Painful Neck and Calves

[GreatGranny4]

Hi I’m tapering under the supervision of my rheumatologist but and I’m now on 6mg and due to taper to 5mg on Tuesday. For the past few weeks I have been experiencing a lot of pain in my calves and neck,I’m fairly sure the neck pain is caused by my D.I.S.H. What I’m not sure about is the pain in the calves, can PMR cause problems there is it just the trunk? I also have an under active thyroid

I’m due to do a long haul flight at the beginning of February and I’m a bit worried about it because of the pain although whenever I fly I always were compression socks

Any suggestions would be most welcome, thank you.

[PMRpro Ambassador]

With a trip like that on the horizon, I wouldn't be risking a taper at this stage. Especially at this stage where you are about to be under a fairish stress with the trip - nice stress though it is.

The calf pain - is it all the time? When you walk any distance? Does it go away when you rest?

[GreatGranny4 in reply to PMRpro]

It’s more or less all the time, not always as bad when I’m sitting but difficult when I want to stand up so I’m worried about being in a confined space on the plane.

I’m carer for my husband who has Parkinson’s and we’re going to a family wedding in India, my husband is Indian and he still has family there. I think this is the last time he will be able to make the trip so I would hate for anything to go wrong.

[PMRpro Ambassador in reply to GreatGranny4]

You have booked airport assistance haven't you? Essential - I use it every time and it makes such a difference. No rushing - they do that for you! Deal with picking up the luggage, where you should be at any time.

Is it both calves? What does your GP think?

[GreatGranny4 in reply to PMRpro]

Yes we’ve both got airport assistance, I learnt from experience last year when we went to Australia and I didn’t think I needed it, I definitely misjudged my capabilities!

I haven’t asked my GP yet, I thought I would see what anyone thought on the forum first.

[PMRpro Ambassador in reply to GreatGranny4]

Always best to check with your GP with something like that. Was it better at a higher dose of pred?

[GreatGranny4 in reply to PMRpro]

Thank you, I'll contact my GP in the morning.

Just after Christmas I upped my pred because I wasn't very well and I didn't have pains then. It doesn't get better during the day so that's why I queried if it was PMR.

Thank you for your help it's very much appreciated.

[PMRpro Ambassador in reply to GreatGranny4]

So on a bit more pred it goes away?

[GreatGranny4 in reply to PMRpro]

Yes I went back to 10mg for a week then back to 6mg. I have a tear in my nimiscus on my right knee that I'm doing physio for and the pain is at the side of my right knee but it's different to the pain in my calves.

[PMRpro Ambassador in reply to GreatGranny4]

Must be due to inflammation then - needs looking at.

[GreatGranny4 in reply to PMRpro]

Thank you, I’ll contact my GP.

[DorsetLady PMRGCAuk volunteer]

Definitely no tapering before going away- one of the no, no’s suggested in this-

healthunlocked.com/pmrgcauk...

Hope trip goes well.

[GreatGranny4 in reply to DorsetLady]

Thank you for the link, it’s very useful. I think I’m quite lucky with my rheumatologist as she told me to taper 1mg every eight weeks as I was referred to her because I was having problems dropping below 10mg, I’m now on 6mg but will stay on that until we are back at the end of February.

Thanks again for your advice.

[byebyebicycle]

Hi there, if it's any comfort both my calves are giving me problems and I've had this since I was diagnosed Dec 2023. It's not pain but a deep ache. This usually happens in the morning but if I walk too long it can last all day. It stops when I'm resting and can leave an almost comforting warm feeling. It does not stop me walking. To my Rheumy, I only met him once, it was not out of the ordinary.

[GreatGranny4 in reply to byebyebicycle]

Thank you byebyebicycle it’s very difficult to say exactly what the pain is like. If I stand doing something then the pain I get is in both calves and goes to my feet, it does relieve it if I’m sitting down but then I have problems getting up and going again.

[PMRpro Ambassador in reply to GreatGranny4]

You have told the doctor about it?

[GreatGranny4 in reply to PMRpro]

My doctor wasn’t in the surgery today so I’m speaking to him tomorrow. They are very good at call backs.

[Timelost]

When I was diagnosed it was mainly because because of the pain in my calves. I found it very painful getting up after sitting down and bending my legs. I’m now on 4.5 mg and reducing very slowly.

[GreatGranny4 in reply to Timelost]

When I was first diagnosed I had pain in my arms, shoulders, hips and thighs. I have to really brace myself when I stand up as I know it’s going to hurt then wait before I try to move. I reduce 1mg every 8 weeks and I’m now on 6mg but it’s taken 18 months to get there!

[DorsetLady PMRGCAuk volunteer in reply to GreatGranny4]

That’s not overly long in the great scheme of thing -trouble many doctors and most of the info online still believe it only last 2 years. For some it does, but certainly for not for all.

[GreatGranny4 in reply to DorsetLady]

When I was first diagnosed my GP said that hopefully I would eventually come off the pred but some people had to stay on a low dose so whatever will be will be and as long as I can be pain free then I’ll do whatever it takes.

I do appreciate you all and the advice you give, thank you.

[DorsetLady PMRGCAuk volunteer in reply to GreatGranny4]

If, like the majority of people, you will come off it - but as it’s a self limiting disease it has its own timeframe.

As you say to be pain free is of paramount importance - and sounds as if your GP is sensible…

Enjoy your trip… I have a longer trip back to UK next month (in NZ at present)..

[GreatGranny4 in reply to DorsetLady]

Wow that is a long journey! We have a daughter in Australia and that takes us 24 hrs door to door.

I just take each day as it comes and know we’re lucky with our GP and surgery.

Enjoy the rest of your stay and thank you for your advice.

[PMRpro Ambassador in reply to GreatGranny4]

The average time from 15 to 5mg is about 18 months - you aren't too bad in the overall stakes, At least you appear to have a sensible GP.

[GreatGranny4]

That’s good to know,, thank you. We are lucky with our GP and since Covid and hearing other people’s stories I realise just how lucky we are.

I’m now waiting for a call back.