Grateful for support

[Heinrich7]

Morning! Recap: on prednisone a year. Thought I was better. Off for 2 weeks after weaning slowly. Some symptoms returned so back on 2mg. More symptoms returned - stiff and sore in neck shoulders back. And now on 4. Feel like I’m my own doctor. Can’t keep running back for advice. She’s not back anyway til end of September. Will see my GP and let her know what’s going on. Amidst this I have depression which I abhor. Am taking a herbal tincture and CBD for this but does not seem to help. Do yoga. Guess I just need more fun in my life. I also have my faith which upholds me.

[Hidden]

Hi Heinrich, l’m sorry to hear you are feeling low & that the PMR symptoms have returned.

As a word of caution, do you know what is in the herbal tincture as it may cause interactions with the Pred that could cause you issues.

I do hope you start to improve soon.

Kind Regards

MrsN

[Heinrich7 in reply to Hidden]

Bacopa. Holy Basil. Passion Flower. Mucuna. Rehmannia. Reisi. Mushroom.

Last tincture had St. John’s wort. Herbalist made a new one with the above without St J’s Wort because it could interact. She’s licensed and pays to have access to pharmaceutical site. For drug interactions.

[HeronNS]

Just looked at your profile. Do tell us a little bit about the memoir you have written. Is it published?

[Heinrich7 in reply to HeronNS]

Is that allowed ? Maybe off topic. Want to abide by rules. Otherwise love to tell you. Called CADJO: Memories Last Forever. Available world-wide.

Maybe the stress of it contributed to PMR.

[HeronNS in reply to Heinrich7]

Thanks, I'll look it up.

[powerwalk]

Did you always have the depression going on or is it a new thing? The fatigue associated with all this can leave you feeling very low. Does the 4mg control the pain/stiffness for you. It's great if it does. It's disappointing to have symptoms return but you would have been very very lucky to be only on the Pred for a year. My rheumy took me off it after about 15 months and it was a disaster. I get my Pred how from the GP. I'm on it 3 years. You are not alone, I know it's disappointing. Hope you start to feel better in yourself and your mood lifts. It's half the battle. Let us know how you are getting on. And lovely Canada. My two grown up children living there!!

[Heinrich7 in reply to powerwalk]

Yes always have had depression going on. But am facing a public event coming up 24th of this month and is creating anxiety. So we’ll see once that is over with how I feel. Will see how the 4mg Prednisone goes this week for possible returning PMR symptoms. Just hope it is not this that is causing the crazy mood swings. My hubby wants me to go back on antidepressants but I would rather not. How do you know when to taper and go off. Is is a trial and error thing?

[PMRpro Ambassador in reply to Heinrich7]

It is really - you taper in tiny steps at this stage and stop at each dose to be sure it is still enough to manage the PMR symptoms and avoid adrenal insufficiency symptoms too. And that continues all the way to zero. It doesn't go faster at low doses, if anything, slower is better.

Even 1mg can be enough to prevent the PMR surfacing again - if there is any disease activity the inflammation can build up with not enough pred to neutralise it.

[Heinrich7 in reply to PMRpro]

I was on 1mg for a month before going off before. Guess I will go really really slow next time and not be in a rush. Thx for reply.

[PMRpro Ambassador in reply to Heinrich7]

If I ever get to 1mg I shall stay on it for life!!!!

[powerwalk in reply to Heinrich7]

As PMR Pro says, it really is unfortinately trial and error. Get to what makes you feel decent and stay there til things settle. We need to not be thinking of zero. Its hard buf its the only way. And im preaching to myself!! Hope you feel better, maybe see how you go before rushing in withe the antidepressants, though dont let things get out of hand in that respect if you think nothing is changing with your mood, maybe speak to your doctor.

[Heinrich7 in reply to powerwalk]

Good advice! Thank you. Heeding it!

[yogabonnie]

Hi. Hope you are feeling better. I think you got off prednisone too early.. and now have to back up a bit and take it slower (your yoga training should help with that!! haha) Love that you are a writer too will look it up! Try my yoga link to my relaxation .. it is.. sites.google.com/a/apps.hop... Good luck . hope this finds you feeling better!!! And since we are both writers and yoga people... join me in becoming a TERRIBLE beginning tap dancer!! taking great FUN class. laugh all the time. truly terrible. only wish I had a silly big shirley temple costume to wear when I go to class.

[Heinrich7]

Yes I wish I could join you in the tap dancing lessons! Sounds like you have a great fun attitude towards life and it’s challenges! My daughter has lupus fibromyalgia possibly colitis and an enlarged liver with inflamed bile ducts (primary sclerosing cholangitis - PSC). I feel for my girl who has so much more on her plate that I do having only PMR. I want to get through my stuff and learn to have an upbeat attitude so I can be there for her. Will also look up your book and the yoga!

Thx for a bright cheery attitude poured out on this sleepy-headed, emotional, oftentimes teary-eyed 67 year old from MB Canada who so far at 6:15 am has only slept maybe 3 1/2 hrs. I think it’s my Book Launch coming up on 24th where I will address my guests with a speech. EEEK!

[3daysinjuly in reply to Heinrich7]

Congratulations on your literary success. Prayers for your daughter and for you and for us all.

[Heinrich7 in reply to 3daysinjuly]

Yes! Thank you! Today is anew day. One day at a time. Blessings to you!

[OutdoorsyGal]

Is there any possibility that your pains two weeks after ending prednisone were from prednisone withdrawal instead of PMR?

I have heard it can take several months for things to settle out after prednisone. It has for me. I’m now 6 months post-pred, and my stiffness is easing and I’m regaining strength. Feeling better bit by bit. But at about 3 weeks post-pred I was almost ready to throw in the towel and go back on prednisone. Glad I didn’t.

[Heinrich7]

I am happy for you. I was 2 weeks off and couldn’t stand symptoms returning. Now on 4mg and sitting in ER at advice of RN call in centre. Have pain and stiffness in between shoulder blades that hasn’t eased up today. Hope they figure it out. Blood pressure was up to moderate today. Just don’t know what would’ve happened if I’d still be off prednisone. I pray you made correct decision and that you are okay.