Newby on the block!

[pntess]

I've recently been advised my GP to increase my Pred to 15mg daily. I no sooner get over pain in one area and its starts in another. It feels like I'm being attacked. Currently I have groin pain on my left side and am sure it's going to venture to my right side very soon. I have tried everything to see a consultant but to no avail. I was referred to Rheumatology in October 2019. My appointment was for March 2020 but due to Covid this was cancelled and to this day I am still waiting. I developed intense pain in my buttocks simultaneously whilst tapering my original course earlier in the year. I got to 10mg and was due to reduce to 7.5mg. GP told me to stay at 10am. I saw a physiotherapist privately who said my piriformis muscle was inflamed & causing pain on my sciatic nerve. I saw him three times. The pain eventually settled in my right buttock but then started in my left. I had a couple of days of feeling me again when suddenly the pain started in my groin on the left side. My GP wrote to the Rheumatologist and asked him to expedite me to an urgent referral. He agreed to do this but the earliest he can see me is Jan 2023 I have also attended A&E last week and they didn't want to know so we left. I was unable to put any weight on my left leg. A GP I had never spoken to before, a trainee, contacted me the following day to say he had been notified of my recent visit to A&E. He said he had read my notes & wanted to help me. He appeared to really understand what I am going through. I am now back on 15mg steroids and taking co-codamol prn. This is usually 6-8 Tabs a day as I still have the pain & at times really struggle to walk. I'm extremely low and if my family ask how I am I just burst into tears, I just can't help it so very low & tired. Any advice would be most welcome as I'm feeling pretty desperate. I've gone from being a very fit & active 64 yr old to someone I don't even recognise. I'm beginning to think I need to go privately as I'm getting nowhere.

[PMRpro Ambassador]

Can you see the trainee again? 15mg is the low end of the recommended starting dose for PMR if that is what they are diagnosing, Ask him to read this:

rheumatology.org/Portals/0/...

and ask him to consider ahigher starting dose.

Ordinary painkillers rarely do anything for PMR and its associated problems - piriformis included - I need high dose NSAID infusions for a week from my rheumy to do anything noticeable, cocodamol does nothing. Even 5mg more pred a the starting dose can make a massive difference in getting the management going - you won't be on it forever, if you are lucky just a month or two at the most.

If you are considering going privately, where in the UK are you and how far would you consider travelling to see a REALLY good rheumy?

[pntess in reply to PMRpro]

Thank you so much for replying and offering advice! I would travel any distance to see someone. I live in Alfreton in Derbyshire.

[PMRpro Ambassador in reply to pntess]

Sorry - I forgot to say hi and welcome. jinasc has a little list - she may have a suggestion for you. Put up a new post asking for private recommendations so everyone sees it.

If it were me I'd go to Rod Hughes in Chertsey but that is maybe a bit of a hike.

drrahughesrheumatologyltd.com/

[pntess in reply to PMRpro]

Me too! Nice to speak to you.

[Viveka in reply to pntess]

You generally only have to see Rod once in person. After that consultation is done over the phone.

[jinasc in reply to PMRpro]

I did send a PM about half an hour ago. But as the day has been 32c , I am going to water the garden now...................... and then just collapse in a heap...............xxx

[123-go]

Hi and welcome. You certainly deserve better attention than you've received so far! Piriformis and buttock pain have been mentioned here from time to time and someone will hopefully see your post and tell you of their own experience and perhaps offer advice so keep looking.

I wholeheartedly agree with PMRpro that a private appointment would be worth the expense and some travelling if you can manage that.

Yes, the trainee may well be worth seeing if you are able to contact him.

First appointments with a rheumatologist appear to have been difficult to obtain during the pandemic but in my opinion your GP should be working a bit harder on your behalf to achieve that. I hope you get some satisfaction very soon. Please let us know how you get on. It's so miserable when daily life is badly affected and it's no wonder that your emotions are all over the place; I can identify with that.

It WILL get better.

[pntess in reply to 123-go]

Thank you so much for checking in with me I really appreciate it. It's so nice to know I'm not alone even though it's felt that way for a long time. I'm generally a very positive person and just need someone to work with me to get me back to my old self! A plan of care is all I'm asking for! I feel so lucky to have come across this support.......... thank you again.

[123-go in reply to pntess]

You'll never be alone with this community to support you and we're glad you found us. 😄

[kmeikle1]

Just a thought. I've had PMR since 2019 with all the classic symptoms. My more recent groin pain turned out to be bone on bone hips which will be replaced once I can get an appointment with surgery.