Jeanie

[Jeanmh]

Morning just need a little bit of advice from you lovely people .My Dr wants me of steroids by Christmas after been diagnosed with GCA early in November 2016 ,The reason she wants me off quick it is causing other problems fractured spine in December a prolapse womb in March and still not able to walk properly without aid as my legs are not strong enough due to muscle loss .I Got to 8 mg for a month tried To get to 7 mg felt so not well for a month so stayed on 8 mg for another month felt better so tried alternative days of 7 mg and 8 mg the next feeling so much better doing this way .Would this way be ok or as any one got a better way

[DorsetLady PMRGCAuk volunteer]

Hi!

Your doctor may want you off Pred by Christmas, but unfortunately the GCA may not make that possible. So long as it is active, you need the Pred to control the inflammation/pain. A year on from diagnosis it's likely to still be very active - 3-4 years is much more normal timeframe. Think your doctor needs to go back to the drawing board!

Have you had a DEXA scan to check your bone density, or do you know it already? Are you on Alendronic Acid? or similar.

You could try Pilates to build up your leg muscles - most of the poses are done lying down - I started a couple of years ago for same reason - really good.

At the level you're at now your adrenal glands are trying to start working, which many find difficult, so slowly reducing is really the only way.

There are various taper plans - see under pinned posts on right hand of this page.

Good luck.

[Jeanmh in reply to DorsetLady]

Thank you Dorset Lady I trust your judgement as I know you have had along journey to .Yes had a dexa scan I have spondylosis inmy spine have now had three fractures and I'm on the Alendronic tablet every Sunday.Been having physio for six months they have advised the hydro pool to do my excise in to build my muscles up my age concern centre as one so I will be joining as soon as I get my water work sorted .It is unbelievable how little is known about G C A I find it scary I'm so glad this site is available so helpfull

[DorsetLady PMRGCAuk volunteer in reply to Jeanmh]

Yes it is scary how little GPs seem to know. But I guess it's one of the Cinderella type illness that doesn't come to the fore that often -unlike heart disease, cancer etc! Plus it's always affects "older" people (by that it means 50) and not life threatening - life changing yes, but threatening, no.

Unfortunately from what I've read on here, the so-called specialists - Rheumatologists - don't seem to have much idea of it's path either! No wonder we all have to muddle along hoping we're doing the right thing.

Take care.

My version of slow is as follows-

1st week - Sun & Thurs new dose (Mon, Tues, Wed, Fri, Sat old dose)

2nd week - Sun, Tues & Thurs new dose (Mon, Wed, Fri, Sat old dose)

3rd week - Sun, Tues, Wed, Thurs new dose (Mon, Fri, Sat old dose)

4th week - Sun, Tues, Wed, Thurs & Sat new dose (Mon, Fri old dose)

5th week - every day new dose

[Jeanmh in reply to DorsetLady]

Thank you yes you are right about every thing you have put on this site its all been helpfull for me x

[PMRpro Ambassador]

Getting off pred in a year when you have GCA is a tall order - I fully appreciate why she says it but it isn't her calling the shots. It s the GCA and it is the boss!

As DL said this stage is more your adrenal glands coming back to work - and if you go too fast that won't happen quickly enough. As long as alternating the doses is working for you that is fair enough but you are at the early stages of this bit of the journey.

DL has a slower way of reducing and this is my version which has been used on all 3 forums over the last 4 or 5 years and is being used in a clinical study in the north of England:

healthunlocked.com/pmrgcauk...

If you start to feel increasing tiredness it is the most common sign your adrenal glands are struggling to top up the pred with cortisol and is a sign to slow down further. One top rheumy likes to keep his patients at 5mg for up to 9 months to circumvent the problem. It seems to work.

I do wish doctors would look at the potential muscle problems at the outset - and make sure the patients know about appropriate exercise to avoid the muscle wasting. It is in the guidelines after all!

[Jeanmh in reply to PMRpro]

Thank you PMRpro will try your way because I certainly don't want to have another month like I have just had .Only seen a rheumatologist once that was when I was diagnosed so I'm not missing out on much I get more help of this site .You are right about the muscles I've been having physio for six months and still struggling once the start going it's hard to get them back

[PMRpro Ambassador in reply to Jeanmh]

Just remember that however slowly you go you won't get below the lowest dose that managed YOUR inflammation level. Our slow ways just make it a lot more comfortable on the way.