Good Morning! Thank you! From the bottom of my heart, I thank each and every one of you! You have no idea what your overwhelming outpouring of love, empathy, kindness, outrage, and compassion meant to me. I will never be able to repay that debt. Not surprisingly, I am having a "flare," and with knee replacement surgery, on Monday, 🤞🏼I need to sit back, relax and ruminate on what has transpired (and my part in it.) Namaste, Melissa
Brand New Day : Good Morning! Thank you! From the... - PMRGCAuk
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84 Replies
•
I'm delighted to see you back ! I hope all goes well on Monday . I'll be thinking of you . Xxxx
Hi Melissa, soooo glad you are back. Just rest now and prep yourself for the op on Monday. Hope all goes well .. Take care xxxx
Welcome back .
WELCOME BACK. Sending you a few PAIN FREE DAYS to use when you need them most.
Hooray Melissa - 'back where you belong' Lots of Love XXX
Good to see you back on the forum, take it easy now. xxxx
Welcome Back 🙏🏼
Relax & Let It All Go! It’s over now & time to move forward.
Recharge yourself ready for Monday 💐💕🙏🏼
Angela xx
Glad to see normal service has been resumed.
Get lots of rest and concentrate on being ready for the knee op , that's what matters now.
Good luck with it, Bee
Just so glad to have you back, you brighten and lighten our dark days, and hopefully we do the same for you (occasionally lol)
Much love xx
On Wednesday somebody ran into the back of me while I was taking my grandson home. Luckily all parties all injury free and the young man responsible was lovely accepted all liability etc etc. I am now having a flare. From being fairly well for a few months and reducing to 5mg I am now feeling the old symptoms. Damn this disease.
Hope you are well after your knee surgery and please message me if you need to talk as I have had both replaced and maybe able to offer advice.
Karey xx
Longtimer• in reply to
I thin k the beast is always there waiting to pounce.....life brings it owns stresses, that's why it's such a battle......we plough on.....😕
Welcome back, and good louck for Monday. Meanwhile, pamper yourself.
I´m so happy to see you back here. It is a day of great joy and we are all relieved. We have all missed you. - Welcome !
Good luck with the op next week and hopefully all that’s passed will be a distant memory. Onwards and upwards .
Good luck for Monday 🌺🌺🌺 xx
Good Luck for Monday.
I will be 2 weeks behind you with my new knee ( 1st March), so very interested to hear all about it . Maybe we can be rehab buddies?
I did have a new hip in June but I hear knees are a bit more difficult. I am trying to imagine what it could be like to not have the pain that I have had for at least 4 years. The other knee also needs doing so I will still not be pain free until that one is done.
As others have said, you need to really take care of yourself now. Make sure you are on enough Pred. before the op so that your body can cope with the trauma. It worked for me last year so I'm going to do the same this time-(on 11mgs.)
Will be thinking of you on Monday and looking forward to hearing all about it. x
Good luck to you too.
My Uncle has had two knees done , one he got through really quickly the other took a few months of recoup . No op is the same when it comes to knees apparently.
Let's hope you can buddy up with Mamici and test your knees out together.
Take care , Bee x
Welcome back. Now make sure you rest and prepare for your op. Good luck with it. X
So glad the upset is behind you! I understand the flare. Any negative or challenging experience sets sufferers ablaze! Our condition makes us touchy and requires people in our midst to tread lightly.
Good luck on Monday. Think pleasant thoughts!
We're twins again, even having simultaneous flares, good luck for the opportunity and best wishes for a speedy recovery XXX🤣
Welcome home Mel. Take it easy. No playing Hopscotch before Monday!
Delighted you are here again Melissa! I hope the op goes well, I'll be praying for you! Remember to do your exercises afterward too!
I love this site and it’s big beautiful heart, it seems to have the ability to heal itself quite quickly. I hope that you heal quickly too. I may make good with my threat to come to Brighton and take you for brisk walks down the seafront. I said “ beard you in your den” to Janette ( Morrison) which really made her laugh. Not sure it was the correct phrase. Take care, be brave. 🌸💐🌷🌸💐🌷🌸💐🌷🌺
New dawn, new day....good luck with the knee!
😅 glad common sense has prevailed. Welcome home 🤗 oh and good luck for Monday. So many people routing for you.
Hi Melissa all of this should not have happened in the first place, and really hope it will not happen in the future to one of us. No need to thank me, my action was aimed for correcting unjustified things. Hope the Monday feels as light as possible with the good results.
This site just isn’t the same without you, welcome back!!!!!
Thank you for your good sense, humour and support. Your posts have always encouraged and entertained. I will be thinking of you on Monday and in the coming weeks. Having ‘nursed’ husband (I’m no nurse!) through his knee replacement I realise it’s a painful experience but well worth the operation. The secret seems to be exercise, exercise. Bless you.
Hello Hidden 
Nice to see your post , I have not been on this Community long but you were one of the first to come to my aid and offer support , kindness and made me feel so welcome and so I am glad you are still here as I would have missed you already
All the best with your op
Take Care x
Dear Melissa,
Thank YOU, on behalf of us all, for you Compliments...What can I say, your our Friend! I'm glad that you are now 'Back In Circulation' once again. Good luck with the 'Op' Melissa, I sincerely hope it gives a good 'Long Term' benefit. There isn't much more I can say, other than....
Good Luck Melissa, we are Praying for you.
AndrewT
Praying for a smooth recovery for you, ❤️
Best wishes!
So happy to see you back! All is right in this world of ours now!
Good luck
Take time for yourself and come back when you have had your surgery
be kind to yourself as well
Hooray! That's made my day. Now we can all get back to our normal.
🌷😀🌹🌼🌻👍
Aren’t you a bit too young to be having knee replacement surgery !
Sorry to hear you're having a flare, although it's not surprising. Do what you can to regain your strength for Monday.
I am and will be thinking of you. xx
Welcome back! The sun is shining again,So glad. I know you were not gone long but it seemed like forever. Now we can all move on and be 😊 happy!
It;s great to have you back. Take care of yourself and good luck with the surgery.
Very, happy to see you back...hope all goes well with your surgery on Monday. Rest, Rest, Rest! xxx
Beautiful pic.....sunny like you.x
You're back...Yayyyyyyyyyy... good luck on Monday xoxo Coda
Hope it all goes ok for Monday. I have had both mine done 8 years ago and survived it, I’m sure you will be fine. Just rest up until Monday 💐
So lovely to have you back Melissa and sorry to hear you are having a flare. I have really missed your posts and rants. All the best and big hugs for your knee surgery. xx
🥂🥂xx
I am also new to this forum, but it's nice to hear you are back, best wishes for your hop xx.
Xx
Nice to have you back Melissa. Now rest up and get ready for this op on Monday. All the very best - will be thinking and praying for you xx❤️
I'm new to PMR and probably going to find out if I have GCA (I have all the symptoms). I, too was an active vibrant woman who loves life, but it seems life has other plans for me also. First. I have to ask you if you live in the UK or US? My reason is that the UK seems to use only prednisone. Years ago I had to go on a high dose of prednisone for 2 years. I had all of the side effects from the drug and felt like I was trading one bad disease for a drug that took away my quality of life in a different way. I'm terrified that I'll have to go on it again. I do know that the US has other drugs (supposedly for pmr).
One more question please. What were your symptoms for GCA?
Rest up and best of luck with your upcoming surgery.
• in reply topollymarierose
Hi pollymarierose, Sorry to hear your news about possible GCA symptoms... I'm American, but live in the UK. I was put on Prednisolone, after being diagnosed with GCA in Nov 2017. I was then told I had probably had PMR for several years. Take a look at the the links below, as they will link you to my blog, where you will find my personal history with PMR/GCA described. Best of luck to you! Melissa
Warning - The links below are being posted specifically for pollymarierose, they are not intended any other member. If you click the link)s) and go to WordPress, I will not be held responsible for any distress/upset that you experience.
rantingsofamadwomanblog.com...
rantingsofamadwomanblog.com...
pollymarierose• in reply to
Thank you, Melissa! I'll check out your blig.
pollymarierose• in reply to
blog. Read your blog and think we must be twins! Of your list of symptoms, I could see that half of those could be (with 50% of those) are related to steroids. That is my big question. Aren't there meds more advanced than prednisone nowadays? I wad on high doses of prednisone for years back in the 80's and 90's and new that they caused negative symptoms to where, although they saved my life, I had no quality of life. So, I am fearful of what rheumy is going to say. However! Like you, I'm a fighter!
• in reply topollymarierose
Unfortunately, not any that I know of... Corticosteroids are the only treatment I know of, but sometimes they use other drugs to help you taper down quicker. But they have side effects too.. (like Actemra)
pollymarierose• in reply to
I guess we just learn as we go along, don't we? I am reading that some people get along very well with prednisone while others don't. Right now the max dosage of celebrex has helped about 50%. If that's the best I can get from any drug, I'll take it until something better comes along. One little concern of mine is that with gca, prednisone seems the only thing that has saved people's eyesight. I'm taking oral steroids in my eyes right now and hope that's all I'll need. 🤓 Okay...I'll wear glasses too!
I meant topical steroid drops for my eyes.
Topical steroids won't prevent damage due to GCA. The sight loss is due to the blood flow to the optic nerve in the brain being reduced.
Keratitis is a superficial problem (the surface of the eye) so topical steroids are ideal. Totally different situation. What symptoms of keratitis were you experiencing?
• in reply topollymarierose
Sorry, I am no expert.... and i have only used Prednisone. I don't know, Celebrex, but thought it was for pain and inflammation from "arthritis." I have not heard of topical steroid use in eyes for GCA, but that's PMRpro's territory. I hope you find something that gives more than 50% pain relief. The Pred did it for me 100%, thank goodness! Feel better.
pollymarierose• in reply to
The drops of fluromethalone for my eyes saved my eyesight a few years ago. At that time I had extreme pain in both eyes and could only see shadows. I begged for nighttime when there was no light unless I chose ( which I never did). The condition then was keratitis. I was never properly diagnosed when the symptoms first started and that's the reason I almost lost my sight permanently. We lived in a very small town 200 miles from a big city and I got new doctor every 3 months. There was'nt specialists in any field and I knew I was in trouble when they couldn't even pronounce the names of my diseases. So, we moved to civilization, I found a corneal specialist and my sight was restored. After this long story, I've been complaining to my eye doctor about symptoms of keratitis, but he can't find anything to indicate that the keratitis has come back. I'm on the drops again as a safety precaution. However, I haven't seen him since I was diagnosed with pmr. I'm seeing him to tell him about pmr/gca and I guess we'll go from there.
• in reply topollymarierose
Wow, I'm so sorry... it sounds like you have had more than you fair share!!!!
pollymarierose• in reply to
I've honestly been through a lot since I was 16, so it's become a way of life to me (I'm 63 now). I was hoping I would finally catch a break. After all, how many diseases can one person have? They are all in the connective tissue and auto immune diseases, so, I guess a person can have a lot. I just think that pmr/gca is the toughest I am yet to experience. I've never been one to complain (and still won't) and that's why I am so thankful for all of you lovely people. You all are the first people since I was young who I can actually open up to.
We'll all help each other get through this, won't we?
The UK doesn't only use prednisone - in fact, they more often than not use prednisolone. However - the only thing that works reliably for both PMR and GCA is corticosteroids - are you maybe confusing the terms? Prednisone, prednisolone and methyl prednisolone are all medium acting corticosteroids so are commonly used for treatment. There are others but their effect either lasts much less than or more than 24 hours which complicates things.
Actemra/tocilizumab has recently been approved for use in resistant or recurrent forms of GCA all over the world but there is not yet any evidence that it works to treat GCA without being in tandem with steroids - i.e. it is a very expensive "steroid sparer". Corticosteroids are used in the first instance to reduce the swelling and reduce the risk of sight loss. For the majority of patients steroids work reliably and with moderate side effects - none as bad as the ultimate side effect of GCA. Actemra is a biologic, it comes with its own risks and potential side effects and only seems to work to remove the need for pred for about half of patients, the rest appear to still need some ,albeit usually a lower dose. Actemra costs about £12K per year - drug only without the associated medical care costs depending on the way it is to be administered.
And if Celebrex has helped a large proportion of your pain - then there must be a doubt that what you have is "just" PMR as it rarely helps. But it isn't a case of pred bad, no pred good: even if they help with pain, NSAIDs won't relieve the inflammation that causes the symptoms fully, it will continue and cause damage to blood vessels and other tissues and, in the long term, lead to increased rates of other illnesses associated with such damage such as stroke and cardiovascular disease.
Thank you for the information about prednisone and prednisolone. I've never heard of prednisolone but it's been years since I was on a corticosteroid. Unfortunately, I can't get into see my new rheumatologist for a couple of months. The more I read, I think I'm going to have to go on a cortosteroid like everyone else. I'm taking the highest allowed dose of celebrex and I've barely gotten sleep in the last 24 hours because of inflammation and pain. Back in the 90's when I was on prednisone for 2 years, we didn't have the advantage of forums like this to help us cope and to support each other.
In which case it seems pointless continuing with Celebrex as it has some potentially unpleasant and dangerous side effects:
webmd.com/drugs/2/drug-1684...
There is a study suggesting it isn't as black as it has been painted - but since it was funded by the company that make and market it I wouldn't be particularly impressed by their claims...
Please have patience with me. Once more I'll explain why I'm only on Celebrex for now. I was just diagnosed a month ago. I won't get to see my rheumy for 2 months unless a slot opens up and I can get in earlier. I would rather have my rheumy prescribe my medicines for me as he will know better what treatment I need. Celebrex is merely getting me by. I am more confident listening to everyone that a steroid treatment will be the best way for me to go. I'm also confident that because medicine and knowledge are more advanced than my last experience, that talking to everyone will help this round go better. I am just learning about this disease.
I got Keratitis because of Sjogrens disease and my case was unusual because it was not the top layer but it was the sub layer.
So, what I'm saying is....I am willing to take whatever medicine I need to save my eyes and to have a better quality of life with pmr.
I'm not impatient at all - I was merely explaining that a) Celebrex doesn't normally do much for PMR and nothing for GCA in protecting vision and b) it has side effects of its own. So you do have to wonder whether there is any point continuing to take it. That is all.
I appreciate your concern. That's why I'm here..You are very correct about Celebrex. When you sent me the PDR links for celebrex and prednisolone, I learned how much more beneficial preds would be. Thank you 🙂
Hi lovely,
So glad you're back with us. Wishing you all the very best for Monday...Hope it goes well for you. I'll be thinking about you. Hugs and Namaste (I was in India over Christmas...!!)
• in reply toIzzysGran
❤️
Welcome back Melissa!! Wishing you lots of luck for Monday. Rest up till then xxx❤️❤️❤️
• in reply toYork54
❤️
I am so pleased you are back Mamici,l hope that you are OK after the flare,and l hope everything goes well with your knee operation on Monday .Take care,much love from Patricia xxx.❤️
• in reply toGrants148
❤️
So glad you are back with us again,I would have so missed your wonderful posts.Iam sorry you are going through a flare but understandable I think.Rest and destress before Monday,I hope all goes well for the knee op,then rest and destress again! Will be thinking of you.Lizzie xxxx
• in reply tolizzie47
❤️
Sure. I'm not exactly sure how to do this either. 🙂
PolywotsitPMRGCAuk team member
Hi again - just to be clear about moderation -
We wouldn't want to curtail a relevant conversation on treatment options for PMR and GCA!
Best wishes all,
Kate
• in reply toPolywotsit
Thank you, At the time, two days ago... I was still a little "gun shy," and concerned about the number of responses (on my post) and the length of some of them; more importantly, and because it was a RELEVANT CONVERSATION, I suggested (in a private message) that the discussion be copied and pasted into a separate Post, so that other members, could find it in the future.... No one else is ever going to see that exchange on "Brand New Day."
Good morning lovely one. I just wanted to remind you tha I am thinking of you today, and hope the surgery goes well. Looking forward to reading your posts again soon. Love n’ hugs...
• in reply toIzzysGran
❤️
Hi Melissa
Hope all goes well today and wishing you a speedy recovery!
Thinking of you.
Marlene x
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