Weakness and pain with GCA

[PenelopeVita-Finzi]

I was diagnosed with GCA in September 2014 and am now down to 7.5 pred a day and 15 Methotrexate a week. I have had the usual side effects of pred, in particular insomnia and weight gain, and have had some good advice from kind people on this forum. My question today is about muscle weakness and pain and joint pain. Before all this started I was a keen walker and have kept up a daily walk albeit short. I am dismayed at how weak I am and unable to walk for any distance. Yesterday I walked up a hill with the help of my husband and my stick and had to stop to rest a few times. This is a walk that used to take me 15 minutes and it took us over half an hour. Last night I had increased pain in my back, knees, thighs and calves.

Should I be pushing myself more in order to strengthen my muscles? Or the opposite? Has anyone had experience of being in this state and fully recovering? I am 76 so maybe I am experiencing the normal aches and pains of old age? I am having physio which has helped.

[Celtic PMRGCAuk volunteer]

Penelope, I would definitely recommend leaving out the hill-walking for a little while yet. Although walking on flat ground is good, your muscles will still be intolerant of over-activity, and, if my experience was anything to go by, I would count walking up hills as being over-ambitious whilst on a Pred dose anywhere around 7.5mg. That dose is around the equivalent amount of natural steroid (cortisol) our bodies make when well and is a dose around which your adrenal glands will be trying to kick back in again with their natural production having been suppressed by the higher dose steroids. Flares in inflammation can be quite common during the first 12-18 months of PMR/GCA/steroids, and having done so well to get to this stage it is best not to upset the applecart now.

Three years on after reaching remission from PMR/GCA and ceasing steroids, I can still find hills a bit of a struggle and can experience complaining legs for a couple of days afterwards. However, I do have a couple of other problems such as a slipped lower lumbar vertebrae and a slightly leaking mitral heart valve that could be contributory, not to mention Anno Domini coming into play!

Also, be careful not to overdo the physio, the usual manual techniques of which are not recommended whilst there is still inflammation lurking. Gentle massage, heat treatment and ultrasound, on the other hand, can help.

[PenelopeVita-Finzi in reply to Celtic]

Thank you, Celtic, for your explanation and usual wise advice. Unfortunately, as I live on a hill, I am unable to avoid walking uphill to some extent. I have been having physio for a trapped nerve which is now much better & the physio is aware of the problems of GCA. But I shall try massage.

[Celtic PMRGCAuk volunteer in reply to PenelopeVita-Finzi]

I do so understand that as you live on a hill, it is impossible to avoid it. Our son has recently moved to an area surrounded by uphill walking, and he and his wife became parents a few months ago. I am finding pushing our rather large baby grandson around the area in his pram more than a challenge, even after PMR/GCA - thank Heavens for hubby who comes in very useful even though he's seven years older than me!

You're doing very well considering you have also been experiencing a trapped nerve. I can't speak from personal experience, but I'm sure PMRpro will be along with her recommendation of Bowen therapy should you be unfortunate enough to experience any further problems in that area.

[PMRpro Ambassador in reply to Celtic]

Hehe - how did you know! It's perfect for a trapped nerve - I know THAT from personal experience!

[Celtic PMRGCAuk volunteer in reply to PMRpro]

It's been mentioned a couple of times!!!

[PMRpro Ambassador in reply to Celtic]

I too wish I didn't have to say the same thing over and over again to different people! Mainly because it means we are getting far too many new members with PMR/GCA of course.

[Celtic PMRGCAuk volunteer in reply to PMRpro]

It's difficult to know isn't it whether PMR/GCA is actually becoming more prevalent or whether word is just getting around - it would be nice to think it was just the latter.....

[PMRpro Ambassador in reply to Celtic]

I suspect it is being diagnosed a bit more - as younger doctors are being educated about it and that does come down to the work people like Pam do going into medical schools. But unfortunately I also suspect it is more prevalent - especially amongst younger people. Autoimmune disease in general is on the up - starting with Type 1 diabetes.

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Let's hope research is also "on the up" - younger people being affected might also drive it, sad as that sounds.

[PMRpro Ambassador in reply to Celtic]

It becomes more cost-effective yes when they realise that working age people are also affected. They'd prefer we just disappeared since according to them we don't contribute to the economy. Though they are quite happy to take my tax I note!

[Handler5 in reply to PMRpro]

No worries PMRpro - us Newbies need all the info we can get !! Keep up the good work

[PenelopeVita-Finzi]

Thank you. At least you have the pram handles to hang on to!

[PMRpro Ambassador]

No you definitely shouldn't be pushing yourself but you will be able to improve that performance with time. Three years ago I could barely get to the village - some 2-300yds - and that with crutches, now we walk briskly for a good half hour every morning around a circular walk in the village. It has small uphill bits that at first I really struggled with and the very short version took a good 45 mins. The long version was just a dream and often I would have to stop and sit down - or at least lean on a fence - on the shortest walk. Now we often do the longest version in under half an hour and no stops - until the end when we call at the cafe in the village (have to provide them with business)! And on a really adventurous day we walk into Town, have lunch and walk back, a good 40 minutes each way. But there are no steep hills, just short steep bits.

And Celtic is right - for that back pain I would try a few sessions of Bowen therapy to see if it would relieve any of it. If it will help you will know inside 3 sessions - if there is no improvement at all, forget it and spend no more money on it. Consider getting a rollator instead of the walking stick. You walk more naturally which may help that back pain - and you always have a safe and solid seat to rest on. I found I could do far more if I walked (or skied but that was a few years ago) for 5-10 mins and then had a few minutes rest and repeated that a few times. The muscles are having a reduced blood and nutrient supply and get tired far more easily, especially if you keep going past the stage when they are exhausted - they are unable to signal that to you. Give them a bit of a rest and you can go a bit further. Within a month or so you will find you are going farther overall without so much payback pain.

And if the hill really is far too much - how about taking the car or bus somewhere where you can walk on the level to do your training?

[PenelopeVita-Finzi]

Thank you for some very useful tips. Much of what you say, stopping for short rests, is familiar and overall it is encouraging. Patience and determination seem to be called for.

[DeliaGray]

Hello Penelope,

I was diagnosed with GCA/PMR in July 2014. I am British but live on top of one of the steepest hills in San Francisco. Anywhere I walk I have to come back up several blocks of hills. At first I could hardly make it but after trying a little more each day and moving at a slower pace than I used to, I find that I am now able to do it again. However, I am still at 10 mg of prednisone. I have tried twice to go lower with relapses each time. I am presently in England helping my sister in law care for my very sick brother. I have had to extend my stay and when I get back home 2 days before Christmas I will have been at 10 mg for 3 months. Then I will have been gone 2 months. I will then have been at 10 mg for 3 months, but I do not want to change the dosage until I am home. Traveling these days can get quite stressful. I am 77 so hang in there, you will be able to recharge your batteries bit by bit and will soon be back to your normal walking pace. However no Christmas shopping or decorating for me this year. !! That is quite a relief.!!

[PMRpro Ambassador in reply to DeliaGray]

Remember that the Quick and Kirwan paper suggests keeping the patient at 10mg for a year before continuing the reduction - and that is whether it is PMR or GCA.

rcpe.ac.uk/sites/default/fi...

[PenelopeVita-Finzi in reply to DeliaGray]

Thank you for taking the time to send me encouraging news. It seems to be taking a very long time to improve, if at all. Penelope

[HeronNS in reply to PenelopeVita-Finzi]

I do feel for you. If there is one good thing to come from this unwelcome journey with PMR it is the extended tutorial in patience! I am not in as difficult straits as you, but even so I have had to learn how to take things more slowly and have several shorter walks a day rather than doing it all in one. Today, in fact, was the first time in several months that I walked for an hour. It was a beautiful clear, sunny, cold day and I felt so invigorated. Now, having learned my lesson from past activities, I am taking it very easy for the rest of the day so that I recover.

Before diagnosis I had tried physio (which had been great for other issues) and it was no help at all; in fact my physiotherapist gave up on me. Now I am seeing a different physiotherapist, but for a specific therapy, not exercises, and that is helpful as I tackle the more difficult phase of the journey towards (flashing marquee lights and drumroll please) Pred Zero. (I aim for a year from now just to keep hope alive.)

[PenelopeVita-Finzi]

Thank for a cheerfuland hopeful reply. I do ppreciate it very much. Penelope