struggling 6 weeks after diagnosis

[Emilydarby]

hi

I recently posted with a bit of background after PMR diagnosis in November

15mg pred almost removed all symptoms of stiffness and body pains

Have had recurrent dull headaches throughout , I put down to side effects of pred and tried to eat better and drink more fluids

blood tests after 3 weeks showed a slight reduction in CRP but still raised white blood cells, GP not worried said she would rather treat the symptoms not the test results.

phone update with GP early December suggested I taper to 12.5 which I did on 11th dec

About 4 days after started to feel fatigued and headaches now constant , 20th December shoulder pain , feeling of facial pain more like sinus pain earache/tooth pain (no jaw pain) fatigue worse

Struggles on with pain killers which lessened symptoms a bit , have to be honest didn’t really connect that this could have been because of the pred reduction

Worried about GCA so first day back after Xmas as only already only have sight in one eye,(not connected to PMR or GCA) contacted surgery and was seen the same day , explained symptoms , given a check over , ears, throat , temples etc , GP thinks not GCA said temporal pulse strong , thinks maybe viral

Blood tests were due Friday so he did them then , cRP came back at 7 ( had been 14 and 8)

He called on Friday I explained headache and all other symptoms still present he said continue with pain killers up to max per day and would review again next week

Although I feel a bit better I’m still struggling with shoulder neck pain , daily headache and feeling of pressure/sinus type pain and feeling of blocked ears (gp says not blocked)

I have gone back to 15mg for last 4 days having read information on here and figured this was probably okay especially as surgery was closed and didn’t really want to battle with 111 or A and E

Stiffness is slightly better but not gone

Would more experienced folks say this means the taper was too quick and the symptoms are PMR related or should I be worried about something else going on.

I can contact the GP again from tomorrow but don’t know if I’m just fussing but I really don’t feel quite right

This forum is so supportive , thank you for being there especially over Xmas whilst I searched and found comfort and help in the pages

[PMRpro Ambassador]

Hard luck - these things always happen at the weekend or, worse still, a long weekend!

Personally, I think your GP is out of his depth - just because the temporal pulse is strong doen't mean you don't have GCA, it doesn't always affect the temporal artery. If the painkillers aren't helping at all, that really does suggest it could be PMR/GCA and, in view of the fact you only have sight in one eye, I think an EMERGENCY referral to rheumatology is called for.

You need to stand your ground with the GP and if they aren't on the case immediately, you will have to brace yourself, pack a bag with entertainment and snacks and head for A&E. You aren't fussing - there is something wrong and with only one eye - you don't take risks.

[Waverley63]

Hi Emily, I’ve been diagnosed with PMR beginning of December, I was also on 15mg daily and have now gone down to 10mg of steroids, it’ll be interesting to see if my symptoms come back. My pains completely disappeared on the 15mg but am getting slight aching pains in arms and knees today.

[Kendrew]

Hi Emily,

Firstly, please take Pro's advice as its so important you have the appropriate investigations to eliminate GCA as a potential cause of your symptoms.

Having said that, I just want to hopefully reduce your anxiety a little, by saying that I have always experienced head pains when tapering down a dose. They have often involved neck pains too with some stiffness occasionally involved.

When I first began steroids, I also developed head aches/pains which thankfully proved to not be GCA- related.

The pains have been very uncomfortable at times and involved scalp, cheeks, temples, forehead. They appear within a week of my taper, progressively getting worse until they begin to diminish.

I can't emphasise strongly enough though, that over the 4½yrs since diagnosis, I've been comprehensively checked out for GCA several times with blood tests, scans and examinations, which so far have shown no evidence of GCA.

However, I never assume the pains are steroid withdrawal symptoms and I'm always vigilant for any unusual or concerning changes in duration, intensity and manifestation of said symptoms that could suggest an emergence of GCA.

Wishing you all the best and a satisfactory outcome.

[DorsetLady PMRGCAuk volunteer]

Agree with others, you do need an appointment with Rheumy or somebody to rule out GCA - for obvious reasons.

And would say too big a drop, especially with Christmas thrown in.

Facial pains may well be sinus related [seems to be quite common at the moment] - but it shouldn’t be assumed. Definitely more thought by GP required.

[SheffieldJane]

I would be worried about GCA also. It must be identified and treated as a matter of urgency . The GP has left you no option but to do as PMRPro advises. You could be putting your eyesight at risk.

[Islandgirlvi]

I'm still new here too, but my Dr took mine down 1mg at a time at 2wk intervals. I got as far as 8 & PMR came back bad. Dr took me right back to 20, finally feeling better 😊 you may need to go back up until you feel better, then taper off slowly? My Dr also put me on diclofenac for pain.

[PMRpro Ambassador in reply to Islandgirlvi]

Honestly don't think you needed to go all the way back to 20mg. Adding 5mg should have been enough - although reducing that often, maybe it would need more.