Steroid dependence

[Warren43]

I have been on Prednisolone for 7 years, for the past 2 years 3mg daily. Would like to get down to two and a half mg daily. Any suggestions as to how to do it without feeling more stiff and aching than I do already.

[TooSore]

Hate to say it but if you're already stiff and sore you may not be ready. Does your bloodwork follow your symptoms with raised ESR or CRP? May be a good idea to start with a blood test.

[DorsetLady PMRGCAuk volunteer]

Hi,

As TooSore says if you are still getting stiffness and aches you shouldn't be thinking about reducing.

Maybe you're just one of those unlucky people who cannot get down to zero. And below 5mg you get virtually no side effects, so maybe you should think of increasing rather than reducing

However if you're still getting problems then are you sure it's PMR? At that level of Pred the normal aches and pains of life resurface!

As suggested, get your bloods tested first before you do anything.

[PMRpro Ambassador]

However much you would like to get to a lower dose - as the others say, you sound as if you are already at a lower dose than you need to manage the symptoms. There is no virtue taking too little to manage the symptoms properly - you don't have the benefits to balance ut the downsides. However, 3mg is a low dose and not one to worry about greatly. I'm on 6mg at present - after nearly 8 years. I have been down to 3.5mg but that was followed by a flare and back to 15mg. I'll take getting to 5mg again!

[Warren43]

Thank you for your comments and sorry you have had to go back up again. Maybe I will go back to consultant but feel he is not really interested. Good luck.

[Warren43]

Have had an Arthroscopy recently plus 2 lots of antibiotics does that upset things in as much as fatigue and muscle pain has come back badly?

[DorsetLady PMRGCAuk volunteer in reply to Warren43]

Would probably imagine so, doesn't take much to upset PMR!

[PMRpro Ambassador in reply to Warren43]

Antibiotics can cause muscle pain on their own.

[Warren43]

It's giant cell arteritis that I have, don't know if has "burnt itself out" as one consultant said to me or not but would like some ideas on what type of excercise may help, have swum for years, badly, but now find it makes me ache so badly, any ideas?

[DorsetLady PMRGCAuk volunteer in reply to Warren43]

Hi again,

my GCA lasted about 5.5years, so it's possible yours has burnt out. Do you think the aches & pains you have are GCA related, or as I said earlier attributed to other illnesses? What was your Arthroscopy for?

I started Pilates whilst I still had GCA to try and build up my leg muscles again, found it very good especially as I have arthritis in knees and find it difficult to do standing poses as in Tai Chi or Yoga.

If you can't manage swimming, how about aqua aerobics? Not quite so strenuous.

[HeronNS in reply to Warren43]

Try tai chi. It is surprisingly good for you considering how gentle it seems. Has even been shown to help improve bone density!

[christine2715]

If your bloods are ok and you are really determined to get down I understand I have read that a yo-yo approach can help but I am no expert - ie 2 1/2 g. on day then back to 3 mg then down to 2 1/2 g etc.

[Seabyrd in reply to christine2715]

Christine 2715 is excellent advice if you are going to reduce...That's the only way I would dare to do it...in other words when I want to reduce by 1 mg, I try doing normal dose one day... then 1mg less the next for a week or even two weeks depending how it goes.... by the time it your body realizes the lower dose you are back to the normal dose and your body is satisfied..I think this is especially important when reducing under 5mg. The second week you can do your normal dose one day then reduced dose for 2 days...etc... way less dramatic than a sudden 1mg drop... the body often has great difficulty dealing with doses below 5 mg.... just be very careful since GCA is much more threatening than PMR .... you don't want to lose your vision or anything else.

Also if you do flare you normally have to go way up on your dosage to get relief... then that sets you months behind again...I have seen people do this over and over...so slow, slow slow... is much better and gives your body time adjust !!

[Warren43 in reply to Seabyrd]

Thank you seabyrd, very helpful advice, I am on 3 mg and want to reduce by half a mg as I have been on this dose for 2 years. Consultant not keen for me to come down in case GCA comes back. Have just made an appointment to see him to get his opinion.

[PMRpro Ambassador in reply to Warren43]

The original of this

healthunlocked.com/pmrgcauk...

was worked out by someone who couldn't get below 3mg. This is even slower than what he did and also saves cutting fiddly little tablets into even tinier pieces. It is being used in a clinical study in Leeds.

[jinasc]

I would ask for a Synathacen Test (look it up on the thread on hear by using the search box top right hand side on the page.

Also ask if your Consultant if he has access to use the 'Tabul' study which uses Ultrasound (needs a specially trained person). My Consultant was part of that study and he used it for and 'end' result. It showed my GCA had gone into remission as he was reluctant to let me stop the pred.

Again use you search engine and read up on 'Tabul' study.