Stuck at 30 mg

[Bridge1990]

Stuck on 30mg how long can I stay there?Tapering by 1.5 mg not working

[MrsNails]

Hi BridgeHow long have you been on 30mg? At what dose did you start & how fast is/was your taper?

Do you have GCA and/or PMR?

MrsN

[Bridge1990 in reply to MrsNails]

Thanks for instant response. Don’t know how to post all my history. Have had PMR since 2011. Many flares . Latest in January. Have been struggling since. Was hospitalized with Adrenal insufficiency. Prescribed fast tapering from 30mgs. Each reduction resulted in pain and inability to walk. Even 1.5mgs reduction resulted in immobility. Took 30 mgs for 3 weeks. Can’t seem to go any lower. Really worried about such high dose

[PMRpro Ambassador in reply to Bridge1990]

You can copy and paste what you have written here to your profile If you click on your avatar at the top right corner a drop down menu offers you the option of going to Profile - and then the menu changes to Update profile

[MrsNails in reply to Bridge1990]

Hi Bridge, Always useful to have the background, presumably you are under a Consultant with you having Adrenal Issues.

Have you tried one of the Slow Taper Plans? See FAQ or l’m happy to send you a link if you can’t locate it.

Has a Steroid Sparer been suggested? ie Methotrexate?

You really need some Serious Intervention to get this dose under control, l’m sure PMRpro will be along shortly to offer some guidance.

I had a spell on 30mg/20mg/15mg x2 Courses, that is what caused my issues & being stuck a bit lower than you on 20mg - a New Consultant, Methotrexate & a Slow Taper Plan got me eventually to 5mg before a relapse but l spent a lot of time at 7.5mg Pred with MTX & did very well.

Please keep in touch & let us know what the Plan is going to be.

Kind Regards

MrsN

[Bridge1990 in reply to MrsNails]

I have issues with some medications adrenaline for one ! Dentist advised me to warn about extreme reaction to local, all pain killers except ineffective Paracetamol, several antibiotics so dread introducing Methotrexate . With all your encouragement I will persist for another week or so. Have a lovely, kind and open minded lady doctor and have shed a cold and uninterested and expensive Consultant Rheumatologist. Very happy to keep in touch Very Kind regards

Bridge 99

[DorsetLady PMRGCAuk volunteer in reply to Bridge1990]

I was on doses higher than 30mg for about 20 weeks, so don’t get in a panic about it.....but as PMRpro says it needs further investigation and a bit of thinking outside the box by your doctor.

[PMRpro Ambassador]

I think your doctor needs to put his thinking cap on - because it sounds very much as if there is something else besides PMR going on. Don't worry too much at present - people with GCA need a lot more than 30mg for months but you are right - you don't want to be there forever.

Is there anything different about this apparent PMR flare?

[Bridge1990 in reply to PMRpro]

The only difference I can determine is the response to high Steroid dose. I had quick responses to previous flares so feel adrift this time. Really appreciate your concern

[PMRpro Ambassador in reply to Bridge1990]

There are forms of inflammatory arthritis which initially present looking exactly like PMR and with similar responses to pred. What you are describing now sounds more like that - or even PMR that has progressed to LVV or even GCA (LVV is large vessel vasculitis).And of course - having one autoimmune disorder makes you more likely to develop another so that must be considered too.

I know - I'm such a cheery bunny ...

[Bridge1990 in reply to PMRpro]

Do appreciate your thoughtful reply. I have no pain in joints small or large nor scalp, jaw or eyes so hope not Inflammatory arthritis or GCA and today I actually was able to walk a lot more freely. Pacing myself as am inclined to push too hard for improvement. Will keep a close watch for another week and report back Thank you so much. I have seen that you too have had many struggles. Wishing us both better times.....

[piglette]

Have you been on 30mg of pred since 2011?

[Bridge1990 in reply to piglette]

Very, very happy to say no. Have spent quite a lot of time at low doses over the years.Hoping to get there again.

[piglette in reply to Bridge1990]

Oh good! When did you go up to 30mg again and why?

[Bridge1990 in reply to piglette]

Because of my Adrenal insufficiency. Hopefully I can reduce very, very slowly in a week or so.

[piglette in reply to Bridge1990]

Good idea, take it really slowly

[PMRpro Ambassador in reply to Bridge1990]

You should not need to go to 30mg because of adrenal insufficiency - that will will just add to the problem. The body only requires about the equivalent of 7-8mg pred to function - above that the adrenal glands stop producing cortisol within a couple of weeks/

[Bridge1990 in reply to PMRpro]

Frightening to hear that PMRPro. Hospital consultant prescribed 30 mgs, for one week and I felt a good improvement , then 20mgs for one week then 15 mgs by which time I was very, very stiff and sore. Stiffness was much worse than pain in shoulders and upper legs. Just couldn’t function. Want to keep trying for another couple of weeks before looking for another explanation.