Frustrated

Hi I am a 77 year old recently widowed and diagnosed at Christmas time with Temporal Arteritis. I am on 20mg steroids and frustrated because of muscle weakness. I am wondering if this will get better with reduction of steroids and what sort of exercise is best.

[DorsetLady PMRGCAuk volunteer]

Hi, if you were only diagnosed at Christmas with TA and are now on 20mg that’s a very low dose. What was your initial dose?

Your muscle weakness may be due to the Pred, but also the underlying illness - and yes it will improve. But in the meantime a bit more information from you would be good.

[PMRpro Ambassador]

Who diagnosed the temporal arteritis and what dose did you start on? 20mg after 3 months is a very low dose. And GCA is a serious systemic illness - you have to expect to feel pretty ropey really.

[Celtic PMRGCAuk volunteer]

Balfron, I'm assuming you started on a much higher dose when diagnosed at Christmas? I started on 40mg and was very lucky in being able to reduce down through the high doses very quickly, successfully down to 15mg after just a month, with the head pain, jaw pain, vomiting all under control within a few hours of my first dose and remaining so. However, this was under the guidance of a wonderful rheumy who told me to contact him at the first sign of a return of the head pain.

Muscle weakness was a problem (I had both GCA and PMR) and, with regard to your question as to "what exercise is best", I found it helped to walk every day, starting at just a few minutes and gradually building up as the PMR pain improved/allowed. In fact, sometimes, it took me longer to get my shoes and coat on than the time spent actually walking!

I'm so sorry to hear of your sad loss - I do hope you have lots of kind family and friends around to help you through these difficult early days.

[SheffieldJane]

I am so sorry that you have lost your husband and have to suffer the effects of this miserable illness by yourself. You did well to get off the high GCA dose so quickly and down to 20 mgs, if that is what happened. That must have been an extremely difficult Christmas. Are you mainly troubled by muscle weakness, of all your symptoms? How does it effect you?

I mainly notice a weakness in my hands when I try to open a jar or use a good old fashioned can opener. I imagine some sort of squeeze ball exercise would help. It is a bit early days for a physiotherapist but that might help later on. Walking on the flat has always been my go too exercise. I can’t wait for mad March to be gone so I can get out there again. I found a Fitbit ( or similar) really motivating as I increased my steps. It also made me go out when I didn’t really want to. I always felt much better when I came back. I have had a lazy winter, due to the weather and my daughter, husband and beloved grandsons joining my eldest daughter and her family in Australia. However, I have decided that I have been in a bad, sad mood for long enough and resuming my walks sans pushchair is one thing I can do. I am determined not to become an invalid by default due to the sheer lack of physical fitness. There’s always something we can do to make it better. If only it would stop snowing.

[Hidden in reply to SheffieldJane]

Thanks. Yes it is the muscle weakness which is so frustrating as it affects my legs and lower back. I do tr.y to walk as much as possible flat is fine but our villa ge has hills so you either go .up first or down! My legs often feel like jelly and after doing something in the house I have to sit down. I know I sho.uld be thankful as I have my sight still but I have been getting blurring probably because I have been on the iPad too long! For the first time today my ear has been sore and had to take paracetamol which helped. It is early days yet and I am so grateful that I found this site as I was feeling as if I was in the dark as I only see my consultant every 5-6 weeks, back to see him on 29th March.

Yes I am fed up with this winter, I managed to escape Scotland three days late to visit my daughter and look after grandchildren last week and going to Spain in April Can’t come soon enough!

[piglette in reply to Hidden]

I have trouble on hills too, but OK on the flat. In my case I am not sure if it is the steroids or the PMR.

[SheffieldJane]

Your last paragraph is full of hope and cheer. Remember that GCA is a serious systemic disease though and Pred is only dealing with inflammation. The disease is still active and as you say it is still early days. Please don’t hesitate to seek urgent medical advice if you think your symptoms are getting worse. Ear pain can be associated with GCA but wouldn’t normally be eased by paracetamol. Perhaps a GP visit is indicated? This is not a disease where it pays to be brave. Tell them about the jelly legs and the ear pain. In the meantime really learn to rest. When you go to Spain, make sure that you have plenty of Pred for emergencies . You may want a couple of mgs extra just for the journey too. Blurred vision can be a side effect of Pred. I am prone to painful eye strain. But always bear in mind the danger of GCA to your eyesight.

I don’t mean to be a misery guts, you do need to be careful though.

I hope Spain is wonderful. It is so lovely in the spring, perfect temperature, it will do you a world of good.

[Telian]

20mg seems a low dose for TA, I wont' repeat as DL has asked the same questions. The muscle weakness will improve but with time, you will have to learn to pace yourself, I could only 'do' for an hour+ before I had to rest and like you was very frustrated ( I didn't have this site then either). Walking is good but you might find this difficult at the moment - you are also going through the grieving process and for this reason alone you need to give yourself time..

Things will improve but you are very early on with this illness so patience is needed I'm afraid.

Best wishes

[BonnyQuine]

Hello Balfron 42

I also have Temporal Arteritis (GCA), diagnosed in November 2016 - just in time for my 70th birthday. Started on 40mg pred and now, after 16 months, am down to 7.5mg. I agree with everything Telian said.

I found the overwhelming fatigue extremely difficult, and found the only way to manage it was to rest a lot. I think this is part of the arteritis, as I had it before diagnosis. Never watched so much telly in my life! - used to be an avid reader, but couldn't even read at that stage. Just getting back to it now.

The muscle weakness is an added extra, and seems to be a pred side-effect. This was my absolutely worst symptom - like you, extremely bad at first and made normal life impossible - affecting every muscle. I couldn't really exercise at all, for a while, because of being too weak and tremulous - jelly all over, not just legs. But it does improve gradually, as the pred dose decreases. Gentle walking is the least difficult form of exercise to attempt. At first you may walk for a few minutes and then rest for an hour - just do what you can manage; don't 'push it' too much. It's easy to overdo it and, if you do, you'll be 'wiped out' the next day. As Telian says, learn to pace yourself. Little by little by little you'll be able to do a bit more.

It must be extra difficult having to manage on your own, when you aren't used to it. I'm guessing you're having to be very determined, and wish you all the strength and fortitude you need.