Still stuck at 13 and overwhelmed

[Mstiles]

Thank you everyone who replied to me a few weeks ago about being stuck. I’m sorry I didn’t reply to all the responses. Things have only gotten more stressful. In California we are still having fires and blackouts. So far no fires in Northern California where I am but another power blackout next week. Being without electricity is stressful. And like everywhere Covid is exploding and we have stay at home restrictions.

I did see my opthamologist last week who did a field of vision test and optic nerve scan and eye pressure test. All OK but right right optic nerve “looked a bit different but OK”, of course I will worry about that! I’ve noticed a bit of a difference in that eye in clarity of vision when looking a bit to the left the vision is clearer than looking straight ahead or a bit to the right. Not sure what’s going on but the doctor says I’m OK. Worsening vision in seeing faces in tv chalked up to the cataract in the other eye. With Covid I’m afraid to do anything about that right now.

I’m not having occipital pain anymore. Just occasional weird sensitivity and minor pain on the top of my head on that same right side. My doctor is at a teaching hospital clinic and the place was packed even with social distancing. They weren’t limiting capacity. It took forever. Really stressful!

I’m still looking for a rheumatologist after losing mine last June. I have some names from a referral to check out but have run into insurance problems. I know I need to reduce, I’ve been at 13 for 5 months now! I need a plan. Every time I’ve tried to go down I’ve had some sort of pain, joints, neck, sacral joints, etc. , and I’ve gotten scared and tried to figure out what’s causing it and ended up stopping the taper. A new support pillow and stretching exercises have helped some of the issues. No family emotional support, no car, very limited income.

My GP has been prescribing my pred OK so far but she’s overwhelmed because of Covid, etc , and is not knowledgeable about GCA/PMR. I’m afraid at some point she’s going to bring up my lack of reducing.

Should I start on a taper and go for it? If I wait until the stresses go away or get better it will never happen! The family and other stresses probably won’t change much. Sorry for the long rant, but I feel that I’ve got to make some progress and get out of my current state of just blithely ignoring this problem.

[PMRpro Ambassador]

I've been stuck at 13-15mg for about 2 years now - a flare, cardiac problems, stress, a reduction to have a PET-CT scan at the start of Covid and more stress. I can function pretty well and that is what matter more to me than anything else. Part of being at 15mg at present is to manage the atrial fibrillation which is always far worse during a flare.

[Mstiles in reply to PMRpro]

Definitely worse than a flare. You’re sure dealing with a lot. I guess I’ll just deal with the cataract when Covid is not so bad. Getting in the way of my art work though. I hate having the fat face again though.

[nuigini]

I, like Eileen, have been stuck at 13-15 mg for at least two years, albeit for different reasons. After the last flare that took me back to 17.5 mg to settle, I decided to reduce by .5 mg using the DSNS schedule and stick with it, even repeat steps if I even suspected it might be a good idea. Previously, although I was dropping .5 mg at a time, I would get feeling well (cocky) or get pressure from doctors, and would end up rushing the reductions. This time I'm not going to let anything sway me off course. Today, I reduced from 14.5 to 14 and all is going well. FIngers crossed.

Having said all that I also believe I have the type of PMR, which can cause an increase in the inflammation regardless of what I do so that a bit of a worry. There's a name for this type of PMR, but it escapes me at the moment.

[Mstiles in reply to nuigini]

Yes I think I fell for that too....rushing a bit after reducing to go on to the next reduction because I had an upcoming doctor’s appointment and wanted to be where the wanted me to be and felt I would be criticized if I wasn’t, adding to stress. Have had trouble getting below 10.

[Tonylynn]

Have you had a retinal scan? Sometimes fluid builds up behind the retina in the central vision area (macula). Its called Central serous retinopathy. The eye consultants tell my wife (who had GCA and now ? PMR) this can be associated with steroids and ideally to try and eliminate but keep below 7.5 if possible. She is at 7mg pred and the fluid filled areas have diminished from when she was on a higher dose.

[Mstiles in reply to Tonylynn]

Thank you. I will ask. She said the retina looks OK when dilated, not sure if they did a retinal scan. The did check the optic nerve.

[Richnroo]

Hi mstiles! I’m from northern CA too! Probably a bit farther north than you because we are not currently slated for any blackouts, but is a frequent event, along with fires and exploding covid. The stress level of all those things is not helpful!

[Richnroo]

It’s stressful for sure. In fact I dare say the stress of these things have contributed to my autoimmune disease. It seems never to end and each year fire season gets longer. We literally have red flag fire warning in December! But... this is where our family, jobs, etc are. Makes it hard to move and leave all that behind.

[OldGolfer in reply to Richnroo]

We lived in Paradise CA until Nov 8, 2018. Around 10 am it became very easy to “leave all that behind”! Still waiting for our youngest son and his family to get out so I really know it’s not easy. Best of luck to those still stuck in old Kalifornia.

[Richnroo in reply to OldGolfer]

Oh yes the Camp fire. I live in Carr/Zogg fire territory. We really do need to leave. Glad you got out, though not under those circumstances.

[Mstiles]

Do any of you Northern California folks have a good rheumy you would recommend that would be close enough to Placerville where I am, to access? They are few and far between, especially good ones.