Deterioration

[Pangolin43]

Good morning.

I tapered down to zero on rheumatology advice after being ok on one milligram of pred every other day she said I should just stop pred altogether. I lasted 8 days. Severe leg, bi lateral hips, grain and arm/wrist pains. I’ve had a swollen right calf which I thought may be a clot. I took myself off to A@E was given a D Dimer text which came back at 5.6 which is high. I had an immediate ultra sound Doppler on my leg which showed no clot. I have wondered if the swelling could be due to a ruptured Bakers Cyst? I’m having a CT scan today on my hips, stomach, abdomen and pelvic area to look at other possibilities for all of this (cancer). I’m a mess and really wish I had not reduced to zero pred. Last week I was going to the gym and riding my bike. I’ve upped my pred to 3.5 but may do 5mg today. I have shooting pains in my groin area which makes it painful to walk. My arms and wrist feel sore. It’s hard to bend my and straighten my right. I’m also flying to Bilbao on Thursday.

Any thoughts. It’s a lot I know. 😳

[piglette]

Basically we know our bodies better than a lot of doctors. It is so sad, if you had carried on happily slowly with your dose every other day and slowly reducing you would probably have been OK. I suppose your doctor does not have PMR!! I think you are right, take 5mg for a few days to really knock any PMR on the head and hopefully you will be tickety boo for your trip to Bilbao.

[Temeraire]

Oh dear. Thats rotten. To be honest think I’d take 10mg for a couple of days at least then drop to 5. But I guess you’ll need to run it by the doctors since you’re being investigated. Hope you feel a lot better for your trip!

[Pangolin43 in reply to Temeraire]

Thank you. In all honesty I probably will take 5mg for a few days to clear out the accumulation of inflammation. My CRP level has shot up to 40 from 2 in September and ESR 28 from 7

[Gala123]

Sorry to hear about your setback. What a disappointment and worry. To share experience, before I started treatment I had a baker‘s cyst that was also investigated to rule out a blood clot. D-dimer was also high and no clot on Doppler US. I then developed a baker‘s cyst on the other leg. Both went away after I started PMR treatment.

[Pangolin43 in reply to Gala123]

Thank you for sharing this. It’s really helpful. 🙂

[DorsetLady PMRGCAuk volunteer]

Might be sensible to go to 5mg.. but medics need to know that… and just make sure you get all the help you need on flights and holiday… if you can still go that is.. 😊

[Pangolin43 in reply to DorsetLady]

Thank you. I was wondering about airport assistance. As I haven’t been diagnosed with a blood clot, I’m still planning to go. I hope I’m doing the right thing. I’ll let my insurance know .

[Pangolin43 in reply to DorsetLady]

The rheumatology protocol is to add one milligram to your dose to see if that helps. Then, another milligram if it doesn’t. In some ways I think it’s better to take a week of the 5 and then drop back. My GP has given me 1 week of 5mg in case I need to go up. I’ve also been given a rheumatology date for when I get back. They are keeping a close eye on me which is good.

[DorsetLady PMRGCAuk volunteer in reply to Pangolin43]

1mg might work in some cases… but we usually find that going up slowly doesn’t work as well as adding 5mg at the outset..

..and go for airports assistance, it makes life a lot easier in many different ways, it’s not just the wheelchair - it’s getting through passport control a lot quicker and cabin crew being aware,

Enjoy..

[PMRpro Ambassador]

Oh rats - what a blow!!! Mind you - I wouldn't change anything that was working OK shortly before a planned holiday, it is tempting fate!!! I would also treat it as a flare in our usual way.

Raised d-dimer is also common in autoimmune disorders.

[Pangolin43 in reply to PMRpro]

Thank you

[Pangolin43 in reply to PMRpro]

I think I was desperate to have a break from Prednisolone and felt so well. Silly me. I’ve paid the price. I’ll see what my CT scan shows up!