Another fellow sufferer

[Fimckenz]

Hi, My PMR started June 2015, mainly pain around the pelvic area and hips. Diagnosed September 15. Blood tests all ok but lovely GP listened when I mentioned PMR and agreed it does not always show up in the bloods. Started me on 15mg pred and told me to ring him after day or two. Worked within hours so phoned him and we agreed a regime. I have never seen a rheumatologist, and not really had a problem with dosage (mainly down forums). Had a problem when i happened to see another doc for something else, she insisted I drop from 8 to 5 and within 2 days back to square one. ( I ensure I never see her for anything now ). After slow tapering, I am now on 3mg. Just started 2.5 three weeks when I got labyrinthitis so I have stayed on 3. I have had two bone density checks in the last 6 years and all is good. My biggest problem was fatigue, this has slightly eased. I am hoping to start the dead slow tapering again next week, fingers crossed.

[Soraya_PMR]

Where have you been for the past 3 years? Have you been taking a sneaky peek and not posting? No matter, welcome aboard at long last.

You seem to be doing well, apart from the slapable female! Your GP sounds sensible, it can make a big difference.

[Fimckenz in reply to Soraya_PMR]

Thanks for the welcome.

[DorsetLady PMRGCAuk volunteer]

Hi,

Have you been lurking in the background?

I found fatigue greatest between drop from 6mg to 3mg, but then it miraculously disappeared - so hopefully yours will too!

Labyrinthitis is horrible - I had it years before GCA - so commiserations on that score!

Now you joined in, please keep us informed, we like to hear good news stories - good for newbies!

Me- GCA first symptom Sep 2010, diagnosed Apr 2012 (80mg), last Pred Sept 2016

[Fimckenz in reply to DorsetLady]

Thanks for the welcome. Are you below 3mg? Is that when the fatigue stopped? Do you take magnesium?

[DorsetLady PMRGCAuk volunteer in reply to Fimckenz]

Have been off Pred completely for almost 2 years now. Fatigue did stop at around 3mg.

I do take magnesium supplement now for arthritis (after reading about it on here), but didn’t at the time I was on Pred.

[powerwalk in reply to DorsetLady]

So is it the pred that causes the fatigue? Thanks. Or is it that at 3mg - the other issues are resolved do you think?

[DorsetLady PMRGCAuk volunteer in reply to powerwalk]

Unfortunately it’s not as easy as that - for some it’s the Pred that can cause the fatigue, for others it's the actual underlying illness -GCA or PMR - sometimes both.

But when you get below about 7.5mg Pred (which is equivalent to the amount of cortisol that your body would normally produce) your own Adrenal gland have to start working again.

Any dose higher than that or if you've been on Pred for longer than 3 weeks they stop working because the Pred is going the work for them. Bit similar to say diabetes, once you’re on insulin your body stops producing it naturally, but at least our Adrenal gland do start working again - sometimes it takes longer for some people.

Have a look at this link, although it’s not specifically related to GCA/PMR it might help and if your symptoms don’t improve then speak to GP about getting them tested -

healthunlocked.com/pmrgcauk...

[powerwalk in reply to DorsetLady]

Thank you. Can I ask did you feel awful when you reduced? How long do we go with the feeling awful before we either put it up again or go to the GP? Is it something you need to plough through - I know each time I reduced I would feel it bad - but I can't seem to get anywhere now - the fatigue is killing me. You know that real fatigue that feels like depression? If that makes any sense. Two weeks now on the 4mg. Just an opinion obviously - I just don't know how long to do this up again and down again thing. I would keep going if it should sort itself out? I'm kind of trying to manage it myself - my next visit to GP she will send me to a Consultant. So much easier when the Rheumy was doing it - though that ended up a disaster cos she took me off it altogether as I said before after 12 months. This is why I'm kind of tryng to get a hold of it. Just wondering how low you go before giving in and going back up a bit. Hope this makes some sense.

[DorsetLady PMRGCAuk volunteer in reply to powerwalk]

It might be how you are reducing that’s causing some of the problem. Are you dropping 1mg at a time? If so try 0.5mg.

Are you reducing from one day to next? If so , then a slower taper like this might help -

healthunlocked.com/pmrgcauk...

You also need to be able into indentify whether it’s steroid withdrawal ( usually feeling grotty for 3or 4 days after drop, but then it goes after body gets used to new dose - a slow taper should alleviate that), or a flare - which can take a week or two to surface after the drop to new dose. Then you need to go back up to dose you felt okay at.

Of course, the other reason could be you just need a bit more Pred at this particular moment. There’s no point in trying to reduce regardlessly - if you need 5mg, you need 5mg! No stars 🌟 for ploughing through! Take enough to be comfortable- doesn’t mean you’ll always be stuck at that dose, .....just for now .

[powerwalk in reply to DorsetLady]

was trying the 0.5 but I have beena bit up and down on it lately. Thank you for this definitely reverting to the severe fatigue I had before I ever went on the pred before diagnosis - so maybe things are just still not resolved yet. Many thanks.

[PMRpro Ambassador in reply to powerwalk]

I'd say at this dose it wasn't pred causing the fatigue - but the LACK of pred. Your adrenal glands are still playing catch-up and some people need longer than others. The smaller the change in dose the less adjustment your body has to make to keep in balance and so the less difference it will make to how you feel. The fatigue at these low doses of pred will last until the body has adjusted - it isn't a simple a + b = c equation, it's a much more complicated bit of algebra with loads of variables! That's why "slow" is needed at this stage. It isn't harming you - you need the equivalent of about 7.5mg pred to function, the only difference at present is the amount your body is making as cortisol to top up the artificial corticosteroid in the form of pred.

[SheffieldJane]

Hello and welcome Fimckenz, or should I say boo! I haven’t seen you before but you certainly seem to have made enviable progress! Have the doctors made a connection between your primary condition and Labyrinthitis? I do experience some dizziness and intermittent tinnitus, I wonder if this is yet another joy for us. Is staying on your tiny dose indicated?

Well done for giving that ill - informed doctor a wide berth.

[Fimckenz in reply to SheffieldJane]

Thanks for the welcome. I had a bout of labyrinthitis 16 years ago so seems no connection. I developed tinnitus in one ear, 10 years ago, I have noticed the recent labyrinthitis has worsened this. I was diagnosed with positional vertigo a few years ago but during a recent visit to my regular Doc, he does not believe I have this. He believes my ongoing dizziness and balance issues are purely down to my eyes ( had a detached retina 5 years ago which they could not repair completely so left me with slight double vision, also problems with my other eye from recent cataract!). I aim to start reducing again using the dead slow method, I only stopped tapering due to the labyrinthitis! Onwards and upwards!

[PMRpro Ambassador]

Could you add your story to this thread please? Including your age.

healthunlocked.com/pmrgcauk...

Thank you in hope!