A Little help please

[Digon7215]

Hi, I was diagnosed with PMR four and a half years ago. Started on 15mg of pred. Have never seen a rheumatologist, as my surgery does not send anyone with PMR to see one. I have slowly been cutting down on my own. Have had the regular blood tests. Phoned for results each time to be told 'all ok'. Down to 6mg. Went to Doc to ask for my blood test, was told He didn't think I had PMR. Thought I had never had it as my blood markers have never shown I had. To cut down to 5mg for a month, then 4 and so on until I am off of them. I did cut down to 5. Was in terrible pain. Could hardly walk or use my hands. I struggled with this for three weeks. Have to say that before this I was going through a stressful time. Went back to Docs. At last I am being sent to a rheumatologist. Am up to 6mg now. Still in a lot of pain in the mornings. Appt for rheumy is two months wait. I tried 7mg for one day and felt so much better.

Just wondered if anyone else has been told they haven't got PMR after this amount of time on pred.

[SnazzyD]

Hello. The PMR people will be along soon (I’m just GCA) but having read posts here for nearly 3 years it comes up often that docs tell people that they don’t have PMR because their bloods are ok. Not everyone has raised inflammatory markers to start and if they are not raised during treatment it can mean the Pred is just doing its job, not that PMR has gone. For that you need to be symptom free on zero for quite some time. For those who have had raised markers to start with, it can be a good guide to disease activity but even then that can be a late sign and inflammation can have built up before it registers.

The response to your increase in dose is a clue to your problem and even 4 years down the line isn’t unreasonable. I hope the Rheumy is a bit more open minded, or even up to date. Anyway, sit tight for more responses.

[Digon7215 in reply to SnazzyD]

Thank you so much for such a quick reply.

[Blackcatlover]

So glad you are going to a rheumatologist. PMR can manifest so differently in so many people. I have been struggling with this for three years. Prednisone alone has never worked for me at low doses. I have a flare up of symptoms after I get below 10mg. If I do flare the only way to get back to being pain free was to double my dose and start a slow taper again. About a year ago I started doing IV treatments of Actemra once a month. I’m now on 5mg of Prednisone and doing fine. Going to try tapering to 4mg starting today. Had a horrible experience with adding Methotrexate to my Prednisone dose. I would research the side effects if your rheumatologist recommends that. Good luck.

[SnazzyD in reply to Blackcatlover]

Have you tried steps of 0.5mg? 5mg to 4mg is 25% so having that will make it less of a jolt.

[Digon7215 in reply to SnazzyD]

Hi SnazzyD,

I have reduced most of the time by 0.5 mg. That is why I took so long to get to 6mg.. The trouble started when doc told me to reduce by 1mg. a month. The pain after about one week was just like when I was first diagnosed..

[Digon7215 in reply to Blackcatlover]

Thank you Blackcatlover.

Good luck with your tapering to 4mg. You must be feeling so pleased.

I will check out Methotrexate and Actemra.

I feel I need to up the pred and start reducing slowly again.. I will stick with what Doc told me for now.

Thank you for the information.

[PMRpro Ambassador]

One ignorant GP methinks!

About 1 in 5 patients with PMR never has blood markers that were "out of normal range". Some just don't develop the acute reaction that raises these values but some have levels that are raised for them but not high enough for it to register as high. My personal normal ESR is in low single figures, say 4 to 7. For some time it bumbled along at 16-18 and I was in a major flare unable to move without great difficulty - it was very raised for me but still "within normal range". Normal ranges are established by taking samples from 10,000+ healthy people and looking at the range of figures that covers 95% of them. In the case of ESR the range runs from 1 to 20 or so, sometimes 30 if you are old-fashioned. Having a low level doesn't mean you don't have PMR! Symptoms ALWAYS trump blood markers at any stage - because once you are on pred your markers SHOULD be in normal range - if they aren't you ask why.

There is no time limit to PMR - and all the time the underlying autoimmune cause of the symptoms is active you will need pred at the right dose. Just because someone else manages on 4mg doesn't mean you will - if you were well managed at 7mg and not at 5mg that is because you need 7mg. Nothing wrong with that. And the median duration of management with pred is just under 6 years so plenty of time in hand.

I assume this doctor wasn't the one who diagnosed you originally? Where are you?

[Digon7215 in reply to PMRpro]

Hi, Thanks so much.

He wasn't the doc who diagnosed me, but doc who did said it was PMR and sent me for my first blood test. That doc told me he was leaving the surgery, so I went with one I knew for results. He was the one who started me on the pred, and now tells me he doesn't think I have it because my blood markers have never shown I have.

I have felt fine over the four and a half year period. Have cut down with no help from anyone. Only from this site. Am very grateful to everyone on here.

I might try 7mg for a week and see what happens.

I live in Surrey. Near Wimbledon.

[PMRpro Ambassador in reply to Digon7215]

Rod Hughes, Chertsey ... Does private and will add you to his NHS list probably

[Digon7215 in reply to PMRpro]

Thank you

[piglette]

I hope your GP now realises the reason your blood markers were normal is because you were taking the correct dose of pred. You wonder what some of these doctors do for brains!

[Digon7215]

I know Piglette. Thank you for replying.