Update on grief over friend and pain when tapering

[Mstiles]

Hello everyone,

I can’t thank you enough for your wonderful encouraging responses to my post and all the practical advice.

I was in a quandary and pretty much paralyzed over whether to contact my rheumy or just go ahead and stop the taper while under so much stress and pain, or to just go ahead on my own when I felt ready to taper again and fill her in at my next appointment. I was afraid to talk to her.

I talked with my therapist. It finally became became clear to me that it was becoming more stressful NOT to talk to her about what was going on, (that I was only at 10 mg, not 8 like she thought), than it would be to talk to her. Knowing what a worrier I am, I would be totally stressed out for the next several months about being way below where she thought I should be when I see her again in May.

So I called and said I was still having pain and wanted to talk to her about it. I saw her last week. First thing she said was “how much prednisone are you on?”

So I told her still on 10 and shared all the stress and that I had paused the taper because of the pain and problems.

She listened to my tale of woe and said she didn’t think it was PMR/GCA related, (“your blood tests have been good for months”), it’s probably osteoarthritis,” and suggested doubling Tylenol taking 1300 mg 2x a day. She said this would be fine to take and added a liver test to my scheduled tests in two weeks.

My pain is better but still have some pain on the right side, upper back and sacrum and lower back when I wake up. Hurts when I bend over or walk. Gets better throughout the day.

She still wants me to taper on the slower plan, 1 mg every six weeks. “Because of the side effects, you’ve been on pred a long time, “ two years”. I only said sometimes the disease lasts longer but didn’t say more as I didn’t want conflict and my energy was gone by that point. She didn’t say “taper when you’re ready”

I I thanked her for helping me more than anyone had, and I feel better now that she knows I’m not at 8mg.

She will order an X-ray of my back if I want one.

I still have major stress with my son, PTSD. Plus he’s having gout right now. The rest of my list of stresses is still ongoing.

Is there anything else I should be doing for my pain? Physical therapy? I do have mild scoliosis.

Pain is not as bad as it was so I’m hoping it’s alright to begin the 6 week taper, 5.mg for 3 weeks and then down another 5. Mg for 3 weeks.

What do you-all think about tapering or do you have any other suggestions?

I feel like I did a little better on standing up for myself and doing what I thought would take care of myself in the best way.

Thank god for all of you who understand!💖💕

[Hidden]

If it's any help, I'm into my 6th year of PMR. Now on 2mg until the warmer weather, then I shall try a taper again. Sometimes we have a longer journey than the Doctors would like.

[HeronNS]

During my years on pred I've accidentally, not through any doctor testing me, discovered that pred can interfere with our various electrolytes, and through simple therapy, like adding more salt to my food (unlike many I was salt deficient) or occasionally taking a magnesium capsule, I have reduced some of the symptoms I would attribute to either pred or PMR, including, but not limited to, reduction in headaches and improvement in PMR niggles. I think trial and error are needed, but worth checking into. The extra calcium we take is likely to lead to a calcium/magnesium imbalance, and a magnesium supplement will not harm us and may well prove helpful. Also Vitamin K2 helps the body more successfully use calcium, magnesium and Vitamin D.

I suggest this because correcting any micronutrient imbalance or deficiency might help you begin to feel a bit better physically, also more able to deal with the stress of your situation, and able to successfully taper.

[Hidden in reply to HeronNS]

I'm with you on that HeronNS. Looks as though we have similar experiences.

[jinasc]

"pain right side, upper back and sacrum and lower back when I wake up. Hurts when I bend over or walk".

Have you thought about Acupuncture...........or Bowen Therapy?

[Mstiles in reply to jinasc]

Is there something similar to Bowen therapy in the US, or is it known over here?

Yes I might try acupuncture. I’ve used it before PMR/GCA

[PMRpro Ambassador in reply to Mstiles]

There used to be some excellent videos from practitioners in the US but I couldn't find them last year! But yes - it is known there.

These might help - don't know if they are up-to-date though:

americanbowen.academy/find-...

bowendirectory.com/

[Mstiles in reply to PMRpro]

Thank you.

What is the philosophy behind Bowen therapy? Is it similar to Pilates?

[jinasc in reply to Mstiles]

thebowentechnique.com/what-...

Just follow the link and you can read all about Tom Bowen.

BTW If you want to practice in Australia, it is a degree course.

[SheffieldJane]

Good for you Mstiles. It’s never as bad as you imagine. I would honestly trust my own instincts about the taper. It is what my Rheumatologist allows me to do. I am sure it has saved me a lot of unnecessary pain. I have been on Pred for 4 years. I am sure your doctor is trying to save you from the well documented side effects, but you do need to have quality of life too. This is a painful, disabling disease. I see a Pilates, Physiotherapist who takes me through some gentle movements/ exercises. At least it makes me feel like I am doing something positive. I am sorry that your stressors remain. I hope your very good sounding, Therapist gives you some strategies to cope with the things we can’t change. 🌸

[Mstiles in reply to SheffieldJane]

Thank you Jane. I would feel more secure in starting to taper again if I check out some other things. The Tylenol helps some. I’m sleeping OK with Tylenol and CBD/ low dose cannibis.

[Mstiles in reply to Mstiles]

Yes my therapist has been crucial in helping me with stratigies for those “things we cannot change”, my son’s struggles being one of them, much as want to.

Thanks Jane❤️

[PMRpro Ambassador]

I had a mild scoliosis identified 30-odd years ago - which seemed to have disappeared after several years of doing Pilates and aquafit which had strengthed my back muscles.

I do wish rheumies would catch up with the length of time PMR lasts ...

[Mstiles in reply to PMRpro]

Me too. I didn’t want to bring in any articles as I wanted to avoid being in any way confrontational right now as she’s been so helpful in the past.

Yes my mild scoliosis was diagnosed as a teenager.....many years ago! It’s never bothered me but now weak back muscles could be affecting it. I probably need to start some type of exercise other than my 15 minute walking.

[Hidden]

Your post has bolstered me up as my rheumatologist appt is tomorrow. Was dreading facing her as I too have not done what she said. Will see how it goes. Hope reason prevails. Thx. 🤗

[Mstiles in reply to Hidden]

Good luck! Let us now how it goes 💖

[Jackoh]

Well done you for biting the bullet and seeing her. Shame she wasn’t as accommodating as we would have liked her to be but as you said at least now she knows what dose you’re on.Hope the other stressors start to improve soon. Xx

[Mstiles in reply to Jackoh]

Thank you Jackoh ! I’m really actually kind of proud of myself!, having struggled with confrontations my whole life. I feel good about it.

Couldn’t have done it without the knowledge and support of everyone on this forum including you ❤️