I'm feeling quite down today due to my suspicion that I'm experiencing yet another flare on my way down the Prednisolone ladder. As result I was reflecting on the time that has elapsed since my diagnosis of GCA on 4 July 2017 (anything but an Independence Day).
In addition to the physical problems one experiences, there is a huge psychological impact; not least the frustration of not being able to explain adequately to others exactly how you are feeling.
Some while ago a friend sent me an email asking how I was doing. Usually when faced with such a question I revert to the very typical British response of "not too bad”, "mustn't grumble" or some such variant. The email must have caught me at a vulnerable time as I decided to try to explain exactly the daily dilemma I faced in managing the condition.
In my response I referred to the famous short story by Frank Stockton called the "Lady or the Tiger" - don't be impressed I had to look up the author. In my particular situation the Lady has been replaced by another Tiger. One of these lives behind the door called "Inflammation" and the other behind a door labelled "Side Effects". Choosing the "Inflammation" door means sticking with the (reducing) dose of Prednisolone whereas picking the "Side-effect" door means increasing the steroid dose.
Each day I have to choose which Tiger to battle. Some days I emerge beaten and bloodied whereas other days my opponent and I just spend the time looking each other, waiting for the other to make a move.
The weapons I have to fight the battle would make Harry Potter proud - in addition to the steroid I have yoghurt, prunes, extract of Willow (aspirin),antacid and vitamin enriched chalk.
To make matters worse in my mind’s eye there is a crowd (let’s call them medics) watching which door I choose. If I go to choose the Side-Effects door there is loud booing. On one occasion somebody shouted out "spineless" - this person obviously hasn't seen the results from my DEXA scan - a shout of "osteopenic” I would have reluctantly accepted as harsh but fair.
The daily choice and battle, where you can only expect a draw at best, is wearing but I'm hoping that one day in the future I will open the door and the Tiger will have disappeared. Somewhat worryingly I have seen reports on this forum of a regeneration of the condition - like a vascular Aslan, but I'm putting such thoughts to the back of my mind.
I'm trying to remain positive, despite gloom, failing memory and lack of concentration, I still regard every day that I wake up as a bonus. Along the way pleasant distractions such as the sequel to "Escape to the Country" - the ingenuously titled "I Escaped to the Country" provide a temporary uplift in spirits.
My friend's response to the email? - a classic British response in that he completely ignored my outpouring and proceeded to tell me about his latest holiday.!!!
Excuse me now but I've got a Tiger to fight.
Michael
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MichaelW
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You won't be ignored here - though someone might tell you about their holiday...
I like the analogy, it seems very fair.
On a practical point: what are your side effects? Many can be managed when you know how. Tell us and someone will have been there and worked out a way of at least reducing the impact.
Thanks for taking the time to respond. After my last flare at 17mg in Feb I upped my dose before coming back down to 17mg at the end of April. I was feeling quite a bit better during March/early April probably why this latest bump has hit me so hard. I’ve got an appointment with my consultant this week, the first since my original referral so I’m expecting Methotrexate or similar to be added to the mix if my recent blood tests show an elevated CRp. My symptoms seem to be concentrated in my head and chest region-in some ways the worst is a constant throbbing in my lower jaw which I have had since August. When I last posted I thought it was a neuralgia type pain but I think it may be inflammation of the oral mucosa. I use Chlorhexidine and Sensodyne twice a day but they have limited or no effect.As I implied in my original post I have felt under pressure from my GP and the two consultants I have seen to reduce my Pred intake. I do understand their concerns as there is no doubt that I am suffering from Pred side effects both physical and mental but the impact of increased inflammatory effects doesn’t seem to have an equal weighting.Perhaps I am being unfair ....
I do insist however on retaining a sense of humour which I’m glad that others on this site seem to share😃
You have 2 consultants? Did you seek a second opinion? Constant throbbing in the jaw isn't typical of GCA, intermittent claudication pain is. Has anyone thought laterally? Like - another vasculitis?
Due to the delay in my NHS referral I went for a private consultation to Chertsey followed by my NHS appointment in Dec. I didn’t have a biopsy. Both consultants seemed to think probable GCA and I have been treated as such.I did see a paper that suggested that dental pain could be caused by GCA but this was typically maxillary whereas mine is in the mandible region. Like you I do think sometimes think could it be something else but if it was another vascular condition I don’t know how it would affect my treatment regime?
Coming out of my Chertsey visit I managed to arrange a CT brain scan which was all clear so one other possibility that can be discounted
To be honest I was slightly underwhelmed by my visit to Chertsey. As someone else mentioned perhaps my expectations were too high but the notes I sent through hadn’t been sent on so part of the consultation was spent getting up to speed. In addition I didn’t get a copy of the letter sent to my GP or a response to my email requests
for one.I know this is in contrast to the vast majority so I suspect that this is an exception to the rule.
How is G CA diagnostically differentiated from other forms of vasculitis ?
In my case I seem to have a good correlation between my symptoms and blood test results.My original diagnosis and two subsequent flares both showed elevated CRp and ESR results which dropped back to low levels after Pred adjustment .
I originally suggested GCA as a possibility to my GP (I qualified as a pharmacist ) so if the diagnosis changes “mea culpa”
Having said that given the risks I would do the same thing again
Hi, pesky things those tigers. I like to think of it as the children’s book The Tiger Who Came to Tea. The tiger was accommodated but there was a quiet air of menace as an unnatural alliance was formed.
Your mouth - mucosa inflammation doesn’t normally cause neuralgia. Have you had an X-ray done by a dentist to see if there is an abscess or other dental problem? During chemo years ago and with my other immune immune problem where is can be prone to gum inflammation every 3 weeks, I find Chlorhexidine far too strong and it causes soreness. I also read something about them killing off beneficial bacteria in the mouth.
Thanks for the response. When I reported my mouth problems to my GP last year he said I needed to see my dentist. I did this and had an X Ray and no problems were found. I had my six monthly check up a few weeks ago and despite the problem worsening again I got the all clear.
I agree with your comments about Chlorhexidine and given that I don’t seem to be benefiting I think I will stop using it . I think it is also responsible for the heavy staining of my teeth.
I didn’t mean to give the impression that my mouth inflammation was causing neuralgia. In previous posts I had thought that the electrical type shocks and sensitivity were signs of neuralgia but a more generalised throbbing and numbness has taken over and the sensitivity around my chin has largely gone away.
Oh yes, it does stain. I use Curasept which doesn’t and I don’t get the feeling I’ve just swilled bleach . Another thing to look into is Temporomandibular dysfunction. This is something else that seems to crop up on this forum and I have certainly had problems since GCA, though I don’t the grinding noise. I wonder if it has been caused by the Pred’s affect on the muscles making the jaw muscles do funny things. I think my artery biopsy has had an effect too. I go to an osteopath who does cranial work or a Bowen therapist. Here’s a link just in case it’s any use.
I was just thinking TMJ. Long story but - i had a round with it recently. It started with jaw and ear pain, nasty taste in my mouth. Thought I needed a root canal and was put on antibiotics by the dentist. She couldn't find anything wrong and sent me to the specialist. He couldn't find anything either but said the scan showed stuff in my sinuses. Second round of antibiotics and by now just ear pain. My Rheumatologist did tests for other vasculitis issues and luckily all clear. I saw a cranial sacral therapist who sent me to the chiropractor. Two vertebrae rotated. But didn't seem to completely solve the problem. Ear nose and throat doc confirmed it wasn't my ear or sinus and stuck his finger in my jaw as I opened and closed my mouth. It was closing asymmetrically. He moved his fingers a smidgen and ear pain is gone! The jaw was out of alignment. I think it was from one of my students who likes deep pressure on his head and will try to push into my face if sitting on my lap (autistic preschooler). Typically TMJ is from grinding your teeth so it want looked for as I don't do it. I too wonder if are joints "get loose" from the prednisone. It might be worth looking into if you've ruled out a dental issue and it isn't typical GCA symptom.
Ohhhhhhh, I loved this, MichaelW!!!!! Brilliant!!!! It is a daily battle isn't it... I hear the imaginary "Boos," and "Cheers," too! My favorite part was the "... classic British response in that he completely ignored my outpouring and proceeded to tell me about his latest holiday!" Hahahahahahaha! So typical, and so very funny!
It’s a fabulous analogy Michael! I’ll think of you every day. I work in retail and we greet clients with the, “How are you?” It’s the ones who say “I’m well, thank you,” that I resent. I might be ‘fine’ or ‘great’ as they courteously ask back, but never well. Now I have your picture in my mind - FOREVER! And the response you received 😎. Just like the family members. I guess this is like “The Grandparents Club” - you have to be ‘in it’ to really get it. Then finally one understands. I’m looking forward to the Club Zero and finding out someday what that’s really like.
Sorry to hear your friend’s reaction, but obviously “too much information”to be able to compute and, so best ignore it (in the best British tradition as you say).
No ignoring on here, but as PMRpro says you may get more answers than you really want!
Just watch that tiger my friend! 🐯.
I have had an nice chuckle so thanks but that process is easily solved for me most of the time and I will accept the boooing...
Do you think your friends thought process was...news of my holiday will cheer Michael up?🤔
Sometimes you just have to. We are far too polite. When I take a minute to get out of the seated position and try and fully stand up i ought to swear at the people who say"are you alright"... Of course I am not you numbskull!!! I have deleted the expletives. 😜
I can sympathize with your struggle. It is a difficult disease and understanding someone’s journey can be the best medicine. Sorry you are struggling and you have my support.
Early days for me Michael but I am trying to battle the tigers (both of them). Very apt description. I've fought the black dog, met a gorilla and now two tigers! I've given up trying to explain about PMR so just say I am FINE (Flipping Insane, Neurotic and Emotional) or use another expletive I'm being polite today. And smile. Tomorrow is another day and hopefully a better one. You are not alone.
Perfect description - GCA is an ongoing battle on two fronts, pred and inflammation, never know from one day to the next where to muster your troops - one day you are winning the next losing, when is it ever going to end, but usually trying to put a good face on it so your friends don't get fed up with you. Just keep on with the 'mantra' I will get better.
Very well written Michael, I can't help noting some of your words - battle, fight, beaten and bloodied, you really are in a 'caged animal' state at the moment. As well as fighting your tiger think it might be worth adding another word - acceptance - could your tiger be your friend instead of your enemy? - in other words acceptance of your illness! Instead of pacing with the tiger perhaps pacing yourself/mind might work - you certainly can't keep this up as it will not help the illness, it's far bigger an animal than your tiger and won't be beaten - we know we've got the battle scars to prove it..
Might not be what you want to hear but food for thought as the first year is definitely the worst.
Yes Telian,I quite agree .I posted something like that a few days ago actually because I'd found a piece of clay inscribed with these words ,"I no longer fight my Demons ; we are on the same side now". I said that is how I feel about Prednisolone.
I do think that acceptance and patience is the answer.(Even though it's so hard to stop fighting)
Thanks for the taking the time to respond in such a considered way and I very much appreciate the sentiment behind your reply. Your point about accepting the illness is well made and very much applied to the first three or so months following my diagnosis. I wrote a slightly tongue in cheek post four months ago entitled "I wish I had known" where I made similar points about the need to accept the impact of the condition and reflecting that I had belatedly taken this to heart.
I don't therefore think that acceptance of the illness is at the root of the way I'm feeling at the moment. However there is no doubt that I'm feeling frustrated, mainly with myself, about the decisions I've taken concerning which "door" to choose which have resulted in what feels like my latest flare.
The original short story was based on the difficulties of choice, so I thought it was an apt analogy for many of us in managing "least bad" decision-making often in the absence of hard data.
Don’t worry about me feeling beaten and bloodied - it seemed more eloquent than the more succinct “I feel cr*p”
The only point in your post which I cannot agree with is the sentiment behind befriending the tiger. I have often had Eeyore moments since my original diagnosis, but I am certain that I am not dealing with Tigger
We are all different in our approaches and you have to do what is right for you. I couldn't keep up the fight but that's me. You should improve as your pred dose lowers so fingers crossed. Eloquence goes out the window when I feel that way so your avoided phrase I have used!
All the best Michael and whichever path you choose I hope you soon start to feel better.
Oh Michael what a wonderful way with words! You sum it all up so very well.It was like an amazing short story. Are you a professional writer?
I am sorry that you are having to fight this familiar battle but you are not alone here.All our tigers will go one day and that is the one thing we have to cling to.Its a shame that they usually take sooo long to go.I'm worried that the delights of old age will dovetail right in if my tigers don't get a move on.
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