Update to still in pain and depressed

[Mstiles]

I want to thank everyone for your support and so very helpful replies to me, I’m sorry if I worried anyone with my despair about life. Thank you for being concerned about me.

My GP finally refilled all of my prescription after only partially prescribing what I need. Maybe she finally got a chance to read my message which described everything. I’m not sure what she’s thinking at this point. I have a phone appointment with her tomorrow and I’m sure the prednisone dosage will come up. I plan on writing out what I want to say and using some of your wise and helpful messages. My fear is she will want to turn me over to the abusive rheumy who fired me, he’s in the same practice that she is, or want me to start reducing on a too fast plan.

I’ve also been in contact with my therapist which has helped. What helps the despair the most is my art when I can do it. I’m starting a Zoom group of three artist friends who I know from when I lived in Atlanta, and the plan is to show each other our work, maybe an incentive to do something new, and discuss. They seem enthusiastic about the idea.

Other stress still there. My son is having a flare of gout and will have to miss work, etc. $$$$

So as I said I’m back where I was a year ago at 13 mg. And wondering where to go from here. I’ve been on 11 and then 13 for over a month now, way too long to go back to 8 or 9 according to what’s recommended. I’ve still got some pain, mostly on the right side, sacral area that comes and goes, and on left side, feels like under the shoulder blade. Some stiff neck and pain which gentle stretching seems to help but not get rid of totally. I’m pretty wiped out and tired.

I had sed rate and CPR tests a month ago so I’m going to ask for them again. Is there anything else that might be causing this pain that she could test for? Would a neck X-ray show anything useful? I’ve read about anklosing spondylitis (spelling?) that involves the neck and sacral joints.

My feeling about the neck issues is it might be a combination of myofascial pain syndrome, (thanks PMRpro for your information), a slight scoliosis, poor posture, and weakened muscles. I’m wary of seeing a physical therapist with rampant Covid, but thought of finding some exercises on Utube for posture and to keep doing the gentle neck stretches to see if that helps any.

What do you-all think about tapering at this point? I’m pretty sure my GP will ask me about this tomorrow. Since she completely refilled my dose I have enough pred for several months now if I need to stay at 13 for awhile, so I’m not so panic stricken and in that pit of depression right now.

This forum is a life-saver and a gift. Thank you everyone. 💖

[PMRpro Ambassador]

You can always try tapering - and stop if it doesn't work. That's really what you do anyway - ifit works, great. If it doesn't, wait a bit.

[BirmLiz]

Hi, I found my flare up knocked back my confidence in my body and gave me a real downer. Anyone who has PMR and doesn't dip into 'The Pit of Despair' is extremely lucky. I'm glad you've got your art to look forward to- I tried to focus on what I could do and with me that was singing (good job I have lovely, understanding neighbours!).

As regards the tapering, you could try really slowly if you have a good stash by one day at 13 and one day at 12mgs? If you manage on that for a couple of weeks then try 2 days on 12 and 1 on 13? It really depends on how you feel on a slightly reduced rate. This way you're giving your body a chance to get used to a slightly smaller dose and the GP should be happy that you are reducing, albeit slowly.

Good luck with whatever you decide and with the telephone appointment. Hope if there's something else lurking behind the PMR, it's found and sorted out soon.

All best wishes.

[Rose54]

Hi

I have Cervical Spondylitis in my neck which is playing up at present .

I do think I have increased Steroids in the past mistaking this as a flare ,I have used a wheat bag on it this time and as that and Paracetamol ease it I now know that it is not a flare .

May be a good idea to request X Ray

[ChinaWuntoo]

Cervical Spondylitis - I have it and it is worse at the moment, which I put down to the heat in southern England. or perhaps stress. But I don't think it is connected directly to PMR which seems stable at the moment.

Hope your GP is understanding.

[SheffieldJane]

So relieved. You are so resourceful, given just a little relief. I love the human spirit. Your art project sounds wonderful!

My cervical spondylosis was diagnosed following an X Ray. I wonder if 0.5mg drops would suit you? They suited me and I got down to 3 mgs. Don’t let your worries pile up - one step at a time.

[Melti]

It's good to hear that you are feeling a bit better, what a relief. I do hope that your Art plans help too - I love getting really stuck in to painting - the hours pass and I forget temporarily about problems and worries. And thank goodness for the kindness, wisdom and helpful replies from people on the forum.

[ncfaaeos]

Just a thought, but I wonder if the Better5 chair yoga/pilates online classes might help you. They are not expensive. I too am dealing with a lot of pain, though below the waist, and tried their Gentle Chair Pilates chair exercises, which helped me. If you search for Better 5, their programme should come up.

[Hidden]

Glad you posted again. Your art sounds like a good, upbeat outlet for you. As an oldie, I too have trouble sometimes figuring out the various pains. I’m such a self diagnoser. 😒. Perhaps a mention to your GP in your writing and see what reply is. My best.🤗

[PMR2011]

Glad you are sharing your art. Social activity can help so much with getting our minds off our physical troubles. I’ve had myofascial pain in neck and found heat helps and the following utube yoga for neck, which is gentle and doesn’t take much time.

m.youtube.com/watch?v=b6wPH...(Not working as expected?)

[Mstiles in reply to PMR2011]

THANK YOU! I’m going to use that yoga. Thanks for providing me with the link. I was going to search for something like it but it’s been hard to get stuff done with the depression. You made my day PMRpro❤️

[Hidden]

I was feeling a bit down myself recently because with all this covid going on my GP at Piedmont Hospital wasn’t taking patients other than by video and I needed more pred. I am over in Athens GA and it has been a nightmare to get them to refill my pred. He would order only ten day supply at a time and i wanted 90 days but his nurse told me no on that. I eventually went to an emergency clinic and the doctor there seemed to know about PMR and finally prescribed me 90 days worth and said he would try to get me in with a rhumy in Winder. Still waiting for that call. It really had been a long miserable year butI am trying to keep positive. I wish we lived closer we could go have coffee together and chat.

[Hidden]

Morning from England to sunny Atlanta (been very hot in England recently too) So sorry to read of the situation you're finding yourself in. Depression goes hand in hand from taking Prednisone. Some days for me are very dark and feel awful mentally. I've never suffered from depression but now know how awful it is for those that do. But with me once off the Pred it will go, along with all the other side effects. Weight gain, blurry vision, bad hair, nails, numb feet and the awful shaky feeling. This morning I reduced to 13 mg. Sadly, when first diagnosed with PMR and started on 15 mg. I managed to get down to 8 mg without any problems, however, getting to 8 mg Giant Cell Arteritis kicked in and was put on 40 mg. Which in retrospect my rheumy had me reducing each dose only after two weeks which was way too fast. Since then I've been listening to the ladies and reducing much more slowly. I'm reducing by 1mg after every two weeks at the moment is okay for me. Once, and if I manage to get down to 10mg he's advised me to stay on each mg for a month. One thing I have noticed though, once in bed I'm starting to get cramp in my legs...hope this isn't a sign !!

Take care and don't over do it.

Kind regards

Anne