PMRGCAuk
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First Flare Warning - PMR Hug

Hi, I have recently reached 7 mgs of Pred. Using DSNS. I have my husband's brother's big posh (3rd) wedding on Saturday and then again more celebrations for more people the following Saturday. I won't know anyone except my husband and his recently widowed sister ( giving her support has been an incentive). I have dreaded it for months.

I have not felt great on 7 mgs, waking up feeling dreadfully I'll without the strength to push the bed covers off. This improves as I get moving but I am struck by irresistible fatigue at random times. Yesterday I had a horrible sensation as if I was being hugged too hard with pressure and pain in the ribs. I can only think I strained something choking on acid reflux. I am getting stabbing headaches in the side of my head to add to a cap like constant headache and I am experiencing hideous eye strain, one eyelid has a swelling. I have twinges of PMR pain across my shoulders and aching legs. I am filled with dread that this will look like deliberately snubbing the wedding if I don't go. I have spent a fortune on clothes, hair etc. the very expensive catering will have counted me in ( all my children have plans and cannot go in my place). Is it wise and can I make myself behave by taking more Pred for the duration? I don't want to up my dose but I've blithely advised others to when there is an ordeal looming. I am also worried about the head and eye symptoms re GCA. GP knows less than this site, I imagine my Rheumie would let me increase if I can track her down. Arg! Help!

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Jane, wish I could help but I know far less than you - sure the experts will be along. All I want to say is you have my sympathy, and the 'posh do' may not be as tough a gig as you think. I've often found that imagination is far more scary than reality and something built up in my mind as an ordeal works out fine when I get there. Good luck, hope it works out all right for you.

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Thank you Mai for a helpful reply. The havoc this disease wreaks on our appearance does not make weddings easy at the best of times.

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Hi Jane,

Sorry to hear you're feeling so rotten at the moment.

Would guess that at 7mg it may be partly due to adrenal glands - certainly the fatigue element, plus if you've been worrying about the upcoming wedding and comforting SIL then almost certainly stress levels have risen. Any one of those scenarios would have thrown a spanner in the works, let alone all three.

Don't really like the sound of your head/eye pains, but they could well be stress rather than anything more sinister - trouble is, we automatically think the worst in that situation.

If only to put your own mind at rest, a small increase would probably make you feel better, both physically and mentally, so keep trying to contact Rheumy.

As for the wedding - the bride & groom will be centre of attention - no pressure on you, you're not mother of either, you're a guest, you don't have to give a speech or be anyone other than yourself - and as Mai says you might find, if you relax, that you actually enjoy it. Plus if you feel a bit tired, sure you'll be able to find a quiet corner somewhere!

My feeling would be - I've spent the money, so I'm going to jolly well enjoy it!

Take care.

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Jane, I'm sure we've read here that it's possible to increase the pred for a few days and then go back to the previous dose without any ill effects. However, if you feel this is a flare, then maybe you need to up the dose for longer and go to A & E if you feel your vision is involved or you're getting crushing chest pains.

Interestingly, I had to stick at 7mg for 2 months, and stop the DSNS taper, as my symptoms increased. Then three weeks ago I went from 4mg up to 10 mg and obviously needed it, as it is dealing with the pain. Onwards and downwards from here, but not yet and then VERY slowly!

As for the wedding, if you do go, I'm sure your sister-in-law won't mind if you sit quietly with her and let the others get on with the celebrations - 3rd time lucky for him, maybe?!

Take care of yourself, as you are always quick to help others with your kind words.

x

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Thank you Rugger. My fear is being trapped in a situation and possibly having to make a drama/ spectacle of myself.

It's helpful to learn about your dose adjusting - I have had a fairly event free slide down from 20 mgs. I need to take my own medicine now and increase. The head makes me feel a bit panic attack like. I never thought of the rib pain being heart related cripes thank a bunch! 😮

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Hi Sheffieldjane - I really can't advise (too new) but to say that the rib pain could be Vitamin B12 deficiency.

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Hi Slosh

Have you a reference for this as I am currently having a recurrence of a rib pain (sprain?) deep inside lower right back so cant feel it with my hands. Last time it worked itself up into a spasm - could hardly move. I think I am over the PMR at 1/½ alt.days pred. I have B12 deficiency and Parkinsons and worsening scoliiosis to muddy the waters. I have been considering upping my pred but as the current problem is o ne sided d oes not seem at alll likely to be to be a PMR problem.

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Oh sorry Paddyfields - the rib pain from B12 deficiency is usually all round - however I get random pain in my body from Vit B12 deficiency as well. Pred I understand messes with Potassium and may cause the 'cramping'?? Perhaps all due to the worsening scoliosis? But look up Costochondritis

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Thanks Slosh for your swift reply. What a godsend these forums are although my G P has other ideas!! Actually I do have stiff rib cage on and off which is part of the picture and could be laid at a number of doors.. I had come acrossCostochondritis before. Will look into it.

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If you have a scoliosis anyway I'd suspect your back muscles are spasming due to the strain being put on them. Our back muscles are very compliant and when we or our body ask them to support us they do - adjusting themselves to the best of their ability. Eventually they run out of space or we ask them to do too much - and they go into spasm to protect themselves.

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Hello Sheffieldjane. I have my daughter's wedding in a couple of weeks and I'm trying very hard to stay relaxed and calm. Last month my husband and I had a two week holiday in our caravan. The day we were leaving I was transferring food from the fridge into bags to take with us and the pmr decided to kick in with dizziness, fatigue and back pain. We still went on holiday but half the contents of the fridge got left behind! I was on 7.5 and upped it to 10 for a few days which dealt with the symptoms. I then gradually decreased and am now on 7mgs. If necessary I will do the same on the day of the wedding just to make sure. Although we all would like things to go smoothly with pmr, I'm afraid it takes over and we have to have the strategies to deal with it. I hope you have a lovely day and take Dorsetlady's advice and relax and be yourself .

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Thank you gaycreasey, that exactly illustrates what we are up against. I hope your strategy works perfectly for you and that your daughter's day is perfect in every way. I haven't used Pred like that before but I think I will have it as my safety net.

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What I am wondering is what's the Rumi going to think if we mess about with our doses. 😱🤔

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Thank you DorsetLady! I wish you were coming with me! My husband doesn't like social situations either and usually hides behind my efforts. I am all out of efforts. I'll be the dowager in the corner critiquing the revellers behind my fan ( I have one). I tend to catastrophise ( ambulance for me wrecking the day etc.). 😖 I think I will take a bit more Pred. And probably feel rough in a different way.

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Catastrophes rarely happen, except in our minds.

If you take more pred you might be dancing the night away! Only joking, but I'm feeling good on the 10mg dose.

Mark's and Marilyn1959's words are very wise.

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Hi SJ,

You won't wreck the day, and I'm sure the champagne will help - do hope if it's a "posh do" the champagne mirrors that - sure it will. If you could guarantee that, as a fellow dowager, I might be tempted!

As an aside, good champagne and Pred do actually combine quite well 🥂!

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Any good bubbly and pred combine pretty well!!!

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Personally I find a good bubbly combines well with almost everything ... no correction, with everything!

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Quite! And doesn't have to be champers...

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Prosecco,, Cava, even English Sparkling wine nowadays are just as good, and sometimes better than champers. Only difference really is that French produced can only be called Champagne!

A Rose (!) by any other name .......

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Sparkling rose - now you're talking...

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... or Pred + a glass or two of the red stuff? (dry, of course).. ;-) ;-/

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Each to his own - but at this time of year: sparkly pink any day for me!!!!

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When you lushes are quite finished! 😂 there was a cry for help going on.

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You should know by now that a combination of herself, MB and yours truly usually ends on a boozy note. Hic !

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I didn't start it - blame PMRpro ;-) :-D

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Funny you should say that, as you know been on holiday with grandkids and they always blame each - same as their father and his sister did 40 years ago! Some things never change!

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It's back behind the sofa for me again then.... :-/

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I thought we were recommending therapy...

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Cathartic tears before bed time! Pink and sparkly you say? 🍷

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Yup!!!!

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No, I've given her the sack - too expensive ;-)

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What good news! Must try some soon!

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Ah Jane, sorry you're still not feeling great. I'm obviously not an expert but would be inclined to increase the pred a little to see if you feel better generally. As for the wedding.... get yourself all dressed up...it might make you feel better....and go. All the attention will be on the happy couple. Will you be able to escape for an hour if it does get too much? A little lie down could help you get through it. Hope you go on OK.

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Hi Jane

Sorry to hear about your dilemma, I can relate to not wanting to get involved in 'big' events when feeling so rough. The DF (Deathly Fatigue), although part and parcel of PMR, really is awful.

I'm not qualified to give medical advice but, it seems that you should deal with the most important things first: i.e. your headaches / worries about possible GCA symptoms. I'm sure the Aunties here will advise you to get these attended to URGENTLY if in any doubt whatsoever. If you can't track down your Rheumy and your GP is a 'lightweight' about these things, can you get yourself to your local A&E with a clear explanation of what's going on / your concerns and ask for the appropriate tests / treatment? As most of us know, with GCA signs, (potential or actual) time is of the essence... for the reasons you know. And guessing about how much to raise the preds to (possibly) alleviate them is a bit of a hit-and-miss exercise.

As for the wedding, a difficult call, I know. Personally, I would put everyone on notice NOW about your symptoms and concerns / warn them that you might not be able to attend (and why), and put yourself first. Even without the headaches - and if you have DF alone - it would probably be a struggle anyway - and the stress of the situation will only make things worse. Sorry to sound negative, but sometimes we have to be realistic about these things.. :-/ The wedding will go ahead whatever.... and I guess there will be a video if you do miss it?

This is only my (amateur) opinion, but hope it helps

MB

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Thank you for your wise and well thought through reply Mark. The relief I feel at the possibility of not having to go is palpable. From past experience though depression will shortly follow. I never let myself off the hook. I could count the times that I've dodged an obligation on the fingers of one hand. As well as not enough Pred it is stress increasing the symptoms. As I read your replies I feel a childlike relief that somebody is helping me and it helps. We are like virtual cheerleaders for each other.

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All part of the service Jane. After all, you are often one of the first to help others here too ;-)

From experience, a sense of duty (although admirable) can contribute to stress levels - esp. if deep down it conflicts with what you really want to do / not do. I have a dear, retired sister like that - always doing things for others but at the same time often frazzled as a result.

With PMR especially, I've learned that Stress is the Enemy and it's ok to say NO to others' requests and 'manage expectations' sometimes. But then, you already know this! ;-). Try to roll with the depression (and guilt?) - being kind to yourself will help.

As the others here suggest, 'up' the preds, see how you feel on Friday and MAYBE plan to go to the wedding - but give yourself a bolt-hole if you are struggling. AND, push, push, push your rheumy for some advice in the meantime and / or seek an urgent opinion from A&E if you're feeling really anxious about the symptoms?

Either way, you're in good company here - keep us posted... :-)

MB

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Dear Jane and Mark ....I have to agree with Marks suggestions and opinions. I read that others on this Forum have given different points of view which is very good. It is very helpful for you Jane,in order to make the best decision concerning the wedding , to get the many opinions from your trusted PMRGCA friends. ( we have all had similar struggles as you are having now). Be sure and keep us posted concerning your decision .

Best Wishes,

Suzanne

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Thanks Suzanne this has been an amazingly useful and supportive thread about something we all have to face, be it a wedding, a big family party, a work event, a holiday and all it entails. We are so keen not to let others down but these things are really challenging on many levels both physically and emotionally. Oddly I have been to two funerals of late and somehow they were ok to attend, sad, subdued, thoughtful and fully concentrated on who we've lost. Mind you not if it was my immediate family.

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Thanks altywhite, I wish the reception was in the hotel where we are staying! I will have to scope a refuge when I get there. Gosh these family obligations are hard and a bit false because deep down I wouldn't be much missed I'm sure.

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Ahh...I know how you feel...small talk isn't really my thing either, especially when I have very little in common with the masses! Must say I quite liked Mark's suggestion of 'preparing the ground' so to speak.😊 The main thing here is to look after number one! If you increase your pred and feel better and want to get dressed up then go for it....but if....for whatever reason...you aren't up to it then don't. Oh.....and don't feel guilty if you decide not to go!! I've actually got a 'do' coming up in a couple of weeks but I'm rea!ly looking forward to it, it's my friend's daughter's wedding. Whatever you decide.. good luck... and keep we!!. Let us all know how you get on. 😀

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Hi Jane,

You have been so supportive of me since I joined. Here's my observations, meant with all good intentions of a friend based on my very limited knowledge of you, the illness and the situation. Here goes...

Firstly your use of language is interesting and hits me, a bit of a give away really. Quote... I have been DREADING it for months.... I have blithely advised others to (up their dose) when there is an ORDEAL looming????? .....I am filled with DREAD that this will looking like I am deliberately snubbing if I don't go.....

Taking this into account it is highly likely the cause of heightend symptoms is stress related caused by 'dammed if I do, damned if I don't' dilemma!

From what you have written, despite having hair done etc, I am really not convinced at all that you really want to go? And that you are simply going to please other people? By all means correct me if I am wrong. Seems to me that hubby would have his sister for company, so quick fix solution is they could go together, or is my view too simple and naive ????? So what if others think you are snubbing them, you need to do what is best for you.

Having said the above, on the medical side I think you should indeed act upon the advice you would give to others in similar position. I remind you that only last week when I had 'eye episode' I think you were advising me to check out with A&E if I had any doubts about GCA???????

In my book your advice has always been sound Jane. If it is good enough for others then it is equally as good for you. The trouble is we don't always value and treat ourselves with the respect we deserve.

Certainly symptoms are flairing whether stress or medically induced. If nothing else the single clear factor in all of this is that, right now Jane, you need to prioritise your needs rather than trying to please others.

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As we have shared on another thread. Always easier to advise and advocate for others. But all the advice given here is food for thought. Just think about what you need rather than what others may want. If you go just stay a short while then find a bolt hole to recharge and then back to the fray. Cor blimey some people like to push boat out for third time!! I think I would be nipping to local registry office for quick do!

Take your own advice...it helps others so why shouldn't you benefit from it?

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Hear, hear Poopadoop :-)

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You are very "people clever" Marylin. I paid someone for 4 years who had less insight. Busted! I don't want to go, even if I was as fit as a flea, 8 stone with dazzling conversation skills - well maybe. The wedding will be rich older men and their younger permatanned partners. I am lousy at small talk although I love listening to other people. But I'm poorly, please don't make me go to school!

The difficulty with headaches and eye symptoms is that they happen with PMR and Pred and do not always constitute a GCA emergency. Given that I am prone to panic, when is it an emergency? Both my eyes feel strained, I think it is usually single eye symptoms initially. The headache is lowering but not severe. The stabbing temple pain is very occasional. My last bloods showed no inflammation ( 3 weeks ago).

I think I will up my dose to 8mg until Friday, then 10 mgs Saturday then 8mgs Sunday then 7 mgs Monday and see if things settle. Next weekend is the big party in their huge garden but my grandchildren will be there, my dress is loose and long and my daughter and husband want desperately to have fun. That bit I can imagine being ok. Rolling around on the grass with my little Theo, stuff everything else.

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Which is what I was going to suggest. If you are having symptoms - have you overshot the "lowest dose that manages your symptoms as well as the starting dose did"?

I didn't particularly want to go to a wedding a few years ago as i was at my worst with PMR and it was a few months after 3 weeks in hospital due to back problems and atrial fibrillation (nice mix, long story). I really didn't feel up to it.

I couldn't duck out, I was the bride's mother. I took a decent dose of pred and went and got on with it. I found a seat and sat and watched the reception. A few people came and talked to me but I was happy enough - I was after all only the bride's mother.

Sit with your lady friend and send your husband to fetch for you. And enjoy the day people watching!

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Thanks PMRpro, that helps. Yours was a worse trap, mother of the bride has to go!

I think I have overshot the lowest dose that manages symptoms as well as the starting dose. I could do with that giddy high as well, borderline euphoria. Worried the GP more than anything else has typically. I will try my modest increase in this game of snakes and ladders.

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Hi Jane. Not so much 'people clever' just reading the obvious in your post.

Having read all the replies and your responses it looks like you are now formulating a plan. It important that the plan has different paths and outcomes, so depending on how you feel on the day, you can change course without feeling guilty. Share options with hubby. As we know nothing is predictable to the nth degree with PMR . By planning options if things don't work out on one path there is no guilt attached to taking another on the day.

Never mind comparing other people's life style, be comfortable in the knowledge that money can't buy soul of which you have plenty! 😄😄😄😄😄

Keep us posted. Much love and best wishes either way.

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Thanks again Marylin. I do use quite dramatic language, I notice. I expect the story I tell myself would be better for me if I didn't ratchet it up.

I hope I didn't sound b**chy about my wealthy bil and his friends. He's a poppet really and has been kind and generous to my family. I am just shy really with a horror ( there she goes) of drawing attention to myself or being less than my best.

Reading between the lines is not obvious to everyone, don't knock it, it's a gift!

Love Jane x

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No you didn't come across b*****y at all. Just lacking a bit in self worth perhaps because you were feeling low? X

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I can drip about a yacht with the best of them. It's just not my scene,. Bit of a lefty old hippy at heart.

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Hi there I'll keep it breif. I have GCA symptoms but mildly at the moment not phasing me much at the moment. But had one bad one a few weeks back so wacked up dose to 30 mg , fine

As it is very dangerous for your eye .

So, Knowing what I do now, if I had a bad one, I would ring A&E As eyesight is precious

But that is me..

I have no medical qualification at all

But like to think use a lot of common sense

Best of luck

Hugs

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Thanks Ronzy. You are being treated for GCA by a Rheumatologist aren't you? GCA is not something I would dare manage myself. Is it quite clear to you that GCA is presenting symptoms? I think I've got PMR ( threatening to flare) a headache and eye strain. Somehow I expect GCA to be more painful and dramatic. This is just bothersome and made a bit better with paracetamol. I read a lot and the weather is muggy with stormy air pressure. It would be ironic if I underestimated a symptom for once. Thanks for the hug ( needed).

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They say paracetamol doesn't do much for RMPA/CGA. 😳

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Hi Ronzy, spot on, pred is really the only thing that helps the pain of PMR/GCA. Of course paracetamol taken with pred may sort out some other aches and pains.

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I know. I am clinging on to the fact that it takes the edge off this sick headache, so it can't be GCA. We don't get a free pass from other things. Thanks for your input.

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Well said ronzy.

From what I know and have learned here about un-diagnosed / controlled GCA symptoms (and the potential consequences) , better safe than sorry.

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Often there is a pause between the wedding and the reception for photos. Use that time for a quick rest in the quiet. Ask someone who works at the venue if there is a quiet spot to regroup or if nothing else and you drove, sit in the car a few minutes.

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That's so sweet and thoughtful TooSore, I would also avoid being in the photos - result!

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Being and on two different PMR/GCA forums, never know where to post .I have just had a flare while on 7 mgs.We have another thing in common, Jane!

Couple of months ago, I had those same symptoms as you, the swollen eyelid ( I called it droopy) , the headaches and extreme fatigue. I thought it was GCA but it went away on its own.

I, too dreaded going to my son's wedding, this was a small wedding and I was the only one overweight there, man or woman.I still had the moon /chipmunk face. But all in all, I was happy I went, had a really good time and, according to a lot of people, I looked like " an old film star" with my art deco get-up. Will try posting a photo 😁

I did take 5 mgs more of pred. and then went right back after a days.

Hope you are able to go and make some great, new memories.

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Oh thanks Gaijin! I think we were separated at birth. People are far less critical than we imagine. I would love to see your photo. I bet you looked wonderful ( if only they knew what it takes to put the show on the road). I would add a picture to my bi line but You can't with an IPAD on this site. I'm glad you enjoyed your son's special day. I love all things Art Deco. I might manage a poor man's Diana Dors I suppose. Hilariously auto correct made that a poor man's DorsetLady, he would be a rich man indeed.

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Diana dors....blast from the past. I always liked her cos despite the hard life she had she always looked comfy in her body and seemed very friendly. So being a poor man's diana dors would be complement to me!😁

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Sorry, Jane, I hadn't realize that my son's wedding was more difficult to get out of than you, for bil's wedding.if you don't go, just consider the money you spent on clothing an investment.Youll probably have chances to wear them on other occasions.next time you have an event, you won't need to go shopping!

I took 11mgs of pred today, and I'm feeling well again, like before the "flare".

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Hi Gaijin, It's my husband's older, richer, brother. There is not much blood family left now their parents have gone. I guess that's why we're invited with a select few to the ceremony - Chelsea Registery Office - where Mick Jagger married Bianca.

No we can't miss our children's things end of!

I have now recovered sufficiently to feel like a bit of a miserable s*d.

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I cried cos I had to try and walk the dog so being panicky about a wedding and all it entails is totally understandable. 😊

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Oh bless you Poopadoop! It's just so rotten not being able to do what we used to do. It's overwhelming sometimes. That's why this is a great place to vent.

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Sheffieldjane you really have my sympathy. The stress of this is what has brought these symptoms on and they are real. As so often said on this forum stress really is a major trigger for so many of us who always consider other people's needs first. All your post is about how upset others will be. What about you? You have a serious illness which you are coping with and yet your only concern is about spoiling things for others. You really don't want to go do you? The sensible thing is don't! The relief of that decision will make you feel so much better. I know you will feel guilty but from my experience people are nicer than you expect when they understand a situation. I had a stressful situation recently with a neighbour's dog barking at night. My sleep has been totally disrupted and I have now had my first flare including a few head symptoms like you describe. I have upped my prednisolone but it is taking days to feel better. I did write a nice letter to my neighbours suggesting an alternative to their dog's late night wee/bark and they have co-operated. It is difficult for others to appreciate the life changing effect of this illness but here on the forum you have bucketloads of sympathy for you and particularly as you have been so kind to so many of us,including me, on previous posts. Whatever you decide to do,take very good care of yourself. You are equally as important as everyone else. Big hug.

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Well put, Brixamhampster - I couldn't agree more :-)

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Oh Brixtonhamster that is a lovely message to get, you are absolutely right of course! It is so much easier to look objectively at someone else's situation. When you are in the middle of yours it feels insurmountable and overwhelming. The advice of so many wise friends has stiffened my back bone somewhat. I think I will proceed as if I am going to go. After all he can't get married again can he?

I might even break my abstinence and toy with a glass of bubbly as DD and PP advocate and they are never wrong! My father used to say it was the oldest anaesthetic in the world. Mind you Whiskey and my dad is another tale.

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It's all been said!! Try reading your post pretending it is someone else writing it. How would you reply? You give very sound and encouraging advice Jane, relax, take a step back and then move forward in whatever direction you feel is right regardless of expectations( perceived or otherwise). I think you'll go, I'm sure you'll have a few strategies up your sleeve and if you go I'm pretty sure you'll enjoy it on your terms. Xx Jackie

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Thank you Jackie you have described exactly where I am at after a day of agonising and plenty of wise women and man input. I am sure others will have benefited from the discussion, I often do from threads I am not part of. Thank goodness for this site, it has entirely changed my experience of this odd disease for the better. To add to my joy one of my cheeks looks bigger than the other, God I'm beautiful!

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I just read this thread with real interest. I'm currently going through the scenario of, is this a PMR flare or is it GCA. My rheumatologist has upped my Pred to 40mg - as a precaution - but I don't know now whether the symptoms are GCA or Pred induced!! This illness certainly is a roller-coaster but at least I don't have the decision to make about a "posh" wedding. I personally feel that you should just treat the whole day as "get up, dress up and show up"!! You're under no obligation to behave in any way other than the way you feel is the right way for you. Just be selfish and treat the day as it comes.

As others have said, you are so helpful to others on this forum - just take your own advice and do what's right for you. Lecture over 😊😉

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Thanks Janann, gosh your Rheumatologist must be pretty sure something is going on with you. Let us know what happens. Most of us with PMR fear this. It would be helpful to know what happens next. You sound very brave and stoic. I am more of the screaming abdabs type unfortunately. 😱

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Beauty comes from the inside! Nuff said!

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I have to be honest, Jane, having read all the comments and also the underlying feeling to yours - if it were me I would not go to the wedding. You don't actually want to and you are not well. If the reception was taking place at your hotel then it would be easier but as it is once you are there that's it - I doubt you will be able to get away and/or have some peace and space for yourself. And I wouldn't worry about the cost of the catering - every do I have ever organised has had a few last-minute drop-outs and I have never thought about the resultant catering issues or resented them for not coming. Please do put yourself first and only go if you really want. Your wellbeing comes before trying to please others. Whatever you decide, I am sending you big hugs. Xx

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Thank you Susy. The more I am told that I don't have to go the braver I feel. I know my new sil will want to feel accepted by the family her predecessor was loved by all. As usual if I consider others it gives me a purpose and it a purpose. My other sil is attending her first event without her beloved husband and like me she only knows her brother and his girlfriend. So it's more than a party it's a statement and support. There is just a small group at the legal bit. The rest is just Ego as my funny little Budhist leaning son would say. If I fall over, I fall over, there is always a taxi to the hotel.

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Good for you, Jane! But please do look after yourself while you are there and leave if you feel bad. Lots of love and hugs xx

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Recently I had to travel to a wedding of a very dear friend, I was not looking forward to it as I didn't know any of his London friends and I hate making small talk. As usual, most of the negative drama went on inside my head in anticipation of the event, once I'd made the decision to go I upped from 7mg to 9mg the day before, 10mg on The Day, 9mg the day after and now back to 7mg. Contrary to my dire thoughts I was not the focus of the day (!), I had a very interesting conversation with a couple at my table and I wandered around in the garden with a glass of bubbly a lot of the time to chill out. I hope whatever you decide will be much better than you are anticipating - so much goes on in our heads that cause more problems than actual events! Very good luck, and thank you for all your kind and thoughtful posts on this forum, we'll be thinking of you, Diana Dors !! :-)

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I agree with every word of that slowdown. I wish I had Diana's panache. Nobody said she had a moon face but she did. Too busy being dazzled by her confidence. T*ts and Teeth and someone once said to me before a presentation. I almost choked.

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T & T a good old showbiz mantra - I used to kick my heels up on stage in a former life; now the first T have gone south although I'm hanging onto the other T! Just be you, you sound amusing, kind, and caring. Let us know how you get on.

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Pleased you have hung on to one T slowdown! One more T than many! 😄😄😄👍👍👍

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Hi Jane

I'm sitting here, having read through this post and really feel for you. Saturday is creeping towards us, so I'm wondering what you have decided to do about the wedding...

You are always so supportive to others and write lovely replies to those in need, so I was so sorry to see you were having problems yourself. I hope you feel supported yourself, as you deserve it.

If you are still undecided about attending the wedding, is it worth writing a list or pros and cons? I find that often works for me if I'm trying to make a decision. Another one is tossing a coin. Think about your heads and tails and whether you'd feel relieved or disappointed if it turned out "heads - you don't go to the wedding." That way you can often detect how you REALLY feel about going, and of course, you wouldn't have to stand by how the coin landed!

Whatever you decide, I hope you're happy with your choice and you don't end up in A&E at any stage of the game..! And remember, it's ultimately about YOU, not anyone else. My mum was given that advice when she was first terminally ill and worried about not attending events and letting people down. I know it's different with PMR/GCA, but it's still a horrible condition that often makes us feel dreadful. We're so used to struggling on with PMR/GCA, but anyone else who was unwell and had an event to attend probably wouldn't go.

Good luck! xx

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Thank you Claire for your kind and thoughtful reply. Your mum sounds very sweet and much braver than me. Your advice about a list of pros and cons is a good one. It's funny how shyness and fear can make you quite arrogant. You swell yourself up to an enormous, important size and can have quite unfriendly thoughts to justify yourself. Or at least that describes my process. I am being asked to be wallpaper to bless my brother in law's wedding to his lovely girlfriend. No speech, no dance no organising etc. just his brother's wife in a nice dress with a smile on her face. Yes I am scared that I've had a headache for days and various other PMR symptoms. Already I feel a bit brighter on just 1 mg more. I have quietly packed my case, laid out my clothes for the journey, stashed a GCA emergency supply of Pred. Just like I used to get my kid's stuff ready. All the time thinking I can back out if I want to. I haven't bent my poor husband's ear off because I have had the support of you lovely people. My virtual army of brave souls. Is she going? I don't know but either way I've felt held by you all in the indecision, and feel quite humbled by that. So thank you, thank you! 🌹🌸🍀🎈🌷🌺🌻💐🌼 ( my new sister in law is a Claire, it's not you is it?) 😳

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Oh Jane, bless you! I agree that all the lovely people on this forum make life so much easier, especially when it means we don't have to bend the ears of our loved ones, although my mum won't let me get away without giving her regular updates! My first thought when I read your first post was, "Jane, don't go!!" Then I thought that maybe deep down you might regret it if you don't. I have to say, there have been weddings and events I've attended that I haven't really fancied and looking back, I actually wish I hadn't bothered. All the anguish beforehand and then I've attended, hoping that it was all just in my head, and then it's everything I hoped it wouldn't be. My main problem is that I've got a naturally soft speaking voice and once the music cranks up and everyone is talking loudly, trying to be heard above the music, there's no hope that anyone will hear me! The person sitting next to me can just about hear me if they direct their ear towards my face and I yell directly into their ear (not a great conversation situation). It's better not to bother, and then I get bored and want to slip away.

You come over as a really lovely person, and I'm sure that's how you'll be regarded by the people who attend the wedding. At least your family know you! I think many of us are shy and fearful, especially at special events, but no one ever guesses!

You can back out of going right up to the last minute, even if you've got through the journey. And if you do go, no one would mind you slipping back to your hotel.

Don't forget to give us updates!!

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How did the weekend go Jane...?

xx

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Hi Jane. How's the decision making going for tomorrow? Feeling any better?

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It's Saturday - I think she must be there. Let's all send good vibes!

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I've been thinking of her all day! Looking forward to an update... 😊

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Dying to know how it went! Please give us an update when you have time, Jane! Xx

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Hi everyone, thank you for your continuing concern and interest! I did go to the wedding and managed to feel calm and mindful. It was every bit as scary as I knew it would be. The ceremony was moving, it made me well up, something about people of our age having all this hope and optimism.

I laid off all electronic devices and lo and behold my headache eased off. So watch that, it's tempting to over do it when you're not your energetic self. The meal was the worst, my bil had decided to mix everyone up on different round tables but my table had all just got back from Barbados and we're talking about the adventures there in a kind of code. My bil's hairdresser was there and she was very nice. The meal was interminable . I was in pain and my feet had begun to swell and come out in a purplish rash - psoriasis has been in remission due to Pred but it decided to rock up. I was so tired I could have put my head on my plate. Some large doors were opened and there was a twinkling dance floor. I thought it's time to make a swift exit. My husband insisted on returning to the hotel with me. It was awkward saying goodbye with all the faces upon me. Mind you everyone was pretty tipsy and apparently the menacing dance floor was hardly used after we left.

It was hard to sleep with the unaccustomed 10 mgs ( total life saver). Swirling thoughts and groans. My dress was admired by the bossy Lancashire lass who was in charge of the photography, so she kept singling me out for photos, same with my pink parasol in the pouring rain after the ceremony. I should have worn black. The photos are going to feature a lot of me faking joy. But I got through thanks to all your good counsel. Slept all the way home on the train, surrendered to sweet cravings also. Back on 7 mgs, my body does not appear to have noticed. Strange pain down my left arm - probably gripping my clutch. Discovered that I had left my purse, all my cards and house keys in the Hotel Safe, half way back to Sheffield - Pred head. Swift phonecall sorted! I did not care. I survived! Hurrah!

( sorry to bore on, everybody who said that the dread is much worse than the actual event was spot on.) the GCA fear was my body desperately trying to get me out of going. It means well.

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Well done Jane! Thanks for the update. You survived! Oh, the dreaded dance floor... I always shudder when the tables and chairs are pushed back and the music cranks up. I don't mind the actual dancing too much, but forget trying to make myself heard either on the dance floor or back at the tables. I bet your husband was pleased to leave too; there's only so much small talk one can deal with.

It sounds like you enjoyed the actual ceremony, which was the main thing. Shame about mixing up all the guests at the tables though. I always like to sit with people I know as you often haven't seen them for a long time, and you're probably never going to meet up with the random strangers again.

Lovely that your outfit was popular with the photographer; she must have considered you to be particularly photogenic, and the photos of you "faking joy" will be much appreciated by the happy couple.

Anyway, it's all over now and you can be proud of yourself for surviving! You just have the event next weekend, and from what you said, that sounds like it will be far less taxing and more enjoyable.

You also avoided a trip to A&E too...

Hope you are reunited with your valuables soon!

Onwards and upwards!!

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At my daughter's wedding the band was awful - so loud it hurt. They wouldn't turn it down even when the bride requested it. So after the first dance everyone retreated to the adjacent bar. They still didn't take the hint.

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How disappointing! You'd think they would have taken the hint if everyone disappeared. And you were paying them!

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Aww...I'm glad you made it Jane..and you probably will be when you feel better and reflect!! :-) You must have looked lovely to have all the photos taken...:-)

I can never understand this mixing up of tables at weddings and the like!! I know the hosts would like people to get to know each other and mix but some people (me included) find this really difficult! My godson had a pre wedding get together the night before his wedding so that everyone could meet up...admittedly it was only a small wedding, 50 or so people, but it was good. Then we all sat with our own families on the day. I must remember that, if ever I manage to marry off either of my 2 sons!!!

Hope your valuables arrive soon and you get back to "normal"!!! :-) Thanks for the update....you had a lot of people thinking about you. :-)

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Well done you!!

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Hurrah indeed! Have a lovely time next weekend, but not too much rolling around on the grass if this rain continues!

It seems that headache was stress-related. Take a break from the forum too - it worked on Friday and Saturday.

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Yayyyy, Jane - you made it! Well done you and I am sure your presence was much appreciated. At my first wedding my father insisted on mixing everyone up but at my second I did the table plan and put everyone in groups who knew each other - much better! Anyway, so pleased to hear that you are OK - make sure you rest now. Lots of love and big hugs. xx

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Pleased you went Jane and made decision when to exit on your terms. Was thinking of you all day as I am sure were others. Glad the headaches were stress related and have therefore eased. Just demonstrates how powerful the mind is over the body! Take care.

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