Return of the Living Dead

[Sharitone]

Four months after finishing pred and despite TCZ, I can now hardly move. Pain can only be expressed with the rudest possible words, as you all know, and sleep is difficult, . I've never got rid of the deathly fatigue. GP is writing to consultant to try to bring forward the next appointment and has given me morphine patches. I doubt they will do much.

He says he would put me back on steroids, but could not do so without the consultant's say-so.

However, tomorrow evening I am playing in a concert and I really want to do it. I also have a few pred 5s, 2.5s and 1s left. So the big temptation is to take some off my own bat in the hope of saving the concert.

Do you think this would be reasonable, and if so, how much?

Also, if PMR is making itself felt again, does this mean automatically that the GCA and LVV are probably cooking up as well?

Thanks for any opinions.🙂

[DorsetLady PMRGCAuk volunteer]

, if PMR is making itself felt again, does this mean automatically that the GCA and LVV are probably cooking up as well?

Not necessarily --- and sorry to hear about your pain. Don't really understand why GP can't sanction Pred for a few days until he/you get a response from Rheumy... might be worth ringing nhs 111 after hours.. you might get a more sensible reply.

Obviously we cannot advise or be seen to advise you to take Pred without medical advice - but in the words of a Pet Shop Boys' song -

"left to our own devices, we probably would"😉

[Sharitone in reply to DorsetLady]

Thank you. I have taken 5mg so far. I guess he might not want to mess up any possible tests. I'm really relieved to know the GCA and LVV might not recur. I should recognise GCA, but LVV is sneaky!

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

After the weekend you really do need to push GP to make a decision and also let Rheumy know TCZ isn’t cutting it!

[SheffieldJane]

Oh dear what a dilemma! I have also experienced a return of symptoms as if I had never taken Tocilizumab. It doesn’t work for everyone. My own Rheumatologist very much gives me my head with dosing . In your shoes I would be inclined to take 7 mgs for a week to 10 days. Try to have an urgent telephone discussion with your Rheumatologist. Or reason with your GP about temporary dosing. I hope that you do not experience a full blown GCA flare. I did not, but I have the fatigue and PMR pain and stiffness, and hobble along at 5 mgs. I hope that you are able to play in your concert. My 8 year old grandson has been totally delighting me on the piano with Bach and Beethoven. It has transformed me. He was born with it and is obsessed. Good luck!

[Sharitone in reply to SheffieldJane]

Thanks for answering so quickly. I'm sorry you've had the same. I think the GP's letter will have more success in reaching the consultant than I will; the helpline doesn't seem t oget answered any more. I've taken 5mg, and maybe a little more later if I'm feeling brave - pred likes to keep me awake all night.

Hurrah for your grandson. It is so important for children to learn early. It's much harder to learn to read music when you're older. There are people in our band who have tried to learn as older adults with varying degrees of success! Piano is particularly beneficial because you learn two clefs, and the co-ordination. It's also an increasingly rare skill, and a lifelong lasting stress buster.

[PMRpro Ambassador in reply to SheffieldJane]

TCZ only works in the short term while you take it - like pred, it doesn't cure anything.

[SheffieldJane in reply to PMRpro]

That explains my ability to fast taper and my current decline - sigh!

[piglette]

If you are going to take some steroids you probably need to take the quite soon so they have a chance of working.

I have no idea why your GP said the cannot prescribe steroids without the consultant’s say so. I suppose they are in awe of the consultant and don’t want to rock the boat.

[SheffieldJane]

Try taking Pred very early in the morning. The cytokines flood the system at around 2 am ( inflammatory substance) Pred can zap it when it’s at its height and it is far away from bedtime. The reason I said a week to 10 days is that you can come straight off it within that period, without tapering. However, your symptoms do need medical attention.

My grandson and family are on their way back to Australia after 6 weeks with me. I miss the piano tinkling through my house. He definitely uses it as a resource when there is stress. It’s a real joy.

[PMRpro Ambassador]

Well I would try it!!!!

It is well known that GCA has 3 underlying mechanisms for the inflammation involved and about 50% of patients were unable to get off TCZ entirely in the clinical trials because it seems part of their GCA was due to these other mechanisms. TCZ is a biologic and biologics are all very specific in their action - it only works for one of the mechanisms, the one involving IL-6 for which it is an antagonist. You probably have some of the other mechanisms going on and need a low dose of pred to manage them, I do hope the rheumy appreciates that.

[Sharitone in reply to PMRpro]

And would you, like SJ, suggest 7mg?

[PMRpro Ambassador in reply to Sharitone]

You have to try ...

[Sharitone]

Yes, that's the problem with pain coming off pred. You can't be sure what is osteoarthritis, or other age-related things that you would have had anyway. That is one of the reasons I have put up with growing symptoms for so long, probably too long.

AndI must say, when I talked to my GP about synacthen and calprotectin tests, he was open to the suggestion. If only the rheumy were the same! Though apparently GPs here do not have the option of the later.

[Sharitone]

😉 Ok, I'll try!

[Gimme]

If it were me, and knowing how immediately I respond to pred, I would at least take it today and tomorrow so that I could do the concert. And if it were me, I would also whack it up to my initial starting dose of 15mg for the two days because I know that would make me totally pain free. But that is just what I would do and that is no way a recommendation. Look after yourself, and hope you can find some relief.

[Sharitone in reply to Gimme]

Thank you! I have taken 10mg, and am wondering about a bit more. So far there is some improvement, whether from the pred or morphine, I can't tell, but I bet it's the pred.

[Sandmason]

In your situation I would take enough to get through the concert. Life goes on and we can't access the medical support we need on the spot!

When my hip and shoulder symptoms started in February, I had no doctor of record, could not make an appointment with orthopedics without a referral, so I started prednisone in low doses myself just to get through an important trip I had planned. (We always keep prednisone on hand, my husband is a semi retired physician) By the time I got home I was on 20mg for a few days and had figured out it was PMR, not hip arthritis. My labs were done after 5 days and were normal.

You can always get your labs later after stopping your emergency dose for the concert.

[marvalusxoxo]

My dear lady/sir I wouldn't take it upon yourself to take anything without the advice of GP.

[Hulotsholiday in reply to marvalusxoxo]

In the UK, such ‘advice’ may take weeks. In the meantime, we have to make informed choices about how to deal with challenges that many medics are reluctant to address. I’d rather gamble a few doses of increased pred to give me quality of life than sit around in pain.

[Gimme in reply to Hulotsholiday]

And in your favour, you would also be taking a medicine that had been prescribed for you and for the prescribed indication.

[marvalusxoxo in reply to Hulotsholiday]

i agree...even here in America health professionals are likewise reluctant to address or dismiss symptoms or say is something else. This happened to me...for 2 years I went undiagnosed and misdiagnosed until I saw my GP and she told me what I had and that I should've had been diagnosed 2 years prior and be on meds.

[Sharitone in reply to marvalusxoxo]

Yes, of course you're right in the normal course of things. IT gets a bit trickier though when there is no advice immediately available.

[marvalusxoxo]

No ma'am I haven't. I was diagnosed with what here in the America is called spondyloarthritis which is the beginning or half way spectrum of what will eventually become Ankylosing Spondylitis. Enbrel was prescribed for both conditions and sulfasalazine for RA as well.

[MrsMarigold]

Hi Sharitone. I have lupus and other AI diseases. I also fell and hurt my shoulder 4 weeks ago and had to have surgery on the darn thing. At 65 years, I simply do what I must: temporary upgrade of prednisone for instance traveling sightseeing etc. I’ve gotten over the guilt of it and accept the slow down pace dose after. It’s our life. Your concert is important to you. Best, MrsMarigold

[Sharitone]

Thank you. The lapse in answering is due to having to get over the effort of the concert - which I played in most happily, having taken the necessary medication! Life's too sort to keep waiting months at a time for appointments.