Stopting steroids

What happened was, I went to my doctor with right temple headaches and pain and stiffness in my upper arms and shoulders.The doctor was concerned that I may have PMR I am 68 so of an age where it can occur.I think what concerned him most was the possibility of GCA because he phoned me for immediate blood tests. About 8 tubes of blood were taken and he put them through as urgent, but unfortunately being the weekend the most important ones showing inflammation have been delayed.

He phoned me at home and told me to go and immediately fetch a prescription for the 3 days 60mg prednisilone and start straight away. I shall certainly ask him what to do if the results are negative, but even doctors differ in the stopping process, I just wondered what others thought or if anyone has been in this situation. This is the first time I have ever had to take steroids an know nothing about them, except what I have read and even that differs. It is confusing.

Have you started the pred yet? If so did it make a lot of difference? I do hope so. Steroids are a wonder drug, but unfortunately they do have side effects.

This happened to a friend of  mine and she was diagnosed with temporal arteritis.  I wonder if your doctor considered this.

GCA is sometimes known as Temporal Arteritis as the arteries around the temples are the parts that are usually affected.

Yes, I think this was his concern. As he could not get the tests back that show inflammation he gave me the 3 day high dose to protect me just in case it turns out to be temporal arteritis. I do hope it isn't, as already it has affected my sleep, I am replying to your post and it is 4am on Monday morning and I haven't slept at all, it has not done anything for my arm and shoulder Either!

I was on high-dose steroidal chemotherapy for fourteen months to fight leukemia.  I'm now in total remission and have to take only a low dose until the New Year as a precaution.   I'm sorry to hear that your experience wasn't very good - it's never nice to have to go onto steroids but in my case it was life-saving.  I hope you have some good results and can start to ease off the medication. 

Good luck!

Minamii

Minamii, Congratulations!

It was a long time before I xould say, cancer free...I am so happy for you

Yes I have just taken the 3 days worth, he did not give me any more than that, but I think it was a precautionary measure because of the risk of temporal arteritis. I am expecting the final blood tests to day and am hoping that I don't have to take them. They are already causing insomnia and have not done much for my arm and shoulder pains either.

If they haven't helped the arm and shoulder pains then I doubt it is PMR as that should respond well to a far lower dose. But your GP will tell you today I imagine. 

If he had thought it was GCA then a better approach with it being the weekend would have been to send you to A&E as an emergency with a letter to the consultant asking for a rheumatology opinion. - they would have got the inflammatory markers done in an hour or so. GCA belongs in the hands of specialists - although your GP seems to have the right idea except if the rheumatologists want to do a biopsy the high dose pred may have affected the result. 

I have just had the blood tests back, all are normal. I took the prednisolone for 3 days it gave me headaches and I couldn't sleep a wink, in addition it did nothing for my muscle aches. My doctor has made me an appointment with a rheumatologist but he still wants me to take 20mg of Prednisolone! Which I am not very keen to do. Does anyone have any thoughts or advice on this, I really do not know what to do.

How soon is the appointment? Has he made it as an emergency? 

To be honest - if 60mg didn't deal with the symptoms, 20mg certainly won't!. And being on pred may well make the assessment more difficult for the rheumatologist. 

Hi again jean.  I took my steroids on waking in the morning.  I found that I got too "wired" after it to sleep if I took it later in the day.  20 mg should not bother your sleeping habits, especially if you take it early in the day.  I don't recall that I had headaches, although I had other things to worry about at the time, like vomiting blood!  Not due to the steriods, due to other drugs causing me to develop a stomach ulcer.  That has now healed, thankfully.  

I hope you get some relief soon.

Bests, Minamii

Having normal blood tests does not necessarily mean it is not PMR as around twenty per cent or so have normal results. If you are having headaches and muscle problems at quite a high dose of pred it sounds like it may not be PMR. I suppose you could see if by not taking the pred, things are the same. You should check this is OK with your doctor of course. One test is to take vitamin C for a week, then steroids for a week and then vitamin C for a week and see the result. This would be for PMR, if GCA is suspected that is totally different and needs something done immediately to save your sight.