PMRGCAuk
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Tapering, pain!

I’ve been tapering down from 10 using the dead slow method recommended. I’m down to 8 and today I feel like I’ve been run over by a bus. Every joint in my body hurts, even my toes. I’m shuffling around the house moaning. I know life has been stressful this last three weeks. Various household disasters, a husband who is due next month for a knee replacement and is quite a lot of pain. Today I’m waiting for friends to arrive for three days, we were going to stay with them but husband didn’t think he could do the journey. It could be the stress and extra work this has caused. Although I know they will entertain themselves and help with household tasks. Will this pass, is this sort of pain expected? It doesn’t feel like the original PMR pain. May be I’m just falling apart!

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Is this the first day you’ve tried 8mg?

Could it be steroid withdrawal?

Does paracetamol ease things?

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No been on 8 for 4 days. Just taken paracetamol in hope!

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So you’ve dropped straight from 9 to 8? I recently did a straight drop from 10 to 9 and the first week was pretty rough, evened out by day 8ish. Plus I get extra fatigued after a drop. For my next drop I think I’m going to toggle 9/8 for a week to see if that’s smoother. Maybe that would help you now? Would be a shame to feel so miserable while your friends are here. Maybe go back to 9 while your friends are here then toggle downwards after they’ve gone. I really think we need a quiet and restful week to reduce successfully. Hope the paracetamol helps.

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No, it wasn’t a straight drop. I’ve been following the dead slow method recommended on this forum. Was going to hold at 8 for a couple of weeks. Now think I’ll go back up to 9 while visitors are here. To say you get fed up of all this is an understatement!

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Ohhhhhh, bummer. So sorry to hear this... Soraya_PMR could be right though... I get horrible withdrawal symptoms! They last 4-5 day before settling down. Fingers crossed!!!!!

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Joy! Friends just rung to say they are about 15 mins away. They’re staying until Sunday. I just want to curl up on the sofa. I’ve never ached so much. Taken paracetamol in hope!

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I had dropped to 9mg three and a bit weeks ago and I have been all over the place. Last week I could hear it no longer so took extra 5mg 1 day then straight back to 9mg. I felt a lot better for several days. I have accidentally missed a dose so am wobbling after a stressful week. I feel a bit better today but will still consider an extra mg just to play catch up. Have you got licence to change dose? In the meanwhile good luck with the weekend and paracetamol. Don't forget visitors can be asked to help!

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Oh so you did miss a dose the other day when you said you couldn’t remember taking them :(

I have forgotten before, but reality dawns usually around midday or early afternoon.

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Yes I am almost sure I forgot and I was so rough that day. I was busy but it's actually obvious that the body is wrong. I beat the inflammation drop this morning and am so much better than 2 days ago but very tired.

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Yes, I have the license to up my dose. It has been a stressful time and really could have done without visitors. Husband so disappointed not to be able to visit friends I hadn’t the heart to refuse their staying here. Although I did point out we were staying in a B&B they are staying with us. Going to up my dose today. Thank heavens for this forum.

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good. definitely up the dose. they try and enjoy friends or let husband enjoy and head to bed!!

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Ugh! Not even the chance of a nap!

Greet them, tell them to help themselves to tea and coffee.....but you simply MUST have a rest as advised by your nurse (me!!!!! ;) ) and then you’ll be able to enjoy your evening. Good luck.

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I want you to be my nurse, too. I'm at work right now. Will you order me to go home to take a nap?

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Yes! And I think you should take the rest of the week off!

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You are the best nurse, EVER!

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Ah-ha! Delusions as well. You probably need another week off to rest ;)

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Like, like, like, like....

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Thank you, my first words to my friends were, ‘lovely to see you, I’m afraid you are going to have to sort yourselves out, I’m not 100% and need to pace myself.’ So far so good, we will see what today brings.

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Well done Jean56 that’s the way to do it!

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Well done! I sometimes forget that this is actually a very serious condition and I only feel ok because of the Pred, but the PMR is still rumbling along underneath, and friends can't SEE how unwell we are so we have to tell them because we tend to look pretty well. Please keep putting yourself first as much as you can and make sure you get what you need. Have a good weekend :)

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I agree with the others. Explain to your visitors that you aren't feeling well, show them the refrigerator, etc., and go do what you need to do for yourself. Hopefully you'll feel better soon. Best wishes, too, on a successful new knee for your husband.

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Fingers crossed

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...okay, but at least they are staying 15 min away!!!! Not with you!!!!!

We have friends coming from America in July and she keeps telling me I have from now to July to be ready to socialise!!!! WTF?????

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Socialize yes, but is she expecting Partaaay!

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I hate NO IDEA!!!!!

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When my husband and I visited my grandmother many many years ago, she lived in Devon, she booked us onto a bunch of bus tours and sent us off nearly every day to entertain ourselves, which we, in callow youth, enjoyed very much. I still remember the trips - Wells, Exeter, Cheddar Gorge. Never thought until this minute that she did this as much for herself as for us!

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Ooooooo, very smart Grandmother!!!!! I love her!!!! Jean56, get on-line and start booking those bus tours!!!! ; )

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What a fantastic idea! Clever lady. Will file away that idea for the future. I’m hoping I’ve learnt my lesson. Trouble is you hear the words coming out of your mouth and you can’t stuff them back in, and your lumbered with your on the spur of the moment bright idea!

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OH GOD... I do that al the time!

"Let's meet for lunch," I say... knowing full well, the possibility of me making that lunch in town is about one in million!

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Before I was hit by this dreadful disease, I met my ex sister in law in town. I still get on very well with my ex in laws and my ex husband and new wife. I told her mutual friends were coming to stay. She immediately offered supper for all and I heard myself saying, ‘No, you must come to us.’ As we walked away my husband asked if I realised what I’d done.... hmm I had but couldn’t change it, just started planning to feed 18 people. Couldn’t do it now, my two extra guests are enough.

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😳 Oh my! I couldn't do it before PMR/GCA!

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This is how I am. I hate to plan anything because I never know how I’m going to feel. When I feel good everything sounds great but some mornings I get up and know I just can’t!

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Sounds like it might be a good idea if it's you, not your friend, who decides what "ready to socialise" means. Just the fact that she keeps mentioning it and is even trying to place a time limit on your health would be enough to send me straight to bed!

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No,they are staying here. The 15 minute warning was to put the kettle on for tea! So far so good they’ve been helpful. We are going out for dinner this evening. I told them last night breakfast could be found in the kitchen. It’s not just the feeding but all the talking. The thought of, ‘getting ready to socialise, ‘ is enough to make me want to lock the doors and hibernate!

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Ohhhhhh, bummer. BREATH, inhale, exhale, inhale, exhale.

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The effort to concentrate and deal with the constant noise is sooooooo draining. The brain fade turns into foggy fade and your poor body has to pick up the slack which is impossible. Drift through to your bedroom every few hours, set phone alarm for 15mins and Leahy down and rest.

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Feeling your pain. In a mad moment I invited my family for a pre Easter get together. Tomorrow I have 4 adults and 3 grandchildren coming to visit and stay overnight. I've been re arranging beds etc and , just like you said, the notion of living doors and hibernating really appeals 🤐 ho hum. Wish I could sleep, that might help 😪

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In a word.. "Ack!"

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It doesn't matter what reduction method you use, how slow it is, NOTHING will get you to a lower dose than you need to manage the inflammation.

Under the circumstances - go back to where you were last well. This isn't a race and if you are under stress all bets are off.

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Yep, upping dose today. I have realised stress makes me worse and boy has this past three weeks been ghastly!

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Hi Jean56,

I have been trying to reduce from 10 for a long time, finally reached 7.5 but only by reducing 0.5 at a time over 4 weeks then staying at lower dose for 2 weeks.

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Hi jean56. I can empathise with you wholeheartedly. I too have been tapering, from 15 initially and had reached 6.5 and all was well. I'm currently on the return journey after a few days in Amsterdam. The trip was wonderful but the stress on my body from the train journey to Gatwick and then pushing my suitcase around the airport made the first two days of the trip excruciatingly painful. I upped to dose to 7.5 and also took some CBD oil and the pain began to subside. Now 3 days later I'm on the way home and took the option to place my carry on case in the hold for a few extra pounds. That has helped. but all the walking, shaking around and waiting has taken it's toll. The train journey from Gatwick on the Southern Region should be a relief but isn't. It rattles and rolls and shakes about so much I can feel the soreness starting all over again. We have started using lifts where possible and not rushing about, it's all we can do really if we want to have some kind of life. Please take care and rest as much as possible (without going out of your mind with boredom!). This disease will go, we just have to be patient and live life according to our limits. Good luck with your visitors. If they are good friends they will understand your possible limitations. If they don't just give it to them straight!!

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Oh boy, do you have my sympathy. We went ‘up north’ for Christmas. The journey there and back, via two stops to see friends and relatives was dreadful. We went in the car, at least I didn’t have to suffer airports and the dubious joys of the railways, especially southern and south eastern rail! Our friends go home tomorrow, it’s very hard work even though they are helping. It’s the social bit I’m finding hard I need peace just to sit quietly and not talk. I keep saying life has to be easy, employ people to do stuff I normally would do. My husband isn’t as able to do things as he used too, knee replacement next month, please God it’s successful. It’s awful to say roll on tomorrow, I will just collapse in a heap for 24 hours. Unfortunately Monday we have a funeral to attend and several hospital and doctor appointments next week. It would be great to see a clear week in the diary. What I have learnt, and here I’m putting it in writing, I will not be inviting people to stay!

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Hi jean. Yes you do learn as you go along. I've learnt that I have to live with the 'me' that I am now and not hanker after the me that I was and all that I could do then. My gift yesterday, after being home a few hours, was a visit from my two year old granddaughter. She gave me the biggest, squeeziest hug and everything was fine. You will relish the peace and quiet now that your visitors have gone, have a lovely rest, then as the song goes, 'Start all over again'.

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Please don't fall apart Jean56. Am sending you a virtual hug. x

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