In limbo

[Frewen1]

Hi Everyone,

I sat down to read test posts, and propose my own question (partly covered by Strawclutching's - hope things improve for you with new doctor...) - but can barely summon the energy to be bothered. I'm sure that will resonate with some.

GCA, at 4mgs, (since 2 years 8 months)and now with Tocilizumab - another three months to go with that - and it's now really hard work walking, never mind actually doing anything. I didn't have pain before, (just the usual toxic sensations, lead limbs etc) until I got to 6 mgs. I'm reducing at half a mg a month, but reading Kendricks advice I wonder if I should make that every 6 weeks. I've been advised to get to 3mgs, then ask for the Synacthen test. I do have to work now and then, and it's hard to make my brain function. Just want to sleep permanently. Advice from any of you wonderful people most welcome, but I am not an urgent case, obviously. x

[DorsetLady PMRGCAuk volunteer]

As your issues sound very adrenal -ish then as slow a taper as you can…..even 0.5mg over couple of months…maybe even stay at current dose for a bit longer to give them a chance to ‘catch up’.

You case may not be urgent, but you are obviously suffering, so sending hugs - no great advice other than slowly does it on the tapering front, give it time, patience and rest as much as you need [or can].

[Frewen1 in reply to DorsetLady]

thanks very much DL ( and for the hugs …) - I think you answered my question anyway… I’ll stay longer on 4mgs, but would you advise edging up a bit for a month ( tho of course one hates the snakes and ladders…) - back tomorrow 5, even? Of course I’d rather not… x

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

The problem with that is -you still have to come down again…

If you thought some issues were PMR then I’d say yes, but they do sound adrenal related -so try not to if you can. Obviously if they really become unbearable you may have to -but I’d stick at 4mg if you can… and for as long as you need to.

[Frewen1 in reply to DorsetLady]

xx

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

Have read your reply to HeronNS - so wondering whether it is PMR type symptoms as well. I know you were diagnosed with GCA, but some find that at lower doses PMR does appear as well. Hope not, but maybe you should be prepared it may be. Trouble is, as also stated TCZ/Actemra can skew blood markers.

[Frewen1 in reply to DorsetLady]

Well I asked them ( my consultant ) and she said no to PMR because of recent blood results …but she didn’t mention what I’ve now learned from you about TCZ possibly obscuring tests

[PMRpro Ambassador]

I would say definitely adrenal insufficiency - and it affects some people sooner or more than others. I found 6mg exhausting and went back up and am trying again. I can't do 1/2mg as my pred can't be cut and comes in 5, 2 and 1mg doses. I would slow down as much as possible and talk to your doctors about not tapering any further until you appear to catch up. It is all very well them saying get to 3mg but when you are like the walking dead it is a major problem.

Actemra is great in terms of the PMR/GCA but it does nothing to perk up adrenal function - that has to come in its own time. And reducing every month isn't allowing it much time.

[Frewen1 in reply to PMRpro]

thanks so much… think I may have mentioned before, two endocrinologists disagreed as to whether it was insufficiency or not - hence beings advised to continue to 3mgs, then test again. Would you advise staying at 4mgs, but just take longer to get to 3 1/2, or go back to 5?

[PMRpro Ambassador in reply to Frewen1]

Depends on whether you can cope where you are - can you?

[Frewen1 in reply to PMRpro]

hmmm… I am coping, but unhappily! Just don’t know what any kind of “normal” could or should feel like…

[PMRpro Ambassador in reply to Frewen1]

By coping at this stage I mean can you manage to do daily tasks like dressing, preparing food and drink and the essentials associated with that, SnazzyD has written a lot of posts about that - she pared life down to the bare essentials for herself until adrenal function perked up a bit. But for some of us, that isn't as easy as for others and requires some adjustments.

[Frewen1 in reply to PMRpro]

yes, exactly, but everything that’s looming at me ( unopened envelopes, housework etc ) remains mainly undone, except for the occasional spurt of energy with the hoover.But I have to work now and then, and I am about to be a first time grandmother ( very exciting ) and will be awaited on the other side of London for all that help! Though very much looking forward to it…

[PMRpro Ambassador in reply to Frewen1]

The granny bit will test you - stress is stress even when it is good or enjoyable!

[Frewen1 in reply to PMRpro]

indeed!! X

[SnazzyD in reply to PMRpro]

I have to say that I may have suffered unduly in spite of paring things down because I was having to care for my vile father-in-law in our own home.

[Frewen1 in reply to SnazzyD]

Oh no! One hopes he is an encumbrance no more?

[SnazzyD in reply to Frewen1]

Indeed. He went into a home in Dec 21 and died this Feb. An 11 year nightmare that I’m sure laid a large straw on the camel’s back before GCA!

[Frewen1 in reply to SnazzyD]

Oh, poor you. Enjoy your freedoms as much as possible …x

[HeronNS]

"I didn't have pain before, (just the usual toxic sensations, lead limbs etc) until I got to 6 mgs." Does this mean you now have pain, which sounds like PMR, which some people do develop once they've had a GCA diagnosis? The more knowledgeable people here can describe how TCZ only targets one of the inflammation-causing cytokines, and if others are involved, then it cannot help and pred would be needed until the PMR part of the ailment also goes into remission - probably at a very low dose.

[Frewen1 in reply to HeronNS]

hi HeronNS, thanks for asking… no, I’ve had no pain with GCA for 2 and a half years until I got below 6mgs … then pain in walking, lifting arms etc, and fatigue… but blood levels still down low, so rheumy dismissed possible PMR. Just advised body is trying to adjust…

[HeronNS in reply to Frewen1]

You could make another post asking if others have had this experience. I think it is, unfortunately, not unheard of for people to sometimes have a touch of PMR even when GCA has gone into remission. And we know that inflammation markers aren't as reliable as we'd like. Symptoms really should always trump test results in PMR/GCA. Did the rheumatologist suggest a time limit for waiting for your body to adjust? Pred withdrawal causing pain should be fairly transitory, although fatigue caused by sluggish adrenals may last quite a long time hence the advice to taper very slowly - if at all for a while. At least they plan to test you again after a further taper, but if you are not doing so well, beginning to have what sounds an awful lot what sounds like untreated PMR pain and restriction of movement because of the pain, they should be paying more attention right now to how you are managing. Quality of life is so important. Do other painkillers help? And I don't mean just taking the edge off, but relieving the pain significantly?

I just remembered something. Apparently when on tocilizumab the inflammatory marker readings can become inaccurate. Sorry I don't have a reference for this.

[Frewen1 in reply to HeronNS]

thanks, that’s really interesting. I may phone in to rheumatology department this week just to ask a couple of questions

[PMRpro Ambassador in reply to Frewen1]

Blood levels can lag a long way behind if you are on some pred but the symptoms of adrenal insufficiency and PMR do overlap so it is difficult to tell sometimes. But as I've said - waiting to adjust is one thing, being able to cope is another. But adrenal issues should stay stable or improve, PMR is likely to steadily worsen. And as HeronNS mentions - she cannot go by the ESR/CRP because Actemra reduces them to a very low level whatever is going on. Monitoring must be with symptoms or a couple of othere uncommon markers. I never cease to be amazed by how little some doctors know about using it.