Down to 6mg feeling "odd"!: I've got a telephone... - PMRGCAuk

PMRGCAuk

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Down to 6mg feeling "odd"!

MamaBeagle profile image
13 Replies

I've got a telephone consult with my very amiable gp coming up on 21st........and would like to be able to point him in the right direction! When I last got down to 4mg before a flare at 3mg - I mentioned adrenals and he was really rather blase - I know that should have an acute accent but haven fathom out how to do that on my Chromebook! Anyway for the past 10 days or so, I was on 6mg at the time, I began to feel very lethargic, weak, a bit lightheaded from sitting to standing, going to the toilet about 4 times a day but not diarrhoea! My bp can go down to 105/64, pulse 64. I also have had hot flushes in the evening - not every night but several times a week. I did begin reducing down to 5.5mg - DSNS so first tab at this dose was 4 days ago - 3 more of 6mg before next at 5.5mg. No aches or pains. I have thoughts but would really welcome more knowledgeable advice!

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MamaBeagle profile image
MamaBeagle
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13 Replies
PMRpro profile image
PMRproAmbassador

From experience I would say a body lagging behind the reduction would fit - even if some people insist we should be fine down to 3 or 4mg pred before adrenals cause problems. Or coincidence/an infection you weren't aware of?

If it is lazy adrenals you would expect it to get worse at a lower dose so I;d say, carry on and keep notes.

MamaBeagle profile image
MamaBeagle in reply to PMRpro

Thanks Pmrpro - I knew you would have some great advice! I did have what I thought was a blast of a gastro ?norovirus type thing last week in October which abated for a week then the diahrroea returned so I put off the flu jab until it had disappeared. I eventually had along with the pneumonia jab 12th Nov. This was followed by a gynae appointment when I received the news which I knew was on the cards that I need an anterior repair for a prolapse...........it's all happening here!

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

So actually - there is a shed load of "stuff" going on that is stressing the little "a" cells (as opposed to the little grey cells). Think I'd wait until all this - and Christmas - is done and dusted...

MamaBeagle profile image
MamaBeagle in reply to PMRpro

So very thank you! Will tell him I'm sticking at 6 until, whenever - and why. I think op will be due sometime Feb, unless the gas man freaks out!

SnazzyD profile image
SnazzyD

I felt very like this around this dose. It improved around 5 and even more by 4mg. I decided it was adrenals and pushed through but I felt rubbish for a good few months.

MamaBeagle profile image
MamaBeagle in reply to SnazzyD

........how long did you stay on each level?

SnazzyD profile image
SnazzyD in reply to MamaBeagle

It depended on what on was doing, like holidays or being ill. Generally from start of reduction to start of next one is 6-8 weeks

MamaBeagle profile image
MamaBeagle in reply to MamaBeagle

I've only done 4 weeks at 6mg so will definitely stay on this for a while. I did get down to 3 earlier on in the summer and had got to that dose with not probs, BUT then a flare so am now on the way down from 7! Want to go gently bentley this time......

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

Personally I think you can't go too slowly at this level - doubling any time you consider at a dose seems a good way to go. Apart from any other adrenal consideration - you are likely to be getting closer to that "lowest dose" point...

MamaBeagle profile image
MamaBeagle in reply to PMRpro

That is so useful. Taken it all on board, thanks again PMRpro!

maria40 profile image
maria40

Yes, I've been feeling odd too. I'm now at 8mg (DSNS) taking my enteric coated tablets at about 4-5 am. I get wobbly in the late afternoon around 5-6 then I'm ok. I've also had the non diarrhoea frequent bowel movements but - fingers crossed - no PMR or GCA symptoms. I've been taking pred for 18 years now so feel fairly certain my adrenals are playing up (or perhaps not playing would be more accurate). I understand that as I take e.c pred I may be absorbing only a part of the steroids. I've mentioned the synacthen test to my GP but was told I had to get to a lower dose before this could be done. I don't really understand the logic behind this, as I understand the test is to determine whether the adrenals are capable of functioning not whether they are currently doing so.

Not much help to you, I'm afraid except to know that you're not alone

MamaBeagle profile image
MamaBeagle in reply to maria40

Thank you Maria - it's one of the great things about this site - apart from the expert advice it's the knowledge that you're not alone.

PMRpro profile image
PMRproAmbassador in reply to maria40

You don't necessarily absorb LESS of e/c pred, you just absorb it differently. Instead of a sudden sharp highish spike and then tailing off, the blood level rises more slowly to a lower peak and then tails off. The area under the curve is the same - and it is present in the blood for longer, just at a slightly lower level.

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