "side effects," or steroid withdrawal "symptoms."
As far as me being "resistant," I have no idea what it means ! I saw Dr H only once, for a second opinion... I may write to him and ask him to explain the comment further.
By the way... I like your loop the loop bran thinking. I can relate to it!!!! : )
Insight329• in reply to
My Internal Med doc started me on 40mg. When I saw my Rheumy for the first time, he warned that we might need to increase up to 60 but thankfully we didn’t. I know what I felt like at 40 and that can only be described as a speeding trainwreck (operative word speeding). Your dosing journey has been a wild ride! I know these words are a broken record, but hopefully as you get down to normal ranges, you’ll start to lose some of those side effects. Strike that - I hope you lose ALL of the side effects. Let’s shoot for the moon!
• in reply toInsight329
Thank you Insight, I appreciate that! I really do. Yes, "speeding train wreck," perfect description! I have never been below 45mg in 126 days. I was already way up over a total of 4,000 mg, when I went to se Dr H. on January 30th... I can't imagine what my total is now????? Thank you for well wishes... I wish you smooth sailing on your PMR/GCA journey as well... and may it end for you soon!
• in reply to
Perhaps your GCA symptoms would have got worse as they progressed and need a long time to ease. Once we are diagnosed and start thinking back I bet there loads/most of us have had symptoms for years untreated. Maybe pred just dammed it up and until enough inflammation calms down its pressing at the dam. Hence more symptoms when you reduced. Hopefully it will calm. Wisely and slowly it goes.
• in reply to
"Wisely and slowly it goes," indeed.
Do these help?
bristol.ac.uk/cellmolmed/ai...
arthritis-research.biomedce...
You maybe need to jump to the 3rd paragraph of the Abstract in the second one.
It is really just a term used when a patient doesn't respond to the dose of pred the doctors are used to finding works - and you needing to go up to 80mg after the induced flare triggered the idea. OTOH, many patients find whether it is GCA or PMR that it can be more difficult to get a flare under control. If you catch a GCA episode quickly then you would imagine that a lower dose might work - but later, as the activity of the a/i bit increases then more pred might be needed. Some patients need more pred simply because their personal bioavailability is closer to the 50% end than the 90% level. So while many patients will respond to 60mg orally very well various aspects all added up mean you might need more than that.
I'd have thought the fact you are now doing well on 55mg suggests you are not totally "steroid resistant". There are experts who have found that starting the steroid treatment with 3 days of very high dose infusions of methylprednisolone works much better: for a start an i.v. gets the steroid there, 100% and instantly. Add to that they use up to 1g/1000mg per day.
• in reply toPMRpro
Yes, thanks for that I will check them out! What you wrote about "steroid resistance" makes sense and seems to apply to my situation. And, I just read an article, this morning, about "the experts who have found that starting the steroid treatment within 3 days of very high dose infusions of methylprednisolone works much better." Wish I had had that option...
I am doing better on 50mg than I was on 80mg, but still not great. I still have daily aches and pains, fatigue, heaviness across shoulders and across chest, legs feel like bags of cement, etc.. I'm okay till about this time of day and then I crash. I never had these symptoms (well except the fatigue) before the high dose (80mg)
I'm just attributing EVERYTHING to either steroid side effects or steroid withdrawal symptoms! If I don't I'll go crazy.
Thanks
Have you tried planning a rest for about an hour or so BEFORE you crash? It can make a big difference and in the end give you more useful time rather than struggling to catch up after the crash.
Don't forget that the underlying cause of the GCA symptoms is still active. It is a serious systemic illness - like real influenza or another serious viral illness. Would you be surprised how you feel if you had real flu, severe viral pneumonia? There is a wide range of such diseases - up to and including Ebola. And they don't go away quickly sometimes.
• in reply toPMRpro
True. True.
And good tip about resting an hour before I actually crash... todays little outing to the doctor took it out of me, so the couch and I have ben best friends all day since noon! And I haven't actually crashed yet!
Have you ever heard of a blog called Despite Lupus by Sara Goreman? Sara can only function by planning that rest AND STICKING TO IT. Missing the nap time for more than one day almost inexorably leads to a flare. Autoimmune disease doesn't differ that much - whatever the label is.
SusyTe• in reply to
Hi Mamici. I seem to remember that Dr H told me that some people only absorb 70% of the Pred so are never totally pain-free - I am one of those. Maybe that is what he meant? 🤔 x
• in reply toSusyTe
Hmmmm? Yes, perhaps. I should have asked at the time, but he was in the middle of a longer explanation about something else and I forgot to go back. Maybe though.
Except that is why you titrate the dose - until you find the oral dose that is right for you. The bioavailability varies from 50% to 90%, 70% is the average. If a person needs 6mg and only absorbs 50%, they need to take 12mg, the person who absorbs 90% will get away with 7mg or so.
Never thought of that! I obviously wasn’t listening properly. I thought he said that some people don’t absorb enough to make them pain free no matter what dose they are on. Sometimes when he is explaining things I can’t take it all in. 🙄
I suppose that may be what he thinks - I think that when people have left-over pain with the starting dose it is either simply not quite enough (and that is why they have increased the recommended levels to up to 25mg) or the pain is due to something else. In PMR for example, if you have a lot of tendinitis and bursitis at the start that can take months for the pain to fade. I wasn't pain-free in the first month - I was near enough pain-free after 6 months. And then there is myofascial pain syndrome - which may respond to pred at a high enough dose - but not necessarily until the spasmed muscles are sorted out.
Oh mami you have said it all and said it brilliantly with style. I’m hoping you get some relief and soon.
Aside from all the pain and stress and worry about the worst case outcome with GCA, you nailed the reason it seems to be so difficult to gain any peace of mind with this disease: “I can’t tell the if the symptom is from GCA/PMR, a side effect of prednisone, a withdrawal symptom, or an something unrelated to PMR/GCA”!! It certainly makes my head ache trying to figure this out and wanting reassurance from my rheumy, that is a struggle too.
• in reply toMstiles
Thank you Mstiles... I appreciate you reading.
Yes, that was an important sentence for me to nail... I struggle (because new steroid induced OCD tendencies) to put all the signs, symptoms and side effects in "tidy little boxes with labels," so that I can pack them away in a drawer... but I just can't seem to ever get them organised!!!!!
• in reply to
Leave a drawer for grey areas.
• in reply to
GREAT idea!!!!!!!
Thanks Melissa - this is a VERY comprehensive 'list' of experiences/symptoms of the whole damned PMR/GCA and Pred 'nightmare' - and we'd all agree I'm sure FAR TOO comprehensive for any one of us to have as an individual - nobody wants to be this 'archetypal' - just 'NOT FAIR' at all !!
Although I have probably had about half this stuff some of the time I can honestly say I feel fortunate to be spared much of it - the 'head' tortures sounded the worst to me - anything with 'heads' is somehow more intense in my perception anyway - probably from a childhood accident which left me with a long scar on my forehead (always hidden by a fringe) - thankfully. I DO feel for you - but as do many others - I admire the fact you have been able to transform all this nastiness into something constructive and often remarkably creative - so all has not been 'lost'.
I also sense some 'new degree' of calmness and reflection in this latest blog which is possibly supported by being able to lower your Pred dose - i for one looking back have realised those high doses were something else - an insight into other parts of me - interesting even at times cathartic - but not something i'd like to go back to in a hurry - still I wouldn't have missed experiencing those intense parts of me for the world.
You know you are very appreciated here Melissa - I wondered where you were even for just a couple of days you weren't on the forum - it wouldn't now be the same - or nearly as interesting here without you !!!
Thanks again for another marvellous contribution
Rimmy
XX
• in reply toRimmy
My Dear Rimmy, Your words mean so very much to me... thank you. From the bottom of my heart, thank you.
I am very happy to hear you have not experienced the myriad of signs, symptoms and side effects that I have! Thank goodness!
Interesting insight on your part... sensing a 'new degree' of calmness and reflection." I'm only down to 50mg, which still seems ridiculously high to me, but maybe my mind is acknowledging the reduction and settling a bit. And, YES, I agree... being on 80 mg was an experience I so hated, but in retrospect... "WOW!" just "WOW!"
And thank you for your very kind words... you really have no idea how much they mean to me.
xxx
Thank you, thank you, thank you Mamici 1. I have cut and pasted your following paragraph into my Remember file. It says it all!
It is often impossible for me to differentiate a disease symptom, from a steroid side effect, from a steroid withdrawal symptom, from a non-related PMR/GCA ache or pain… I guess what I’m trying to say, is that I cannot tell you, what’s what. All I know is that I feel like crap most of the time and just have to deal with it.
• in reply toZhenya
Cool, Zhenya! That is actually MY favourite section of the piece...
I am one who likes order and answers. And I struggle with not being able to mentally "label" and organise things so that they can be put into their proper place.
It just so frustrating not knowing, what's actually causing what!
Maybe I should print it out and paste it al over my house!!!!
fren• in reply to
Oh, how I agree with your sentiment..... 'It just so frustrating not knowing, what's actually causing what!'
It was the inability to walk more than 20 steps before starting to puff and pant, experiencing a suffocating tightening round my hips and abdomen and a sense of overwhelming fatigue, that took me to my GP at the very beginning. (June 2016)
I was sent off for assessment by cardiologist and pneumologist both of whom found nothing specifically wrong, I even had a MRI scan of my lungs which was totally normal. All decided that I would benefit from physio to improve my cardio-respiritory function.
Unfortunately this year long course of therapy started at precisely the same time as I was diagnosed with PMR (Jan 2017) which I reported to the other professionals, who nodded sagely and carried on with their plans.
So nearly 2 year's on from that initial visit to GP there is no change in my walking problem.
The GP thought it was stress, but now thinks it is PMR and will eventually go.
The Rheumy says PMR and it will go sometime, perhaps.
The Cardio says I need more excercises to 'push' my heart function.
The Pneumo says it must be poor lung function and needs rehab.
The Psychologist said it was unresolved bereavement issues and needs counselling.
The Physio said I was just not making enough effort to get through the 'pain barrier' to make it better.
Such kindly inflicted confusion.
And finally --
In preparation for a small group session for clients with breathing problems I had a one to one meeting with the specialist Nurse in charge. I told her I had PMR and she nodded wisely.
Then I saw her write ARTHRITIS on my notes.
Thank you PMRGCAuk I was prepared. I politely pointed out that I did not have that. I produced, from my bag, a wadge of carefully chosen info for her to peruse.
AAAAgh
• in reply tofren
OH MY GOODNESS!, Fern! Unbelievable, but it's so unbelievable, it must be true!!! You couldn't make that stuff up!!! How do you keep your sanity????
fren• in reply to
Exactly the same way as all of us.
I rant and rave and come to the forum to find the funny side of it all.
Keep your chin up Melissa, and keep up the ranting. It provokes excellent group therapy.
• in reply tofren
Good on you! I don't know if I could have showed as much "self control," amongst all the Talking Heads! And yes, group therapy is good for the soul! So I shall keep ranting!
I’ve been looking at Steroid resistance in relation to GCA and it still seems pretty inconclusive, with Methotrexate not showing significant difference in trials when it was used alongside. I am glad that you have Mr/Dr Hughes on your case, a genuine,renowned, interested and compassionate doctor by repute. Googling Steroid Resistance in GCA throws up some quite dense articles.
Yet again you have stimulated a good and useful debate. Thank you.
• in reply toSheffieldJane
Ooooo, I don't have Dr H, really. I saw him for a second opinion, as he is not close to me and he seemed to have a lot of confidence in my Brighton Rheumy. I may write to him and ask him to explain further.
I see my Brighton Rheumy on the 18th and will definitely be mentioning this to her (as I had forgotten all about Dr H's comment until recently as it was like a "throw away" comment in the middle of a big long discussion) and asking her to opinion.
SheffieldJane• in reply to
Pay attention at the back Jane.
Well I hope your Brighton Rheumie comes through for you. I wonder if some of them know that they are rock stars on here?
• in reply toSheffieldJane
Hope not! Wouldn't like their heads to be turned! Ang on! I'll think on that one! It might be a good experience for them!
Here goes.
ncbi.nlm.nih.gov/pmc/articl...
It’s not blue and clickable though. Just a practice, not sure if it’s useful. It’s about steroid resistance in PMR.
• in reply toSheffieldJane
THANKS!!!!
Oh it is blue hurrah! I’ve cracked it!
• in reply toSheffieldJane
You have indeed! Many thanks, I had been meaning to research the term to see what I could find, but then it just kept slipping from my mind, like most everything else! Cheers!
SheffieldJane• in reply to
I don’t know if the article I sent will be of much use, but I am very pleased with myself for managing to put it in the box.
• in reply toSheffieldJane
The article was fascinating, thank you so much!!!!! I picked up several links to studies done, where they used "Etanercept" in conjunction with Pred in patients who were identified as being "steroid resistent ." I am checking those out now! Cheers! !
• in reply to
I take cellcept/
mycophenolate because of "steroid resustance" I don't seem to have side effects with it now but not sure if it's helping as I seem stuck at 9mg.
• in reply to
So is CellCept (Mycophenolate Mofetil) like "Etanercept" in that you take it if you've shown resistance to steroids? And what it helps reduce the side effects of the corticosteroid?
WOW! I'd kill to get rid of side effects and be on 9mg!!!!!!
• in reply to
No. It is a prop basically as I understand it. Suppressing immune system so you supposedly get full benefit of steroids so you can taper. The problem is I may have been on 9mg by now anyway so sometimes I feel it muddied the water. The first 6 weeks were awful (nausea dizziness etc etc) as I increased dose but I persisted and once maximum dose reached my body acclimatised. At least (again as I understand it) the biologics address the condition.
I am afraid all medications drugs etc come with side effects. It just depends if you can manage them and/or/if the drugs improve things for you. I take it as read that all the meds I take have side effects and interact with each other. I still take most of them because they help me I.e. insulin keeps blood sugar under control ..even though it can cause hypos and often causes nausea if I don't time it right. Xmas dinner wasn't fun!!
I hope you get down to a pmr type dose asap to give you a rest but it will take as long as it takes. Highest I took was 26mg by accident and I will just say I feel for you.
• in reply to
Sounds like a "minefield" really!
I have this image of us walking through a heavily littered minefield.. blindfolded, dragging a plow behind us!
At my current taper down schedule I don't get to 20 mg until September!!!!
: O
• in reply to
Good image.
That's not long really and hopefully as you feel better it will come quickly.
I was dx in June 2016 which seems a lifetime ago and yesterday. The first few weeks were great then bad for a few months. Now it's sort of settled into everyday reality. I have bad days like everyone but I just think that I will feel better again. At the moment you don't really have that balance of knowing there will be normal boring, happy, scary, stupid days. It's best not to think about the future. The next few hours count. Future Melissa can deal with the next six months. Present Melissa just needs to think about today..and not too hard 😲😃
• in reply to
Good point and good advice... now just letting it sink in and telling Future Melissa to shut the hell up and sit back down!!!!!
• in reply to
😂😂😂
Etanercept is an anti-TNF biologic drug - and that group are specifically warned against in PMR as doing not a lot and being more likely to cause unacceptable problems. If they cause problems in PMR, they are likely to lead to problems in GCA which is just a different point on the scale really.
Tocilizumab and other anti-IL-6 biologics (there are a few) would be more appropriate in steroid -resistance in GCA.
• in reply toPMRpro
Thanks pp. I felt myself digging a hole of lack of real knowledge!⛏
SheffieldJane• in reply to
I am in there with you Poopadoop, digging away.
• in reply toPMRpro
Cool. Hmmm, visions of a minefield, while pulling a plow
• in reply to
That's exactly it.
• in reply toSheffieldJane
It only goes blue once you post it.. fooled me a couple of times.
It does get better!
God, I think I have got off lightly with just having PMR, but I am still aware that CGA could still happen to me, both being autoimmune conditions/diseases and are very much related.
• in reply to
Pastit, Yes, but do not let that thought enter you mind!!!!!! Don't put the possibility into the Universe!!!
My PMR went undiagnosed for years... that is why GCA presented with such a vengeance!
You will not get GCA!!!!!! xxx
Hi Mamici1 - all my original symptoms came flooding back to mind with your post- neck pain, shoulder and back pain, hip pain, severe bilateral groin pain that no one could explain ( not physio or Doctor) and many other aches.
Pain sleeping, turning over, getting out of a chair or the bath was nearly impossible on my own and my husband had to lift me up so I could stand. Then I too found prednisone and can move easier and I laughed when I looked carefully in the mirror tonight and realized that my lovely moon shaped face isn't showing any wrinkles - thank goodness for prednisone. The joys of being nearly 70
You have my utmost sympathy with all the horrid symptoms and side effects of GCA and high doses of pred and as you say the Consultant not being able to differentiate whether you are feeling crap because of tapering or the disease itself. Like you was labelled steroid resistant, given methotrexate to help, did the opposite felt even worse so after a few months came off it, never felt good on steroids apart from the first 24 hours.
All the same mental feelings which you listed so succinctly, particularly the isolation factor for both me and my amazingly supportive husband and it's such a difficult condition for ones friends to understand as physically you look so well with the horrid fat face!
However, believe me, it will get better, I am now 20 months into this down to 8.5 pred, feeling more human able to do a little more and as long as I really pace myself, still have days when I feel grim, then stop and rest for a couple of days plus the fat face is less fat - bonus no wrinkles!
Keep making us laugh.
OH WOW! Sho-Sho, I am so HAPPY to read your comments!!!! Well, not happy because you have horrible issues, but it's just GOOD to see that I am not the anomaly!!!! So you were labelled steroid resistant, hmmmm! And Methotrexate. Interesting.
Yup, me too... I felt good for the first few weeks on steroids, but after my dosage had to be increased to 80/mg (because of a failed taper down) it has been a living hell! I will talk to Rheumy about this "steroid resistant" possibility.
Thank you for your comment.. and your support! I found your words very useful and they gave me hope! Maybe that is a light at the end of this tunnel... : )
mamaci1, you're on 50mg Pred and I on 7mg. I have recently, had that same 'my teeth hurt', feeling without actual toothache. My dentist has checked and x-rayed and zilch. However, I have been clenching my teeth lately, and, on Thursday, am being fitted for a SCI... sleep clenching inhibitor, to wear at night. As suddenly as the teeth ache started, it has stopped. Weird.
98 REPLIES TO YOUR POST!!!!!!!!!!!!!!!!!!!SURELY A RECORD..PMRpro WILL KNOW.
kEEP KEEPING ON...1 DAY AT A TIME X
• in reply tokarools16
Thanks karools16... The dentist did check and said it did not look like I was "clenching." which I was surprised, at but happy to hear! I have a night guard thingy, but stoped wearing it for some reason. Wish I could remember why? : )
Yes, it seems talking about the signs, symptoms and side effects of PMR/GCA and steroids has created a bit of a brouhaha!
Convenient to have it in a concise list. Gracious acceptance can be hard, but some sort of acceptance is essential. And patience. Used to feel quite hard-done-by, but see it could've been much worse.
All looks quite familiar. Except tinnitus. But as I started on only 40mg, guess I must have had an 'easier' time. Did you mention steroid-induced diabetes? Mine started days after the pred. More fun n games. Or hair loss? Suspect there might be more. Too many boring details! Maybe think of it as one of those fairground rides where you're catapulted from one 'shock horror' to the next - but which will eventually end.
Seems no-one is ever able to differentiate well between symptoms and pred side effects. Confusion reigns - but the higher the dose the more side effects. For the sake of newbies, worth emphasizing that few of us experience ALL these symptoms - just an interesting selection. And generally not all at the same time.
Much individual variation but it does all, gradually, almost always diminish. Still knackered in my case but, now down to 7.5mg after 16 months, find most of the worst symptoms are either much less or long gone. A few new ones - need to negotiate the reputedly tough low-dose stretch, but end of tunnel somewhere on the horizon. Fingers crossed. Cue rousing chorus re 'all in it together' . . .
Onwards n upwards.
BonnieQuine, Shhhhhhh! I have not experienced (yet) the steroid-induced diabetes or the hair loss? I'm hoping the diseases have forgotten to gift me those!!!! ; )
Yes, these are ALL the signs, symptoms and side effects that I have personally (and in some cases I still am) experiencing! I did try to emphasis that not everyone will experience all of them, but wanted to have given a "head's up<" to make Newbies aware of what they might possibly exerience.
Good on you down to 7.5 in only 16 months! I wont be down to 20 mg until September, which will be 10 months, but... No, No, No, that is "Future Melissa" talking. She is supposed to be sitting in a chair quietly!!! "Present Melissa" is holding at 50mg and appreciating every good hour she has! : )
Hi mamici1. I have a littlle line drawing in my drawer of two people sat on a bench. It says underneath. ". Come sit by me and let the world slip". When things got tough like they are for you now and are for all of us at times we can write our feeling here and everyone comes ' to sit by you and let the world slip'. Take care Jen
I think it is a Shakespearian quote.
How very apposite! From Taming of the Shrew - the shrew of PMR...
enotes.com/shakespeare-quot...
• in reply toPMRpro
Hahahaha. I'm not up on my Shakespeare, but it has me at , "When the tinker Christopher Sly passes out drunk...."
"Let the world slip," indeed.
If you live in the U.K you can buy Epaderm ointment from Boots and it is great for dry skin and hands and nails and seemed to help improve the bruising- can't help the facial hair - quite unladylike eh! Ginger ale is good for indigestion or prescription of Losec. Magnesium for cramps helped my hands, legs and feet.
Old wives tale - put a cork at end of bed under bottom sheet!!!
Look after yourself and rest often - Jan New Zealand 🇳🇿
• in reply toJanicep
Thanks Jan!!!!
"Lack of interest"..yup...a classic symptom of chronic diseases....goes with the withdrawal from a lot of social events...a type of safety thing that's evolved to help us heal or something...at least that's the explanation I read...to me I just don't want to do too much when I don't feel good...the safety and comfort of home...ahhhh...nice..
• in reply todaworm
Yup, the safety and comfort of home...
could you put on a link to the list. I can't seem to find it. I am keeping a record for the rheumy and my GP and my cardiologist. I think the hip bone is connected to the leg bone but they all seem to be on different maps so would like to be able to point out to all of them what is bothering me and what doesn't work. I believe I have had this for a while (gout symptoms and groin but no raised Uric acid), I believe it was triggered from sneaking in the background by a new drug my cardiologist gave me because I reacted so bad to steroids. I also believe that 35 years ago when my thyroid started to act up-my GP at the time should have thought system--let's check this system rather than giving me a bandaide to stick over it. The thing about this that I hate the most-aside from the pain is that it turns you into an old woman-barely able to walk and needing to ask for help.
• in reply toCelebrant
You're welcome! I hope it helps. I am sorry you are having a tough time... and yes, I too believe "the hip bone's connected to the leg bone," and these doctor's should learn how to "connect the dots." I truly believe if my GP had listened to me 3 years ago and started connecting the complaints I was going in with (every 3-4 months) he would have diagnosed PMR and maybe saved me from getting GCA! : ( ...but who knows.
Good luck in your search for relief!! : )
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