Do I have symptoms of PMR

[NinnyB]

good morning all,

I was diagnosed 2/1/24 withGCA after having serious sight issues in left eye. I had sensitive scalp, loss of weight and energy and left sided headaches for a month or so before but didn’t link these. Started on 50mgm but symptoms started again when I dropped to 40 so increased to 60mg. I am now down to 20 and some of the awful side effects are reducing as well.

I have suddenly started to have acute joint pains in shoulders, hips, knees and thumbs that are bent, as if lost the elasticity to straighten.

I am very anxious that this isn’t PMR. Would I get symptoms for this when I’m on 20mg of prednisone?

My bloods show raised CRP and the ESR machine wasn’t working , GP has put satisfactory next to these.

Am I being totally neurotic, please say that I am. Thank you

[DorsetLady PMRGCAuk volunteer]

To be at 20mg within 3months is quite quick in my view -and although that dose might be considered high enough to control PMR -there are many that required more.

What’s the timescale of these new symptoms? How long after you reached 20mg?

As for bloods, they needs to be repeated for starters - as ESR didn’t give a reply can’t say a “satisfactory” comment is appropriate -and do you know actual CRP reading?

More investigation required -and can you contact Rheumy department?

[NinnyB in reply to DorsetLady]

CRP 15.6 GP has said satisfactory previous around 4 mark. I asked if results would go to rheumy and they weren’t sure. I think your right I’ll try and ring them

Pains started a couple of days after dropping from 30 to 20. As did left side headaches and sensations on hairline. In other ways I feel better mainly because I’m sleeping a bit better.

It is so reassuring to talk to someone who understands

I am shocked that no result equals satisfactory

[PMRpro Ambassador in reply to NinnyB]

If your previous CRP was 4 and it has risen to 16 - that is definitely NOT satisfactory, it is signalling there may be increasing inflammation and it needs to be closely monitored.

No wonder you had problems after dropping from 30 to 20, 5mg at a time at this stage is more than enough, 10mg is crazy.

[NinnyB in reply to PMRpro]

It’s so confusing. The rheumy wrote down the tapering. 10mg every 2 weeks until at 20 then 15 for 2 wks. What would I do without you guys. I’m going back to gp Thurs to have bloods repeated and will see what they show.

[PMRpro Ambassador in reply to NinnyB]

Are you on Actemra? That is the only thing that could excuse a reduction plan like that in GCA. And even then, it is still very fast and would be likely to fail. There are a few patients who would manage it - but they are very much the exception rather than the rule.

[NinnyB in reply to PMRpro]

No Im not. When I relapsed at 40 he mentioned it might need adding if going back to 60 didn’t work, but not said anything since. I am dreading increasing steroids again, they make me so ‘wired’ but I will do what is necessary. It’s a lonely journey, I feel anbandoned by rheumy, eye clinic and GP and I am so so grateful you guys are out there.

[DorsetLady PMRGCAuk volunteer in reply to NinnyB]

It really makes me so cross when some doctors are in such a rush with tapering.

I know they don’t like Pred, but if they let patients taper more sensibly and weren’t so set on watching the calendar they would discover that without relapsing, the patients is undoubtedly taking less steroids overall and having better quality of life.

As for ‘hen do’ just be aware travelling is more stressful on your GCA - so make sure you take enough Pred to cover any flare-like symptoms, and remember to pace yourself!

[NinnyB in reply to DorsetLady]

Thanks for the good advice, I will really follow it and try not to do anything that will cause me harm. I will take extra prednisone that’s great advice. Thank you for listening to me, I feel better with the knowledge you and PMR have given me.

[Alliekat65 in reply to DorsetLady]

I saw eye clinic yesterday and like you had diagnosis this year started on 60 then said 50 due to height. I'm now on 25 due to drop in 3vweeks to 20. eye clinic lady said that this is where I need to monitor my vision ..to see if I loose anymore.....and if I feel I have to go A&E the floor fell out from me. i had leave work as i was in tears...noone had said about this...like you feel we get more answers here. .

I've got rheumatology next week..I'm hoping for answers and advise...at least we can get both here...Good luck

[DorsetLady PMRGCAuk volunteer in reply to Alliekat65]

Think you meant this reply for NinnyB rather than me...but she'll see it anyway - vagaries of HU 😏

....and yes as you reduce Pred, you do always need to be aware of a flare [and with GCA that can mean sight issues] - but be aware, not paranoid.

Hopefully the initial 60mg will have done it's job... and if you haven't had any problems to date, then hopefully you shouldn't in future so long as you are allowed to reduce sensibly.

I would think [hope] the eye clinic lady meant you should always be aware after a taper, not specifically the 20mg mark.

[sylla123 in reply to Alliekat65]

Allie .. I feel just the same as you, you are not alone , the doctors just seem to get bored of you and I too have had to educate myself , is it any wonder that Kate Gilbert wrote the " Survival Guide" for GCA and PMR... Although I kept asking to see a Rheumatologist I was never referred and didn't see one for two years , and he immediately wanted a full body scan and it found a fracture in T12 and two milder in the endplates at L2 and 5 .

[Alliekat65 in reply to sylla123]

I find it hard to talk to anyone apart from guys on here. when ya suddenly get told more info and you weren't expecting it. I was in tears and got sent home from work. even some of the people you see are abrasive. 1st nurse I saw was almost rude.

it's hard to deal with especially when the professional docs are almost flippant

[DorsetLady PMRGCAuk volunteer in reply to NinnyB]

Agree with PMRpro - rise in CRP need re-testing.. and no, it’s not a satisfactory level… No wonder you had issues with a 30% drop in dose… 10mg might be okay on higher doses..but then you need to slow down. Plus 10mg Pred makes a lot of difference to all sorts of pains, no matter the cause.

Just for info my regime was as follows-not saying it for everyone, but it’s another view -

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

17.5mg - 4 weeks

15mg - 6 weeks (Xmas period)

[PMRpro Ambassador]

Has the CRP been down to normal in the meantime?

Like DL I'm a bit taken aback at the spead of reduction of the pred dose - most people need 6 months to get to 20mg from 60, especially since you had a flare in the process which was also hardly surprising.

However - what you describe doesn't sound typically PMR, not least because at 20mg it sould really be controlled. Is it really joint pain or is it muscular pain? Joints are rarely involved in PMR, it is the soft tissues around the joints that cause the stiffness. And if it is muscular pain - is it crampy? Pred can cause you to lose magnesium and other substances through the kidneys and low levels can lead to muscle cramps. Try a supplement maybe.

But above all - I think you need a less arrogant uncommunicative rheumy who knows rather more about GCA than they appear to. Having just read your profile - I also see you are supposed to be going on holiday in May, when in May? Where to? Most good rheumies prefer GCA patients to remain in the UK at least for the first 6 months after diagnosis and whether flying early days is advisable is also questionable with low oxygen levels in the cabin on a longer flights.

[NinnyB in reply to PMRpro]

Thank you so much for replying and your pertinent questions.

I’m hoping you’re right and it’s just coincidence. Pain is in joints I think but hard to be sure. It just came on so suddenly and headaches and tenderness returned to left side. Told Rheumy he just said if next bloods ok just reduce by 2.5.

Holiday is end of April, specifically asked rheumy and he said flying wasn’t a problem. Have declared GCA on insurance and that was okay. It’s daughters hen do ( I won’t be drinking) so I feel I have to go. Do you think it’s a problem?

[PMRpro Ambassador in reply to NinnyB]

As I said above - that CRP is rising and that is always a warning to be careful. It is almost certainly due to the enormous reduction in your dose - you aren't heading relentlessly for zero, you are looking for the lowest effective dose and in the earlier stages of GCA that is going to be considerably higher than it will be later. That rheumy is very dilatory - you not only have a rising CRP, you have a return of symptoms. That really is clear evidence the dose you have reached is possibly too low for the current level of disease activity.

Where are you going for the hen do? Flying per se possibly ISN'T a problem - but being away and developing a flare when away from your medical team might. Though they don't sound particularly good ...

[NinnyB in reply to PMRpro]

Majorca for 5 nights, the consultant didn’t ask me and I can see now that that is very relevant if things go wrong. I think your right and the ‘team’ I have aren’t the best, although he is the senior guy in the rheumatology team. Have got an appt with nurse on Thursday to repeat bloods, but according to my notes everything is satisfactory and she is doing me a favour.

[PMRpro Ambassador in reply to NinnyB]

Senior guy maybe but is GCA/PMR his "thing"? Most of them are good at RA but tend to dismiss GCA/PMR as something that goes away easily and is managed perfectly with pred. And they aren't.

[Gail10US]

Some view PMR and GCA and the flip side of the same coin. ie. the same disease process but expressing different symptoms. And, it is not at all uncommon for some to have symptoms of both at the same time. Sudden shoulder and hip pain/stiffness are classic PMR. I also have the added thumb joint pain when I'm having a PMR flare. Treat your new PMR symptoms as part of the same disease process. Good luck, NinnyB.

[alvertta]

hi NB. We are all slightly neurotic. When you lose eye sight, you have a right to be. You are getting excellent advice here. This is a marathon. Not a sprint. Slow slow on the reducing dosages. When I was at your stage I did blood tests twice a month. I Amin year 6. Still taking prednisone 3 daily plus Actemra every 3 weeks. Nooo rush.

Ommmmmm. All the very best.