New and still learning how to deal with PMR

[Songbird6]

Hi, I was diagnosed just over a year ago with PMR. Just recently I have had two bad flares and in-between these I tested positive for Covid. The first recent flare was end of March, almost coinciding with my year anniversary of being diagnosed with PMR and suspected GCA due to symptoms I experienced, so I was advised to up Prednisolone to 40 mg and advised to gradually decrease dose each week, which I did till last Sunday, so was ready to go to 15mg, which I did, I did a little gardening that day and had driven 60 miles the previous day for an outing with my Daughter and Granddaughters, whether it was all of that that caused the flare I don't know but I have been in extreme discomfort/ awful lower back/pelvic girdle and leg pain ever since. I immediately upped my Prednisolone dose to 20 mg. I have been taking Co-codamol the last two days but I can't say it has really helped, I seem to have gained so much weight around my middle/tummy area and definitely a moon face, very noticeable! My GP is still away until 6th June and I need to make a face to face appointment, somehow, with him or another GP, as I have now noticed a slight swelling at the base of my neck/necklace area. I am still taking 20 mg of Prednisolone, should I up or down it? is this PMR or what? I have been going into work all week, with great difficulty, I just don't know what to think about it all.....

[DorsetLady PMRGCAuk volunteer]

Two flares ,Covid and doing too much - driving, working, gardening - no wonder you’re in a bit of a mess!

Co-codamol not helping really proves it’s yet another flare…..so I would be inclined to go up to 25mg - and try and get things under control…..and rest as much as you can.

Is the swelling front or back of neck area? Or all around? Could just be the effect of higher doses of Pred, along with the moon face etc…. all should recede as you get lower on the medication. If you cut down on carbs that will help.

Does your surgery have the eConsult facility or email contact where you can explain situation and get some reply in your GP’s absence.

[Songbird6 in reply to DorsetLady]

Thanks for your help. The swelling is at the front of my neck, not painfull. I 've started to cut the carbs and trying to introduce a Mediterranean diet, not eat white bread etc and exercise by walking 20/30 mins per day ( I have my two dogs, so commitment) I think I will try to up as suggested to 25mg and trial. My surgery does have eConsult facility, I will give that a go! Thank You.😊

[DorsetLady PMRGCAuk volunteer in reply to Songbird6]

Walking the dogs is obviously a necessity -snd probably doing you good, but perhaps you can factor in a bit more rest time with your other activities-not always easy I appreciate.

Keep monitoring your neck, mine certainly increased initially with Pred, but went back to normal as I got into lower doses..

[cycli]

Totally understand Songbird6. I have been through this. The stomach, face and swelling around the neck are down to Prednisolone. Hopefully reduce when your dose is reduced or gone. Others can advise. I'm stuck with it so welcome to a side effect. It sounds to me that if you also have GCA your reduction was too fast. I cannot get below 22.5mg without flaring. I'm back at 30 trying to stabilise before trying again. 10 months in and learning all the time. You will have less energy than a year or so ago and less muscle. I suspect the muscle turns to fat as the pred. also wastes the muscle as another side effect, so you will be less able physically and stamina wise whether you like it or not. It'snot allbad but just debilitating. bearwith it and look to the better days. You probably need more pred to suppress the flare. you need to talk to your gP and Rheumy. Others will advise if I am wrong. Good luck.

[Songbird6 in reply to cycli]

Thank you for your reply.

[PMRpro Ambassador]

I need this on repeat

And I know I bang on about it all the time - but I'm pretty sure it is a major component of difficult PMR!

What you describe sounds more like something called greater trochanteric pain syndrome, used to be called trochanteric bursitis possibly combined with piriformis syndrome.

yourphysio.org.uk/condition....

Careful with the clam exercise - it IS good but not if it causes pain - if it does, wait a bit before trying it again.

healthline.com/health/lower...

also has good stretches but not sure I'd recommend the first straight off - I can't kneel anyway.

Try a dose of 800mg ibuprofen (with food, take omeprazole or famotidine if you need it for more than a day or two) and sit with heat over the sore area of the lower back. Once you can get the muscles in the buttock and hip to relax and stretch a bit the pain should improvel But I doubt the extra pred is helping so not worth it.

[Songbird6 in reply to PMRpro]

Thanks for the links, I will read up.

[PMR2011]

Oh my, your list of activities which includes working is way too long for someone with a serious autoimmune disease that will likely last 3-5 years. I worked full time throughout my illness (PMR and GCA) however on days I worked that is ALL I did. My husband was chief cook and housekeeper. Asleep by 8pm most nights. I would also say that decreasing the dose weekly (even with a flare) does not allow enough time to determine if the dose is working or for your body to adjust. Is there any way you can slow that down?

[Songbird6 in reply to PMR2011]

Thanks for your message. I am working 24 hours per week in childcare, spread over 4 days and my contract ends on August 31st, so I think I will take stock of how many hours in a new job, come September. Lots to reconsider 😔

[PMR2011 in reply to Songbird6]

Yes, and a good time to accept any help offered by family and friends. Tho they don’t always understand because we “look so well”.

[Songbird6 in reply to PMR2011]

🤣

[Denbo51]

Hi don't take co codamol try paracetamol at night don't up mg try as I have been doing taking turmeric capsules 1 . morning and 1at night with your pred it works for me hope it works for you

[Songbird6 in reply to Denbo51]

Hi, I've taken Paracetamol on it's own before going on to Co-codamol, not a lot of difference to tell really! Interested about Tumeric though, a friend also suggested this too, is there a particular brand etc to try? Thanks.

[PMRpro Ambassador in reply to Songbird6]

Even using turmeric in cooking can help. Some people find the supplements upset their stomach and if you are on certain drugs it isn't advised, especially anticoagulants.