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[joat]

I was diagnosed fifteen months ago with PMRGCA and last year has been hard with excruciating pain at times, have got down from 40gm to 10 but pain every day. Consultant insisted on a Zoledronic infusion last December which increased the PMR from right side to left of body. I have looked after my daughter this week and had to use stairs which I do not have in my bungalow, could this be the cause of the pain increase and stiffness in my legs? Would be grateful for any comments as I have found reading posts comforting.

[SheffieldJane]

Oh joat! I think that I would be suffering in the same way as you with that regime!!!

That is such as steep, rapid drop of Pred. Pain is a warning to stop reducing. Then the infusion of Zoledronic...... Was this following a DEXA scan that pointed to particular dangers for you with Osteoporosis? I imagine that some symptoms came from that.

Pred is specifically to reduce the inflammation caused by PMR/GCA consequently the pain and stiffness is relieved. It is pointless taking it if it is not enough to do this. Was there ever a dose where you felt ok?

The increased activity and stairs will not have helped, we need to pace all our activities with lots of rest. First you need to get the inflammation under control and that would mean increasing your dose to a point of comfort. Then request a DEXA scan if you haven't had a recent one to see if the infusion is strongly indicated. A lot of us take extra vit D like Adcal, for the bone density threat. 40 mgs is a low dose to start with for GCA, it is normally zapped by very high doses eg 60 -80 mgs. How are GCA specific symptoms - neck, eyes, jaw, head?

PMR pains are normally bilateral. It is odd that your symptoms moved from the right to the left side of your body. I would even query my diagnosis if I were you, unless there is more PMR/ GCA specific pointers to relate.

There is clearly something wrong and you need a clever doctor to sort it out.

[joat in reply to SheffieldJane]

Thank you for your reply. I originally had a biopsy for GCA and an MRI last year which showed a partial insufficiency fracture due to developing osteoporosisis. Have requested a Bone Density test but GP not interested. I do take Adcal.

[joat in reply to SheffieldJane]

I apologise for not replying to all your questions - muzzy head! I originally saw GP as I had raised lumps on both sides of temple, and pains all over my head hence GCA biopsy. GP looked up what to do on computer and put me on 40gm with she said a Rheumy appt. This did not come until three months later and he was not interested in PMR because pain only on one side. I have gone through not being able to get out of bed with pain and stiffness on both sides and walking the floor for a fortnight with the pain. I am confused as to whether I should have had pain (quite severe at times) every day. Would be so good to have a day off. Do get down as I live on my own and am elderly but am grateful that I have a wonderful family but don`t want to keep worrying them.

Have a blood test next week and a phone call from GP so hope the readings will be lower and I am doing the right thing.

So good to be in contact with like people.

[SheffieldJane]

By the way welcome !welcome!

My clever friends will be along to help presently.🌸🌹

[Janann25]

Hello and welcome! Unfortunately I'm not one of the knowledgeable people on here but, like many others, I know from experience what a roller coaster this journey can be. You've definitely come to the right place for advice and support and I really hope that you start to improve soon. Take care

Jan

[joat in reply to Janann25]

Thank you for your welcome. It is certainly a help to know others are suffering as much!!

[PMRpro Ambassador]

Stairs can be blamed for a lot of things - and if you aren't used to them they will cause problems. We moved house from a big house with 3 toilets, one downstairs and where I had been fine, to a 2-up 2 down with one loo. The kitchen was downstairs - my office was in the bedroom. The PMR flared big time (not on pred at the time) and I had a choice: work and have a loo or be able to eat and drink! I managed to get over here to the flat which is 2nd floor but there is a LIFT! I went from barely able to walk to the end of the street to being able to ski! Not a lot but even so! The only difference had been the need to do stairs!

[Marcy47]

Hi Joat,

Welcome to the club. I have had PMR since Aug 2015, started on 20mg Pred, just down to 9.5mg. I try not to use stairs as I know it will cause pain the next day, I seem to be OK coming down, but not going up, or walking uphill too. Thankfully the Medical Centre has a lift, as my Drs room is on the 1st floor.

Try asking Dr if you can increase Pred for a while to combat inflammation, sounds like you are not taking enough. I have been down to 8.5 twice but had to go back up to 10 due to terrible pain in left thigh.

Marci x

[joat in reply to Marcy47]

Thanks for your reply. I am convinced the stairs changed the pain and am now wondering if I was wrong in listening to the GP who badgered me into decreasing the steroids from 40 in March 2016 to 10 now.

[PMRpro Ambassador in reply to joat]

It's probably just you need a bit more - a decrease from 40 in March 2016 to 10 now is not unreasonable. But maybe you have just gone a tad too far.

[Gaycreasey in reply to Marcy47]

Hi Joat

I find it amazing how different all our experiences are, yet the same in many respects. I have just had one of the regular blood tests and await the results. I will then have a telephone conversation with my GP, IF there are any concerns re the test. However, like you I have severe pains in my legs from only walking a few yards and often have to stop and massage my calf muscles. I would like to talk to the GP about that and will have to insist on a telephone consultation. Unfortunately we have to be insistent to be heard these days and don't always have the energy!

[PMRpro Ambassador in reply to Gaycreasey]

If you are developing what sounds like claudication pain - calf pain after walking a short distance that goes when you stop and returns when you start again - you need at least your ankle pulses checked and preferably a referral to the vascular department for tests.

How far do you mean by "a few yards"? Is it just one leg or both?

[SheffieldJane]

Hello joat, How are you getting on now you are presumably back in your own bungalow and hopefully more rested?

Have you returned to your doctor to talk about the pain you are in?

I would confide in your family, they would be hurt to know that you didn't. Honestly this is not a time to be trying not to be a bother to anyone.

The trouble with blood tests for this condition is that they aren't always a true indicator of how we are. The blood tests can come back showing a low level or no inflammation and yet we can still be in a lot of pain. Symptoms are a better gauge of how the disease is progressing.

[joat]

Yes, actually I did not stay at my daughter`s only visited each day. Have rested and taken things easy for the last couple of days and it seems to have lessened the pain. Have decided to try the DS reduction method and will speak with my GP next week. Don`t know your circumstances/condition but hope all is going in the right direction.