NEED ADVICE....AS SOON AS POSSIBLE

[cjatthesea]

We've been posting about my recent problems with tapering while also, starting to change dosage to twice a day. Two serious Flares within ten days. While dropping from 18 to 17, made the mistake of  adding another variable...using an enteric capsule. To keep this relatively short...believe a total of 10mg flushed through my system over a period of less than two days. Made two trips to the hospital, eight days apart. The first time, extreme head pain, nausea, body pain, etc., etc. Received 125mg Medrol, Dilaudid for pain and Zofran for nausea. Next day via phone South Carolina Rheumy ordered 60 mg for one week, 40 next, 30 next then 20 until we see him when we get back home...June. Did as was told, was only feeling somewhat better but dropped to 40mg....woke up in the middle of the night....same type Flare with constant vomiting added instead of usual nausea.

Today, saw a Rheumy we've seen a few times while in Florida for after hospital care. Try not to see him....are not sure of his judgement or knowledge. He's the only  Rheumy in the area. I had already gone back to 60mg for the three mornings since hospital visit. Asked for his advice at this point. immediately said to get off 60...drop down to 20.( ?????) If it didn't work when I dropped to 40, I'm afraid to try it again. Certainly afraid to drop to 20. Just afraid to drop while still having such severe symptoms. At this point, will add...I have Fibro ( diagnosed 15 years ago). I would not describe it as a terrible case. Have NEVER had headaches with it. In fact, until the last fifteen months....rarely had a headache. He acts like I'm enjoying this very tough life of GCA/PMR....perhaps wanting me to believe it's Fibro. Suggesting another drug, perhaps Lyrica. Even seemed reluctant to refill 20mg Prednisone tablets. Does anyone choose to be on Devil's Drug   ????. Other quick facts... #1-.my lab markers are always fine.#2- Lost some vision and some hearing on left side originally after going without Pred for 54 hours....a mix up last year during the Holidays.#3 Next visit is to be in one week, supposedly agreeing on 40mg at this time.

I'm feeling desperate and confused. Don't believe this would be the advice of original Rheumy. However, at the moment....he is on Spring break. Would appreciate any ideas or suggestions.

[HeronNS]

I am so sorry to hear about your troubles.  I really hope you can get some sensible advice and correct treatment soon.  I wonder if some of your recent symptoms are the result of that incredible cocktail of drugs you were given in the hospital.  Dilaudid itself can cause nausea and vomiting.  Zofran, to counteract effects of Dilaudid I suppose, can cause muscle spasm.  What do they think Lyrica will do for you?  I do hope that as these chemicals make their way out of your body you start to feel more yourself again.  It must be nearly impossible to sort out what's causing what symptom, and what is really the basic problem any more.  Hugs.

[PMRpro Ambassador]

Are you sure it is GCA causing the symptoms? Having it doesn't excuse you catching/developing other problems.

But Lyrica won't do anything at all for GCA and if you have a history of GCA I would be VERY reluctant to risk such a precipitate drop, especially given your response to 40mg. I'll take the horrid bits of pred to avoid loss of vision. 

In the absence of your own doctor I really don't know what to suggest other than going back to the hospital and discussing it and your fears with them. They shouldn't be allowed to go on "spring break"!!!! (Just joking)

[cjatthesea in reply to PMRpro]

Thank you HeronNS and PMRpro. I guess it's impossible for me to say I'm sure about anything. When  diagnosed fifteen months ago, I had gone through almost two years trying to find out what was causing an odd bunch of symptoms. A chronic dry cough, scalp pain, jaw pain, fatigue and nausea were some of my first and continuing complaints. I was told about GCA/PMR, received a Medrol Burst, put on 60 mg pred and the story goes on. Felt wonderful right away. But, have struggled with varying degrees since. We have been flailing around in the dark with very little direction. Until, we were blessed and found this forum. Still making some errors but trying to get on the right track.

When the doc chose to not directly address the GCA.....he mumbled something about it could be something else. I asked if he thought there was something new or different.. He mumbled , saying no, just something that was there....went back to talking about the Fibro. I can only assume that was the 'something that was there'.

Again, this morning, I took 60mg. I am nowhere near free of pain but within a couple of hours, I will be somewhat better. Although, for me, barely functional. I guess I'm wondering the risks of long term high dose (60) pred. And is it wise to stay at this point until I'm feeling stable. Then, what types of drops are advised.

Now, he's prescribed Tramadol. I don't normally take pain meds. Any opinions ?

[PMRpro Ambassador in reply to cjatthesea]

rcpe.ac.uk/sites/default/fi...

This link gives you a free-to-air copy of this paper. In the middle somewhere the section about GCA starts and there is the beginning of their approach to the pred taper. They stay at 60/50/40/30 for a month each depending on no symptoms reappearing - and by the sounds of things you have never been afforded the luxury of such a slow reduction or am I surmising? This group was one of the top ones in the UK when the paper was written - they are now all over the place.

Your description of your symptoms definitely puts GCA firmly in the options - but read the paper and see what you think. Your primary problem at present will be to get enough pred to follow it until you can see your own doctor - but I think I'd be heading home long before June. If only for a day trip!

[Jim-CJ in reply to PMRpro]

Hi PMRPRO,

Given that we can't trust our local Doctor and we can't contact our Doctor back in SC (but will try), we think this should be our plan: Continue with 60 mg until at least three straight days of no head/scalp pain. Then drop to 50 mg. We continue with this method to 40 mg, 30 mg, and finally at 20 mg. I know the report says one month each drop (I got that report from you a few days ago - thanks), but maybe we can just use her pain as an indicator to reduce. Once we get to 20 mg, I am confident using Mark's slow approach that we can make progress, 1 mg at a time.

What Do You Think?

Thanks So Much,

Jim-CJ

[PMRpro Ambassador in reply to Jim-CJ]

I don't know Jim - to adopt my analogies used elsewhere, my feeling is that the inflammation is lurking there, you are half emptying the bucket and the inflammation isn't overflowing as quickly but it isn't being kept in enough control by reducing the dose so fast until suddenly it's back. Does that make sense? 

I really think you need an expert to SEE your wife when the problems return. I do appreciate the problems you are facing but GCA really isn't something to mess about with - there is too much at stake. I know a lot of doctors who are very unhappy about their patients heading off on long trips at this sort of stage of GCA. 

[cjatthesea in reply to PMRpro]

Thank you, PMRpro. Perhaps we are just sounding 'bull-headed'. The month on each dosage is sounding more and more doable. Hubby is optimistic and wishful thinking.   There is a physical distance of about seven hundred miles between our homes and our respective doctors.. Neither of which seem to know enough to be helpful. The one here in Fl. seems insane. Getting back to S.C. is , also becoming more of a reality. Truly, we know there is more accurate information and knowledge on this site. We won't be able to talk with the South Carolina doctor until next week so will remain on 60 until then and probably for weeks after. I think we are still reeling from the shock of the last two weeks. Looking for other doctors ....with no success.

Thanks again for your firm guidance, CJ

[PMRpro Ambassador in reply to cjatthesea]

If I felt a doctor of mine was "insane" I wouldn't be encouraging them! If this is your first real flare, yes it is a shock. But not really unusual I'm afraid.

[cjatthesea in reply to PMRpro]

Perhaps, 'insane' is a stronger word than should be used. He is definitely moody and strange. Obviously, not very knowledgeable. Blaming GCA on Fibro after my loss of vision. After seeing him a couple of times last Winter, we had hoped not to see him this year. We were sent there by the hospital for after care. Here, we feel lucky to have a Neuro Opthalmology Surgeon. Good to have for some of the problems. Perhaps you have more qualified doctors in the UK.

No, in fifteen months, I have had several Flares. Luckily, we've been in SC each time. I think we're shocked that the 60mg is working so slowly. Have had better response at other times. Maybe we're just rushing things again and wondering how I'll ever be able to drop to 50 without creating another episode. Time will tell.

Thanks again, CJ

[PMRpro Ambassador in reply to cjatthesea]

I'm very much of the opinion that if you try to rush at reducing you are far more likely to have a flare - it is commonly appreciated that the most common reason for a flare is trying to reduce too far or too fast. The trouble is, in some people, if you get into yo-yoing your dose it becomes increasingly difficult to achieve the next reduction. Whether it is a case of some form of resistance to the action of the pred developing I don't know, but it does happen a lot. Accepting the bad side of pred and putting up with the weight gain and other stuff often does pay off in the end. 

There is a definition of insanity: repeating the same actions and expecting a different result.

Not sure about more qualified doctors - but one of the serious downsides of office-based practice is there is far less "peer review" of their knowledge when someone is in single-handed practice. All specialists work in the hospital setting in the UK and when someone has really strange ideas of whatever sort there is a degree of moderation available because you rarely see only one person. Which does sometimes pose a problem in terms of continuity of care - but can equally be a good thing at times.

[cjatthesea in reply to PMRpro]

PMRpro, I didn't realize how careful with words I needed to be on this forum. I am often speaking out of frustration. I am desperately seeking help and advice for GCA/PMR. Not really interested in definitions of mental health issues. However, since you've mentioned it....many of us might fall into that category. Otherwise, we would not be suffering Flares. Seems everyone has them....some just a few. Others many.  I don't believe everyone is trying to 'repeat the same action'. I believe each time, we think we have done something enough different that the results will be different. We're walking on a very thin line.

It would be wonderful if our doctors were held to more accountability.

[PMRpro Ambassador in reply to cjatthesea]

I wasn't defining mental health issues. 

The primary cause of a flare has been acknowledged by top US experts for years as being reducing the pred dose too fast or too far. If you reduce your dose rapidly and it leads to a flare, the sensible thing to do is to go back to the last dose at which you were well and try again - but if you use the same technique you will very likely find the same thing happens. If it didn't work last month the chances are it won't work this month either.

However, we see both doctors and patients repeatedly trying to reduce the pred dose when it is quite obvious the patient is not ready to do so (they still have symptoms and pain) and certainly not in the size of steps that are tried. 

THAT is, by any standards, insane...