Feeling a Bit Better.....

[PamelAnneCT]

Feel like I'm possibly, maybe feeling a bit better. 5 days at 50mg instead of 60mg and the pain is there but tolerable, the brain fog is slowly lifting I can actually concentrate a little bit. Still physically exhausted, washed up in the kitchen for maybe 15 minutes and had to rest for 30. Get showered and dressed, have to rest for 30. I'm supposed to be getting back to work in 10 days but I don't know how I'm possibly going to do it. The thought of the commute, working all day and then driving home makes my head pound.

Does anyone have any experience with trying to work while in the acute phase? I could so use some advice.

Thank you.

Pam

[DorsetLady PMRGCAuk volunteer]

Hi Pam,

A drop from 60mg to 50mg is quite big, so not surprising you're getting withdrawal effects, I certainly did when I was a that level. And like you they lasted about four or five days, so hopefully you should level out soon. Unlike you, I wasn't at work, so could rest when I needed to. I think you need to think seriously about your next drop. I see in your first post you were intending to go down to 40mg, however I would suggest 45mg might be better.

I appreciate that your doctor is trying to reduce ASAP, but once you've been on Pred for three weeks your body stops producing its natural cortisol, so you might as well take the reductions a little more slowly because the Pred is doing the work anyway. If you are in pain then you probably aren't taking enough Pred to control the inflammation. Trouble is, at the beginning it's sometimes difficult to tell what's a withdrawal system and what's a flare. Usual rule of thumb is - if the pains lessen after about five days after a drop then it's withdrawal (and will eventually go), if they get worse after four or five days then it's a flare.

As I said I wasn't working when on high doses, but there are plenty of people who are, and I'm sure they will come along with advice. But you do need to make others at work - colleagues, bosses, and unions (if you're in one) aware of your health situation and limitations. Take care, you do need to pace yourself in all you do, and learn to say "NO, I can't do it " sometimes! Good luck.

[Celtic PMRGCAuk volunteer]

Pam, we're always in awe of those of you who have to work with PMR/GCA. I certainly would not have been able to work in the early days as I felt so disorientated, and that was on a 40mg starting dose - couldn't even focus on items on the shelves in the supermarket, so driving was out of the question.

Many of those who have to work find they have to take an extended period of sick leave and, when they return, do so on a part-time basis at first, gradually building up their hours.

The fatigue can be one of the most difficult problems to deal with whilst working whereas if we're at home we can catnap during the day to make up for sleepless nights.

As DL has said, you need to ensure that people you work with, especially Occupational Health department, are aware of your limitations with this illness and the need for you to avoid stress. There are others who post here who are working with one or both of these conditions, and I'm sure they will be along shortly with advice from their experience.

Love the photo!

[PamelAnneCT in reply to Celtic]

The photo is a pair of my old boots that couldn't be repaired after 12 years of wear. A friend of mine told me it's what she does with hers. I plant them every year now!

[Celtic PMRGCAuk volunteer]

Lovely! It looks as though you still polish them, too!

[jinasc]

I assume it is GCA from the high doses you are currently on.

You wrote, " I'm supposed to be getting back to work in 10 days but I don't know how I'm possibly going to do it."

Your GP should be issuing you with a certificate for your employers as I do not think there is anyway you can even contemplate going back to work within 10 days.

I do know two people (both in the 50's - one of whom had GCA and the other PMR&GCA) who we both working. It was at least three months before they could return to work and they both talked to their Occupational Health people and then went back to work on reduced hours gradually working up to full-time.

Your employer will probably never have heard of either of these illnesses so you will need to talk to them beforehand. There is a DVD which you could ask them to watch, which will help in them understanding both GCA and PMR.

[PamelAnneCT in reply to jinasc]

Thank you! My GP has issued one notice, I'm going to do some research on what my rights are. Virgin territory for me, I've always worked!

[PMRpro Ambassador in reply to PamelAnneCT]

Your doctor can provide sick lines for as long as he feels you need one - the limit is your employer and how much sick leave you are allowed.

However - in the UK GCA is covered by disability legislation so Occupational health and the union rep should be able to help. If it applies, being on high dose pred is a contraindication to shift-working. Being on high dose pred is also not conducive to good decision-making so it also depends to a great extent what you do - your memory and thinking processes will be affected and that isn't helpful for most jobs.