Low starter doses

[camerashy]

Came down to 5mg of preds this last month..was doing ok, then symptom started coming back ie. pains in the head neck and jaw and arms so Dr. has put me back to 6 mg whether this will be enough who knows she also suggested that I my have PMR as well as GCA I have just received a copy of a letter sent to my GP and it mentioned that I should have been started on 40-60 mg not the 10 mgs I was given. also said I was one of the lucky ones who responded well to a low dosage. Has any-one else been given low starter doses and benefitted from them?

Lots of hugs

[DorsetLady PMRGCAuk volunteer]

Hi camerashy,

Doubt whether many have been put in the same situation as you, especially as GCA was suspected at outset. I'm amazed that you have felt as good as you have previously, but would surmise that you are now in the situation of too little Pred to control inflammation. Whether an increase to 6mg will do the job, I doubt that very much, but only too happy to be proved wrong for your sake.

Please keep a close eye (no pun intended) on your symptoms, and if in any doubt get medical advice promptly.

I see from earlier post you did see a Rheumy, was he the one that reduced you to 10mg after 5 days from 40mg?

[camerashy in reply to DorsetLady]

Hi ophthalmologist

My Dr. put me on 10mg before I had a diagnosis then when I saw the Rheumy she just told me when I should taper so as far as I am concerned she never read my notes properly.

It was the ophthalmologist who put me on 40mg when I had acute pain in my eye and that was just for 5 days.

Thank you for your reply

I hope you are well

[DorsetLady PMRGCAuk volunteer in reply to camerashy]

Yes, good thanks.

Doesn't sound as if Rheumy read notes - which is a trifle worrying to say the least!

See if the rise to 6mg helps, but if it doesn't then you need to consider going higher. I know it seems like a retrograde step, but you must keep the symptoms under control.

Good luck, and keep us informed please

[camerashy in reply to DorsetLady]

Thanks DorsetLady

We will see what happens

[violetdamacida]

I have had the same problem. Ive just joined this site to try and get some answers for myself. I'm back on 6mg after reducing to 5mg from 15mg gradually. My symptoms are returning - I have Polymyalgia btw not GCA.... there must be a better way?

[camerashy in reply to violetdamacida]

I did reply but not sure if it was sent!!

[DorsetLady PMRGCAuk volunteer in reply to violetdamacida]

It quite simple really - although you'd never think so reading this site.

I. Get a sensible doctor who starts you on the right dose

2. Leaves you on that initial dose long enough to get a grip of the inflammation

3. Gives you a sensible plan to follow -slow in time and small tapers

4. Allows you to amend plan as and when life gets in the way - as it will, sure as eggs are eggs!

5. Doesn't harass you to reduce quicker

6 Gives you a realistic expection of how long the damn things going to last -i.e. Not 2 years max

7. Is sympathetic to your needs - and listens to your concerns and suggestions.

8. Tells you to rest when you need to without feeling guilty.

Not rocket science really!

[camerashy in reply to DorsetLady]

Thanks DL

I remember. When I first joined the group you queried wether I had GCA because of the low dosage...well you were spot on..I got a copy of my Rheumys letter today. and it says that I should have been on 40/60 mg anyway we will watch this space

Thanks again for your input tegards