Advice from you amazing ladies regarding adrenal fatigue whilst tapering.

[Whippetygirl]

I am just coming to the end of my four week taper following Dorset Lady seven week plan and for the last two days have had fatigue and aching all over my body. I did not expect this at this stage, I thought that would happen when I got down to about 7mgs, could this be my adrenal glands or possibly a flare, I don’t want to increase my Pred as I know I will have to go through this stage again. I also had further Spinal canal surgery in March for degenerative spine issues and removal of a synovial cyst which was crushing my spinal cord. My surgeon said I would never be pain free but thankfully I am, during surgery I had a large skin tear on right proximal forearm when turned supine. Should I repeat fourth week again or continue to week five, I just feel shattered and would welcome your advice.

[DorsetLady PMRGCAuk volunteer]

if you are having issues never continue tapering.. usually suggest you go back to previous week/stage and repeat that - as many times as you need…but do make sure you don’t deteriorate any further. Otherwise you may need to abandon this taper and return to previous dose or treat as flare…hope not 😊

Not sure what dose you are on at the moment - but you have been through a lot recently- and some start having adrenal-ish issues at higher than 7-8mg.

Would also suggest that if you are beginning to struggle, then move to the longer version of taper [7 weeks].

[Whippetygirl in reply to DorsetLady]

I am on your 7wk taper week 4 and at the end of taper was going to stay at 8mgs for 6/8 weeks, what are your thoughts.

[DorsetLady PMRGCAuk volunteer in reply to Whippetygirl]

I’d tread water on taper for a while -so repeat week 3 a couple of times -and provided you feel okay then carry on to end of taper,

But if you don’t feel better -then you need to up dose.

Agree with stay on 8mg for time you suggest.

[PMRpro Ambassador]

If I had recently had such major surgery, I'm really not sure I'd be stressing about tapering yet. What dose are you at since don't say? Some people start to feel the lack of steroid at around 10mg or occasionally higher. It isn't an exact science.

[Whippetygirl in reply to PMRpro]

Thank you for replying, I am currently on 9mgs titrating to 8mgs , I was doing so well when the fatigue hit me out of the blue. The aching is arms , legs and lumber region, I also have rotator cuff both shoulders and have problems with balance for which I am doing exercises and I have not fully recovered from a ruptured Achilles tendon.

[PMRpro Ambassador in reply to Whippetygirl]

I would suspect that you are still feeling the after effects of the op plus I wouldn't be surprised if it had woken up the immune system and you are flaring as a result. You may not WANT to go up on the pred, but with all that going on, if you don;t you may well get worse.

[Whippetygirl in reply to PMRpro]

I forgot to mention that on Monday I caught my leg outside calf on the corner of my bed which resulted in a large deep tear, my carer and I pulled the edge together with steristrips as I could not face going to A&E and having another 9hr wait. It is not easy at my age to sit on my rollator for that length of time and I had no one to go with me . Could that be the cause of these symptoms.

[DorsetLady PMRGCAuk volunteer in reply to Whippetygirl]

Ouch …, and very likely to be the problem.

I’d inclined to treat as a flare - just to make sure things don’t get any worse.

[PMRpro Ambassador in reply to Whippetygirl]

Could well be, Have you got a Minor Injuries Unit near you? They could probably have cleaned and closed it for you with a shorter wait. Did it bleed a lot?

[Whippetygirl in reply to PMRpro]

We only have a Major Trauma Centre which I could not attend as I can not leave the house without one of my daughters being with me. After the last visit there waiting for an urgent blood test because my potassium levels were very high I had to wait 9hrs. If I had gone by myself I would have had to get a taxi , I could not have been able to get a drink or go to the toilet without help, I dread to think what would have happened by myself, I probably would have wet myself. I cleaned the wound myself and closed it with steristrips the district nurse came today ( 5 days later ) and it has healed very well.

[PMRpro Ambassador in reply to Whippetygirl]

That's good at least. Waiting 9 hours for an urgent blood is less impressive however!!

[Whippetygirl in reply to PMRpro]

It was a large flap of skin, imagine a pancake the size of a saucer and fold it in half . Unfortunately it was deeper than the normal fine tear that I usually get, you could see the fatty tissue. Yes it did bleed a lot into my slipper and when I got to the bathroom and took it off there were big puddles of blood on the tiles. We went downstairs and sprayed it with colloidal silver dabbed it dry pulled the flap together and put a dressing on that the district nurses use on my arm for large tear that happened in theatre. Luckily I am a trained nurse so I stay calm but it did shake me up .

[PMRpro Ambassador in reply to Whippetygirl]

Not surprised - at least you had an appropriate dressing. My attempt was rather smaller - maybe 2in long and I did it catching the heel of my winter boot lifting that leg to cross my knees and it tore through the jeans and sock! I happened to be with my rheumi at the time - he sent me off to the ED where it was assessed and stitched by the on-duty surgeon in about 45 mins! The benefits of a small Italian hospital where I suspect nurses don't get to do such things but there wasn't a surgical patient in the queue - to be fair, orthopaedic problems tend to form the long queue here, either skiers or someone who fell off a mountain path ...