Moving up temporarily in dosage

[Navion]

My rheumatologist started me at 5 mg. 10 days ago. It helped a lot except for the stiffness in my neck and the pain between my shoulder blades. I went up to 7.5 two days ago. It led to slightly more improvement. Shoulders, collarbones, hips, buttocks, thighs and knee are probably 90% better. Neck and between the shoulder blades still not improving much. My doctor said I could move up to 10 mg. if I needed to, but no more until I see her in 3 weeks. I went to 10 today. If I don't see any further improvement with 10, can I just drop back down to 7.5 in 3 days? If it's not helping to move up, I'd rather be at 7.5.

[Hidden]

Hi navion please stay at ten for a week or two at least. You need to give it time to work sometimes. You dont get a (very good) 90% improvement in ALL symptoms immediately. My neck was my 4 hour "miracle" but my arms and legs took a few weeks at 15mg. You need to get the inflammation totally under control. You shouldnt just up and down willy nilly. You have to be more systematic and "clean out" the stuff thats causing the pain with the pred. Its not like taking a pill for a headache. Please be patient and remember you have an illness that can be very damaging if inflammation left to be festering. Its an auto immune condition that you will be learning to live with for a couple of years, probably more.🌻

au.reachout.com/articles/li...

Me -3yrs in. Pred 6mg.

[Navion in reply to Hidden]

Thanks. I'm sticking with the 10 for now.

[-LJ-]

Just doesn’t seem like enough. Based on everyone here, it seems almost everyone with PMR starts at 15. I started there and went to 20 in a few weeks as 15 didn’t get rid of all the pain and stiffness. My rheumi says you must put out the wildfire first, then manage it.

Myself...pmr 2 years. Prednisone 0 since November

[Constance13 in reply to -LJ-]

Can't believe your doctor started you on 5mg pred, most are started on 15 to 20 mg (I personally was started on 30mg, unusual, but I have a particularly aggressive for of pmr). I am in my seventh year of this pesky journey!!

Do you live in America?

[nickm001]

Your doctor is doing in a wrong way. Recommended starting dose for PMR is 15-25mg. The reason for higher starting dose is to clear the accumulated inflammation. Until you do that, you will not feel any significant improvement. So the best thing to do is to go to as high dose as your doctor let you ( in your case 10mg, although it is rarely sufficient) and STAY at that dose for at least until you see him/her again. Usual practice is to stay at starting dose (15-25mg) for 4-6 weeks and then try to reduce and find lower dose that gives you the same relief as starting dose.

To answer your question, yes you can reduce back to 7.5 as long as you do it within 1 week, but honestly, I have seen on this and other PMR site that people who arbitrary change their dose up and down have a very hard time reducing later- so if I were you, I would go to 10 and stay until you see your doctor.

[Navion in reply to nickm001]

Thanks. I'll stick with 10 for now and discuss with my doctor when I go.

[Hidden]

Navion...this us a section if the guidelines -

We recommend initiation of low-dose steroid therapy with gradually tailored tapering in straightforward PMR (B).

In the absence of GCA, urgent steroid therapy is not indicated before the clinical evaluation is complete.

The suggested regimen is:

However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

Daily prednisolone 15 mg for 3 weeks

Then 12.5 mg for 3 weeks

Then 10 mg for 4–6 weeks

Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5 mg alternate days, etc.)

...............

Usually 1–2 years of treatment is needed [5]. The need for ongoing therapy after 2 years of treatment should prompt the consideration of an alternative diagnosis, and referral for specialist evaluation.

[Navion in reply to Hidden]

Thanks. Very helpful. I'll discuss with my doctor.

[Purplecrow]

Hi Navion, i found relief from chiropractic treatments to upper back. Between the heated gentle massage and light adjustment, it helped release the muscular tension. He was gentle with my shoulders, and generally treats me with "kid gloves", as my pain can be exacerbated by aggressive massage type therapies.

Kind regards, Jerri

PMR diagnosed 2013

[Navion in reply to Purplecrow]

Thanks. Yes, I had a regular massage early on before I knew what I had. It really aggravated my symptoms and flared me up in parts of my body where I didn't have pain before. But light heated massage and gentle adjustments might be worth a try.

[OutdoorsyGal]

It’s frustrating for an athlete to have their wings clipped by PMR. But “powering through” doesn’t really work, and prednisone usually does. My start dose was 15 mg for 3 weeks then 10 for a month, then dropping 1mg each month after that. I was able to keep skiing (both XC & downhill) throughout treatment, and as warmer weather returned resumed biking and hiking.

After the pred ended, I skied another season and now am back to biking and soon, hiking. I don’t push quite as hard as I used to, though. Yard work seems to be my nemesis, easy to overdo it, with payback of aches and stiffness a day or two later.

Had I not taken prednisone, I feel I would be living on my sofa, stiff and cranky, and depressed at aging 20 years overnight. As it is, my 18 month adventure with PMR seems to have aged me some, but I’m still largely functional. NSAIDs are working for me, for the most part. Pacing helps.

This PMR journey brings you to a fork in the road, you can choose pred or not, but you can’t turn around and go back where you were. That takes some adjusting to.