Back again

[SherryAnnie]

As I have been feeing so rough of late with all the normal things that go with pmrgca I have been wondering if I should up my preds to 8 mg for a while. managed to get down to 2.5 then was told to up it to 5mg but that does not seem to be doing the trick.Have no future appoinments planned to see my rheumy and GP does not seem to know much so what do you guys think

[piglette]

The important thing is that you feel comfortable. PMR is normally managed at primary care level after a year or two as I suppose there is very little more that a rheumy can add unless there is a special need to see them. Can you give your GP a ring and see what they say? Alternatively just try 8mg. Do you think it is the PMR making you feel rotten or is it possible it could be something else?

[SherryAnnie in reply to piglette]

I have a very strong feeling it maybe the prm as I have had flares up's for no reason in the past the ache pains and tiredness all the time wears you down

[jinasc]

Hit it hard and hit it fast - up to 10mg for about three or four days and then go back down to 5mg and see how you feel, if you still feel rotten, go back to10mg and then reduce down.

We do have two reduction plans, devised by patients for patients.

sent you a pm.

[Celtic PMRGCAuk volunteer]

Sherry, if it is only two days since you increased your dose from 2.5 to 5mg, then either you may not have given enough time for the increase to work or the amount of inflammation circulating in your body is too great for the small increase to have any effect. In fact, many of the experts now feel that when encountering a flare we need to increase the dose by about 5mg, which would be in line with your thoughts to increase to 8mg.

Although you say you have no future appointments planned with your rheumatologist, with the added diagnosis of GCA and your other health complications, you really do need to be under his/her care. Have you investigated whether there is a rheumatology helpline available at your hospital? If so, you can ring and seek advice from one of the rheumatology nurses. If that service isn't available, then ring the rheumatologist's secretary, explaining your pain and asking if she can arrange an appointment.

With all the health problems you have, you really do need expert advice to rule out any other causes for you feeling so unwell.

[DorsetLady PMRGCAuk volunteer]

Hi,

Agree with others, you haven't given increase chance to take effect. Try 8mg for a week at least, if not ok, go to 10mg. When okay, you need to give your body time to stabilise. Then, and only then reduce slowly- by whatever programme suits you. And if necessary by 0.5mg a time. Shan't repeat my mantra, but slow and sure! That's the way to do it!

[SherryAnnie]

have been on the 5mg for a couple of weeks but today have up to 10mg and will try it for about a week then if (fingers crossed )it helps I will slowly cut down

[DorsetLady PMRGCAuk volunteer in reply to SherryAnnie]

Good, fully endorse Celtic's comments!

[Celtic PMRGCAuk volunteer]

Good luck, Sherry - hope it works.