Suspect Giant Cell Artritis, should I act or wait a day!

Hi lorrimack, you are so kind to enquire! I got to see my Rhumathologist on the Tuesday morning and he also put me on 60mg prednisone but for a month or at least I go bk to see him in a month. I honestly have been reeling from the whole thing really , I started them on Wednesday morning after crying my heart out that I have to poison myself with them and knowing it's such a 'rock and hard place' situation. It's the helplessness of the consequences of one against the effects of the other!! Docs line is 1 year but from what I've read its 3, 5, 7 yrs and longer, all I can do is try to stay as healthy as I can, God knows there are people in far worse situations so I need to count my lucky stars! How have you been since? Did you have any effects from the steroids or any reoccurrence since? Thanks again!

My doctor told me that in a way I was lucky as pmr and GCA can be treated and it would take 1- 1 1/2 year. Well it tok 3 1/2 years but I have been free from pred almost 8 years! Just follow a slow tapering regime and don't listen to the doctor if he/she tries to taper fast. Good luck

Well that's true, at least they know how to treat pmr and gca!! That's great your off prednisone so long although it obvs took twice as long as the doc said!! My doc did say tapering slowly, so hopefully will!! Was the tapering slowly to ensure no reoccurrence of gca or to keep withdrawal from prednisone to a minimum...or both? Thanks for your advice, anything welcome!!

Don't think of it as poisoning yourself - learn to embrace your pred - it is what is standing between you and possibly going blind. 

The drugs used in cancer therapy are real poisons - but they save lives. None of us willingly took pred - but if it gives you your life back it is worth it. You won't be on these high doses for ever, you will reduce the dose in time. Upsetting yourself and crying will just stress you even more - and GCA and stress amke poor bedfellows.

But I have no idea what makes your doc think a year - never come across that in any medical literature and definitely the quickest patient I have met on the forums was in 2 years for GCA. She now, 4 years later, has developed PMR. But that is much lower doses. But there are numerous ones who had GCA and took about 4 or 5 years to get off pred - with no real lasting damage other than being older. Nothing we can do about that!

Thank you again, your advice is so sound and sensible! Thanks also for the links. The 'poisioning' myself came from never wanting to take medication apart from painkillers and supplements and went then from Embrel to Lyrica, Arcoxia, ameltriptyline, to 5mg pred and now 60, so knowing I'd to take that amount and for a long time was bothering me badly! I do realise what pred can do as the pain in my head is nigh on gone, thankfully!! I think my doc said one year so as not to send me into orbit as he knows my 'medicine phobia', yes I've read the duration most people have to take it, and sterling myself for the long haul. I've informed my hubby and kids that Moms gotta REST, and am doing just that and even doing that am feeling exhausted so not up for much anyway! With Fibromylgia I've learned pacing but still fighting it, but will definitely be laying very low for the next number of days. I'm so glad I've joined this group as you're all so kind, taking the time to answer my ramblings! Thank you again!

I appreciate his desire not to send you into orbit - but since it is such an unrealistic concept what is he going to say when in a year you are nowhere near off pred and you are disappointed (or worse) or you are pushing him to let you reduce faster? That makes it likely you would risk a flare and end up being on pred even longer. That's why we are all so up-front about the realities of GCA and pred.

Yes in light of what you've said it does seem strange that he said that! I'll be going back to him with a truck load of information so hopefully he'll realise he'll have to be up front with me! Could I ask while I'm on, and didn't know if I skulls have started a new discussion about this but I woke this morning with a pain in my right temple again and the veins swollen, not very but can feel them. Pain is not awful but am aware of it. Have been taking the 60mg pred each day (5 days) so would've thought the pain & swelling wouldn't come back, as both had been gone!

Best to get that checked out first thing tomorrow if it's still there, Mrs Hobbles - occasionally patients need a slightly higher dose than 60mgs, sometimes intravenously.  I was lucky that 40mg did the trick but my rheumatologist impressed on me that if my head pain returned I was to get in touch with him immediately - he is one of the best though!  Another thought is that have you been overdoing things in the last couple of days just because you felt better?  That would be enough to upset the applecart whilst the initial starting dose is trying to get on top of the inflammation and keep it there.

Thanks for your advice again! I'll see what it's like tomorrow and contact my rhum doc. Your lucky having your one, I feel with mine that although I like him and he's sympathetic and proactive, I'm cast to the wind between appointments, so yes if still there tmrw will buzz his secretary for some answers. I did alot on Thursday but since have been resting as per your and others advice so it was discouraging that I woke with the pain, which is still there unfort. Hope you can have a restful day too, thanks again for all your advice and help!

Mrs Hobbles, when I get like that, I have a nice long soak in a bath with epsom salts (and usually a little lavendar essential oil).  I make sure to take one of my calcium doses at bedtime with a small snack.  And this usually helps give me a nice restful sleep.  I've teetered on the brink of flaring a number of times and it definitely is connected to something too physical, although mental stress can also contribute.  Yesterday, for example, deliberately had a very relaxing day.  Got my exercise in a number of short walks, minimal housework and lots of down time (watching Olympics).  But must have undone all that good work by standing for a couple of hours socializing in the evening.  Knew I was strangely tired when I got home, but not until I got up 1 1/2 hours later than usual and took pred a bit late was I aware of what I'd done.  Simple thing, really.  Anyway, the dose has kicked in and I'm fine now, but intend to be a bit more aware the rest of the day - only noon ADT here, same time zone as Brazil.    One last Olympics tv binge, feet up! 

I find standing very tiring - even now. That was the main reason for booking service assistance at Chicago airport - I couldn't face standing in the queue at immigration.

As for the bath - don't get in one unless you are sure you can get out again   I got locked in a bathroom because I couldn't turn the handle - so locking the door requires thought too!

Yes, I've found sometimes I feel like I have concrete on my lower body,  It's really weird.  Putting it down to my new normal; as long as I have next to no PMR pain, and maintain full range of motion, it's all good.  But life is not the same as it was before and I suppose it never will be again.  Still, as you've said many times, if we have to have a chronic ailment, PMR is not a bad one to have!

I did really, UK English usually calls the bathtub a bath - but I also got stuck in the room when I couldn't grip the handle. I have no desire to be hauled out of the bathtub by anyone ever...

It's a common call-out for the ambulance service 

Thanks for all your advice and thoughts. Yesterday I rang my Rheum docs Secretary and she said he wouldn't be around till today, gave me the number if a nurse, got no answer and left a voicemail mail, no reply since, rang my doc, she said wait and see, and I'm on the highest dose anyway! Rheum docs Secretary rang to say she'd emailed him and he said it takes a cpl days for 'things to settle' and he's only seen me on Friday so give it time, she didn't enlighten him that he'd seen me on Tuesday and things had settled but flared again on Sunday. Pain eased yest but bad again this morning, like lying on a swollen bruise, forehead and around eye socket feels numb and am feeling nauseous and a bit out of it, not sure what to do next!!

Mrs Hobbles, I think you probably meant this reply to go to Eileen.  I'm sure she'll see it anyway, but maybe you could repost it as a reply to her?  She and Mrs O have so much more expertise than I do.  

So sorry to hear that you've just been told to wait it out.  Do please treat yourself as though you have the flu and just rest, take your fluids and generally coddle yourself. 

Time for a new rheumy methinks. And if you feel any worse - call the emergency services.