Have I gone too low with pred

[iveco]

Hi all, have not posted much really but have been reading most day's.

Anyway 11 weeks back I was told by rheumatologist after almost a day of tests that I have PMR so she started me on 40mg Prednisolone for 4 weeks , then to 30mg for 3 weeks then 20mg for 2 week , and then 17.5mg two weeks and now on 15mg.

I have been doing well with the reduction until I got to the 15mg , been on 15mg for 5 days now but slowly started with pain and stiffness in lower back hips and lower legs , also my arms and wrists . I also have no energy which is like" knock out " fatigue when sometimes I need to have a bit of a sleep.

So my question is should I ride this out for a few more days or should I go back up to 17.5 which I were not so bad with

Oh, the rheumatologist said my ESR was just above normal and CRP was normal ?.

Many thanks.

[fmkkm]

In my opinion, the inflammation is returning you went too low. Maybe back to 17.5 for a while until things settle down.

Best to you-fm

[PMRpro Ambassador]

I would go back to 17.5mg and slow down a bit.

If it is PMR then why on earth use 40mg to start? That is a GCA dose and far more than is needed for most PMR. It works so much better to start with a lower dose and slow down - a week at 40mg is the same as 2 weeks at 20mg - which will probably achieve far more and reduce the side effects.

What the ESR and CRP levels are is immaterial - about 20% of patients never have levels that are "out of the normal range" but that doesn't mean they don't have PMR.

[HeronNS]

As you've been on a relatively high dose your inflammation markers would be expected to be normal now. Go back to 17.5 as the others suggested, and then use a slow taper rather than dropping 2.5 mg overnight when you are ready to taper again. Good luck!

[iveco]

Thanks for the advice ,

PMRpro, she started me on 40mg as she said I was showing some signs of GCA . I did have T.A.B. about a month ago but have not been told the results as of yet but have app with rheumatologist in a couple weeks.

Will go back to 17.5 in the morning and see how that does.

Many thanks.

[SnazzyD in reply to iveco]

If he thought you had GCA then the reduction plan was a bit nifty too. Have you had any return of GCA symptoms?

[iveco in reply to SnazzyD]

No return really but I do get watering eyes which sting a lot when at work , oh and loads of cramp in legs and feet

[HeronNS in reply to iveco]

Try taking some magnesium, or maybe soaking in an Epsom salts bath (a foot bath will do if you're a shower person) as the skin will absorb the magnesium quite readily. Magnesium often helps ease cramps as they can be a sign of a magnesium deficiency, not uncommon when we take calcium supplements but don't also make sure we are getting a bit more magnesium one way or another (diet best - eat your leafy greens!).

[SnazzyD in reply to SnazzyD]

Ditto the magnesium. I found when I was on higher doses of Pred my tear film dried up though they would water; it just didn’t cover the surface of my eye all the time. Sometimes it felt like someone was sticking pins in my eyes. I had to have false tear eye drops and thicker ones at night. Since being somewhere in single digit doses it has resolved.

[iveco]

Thanks , will look into the magnesium as I do eat quite a lot of leafy greens already and will try anything else to get shut of these cramps.

SnazzyD :

"felt like someone was sticking pins in my eyes"

Yes, it dose feel like that . Found that it eases off when not at work ( HGV Driver ) also will be seeing opticion as it seems looking to the horizon in bright light makes this much worse even though my glasses go quite dark in sunlight.

Once again , many thanks for your help.

[PMRpro Ambassador in reply to iveco]

Haha - I did wonder about your nom de plume!!!

Sounds very dry eyes like to me - I also had photophobia at one point but it did improve over time with pred. And ditto magnesium - always useful I have discovered.

[iveco]

PMRpro

What is nom de plume ? sounds French but I don't speak French lol

Small update.

Tried to get out of bed this morning but found it a little bit hard to do so, so after some Yakult and some breakfast I went up to 17.5mg pred. Felt stiff until around dinner time then the back / leg and neck stiffness eased quite a lot so will stick with this for now .

[HeronNS in reply to iveco]

Your alias, pseudonym, your avatar name, I think originally a name assumed by someone who didn't want to use their real name when publishing a novel, etc. "Pen name".

[PMRpro Ambassador in reply to iveco]

As Heron says - your user name! Iveco is our local Fiat garage that does the HGVs and stuff as opposed to cars. We have a campervan so a car garage is useless to us! I live in Italy though.

[iveco in reply to PMRpro]

Lovely place Italy done many visits over the years, really nice people.

[jensen0518]

I had the same feeling going from 10mg to 7.5 mg after 5 days the stiffness in my arms continue to get worse the doctor said go back to 10 mg. I would go back and then may want to taper to 16 mg after 2 weeks

[Soraya_PMR]

As you’re a truck driver, you’ll probably be spending a lot of time in your cab. If you have the air con on, try draping a wet flannel over the outlet to moisten the air. Might help your dry eyes a bit.

[iveco]

Yeah I have been a truck driver both UK and European for about 41 / 42 years now and yes I drive a Iveco truck haha, but only in UK now.

The dry stinging eye's don't bother me when I am at rest only when I am doing things like work at work or work at home, yeah I know , I am a odd one. I will however have a go with the wet flannel over the outlet see if it helps, many thanks for the tip.