I sometimes think that I'm invisible

Sometimes I really do wonder about what goes on in GP's heads! It doesn't really matter whether what someone is exhibiting as side effects - if stopping the pred isn't an option, and it isn't here, then they need to consider the best means of modifying these side effects. They happily hand out omeprazole to deal with one side effect - what is the difference for the mood changes and anxiety? There is stuff in the medical literature about it so it isn't an unreasonable question.

Yes - see someone else, one who may put their brain in gear! However, one of the hopes with Lodotra is that patients will be able to manage with a lower dose to achieve good control early in the day and a lower dose is always good if the PMR doesn't return. Certainly I had a lot of very unpleasant side effects on the Medrol and all of them started to disappear very quickly after starting Lodotra.

As ever Eileen you've given me sound information that I can draw from. Thank you.

this GP had also told me that Lotodtra has no proven success rate so I'd asked him if he could check for me. He also admitted he knew little about it so would check as asked.

when I saw him the next time he said he'd been in touch with the central pharmacy and there were signs it was effective. When I explained my rheumy was willing to prescribe he was fine so when he receives the letter and prescription I may get the Lotodtra finally, fingers crossed.

I've also been waiting months to have a broken tooth removed at the clinic but now I have awful toothache and pain I my neck, cheekbone and face in general plus earache and a low grade temp. Looks like I'm going to have to visit the dentist again.

never rains but it pours eh?

Do you know what he means by erosions? He says I have them on my eosophagus and top of stomach.

No proven success rate eh? No doubt he doesn't read German! Or American - since it is approved there too. It is pred, pred is pred - but the biggest plus for you is the coating on it. But why say something and then admit you don't know anything about it? For goodness sake!!!!!

Erosions is the medical word for inflamed and damaged areas of tissue - you could also describe them as ulcerations. When you have reflux the acid from the stomach comes in contact with the lining of the gullet. The lining of the stomach is designed to resist the acid, the lining of the gullet isn't and it gets damaged, often becomes very uncomfortable and the damage can take a long time to heal. If the damage continues it can get worse (obviously). Don't allow anyone to persuade you to take bisphosphonates of any sort (alendronic acid and other similar drugs for "bone protection") because this is a reason not to take them, they can make it worse.

Darn the automatic emoticons - that isn't meant to be a wink, it is meant to be a close bracket!

Oh well, the wink made me smile and that makes a change from crying!

i was asked to take alendronic acid by my rheumy but when he found out about the acid problems and the recurrence of the hernia he told me not to take them but I hadn't anyway. I think it was you that said to think twice about taking them before.

i suppose this is just another chapter in  the pmr saga, so my GP says! 

 

Well Eileen I've been told I can't have Lodotra even if my gastro man is on board. Just had a phone call from GP, she says the drug is off licence and they cannot prescribe it. So I'll have to try your suggestion missing out the 1mg but can't find the info you sent. 

Im really vague and can't think straight at moment, not been good taking these antibiotics again. Also waking up in pain in neck, shoulders, upper arms and thighs. Not sure why as I've been good for a while now.

anyway it looks like I'm not going to be able to try anything else anyway. 

 

How very bizarre - since I know of 2 ladies in the UK who are prescribed it. Perhaps it depends on the Health Trust. A rheumatologist should be able to order it as it is licensed for RA. 

Whatever!

You will find my reduction scheme in the 4th and 5th posts of this thread:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

If you use it slowly enough - maybe repeat each step once or twice as you get to just a few days between the 1 day of new dose  - it should work OK. Others have used it like that.

Are you doing a lot in the run-up to Christmas? Plus, if you have needed antibiotics for an infection then the PMR will flare - don't start a reduction until you are better. 

I sort of said oh whatever to the GP not being rude just exasperated and feeling really ill and depressed doesn't help at all. She actually said she'd been on the forums and researched Lodotra and has no idea how some patients have been prescribed it but cannot help.

im doing as little as possible but admitt I've been out every day in short bursts to get things done with hubby's help bless him.

ive actually thought about taking a higher dose till I'm sorted with this tooth, would it be ok?

thanks Eileen I'll try that way of reducing when I feel better.

If a slightly higher dose deals with the PMR symptoms I don't see why not - you often see in the literature that a higher dose of pred is recommended during infections or if you have had an accident.

Have you discussed the antidepressants too? See - I haven't forgotten that part of the discussion either!

My husband asked me what we're having for Christmas dinner this morning. I pointed out we go for a pizza on the 25th since the hotel in the village we can walk to doesn't usually open until the 26th. Christmas Eve is the problem - even the pizzeria is closed! So it will be steak and chips...

Our daughter has sent a present for us (very unusual that) but there isn't even a tree to sit it under. Even the cards are lying in a pile in front of the TV. There ARE lights on the balconies. And OH bought the Christmas/New year TV mags this morning. 

Being a Bah Humbug Person makes for a very easy life at this time of year!!!!!! 

I'll take 12.5 tomorrow and see what happens as I've not even able to do much today. It's the works do tonight from the school I worked at but can't see me getting there.

ive twice told GP how I felt but he just said its mood swings from pred when it really isn't  I've never felt this way before.On Monday my daughter is coming with me to see the GP so I'll have back up. I don't know how you remember bits from discussions Eileen, you answer so many queries. 

Your way of doing things at Christmas sounds good to me and my husband really just goes with the flow. He saw a hat this morning with bah humbug on it, he almost bought it and it was only 99p. Steak and chips, mmm sounds delicious! 

My cards are still on the table and my granddaughter came round to put up the tree, I have to make an effort as my two daughters and three grandchildren come for Christmas Day  but it's a joint effort cooking the dinner so I do get lots of help.

a sigh of relief is to be heard at 5.0 cock on Christmas night when we are alone and all is quiet.i do love my family to bits though 

 

You need someone to take you to the door, settle you in a corner seat and hand you a glass of wine! Then you can hold court with your friends. If your taxi driver doesn't stay with you, then you need a mobile phone so you can call for them when you have had enough. And tomorrow you stay in bed!

Our non-Christmases started when we lived in Germany and the two of us spent Christmas Eve touring around 5 carol services as part of the choir/music provision (and our daughters slept under a pew). We went home after midnight to a present and a mincepie and a well earned glass of wine. Then either on Chrstmas Day or soon after we headed for the Dolomites in Italy to ski. When we returned to the UK my mother-in-law came to live with us (in a granny flat, not in our bit of the house) and I expected my mother would join us for Christmas, she only lived a short distance away, as did my brother. She had never spent Christmas with us and her grandchildren so it seemed it was my turn. But without saying anything to us she and my brother booked a hotel for Christmas dinner, her sister had died, it was her first year without her and she wanted to do "something different". Obviously Christmas with us for the first time wasn't different enough. We invited the old lady from across the road and spent the afternoon sitting having a shouted conversation with her and my MIL - the girls were bored out of their minds! The entire run-up to the 25th my MIL had whinged about hating Christmas, it only reminded her of everyone who died, she moaned about how the girls behaved - she wanted them to sit and talk to her - and this went on after Christmas. So I finally snapped and said that was no problem, the next year she could have no Christmas, we would go on holiday skiing as we had always done. She had another son, she could visit him and his children. Unfortunately he refused to have her () so I arranged for her to spend the week in the residential home in the village but just a couple of weeks before she decided she'd rather stay at home on her own. I think she thought she'd get us offering to stay with her - but she had already stopped us going to a close friend's wedding by having a paddy about it and I wasn't falling for the emotional blackmail a second time round. 

Christmas Day dinner was a burger up the mountain and we were out in the fresh air all day - far more fun. So after 12 years or so of that sort of Christmas, doing it this way isn't much different! No leftover turkey to get fed up with, no indigestion, no weight gain 

If your usual GP won't help even with your daughter being there - find another. It doesn't matter if it is the pred or the PMR you need some help to deal with it. Once you feel less fragile emotionally the rest will come right too - been there, done that, definitely got that t-shirt. 

Oh yes - and see that joint effort for dinner? Wrong - you just sit in the kitchen with a cup of tea and supervise!!!!!!

Wow - what a mother in law!  Mine was a darling.  One of the things I will always remember her for -  she was having a groan about something (and, believe me, that was unusual) when she said "Oh, well.  I suppose I am old"(she was 95 at the time!)  and I answered "Mum, you are not OLD you are ANCIENT." She nearly wet her knickers laughing!!!

Yup - that's the sort of MIL I want to be! Got plenty of time yet to practise though!

David's mother thought the world revolved around her - I was the first person who'd had the temerity to say no to her. NOTHING would have persuaded me to have to live in the same kitchen as her. It wasn't fancy but Germany does do superb mini-kitchen units for that purpose. We used to invite her in for Sunday dinner and all she managed to do was upset everyone by making an (to us) outrageous comment on politics (she was true blue because that was what her father had voted) so I started attending Evensong at the local cathedral and dinner was a bit later. She wouldn't wait so we were left alone. Naughty Eileen 

I'm not surprised you do things your way, it's certainly not a nice way to celebrate Christmas or any other occasion. Thankfully my mother in law was strange but mild mannered and very kind  my own mom is 92 and beginning to get tired and a bit frail so Christmas is a must, we don't know how long we have her for and she does like Christmas. She goes to my sisters Christmas Day and joins us Boxing Day for a couple of hours .

my daughter agrees with you, she's noticed me getting upset for weeks and will back me up when we see our GP. She works as a community nurse close to here and says she still thinks the refusal is financially motivated. She's going to try and find out if there's any other way I could get Lodotra but said to try the rheumy again with evidence from my gastro man  I will try the slow reduction anyway.

im off to get ready for the works do, my granddaughter is coming with me and my daughter will take us and fetch us back so , no excuse. Lovely conversation Eileen and thanks for the usual excellent advice. 

Hope you have a lovely time - and there are lots of people to chat to! No staggering home drunk now!!!!