Quick run down on my journey: Diagnosed with PMR at age 55 in January 2016. Was in terrific pain for about 3 weeks. My blood levels were better by March and perfect by June. I have been tapering from 40 mg Methylprednisolone and now have instructions to go from 6 mg for 4 - 6 week to 4 mg daily. I am now at 4 weeks. The pills only come in 4 mg size and they are tiny (thus the 2mg increments)
I'm a bit nervous about the jump...I really dont want to do anything to trigger symptoms... I have been very fortunate for the last 7 months to have the steroid side effects be the worst of it... and most of those symptoms are under control... No flares.
I finally have had the fatigue under control (sleep deprivation was pretty bad for months) and am back to a more active life... I walk at least 3 times a week a mile or more... I do sleep about 10-12 hours a night, but when I was well I always needed at least 8.
The last 2 weeks I have had 2 or 3 days (not concurrently) when I slept most of the day. Long naps, kind of thing. I have had chronic back pain all my life (except for while on these steroids) and it has started to complain a bit again.
My memory is troubling me. It isn't severe, but its noticeable to me. Doc thought maybe adrenals are slow to react? Short term things, Like, did i feed the fish? Or, I go to change the laundry over and realize I already did it. Or I repeat a story I've told my husband an hour ago. The worst of it is that when I am talking, I "derail" and suddenly cant remember what I was talking about. Im SO easily distracted, I must look like a puppy dog!
The hot flashes are quite intense but not very frequent (maybe a couple times a day).
I am not working, so I do have the luxury to rest when I need to, etc.
Does anyone see anything here that would make you hesitate to drop from 6mg to 4 mg? My next appt is a month away....
thanks
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Zacsmimi
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I see plenty that would make me wary of reducing any further just yet.
It's a big drop. And you are already showing some of the signs of your adrenal glands not being totally up to speed yet - you mention having slept much of the day on a few occasions in the last few weeks.
The hot flashes and the memory thing could well be the PMR - I had similar experiences in the 5 years I had it without pred. Remember, the steroid is only managing the physical symptoms - it does nothing for the actual disease process that causes them, it is still grumbling along in the background. Your blood markers are normal because you are still taking enough steroid to keep the inflammation under control. It does not mean the disorder has burnt out yet.
I am assuming you are in the US since you are on Medrol - it's rarely used in the UK. According to the data sheet Medrol is also available in 2mg tablets - that would at least allow you to reduce by 1mg, 1/2mg if you alternate daily doses. Discuss it with your pharmacy - or do you buy online like so many in the US? A good local pharmacy is a very useful thing to have and to develop a relationship with - it's easy enough, you don't demand, don't arrive 3 minutes before closing time and expect a resolution to whatever problem you have, choose the time of day/week that is quieter!
Six mg is a low dose - especially to be on after just 7 months! It is below the "physiological dose" level that is the same sort of level as your body makes naturally. I wouldn't be in too much of a hurry to go significantly lower - and I really would try to find a way of being able to reduce in smaller amounts. At this point, some rheumatologists choose to do what endocrinologists recommend: switch to the equivalent dose of hydrocortisone. It has a shorter halflife and is felt to encourage the body to resume normal adrenal function better. I imagine it is also easier to reduce in smaller steps.
I think I would stay put meantime as you are on a fairly ligh dose & if you get a flare you would have to go way up & start working your way down . If in doubt ask GP, though we often know more about this than they do cos we are all slightly different in the way we react!
Would agree with PMRpro (no surprise there then) and re-iterate all she's said. 6mg is a difficult dose - I found from there down to 3mg - taken in 0.5mg steps a very stressful time. Mainly due to lazy adrenals, found I was very sleepy and just 'not with it', and more difficult to cope with than the initial side effects on high doses. Think it was because I expected things to get easier as I reduced, when in fact they seemed to get worse.
You need to try and get tablets in a smaller dosage somehow, think we've discussed this before. The drop from 6mg to 4mg is much too big in percentage terms, and as you are already experiencing problems can only make things worse.
Thanks. I will wait on the reduction and will discuss with doc at the end of the month. I have tried all avenues I know to find 2 mg tabs. Doc and pharmacy just shake their heads. I have never obtained meds on line, I guess I could look into that, but that seems kind of sketchy to me...
ON another note I didnt sleep well last night for the first time in many weeks, and am very sleepy again today.... time to just slow this old horse down. I may take myself back up to 8 if it doesnt seem to settle...
Or alternate the two doses - it isn't ideal but may be enough and it is still lower. The dead slow and nearly stop reduction approach might help the process of going from one dose to the next.
Check around different pharmacies maybe. I'm also in the U.S. And have a choice of 1, 2.5, and 5 mg pills. They're u coated prednisone. I use Walmart pharmacy if that helps.
No even "not alone"! I'd say the majority of patients with autoimmune disorders have memory problems and pred commonly causes "brain fog" - we come under both headings.
I am so grateful for all this info! I have always prided myself on my sharp mind and quick response but that's all changed, I so quickly lose concentration and go off track in conversations very inconvenient when at work and the person with me has to prompt me, needless to say my confidence is at an all time low, I feel like I have gone from a bright healthy 60 year old to a decrepit forgetful old lady who needs a stick to get around!
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