Settling in !

[aladymo]

After three weeks I am learning to live with PMR. I read the posts daily, and can’t thank you all enough for the knowledge, compassion and support. I had ESR of 79 and CRP of 136. I am on prednisone , have appt in 3 months ( unless I need sooner) to recheck protein level. I have a question ? Should other blood ( glucose , potassium .....) be checked as well?

[PMRpro Ambassador]

Three-monthly is probably fine - some things won't change much in the first few months and then if anything is off they should monitor it.

However, a baseline of Hba1c (blood sugar behaviour) would be good if it hasn't been done yet. And I would like to know the trend of the ESR/CRP after a month - after all, if it isn't falling maybe a bit more pred would help.

[aladymo in reply to PMRpro]

Ok. I’ll get in touch with him. Thank you

[HeronNS]

Glad you are settling a bit. One question - what dose of pred are you on, and have you been given any guidance re tapering? Three months gap between appointments at the beginning seems a bit long to me, although it's worked well for me since the first few months when the follow up appointments were fairly frequent.

Yes, your blood sugar needs to be monitored. If you have never had a baseline DXA scan now is the time to get one. And your inflammation markers need to be monitored regularly to make sure they are trending down as hoped. That's the bare minimum. in my case my iron is also checked quite regularly, via ferritin test, and there are other tests that other people may recommend you have at least once, just for a baseline, if you haven't already had them as part of the diagnostic work up determining PMR.

[aladymo in reply to HeronNS]

I am on 10 mg. If there was no improvement after 2-3 days my rheumatologist was going to up the dosage - there was improvement ! I am really learning to pace myself - ( after first terrible week). Hopefully the upcoming holiday won’t mess with me

[HeronNS in reply to aladymo]

So you're to stay at 10 mg for three months, assuming you feel well on it? That's a fairly low starting dose so it may take a bit longer to have full effect than a lower starting dose, but great if it works, and you've already noted an improvement.

[aladymo in reply to HeronNS]

I’ve noticed improvement for sure. Still sore of course , but 70% improvement is what I can hope for. One question though , My tongue is burning ? Is that a PMR symptom , or prednisone side effect ?

[HeronNS in reply to aladymo]

Not a side effect I've ever had, but I think others have. I also read recently someone had similar sensation and it was suggested they might have thrush which is apparently also fairly common with pred. Again, not something I've had so can't help there, but others will be along with their suggestions. Glad the pred is relieving your symptoms and I hope you see a continued improvement.

[aladymo in reply to HeronNS]

I’ll try old fashioned remedy and rinse with salt water, see if that helps. Thank you for your help.

[powerwalk in reply to aladymo]

oh I had that burning tongue when I started Pred. I was on a higher dose - it went after a while.

[daworm in reply to aladymo]

It's a side effect I had when first starting, and now while trying to taper I e noticed it again at times...burning tongue, ringing ears, the whole works!!

[piglette]

I tend to get vit D yearly. Then things like Full Blood Count, glucose, U&E, Iron, liver function, folates, possibly some others every so often. ESR and CRP three monthly unless there is a problem when I have them monthly. When first diagnosed I had them monthly for a while to ensure that the pred was working OK.

[Rugger]

Definitely agree with piglette to get vitamin D level checked. Hoping you are on a calcium and vitamin D supplement and will have your bone density assessed, as HeronNS says.

[aladymo in reply to Rugger]

On vitamin D. Bone density ok. Eat lots of calcium rich foods :). Thanks