The final taper

[TheMoaningViolet]

I though an update on my taper may be useful to some people After 3 weeks of alternating 0.5 mg and 0 mg, I am starting to feel normal again. I held my nerve through some gruelling muscular pain, which seemed unusual but it was never particularly symmetrical and I was always able to connect it to a previous activity. Still, it was very worrying and it lasted a long time. I will stay on this step another week for good measure. We are off to a cottage in Wales and I am not wrecking our holiday by hurrying the taper.

[HeronNS]

Brilliant! Enjoy your holiday.

[9lives]

aww hope you enjoy your break. I’m down to 1mg and have been for just over a year. Started to reduce down to 3/4 mg in January very slowly but had to go up to 2 1/2 mg for a couple of days, then back to 1mg. Then tried again recently to reduce. But have Just got back from a holiday in Poland so taking it slowly and stay at 1mg for a bit. I understand the muscular bit. But hopefully we will get there in the end.

Thank you for the information on your reduction.

Good luck

Carole x

[TheMoaningViolet in reply to 9lives]

Good luck. It's a little bit nerve-wracking.

[Suffererc]

good luck. I am also on a 1/2 mg dose - 3 rd day. My dilemma is - am going to have my gall bladder removed next Saturday and don’t know whether to up the dose or just stop before.

Hope all goes well with you 😊

[PMRpro Ambassador in reply to Suffererc]

I would do neither. The anaesthetist will provide adrenal cover during the surgery - make sure they know you are a long term steroid patient and don't rely on telling a nurse, make sure it is the anaesthetist you see pre-op but also tell EVERYONE! Then see how you get on post-op - it would well trigger a flare so be prepared.

[Suffererc in reply to PMRpro]

thank you. I have already told the consultant. He said they would be giving me steroids when operating. I will tell everyone as you say Thanks 😊

[Ridge]

Brilliant! Good luck. Can you explain the muscle problems more?

[TheMoaningViolet in reply to Ridge]

Hi Ridge, yes.

I have a couple of problems that are not PMR-related. My left foot was immobilised following a ligament injury back in 2015, so the arch has slightly dropped; sometimes it hurts. Since I've been on steroids it stopped hurting, but it hurts now again on 0.5 mg. Also, my right shoulder is aggravated because of the way I used to lift it when carrying something on it (like a heavy bag) and especially during ironing. My physio made me aware of the issue and gave me exercises. The reflected pain from the tendon on top of my shoulder is felt in the muscle at the top of my arm. Releasing the pressure in my back (high up just to the right of the spine) also helps with the shoulder.

To deal with the shoulder problem, I need to do shoulder exercises regularly (3 times per week). I also do Pilates on Wednesday for an hour with a teacher. I decided I needed to try doing more gentle exercises at home, so in the last month I tried doing a few Pilates exercises a couple of times at home, as well as a bit of yoga. Five weeks ago, I started doing a bit of face yoga and tried a bit of Qigong. Some of the warm-up face yoga poses involve a lot of neck and shoulder movement and obviously, there are many exercises which require me to hold my hands and arms high up in the air, however, this was all rather gentle and should not have been very taxing for my muscles, but it was.

When I got down to alternate days (0.5 mg and no steroids), the first week I was starting to feel heavier in my movements as if suddenly I gained a few kilograms. I was also slower and more tired with a couple of episodes of weird palpitations (not connected to exercise, but experienced after returning home from a full day at work). I started feeling tired again (afternoon or early evening). The muscular pain was more extreme than I would typically expect from any physical activity. Because of doing a lot of facial exercises, my neck, upper back and shoulders were hurting (this was terrifying as my PMR pain started in my neck and upper back). My arms were so painful I stopped doing shoulder exercises as I knew this could be helpful. I would wake up with my muscles in a lot of pain, but it didn’t keep me awake at night like PMR used to. The worst pain was in the middle of the second week when even my right hand started to hurt and I had to try brushing my teeth with my left hand. I decided to skip my Pilates lesson that week to give my body a chance to recover.

I was expecting to feel a lot of muscular pain following my Pilates lesson last Wednesday (week 3 of the taper), but, in fact, I felt better the next day, the signal that the situation was shifting in the right direction. On Friday morning, I went for a long walk with my cousin, and while I was very tired in the evening, my muscles were fine. Today, having arrived in our cottage, we went for a brisk walk for over an hour and I feel fine even though I have a cold and have barely slept last night (the first night in a new bed is always a bit difficult).

[Mofred]

Hi violet . I just wish you all the best . I am on 1.5 mg from yesterday . While reducing by 0.5 a month , I havent had symptoms of pmr for some time . I have however experienced nausea hot flashes and constipation which seems a bit odd if reducing but hopefully will pass . Re alendronic acid . I am going to speak with my dentist before she takes my front tooth out because I am not sure that she realises I am on it or could have problems . I have started on chlorohexadrine mouth wash and temporarily stopped the aa till i speak with her . I do have a heart murmur which doesnt trouble me but they stopped giving anti biotics for dental work some years ago which I guess was good because dont want to cause immunity to them . Its being between a rock and a hard place for those who need steroids . I am sorry that some of you are suffering with osteoparosis and fractures . it must be very painful . I wish there was proper screening for this particularly for women in the menopause .

[PMRpro Ambassador in reply to Mofred]

"I have however experienced nausea hot flashes and constipation which seems a bit odd if reducing but hopefully will pass"

All signs of potential adrenal insufficiency.

[Mofred in reply to PMRpro]

Do I need to speak with gp about my symptoms ? or do my adrenals just need to start working properly on their own . Thankyou for your advice x

[PMRpro Ambassador in reply to Mofred]

They have to start working on their own. The only trigger for a return to duty is there being a very low level of pred in the blood system at about midnight and holding out, putting up with the downsides until your body gets its act together. SnazzyD has written eloquently about the drag ...

[Mofred in reply to PMRpro]

thankyou as michael rosen says "got to go through it"

[DorsetLady PMRGCAuk volunteer in reply to Mofred]

They will recover by themselves-in time. Maybe have a look at this-

healthunlocked.com/pmrgcauk...