Marigold

[Berylholley]

I was on 40 mg pred and reduced it to 35 mg on day 12 have now got crippling lower back pain should I go back to 40 mg?

[PMRpro Ambassador]

Do you have GCA or PMR? But no, really you need to speak to your doctor about not reducing.

[Berylholley in reply to PMRpro]

Thank you. I have PMR suspected GCA. The 40 mg made me feel so much better and I am not seeing my doctor for another week.

[PMRpro Ambassador in reply to Berylholley]

Normally in GCA you would be left on the starting dose rather longer - up to a month - and, if your ESR and CRP blood markers were raised at diagnosis it is usual to check them before a reduction to be sure they are falling and preferably they should be down to normal sort of levels.

If there is a suspicion of GCA your doctor should have you referred to a rheumatologist as a medical emergency - some hospitals have fast track set-ups to accomodate that. GPs are not capable of managing GCA - whatever they may think!

The back pain could be something else - have you been overdoing things or resting (which is what you should be doing)?

[Berylholley in reply to PMRpro]

I have had the blood test results and as before there are no markers. Dr has referred me for a MRI scan on 23rd July so I hope to see what might have caused the back problem. My next thing is to decide what my monthly drop will be from 40mg. 5mg, 2.5mg or less? Seeing rheumatologist tomorrow for the first time.

[PMRpro Ambassador in reply to Berylholley]

Then you ignore the blood tests - up to 20% of PMR and GCA patients never have these raised markers - and go by symptoms alone. I would do a smaller drop every 2 weeks - the change in dose is easier to cope with but you get to the same place at the end of the month. At this stage I wouldn't do less than 2.5 or it will take forever.

[Berylholley in reply to PMRpro]

thank you I will do that. I will ask the rheumatologist if I can have some 2.5mg, should I have the coated?, if he won't give me a prescription I have got some I cut up, only the others would be more accurate dose.

[PMRpro Ambassador in reply to Berylholley]

Accuracy is not important. If you cut a tablet and take it over the 2 days you will have it all near enough - but it will have been less each time than taking the whole tablet which is all that matters. Whether it was 1.1mg one day and 1.3 the other and the other bit was in the crumbs is irrelevant.

[Berylholley in reply to PMRpro]

I am learning all the time thanks, as I am presently taking 2 tabs at night and 6 in the morning, I am thinking of reducing the morning dose as I need the night dose to reduce any pain in the morning.

[PMRpro Ambassador in reply to Berylholley]

Good idea.

[Berylholley in reply to PMRpro]

I have had my first appointment with my Rheumy last week and would like your comments: I am trying to pair down from my 40mg and am currently on 37.5mg he wants me to get down to 30mg and then proceed as follows:-

30mg OD 1 week

20mg OD 1 week

15mg OD 2 weeks

12.5mg OD 2 weeks

10mg OD 1 month

Reduce 1mg/month

Thank you in anticipation

PS I am 84 ys old.

[PMRpro Ambassador in reply to Berylholley]

He obviously doesn't think there is any likelihood of GCA then! Does he also not think you have PMR?

However, while I think it is too fast - you are changing your dose every week and your poor body will protest - I think you have to try it down to 20mg at least. But from there you really would be better staying longer at each dose.

Why not post this as a new post - then lots of others will comment too. They may not see it here.

[Berylholley in reply to PMRpro]

You are all right before he looked at me he said he didn't think I had PMR, why then could I not lift this teapot or kettle and was in agony trying to turnover in bed. Also found from the other ladies comments "I had Frankenstein Legs" when I got up to walk. The reason the Dr said she wanted me to go for a biopsy was I developed Jaw stiffness and couldn't open my mouth very wide to eat my breakfast.

[PMRpro Ambassador in reply to Berylholley]

Well - you have something! If he wants to say, not PMR he should have some other ideas. One is left to ask what makes him think he can SEE if someone has PMR!!!

[Berylholley in reply to PMRpro]

The reason I refused to go straight up to the eye hospital was I was hoping the 40mg would be enough, which Dr then decided to prescribe, next morning all my PMR systems had gone including very sore neck and shoulders. I have joined a post called tapering today and had replies from 3 people so far.

[Berylholley]

I didn't have the blood markers but have been diagnosed with PMR. I have my first appointment with a rheumatologist on 21st June. Don't normally suffer back pain.

[PMRpro Ambassador in reply to Berylholley]

If the pain is severe I think you need to see your doctor. But there is no real reason why you shouldn't try 40mg to see if it helps.

[Berylholley in reply to PMRpro]

That's what I was hoping I will see how it is tomorrow.

[SnazzyD]

Hello, are you sure the back pain is PMR? Might be worth checking with a doc for other causes as there are many.