What do I do Now?

[Linny3]

I have had pmr for over 4 years and 15mg is the dose I take most often. I do not get total pain relief but can handle what I have. Right before Christmas I started getting really stiff hips and thighs and all the pain that goes with it. The pain also moved into the groin. This all made walking really hard. I started taking 16 mg for a few days with no relief then went to 17 still no relief. Finally on Christmas eve I decided to take 20 mg and that really helped a lot. The sunday after Christmas I went back to 15 mg. It all came back and New Years eve took another 20 mg and have been taking that for 4 days. My question is what do I do now? Do I stay on 20mg , If so for how long? I really hate going to 20mg but I hate the pain more.

Any opinions would be helpful.

Happy New year to everyone

[SheffieldJane]

Hello Linny, 15 mgs is a lot to be on for 4 years. Are you managing this alone or is a doctor supervising it all. Do you have a Rheumatologist? If not, you need a really good one to sort this out. It may even be a wrong diagnosis. Or like me your PMR has developed into GCA and or Large Cell Vasculitis. I know the groin pain you describe - it’s awful - you can’t get in and out of the bath or a car, let alone walk. It does sound like PMR. I bet you feel like starting again at 20 mgs - you could have been under treated all this time. Instinctively I would want a month on 20 mgs then a really slow taper like 0.5mgs at a time and only drop if you are comfortable. You must be supervised by a good Rheumatologist. This needs sorting out by a qualified consultant. Let us know what happens.

I looked back at your posts. I see you gave up on Actemra. Can I ask what side effects became intolerable? I’ve been on it for 5 months and it enabled me to get from 40 mg Pred to 10 mg quickly and without problems, for GCA/LVV. Stuck at 10 mgs though.

[PMRpro Ambassador]

This is really strange!! I'm on 15mg at present because I've been in a permanent flare all this year - but for the last couple of weeks I've also had discomfort deep in the groin, I can't dignify it as pain though it is definitely PMR hip problems! I keep wondering if 20mg would be better but I am very disinclined to go up and most of the time it is fine - definitely related to activities.

Also interested to hear your answers to SJ's questions.

[Linny3 in reply to PMRpro]

Thank you for the responses I do have a really good rheumatologist. She has tried 4 different dmards but I reacted badly to them all. I was able to stay on methotrexate the longest, until I just couldn't take the side effects any longer. Actemera created a really bad headache, I started sweating very badly, my hands and feet were in constant pain. I ached all over, a lot like a fibro flare. I used it for 2 months and couldn't do it any longer. My last dmard was Orencia and the same thing started happening after 3 shots. However, with that one I got really bad stomach pain, the worse I have ever experienced. I have been off of that for about 2 months and am considering trying it again, if I can get this latest flare under control. When I have tried to decrease the pred dose, I have used the slow method decreasing by

1/2mg , but always get into trouble on about the third day. All the pain comes back.

I think I read on here that going up and down with the mg. isn't a good idea?

I am at a loss as to where to go from here. I pretty much am to the point of throwing up my hands and just take the 15mg and forget about it and deal with whatever happens when it happens. Those side effects, though not pleasant, are manageable.

Thanks for reading

[PMRpro Ambassador in reply to Linny3]

That's what I do - I tried mtx - horrible! Next might be leflunomide but I'm not keen. As t is, I have no identifiable problems with pred so why should I risk feeling worse with something else? So I take what I need at the time.

What problems do you have with pred?

[Linny3 in reply to PMRpro]

swelling all over especially feet and legs and face. I have had to buy numerous pairs of different size shoes to be assured i will have a pair that fits at any given time. rosacea and other thin skin problems and excess facial hair growth. I have had a pred headache off and on for 4 years. Have had 2 foot fractures and one spine fracture since being on pred. Can you just imagine how awful the side effects are from the dmards if I put up with all of that while on pred. All of my vitals are fine so far. Even bone scan came back as osteopena not osteoporosis. Actually my scan showed a little improvement.

I tried the leflunomide early on and couldn't take it.

I have asked the dr. numerous times if she was sure pmr is the correct diagnosis and she says yes.

Good Luck

[PMRpro Ambassador in reply to Linny3]

Have you tried cutting processed carbs? Both simple carbs and salt encourage fluid retention. I can't eat out for more than a couple of days without blowing up like a balloon - especially feet and ankles.

[Linny3 in reply to PMRpro]

That is a problem for me as we eat out at least 2-3 times a week and a lot of the food I cook is frozen so lots of sodium. However, lately I have been trying really hard to keep the salt and carbs low, that is until the holidays and all that went out the window. Now I am back on track and I know it will help . Unfortunately all the dmards make me swell even worse..

[Constance13 in reply to Linny3]

"eat out at least 2-3 times a week" - not in lockdown then? We haven't been able to eat out for six weeks or more.

Wouldn't want to anyway - too much food - too many calories and too much salt and sugar.

[Linny3 in reply to Constance13]

We aren't in lockdown. There are restrictions at the restaurant. It is about the only thing we do for fun now.

[PMRpro Ambassador in reply to Linny3]

There wasn't lockdown in the UK in August - the government even had an "eat out to help out" action to "help" the restaurant economy get back on its feet. The only thing it achieved was a 17% increase in spread of Covid cases which is what got us where we are now. Nothing would induce me to sit inside with people where I don't know if they have Covid or not. It's bad enough having to mix in shops and go to the hospital when you know well over 50% of people with Covid have no symptoms at all and a lot of the ones who DO have symptoms still go out to put others at risk.My front door is the best protection I can have from others ...