Not sure if I’m connecting!

[Heinrich7]

Have PMR. Weaned off Prednisone.

[SnazzyD]

Do you mean with the forum?

[Heinrich7 in reply to SnazzyD]

No. My first time on this site.

[Hidden in reply to Heinrich7]

How long have you been diagnosed with PMR? If you could tell us a little bit about yourself it makes it easier for us to understand your needs. Welcome to the forum🌻

[DorsetLady PMRGCAuk volunteer]

You are connected to forum.

If you still have PMR why have you weaned off Pred?

[Heinrich7 in reply to DorsetLady]

On 9 months. Helped my pain. I seem to be a lot better physically, not perfect. Weaned slowly off at advice Rheumi.

Now b12 on low side.

[HeronNS in reply to Heinrich7]

How are your symptoms? Have all the aches and pains and stiffness gone?

[Heinrich7 in reply to HeronNS]

No pain but stiffness. And numb feet. Having mri done. Low b12. Also have osteoarthritis in feet and hands.

Thx for asking.

[Hidden in reply to Heinrich7]

That’s great! I also seem to do better with less prednisone. I take 10 mg one day and 15 the next. I feel much better on the days I take 10. I am like you in that I had to have the Pred to get around for awhile, but now I feel better on lower doses and plan to continue the ween in accordance with my doctor.

[Heinrich7 in reply to Hidden]

I am off prednisone altogether and managing ok. My daughter has lupus, fibromyalgia and enlarged liver and is on 15mg prednisone.

[Hidden in reply to Heinrich7]

As long as you feel ok that's great. But it's very a very, vety fast taper so if you get any smptoms showing themselves then you may need to re-introduce pred. I had numb and sore feet prior to diagnosis due to PMR. PMR is know to have an active life of 5yrs and a fast taper is more likely to relapse. I hope not so for you. I hope you and your daughter improve🌻

[Heinrich7 in reply to Hidden]

Thx for info. I pray it doesn’t return. I also take CBD. Maybe it helps.

My B12 is on low side so that could cause numbness too.

When were you diagnosed with PMR? And how much P are you on?

[Hidden in reply to Heinrich7]

I was dx in June 2016 after a year or so of symptoms. I am still on 6mg with a dmard. I full expect to be a good while yet before I am off pred having been at 6mg for as long as you were in pred in total.

Yes, indeed b12 deficency can cause numbness. 9 months is such a short dose of pred. It always concerns me as we know that PMR have an average active ife of 5 years. Keeping my fingers crossed that you are in remission.

[Heinrich7 in reply to Hidden]

What is dmard? Rheumatologist did blood work and no inflammation anymore. Guess I could have that checked again.

Last June pain was unbearable. Could hardly walk; couldn’t raise arms. Could only sleep on back. Endured til August, then prednisone did the trick.

Now Dealing with depression. Waiting for relief. Taking a herbal formula with lava, mucuna bean, Passion flower, rhodiola, st Johns wort. Two days in. Instead of antidepressant.

[Hidden in reply to Heinrich7]

It's an anti rheumatic drug. It's used with questionable success as a steroid sparer. The idea is that it allows your body to use the pred more effectively so you can reduce pred without flaring.

I am sorry you are feeling depressed. Sometimes life throws these horrid things at us and our family.its hard to.manage them. PMR can cause low mood so if further PMR symptoms pop up then certainly get them investigated. I hope you feel better soon. 🌻

[Heinrich7 in reply to Hidden]

Thx for chatting. All the best to you. Take things day by day. And we’ll hang in there!🙏🏻

[Noosat in reply to Heinrich7]

I was diagnosed with PMR last December. I have tapered myself to 2mg in early morning and 2.5mg at night. This week have had no actual pain, but very heavy legs and stiffness. Soon I plan to reduce prednisone again, probably to total 4mg, and see how that goes. In addition, I occasionally take 2 Tylenol, each day I take Turmeric, magnesium, and CBD

[Heinrich7 in reply to Noosat]

Turmeric. Good for inflammation. Was on that too. I don’t have pain. Maybe CBD helps. I take just under .5ml am and pm. I had heaviness in whole body. Gone now since off prednisone.

[Noosat in reply to Heinrich7]

Yes,this is my basic problem now. Heavy body with fatigue. I am so anxious to be off this drug. I have to tell my self to be patient, which is not part of my nature.

[GlynisE in reply to Heinrich7]

You may have pernicious anaemia. And need regular B12 injections.

[Heinrich7 in reply to GlynisE]

Is there a test for that?

[PMRpro Ambassador in reply to Heinrich7]

hoacny.com/patient-resource...

is a clear outline of how it is diagnosed. Your GP should have done the appropriate basic blood tests by now.

[Heinrich7 in reply to PMRpro]

Awesome. I looked at it.

[GlynisE in reply to Heinrich7]

Yes. It’s not the normal anaemia test. Ask your GP.