Conflicting advice

[Daisymay]

HiI had been going along steadyish for a year or more on 3mg pred. Aches in the morning but nothing very bad and I was very active.

In February I had some severe pain in the side of my leg and breast, very severe so requested a blood test first of all. Had a mammogram which was clear. Dr said no action on blood test but i found out later that CRP was15. I saw another Dr and had another blood test which was 11. He said that it was too high and to take 10mg pred for 1 month , 9 the next etc. I asked for another blood test hoping to see if the CRP was lower again as I didn't want to take so much pred. It was 15 again but the very same Dr noted no action. I'm totally confused. I tried calling rheumatology but the lines are closed. There is no helpline.

Is 15 catastrophic ? Should I take more pred?

Sorry for the ramble !

[DorsetLady PMRGCAuk volunteer]

Is 15 catastrophic ?

No, just shows you have more inflammation in your body than normally expected ….and doctor should be trying to find out why…rather than just dismissing it.

How long were you on the increased dose before the second blood test? … and do you still have pain in your leg?

[Daisymay in reply to DorsetLady]

Yes I have bad pain in my leg and still the burning pain in the side of my breast. I didn't increase the pred as I was loth to start taking a higher dose for a long time.

[DorsetLady PMRGCAuk volunteer in reply to Daisymay]

okay - think you need more investigation on leg and breast pain.

[Daisymay in reply to DorsetLady]

I had a mammogram just by chance it came along aymt that time and the des felt for lumps but apart from that I drew a blank. I did call the local breast clinic but they said as the mammogram was OK it's back to the Dr. So getting nowhere really. He leg pain I was told to wear knee supports. I'll keep trying. Thank you

[DorsetLady PMRGCAuk volunteer in reply to Daisymay]

Good that mammogram was clear -so do you think it’s muscular? Not a good answer about leg either - really not good enough -any chance of referral to physio…

[Daisymay in reply to DorsetLady]

No it's strange. At the same time I had very bad shooting pains in the side of my knee and the side if one breast. I couldn't sleep without strong painkillers. That's what started it all. I just added for the blood test as a start point. The CRP came out of that and the became their focus, I suspect because they didn't know what the pain was but thought that they had found something that they had a bit of a clue about! I will persevere as I need to find out what's wrong. Thank you.

[PMRpro Ambassador]

Are your PMR symptoms worse?

ESR and CRP are both non-specific markers and rise in response to a lot of things. A single raised result should never lead to a kneejerk increase in the dose of pred unless the symptoms have also got worse. It should be monitored to see if there is a rising trend before deciding to increase pred. If he didn't want to wait, then the first approach would have been better to treat it as a simple flare - add 5mg to dose where it happened and see if that clears things up and after a couple of weeks drop back to just above where you flared. It may save a LOT of pred compared the approach you were told to use.

[Daisymay in reply to PMRpro]

I was thinking possibly the inflammation increase was to do with the pain that I had. It doesn't feel like PMR pain. The Dr's dished out painkillers but are not interested in finding out what it is I feel. I will send another enquiry form through and perhaps be a bit more assertive. Thank you and DorsetLady for your help.

[piglette]

I hope 15 isn’t catastrophic, mine has not been lower than 29 and has been over 100. It really depends what it normally is when you feel OK. I think I agree with you, your doctor has gone OTT with your new dosage. I think I would try 5mg extra for a week and see if things improve. You can then drop back say by 3mg or 4mg if things are OK.

[Daisymay in reply to piglette]

Thanks piglette The first Dr did say that 15 was not so bad as I was over 100 when I was first diagnosed with PMR so I took him at his word. It was then ext Dr who said 11 was too high that made me think. I got a copy of my blood results and it says it shoud be under 5. I'm sure that's in an ideal world but when I found that there was no rheumy helpline anymore I though you good people would be the ones to ask. I wasn't wrong.

Thank you all for your good advice. Much appreciated. I will make a plan of action

[piglette in reply to Daisymay]

Your first doctor was absolutely right 15mg is probably the most popular starter dose. I would say 11mg is too low for starters. The normal for CRP is up to 5, so 5 is within the normal range.

[PMRnewbie2017]

Is the pain in your breast in the squishy part of the breast or is it on the chest wall near the ribs? Is it worse if you take a deep in - breath?

[Daisymay in reply to PMRnewbie2017]

It's not affected by breathing. It was constant stabbing pain I February but improved. Now its just an occasional burning flush in the side of the breast and some soreness in the ligaments going g from the breast to the arm. It now comes and goes. There was a feeling of tightness when I raised my arm but thus is much kess now. It's strange.

[jls93 in reply to Daisymay]

Could be rib -postural-upper 1/4 musculoskeletal inbalance /asymmetry.... not unusual.

[Daisymay in reply to jls93]

Not heard of that one. Thanks for the info. I now have an appointment to see a Dr ( anazed as they normally just phone ) on Friday so I am gathering all this info to put to him. .

[jls93 in reply to Daisymay]

Far down the line of differential dx..however solution is mechanical... pursuing your health is primary as you know. Best to you

[MrsPractical]

Hi Just a thought. When my mum had shingles, she had pain and burning at side of breast but no real rash.

[Daisymay in reply to MrsPractical]

That's a thought. I'll poserhe question to the Dr. Thank you