Why did my legs hurt and why couldn't I see

[GOandBuddy]

In July 2022, I retired from work, and I embarked upon a keeping well program. I tried to walk 6,000 steps per day. After a short while I suffered pain in my leg muscles, which made me feel I was overdoing the walking. I saw my GP, who did bloods. Something was wrong, but unsure what. I was told to come back in 3 months and they would check again.

3 months later, I was worse, and the pains had progressed to my arms and shoulders. I had more blood tests and the Doctor called me to say something was wrong, and she needed more. I explained at that point, that I was having difficulty in chewing my food and that I had got up in the night to make a cup of tea and I could not see the tea cup to put the tea bag in.

The GP immediately could see I was in big trouble and arranged for me to go very urgently to Bournemouth Eye Hospital.

I cannot speak highly enough of the eye hospital, they diagnosed and explained the problem and immediately put me on steroids (60mg per day). I was also fast tracked to Rheumatology at Poole Hospital and I had the appointment through within 4 days. At this point a scan was done which confirmed I had GCA.

I am continuing on the Steroid treatment, but really struggling every time I have a reduction in dosage.

At my recent follow up visit with my consultant he explained the danger of continuing to be on such high doses of Steroids, (presently 25mg per day) and I am trying my best to reduce these on the designed planned. However, when I do reduce the dosage I find I am back to severe pain in my legs. The consultant wants me to continue to reduce, and if I do get the leg pain then return to GP for further investigation, just in case there is an underlaying factor causing this pain.

I would be interested to know if anyone else has had a similar problem. Or the disease has manifested itself in the same way that mine has.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

You are lucky that sight was saved…and GP should have followed up on first round of bloods sooner- as you discovered a lot can happen in 3 months…but well done Bournemouth/Poole hospitals.

Can you give a bit more info on your reductions to date…and perhaps your legs do need to be investigated more [if it were PMR then 25mg should be ample to control pain], so wondering if it’s PAD [peripheral arterial disease] which causes limb claudication - and you actually have LVV [large vessel vasculitus] sometimes known as extra cranial GCA as well as your cranial GCA

nhs.uk/conditions/periphera...

..and your Rheumy may want you to reduce, but that may not be the best thing..

Picture does should legs being affect by PMR alone - but we do know from others on it not quite a simple and clear cut as that.

So please see GP about legs …and let us know outcome

Crossover

[GOandBuddy in reply to DorsetLady]

Thankyou for your quick reply. I will discuss thus with my hp. Thus is so helpful. Thank you so much

[PMRpro Ambassador]

As DL has already suggested - first thing I think of is PAD causing lower leg claudication. Has the GP checked your ankle to arm BP ratio and the pulses in your feet? If it is due to inflammation narrowing the leg arteries even further, that would account for the reduced pred resulting in deterioration in the symptoms.

The practice nurse can do those basic checks and then you would need referral to the local specialist vascular unit for tests and assessment.

Depending on how you look at it, 6,000 steps isn't that far - or it is a pretty good distance for someone with PAD, However, when you have PMR as part of your GCA, muscle pain isn't unusual if you do too much all at once. Is it better if you split up the walking into shorter bites?

And yes - well done the GP although she could have done better sooner!!!!

[GOandBuddy in reply to PMRpro]

Thankyou fir the suggestion. I am due to reduce steroids, I await the outcome. In the event of keg pain, I will ask my gp if this could be the problem. Fir now I have slowed up on the walking. Why kill myself! I am bring kind to my self.

[Cobalt2sister]

Hi. Thanks for sharing your journey. This may be off the mark but do you take statins? I have GCA developed terrible leg pain which went to arms and shoulders. Blamed it on prednisone but then thought maybe statins. My cardiologist put me on a 2 week statin vacation and all the pain went away! Hope you find out cause and be soon on the mend. Good luck. Ps your CK level doesn't always have to be raised to be statin.

[GOandBuddy in reply to Cobalt2sister]

Thank you for the tip. No I do not take Statins.