Should I follow the reduction plan?

[sealine30]

Good morning. I have been following a fairly rapid reduction plan following a negative GCA biopsy, I have reduced from 60mg to 20mg in 3 weeks with some side effects but generally nothing major. However yesterday I started again with muscle aches in both shoulders/upper arms, and my knee has started locking up again through the night, have some temporal headache and jaw pain (not on chewing). Should I follow the reduction plan to 15mg today, stay on the 20mg for longer or increase? I dont have another rhummy appointment for 4 weeks or so

[DorsetLady PMRGCAuk volunteer]

Don't reduce any further whilst you are in pain. This indicates that the Pred is not keeping things under control even at 20mg. I would suggest you go back up to the last dose you were painfree - whether that be 25 or 30. After a few days the pain should go again if that is the problem. Stay at that dose for a week or so, and then try reducing again, but more slowly this time. Remember the 10% mantra!

You can also find the reduction plans - just look at 'tapering steroids' or PMRPro's posts. You could also try contacting Rheumatology dept to let them know what you intend to do if you are concerned about going against their advice. DL

[Celtic PMRGCAuk volunteer]

Sealine, unfortunately having a negative biopsy does not mean that you do not have GCA.

In view of the returning symptoms and "temporal headache", increasing the dose back up slightly (perhaps to 25-30mg) should give you an answer within a few days as to whether the problems are being caused by increasing inflammation due to reducing to too low a dose too soon. If you are someone who had raised markers of inflammation at diagnosis, then the blood tests (ESR and CRP) should be repeated for extra back-up.

If your rheumatology department has a rheumatology helpline then you can ring them or even the rheumatologist's secretary to see whether your appointment can be brought forward.

[PMRpro Ambassador]

As Celtic has said - a negative biopsy does not necessarily mean NO GCA. If you had symptoms consistent with GCA they should actually take precedence over a biopsy result. If you are having returning symptoms that could be GCA then you need to see your rheumy urgently before reducing any further.

However - jaw pain that is there at rest is less likely to be GCA. You still need to discuss this with your rheumy and maybe your GP can help.