symptoms dropping from 30 to 25, weird visual symptom

[Mstiles]

GP and new rheumy tapered me from 37.5 to to 25. in a month.

When I tapered to 25 I had the usual few days of withdrawal symptoms.

After 2 weeks I was supposed to keep tapering to 20, but I began to have these symptoms;

pain in hips, rib, back, knee, ankle, thigh muscles. This pain feels like the PMR pain I had before diagnosis, except for the hip pain. some neck and shoulder stiffness. some soreness on back of head where I had the original headache. Occasional niggles at temples.

So far Tylenol has worked pretty well for most things except for the hip pain. Doesnt' do anything for swollen jaws or major tinnitus.

occasional nightsweats, lost a few pounds.

more jaw swelling, sometimes stiffness in tongue and jaw when eating, not pain, just sometimes hard to get through some peanut butter!

more tinnitus

These symptoms coincided with a lot more stress in my life. Carer for son with a broken foot. He's not working so not contributing to household expenses or doing much housework, shopping, cooking, etc. Unreliable transportation, have to ask for rides sometimes.

So Friday I had a weird visual symptom when I got up. It was a wavy, gray, circular area covering part of my visual field. I could see thru it pretty well, it looked like my drawings on the wall were moving. It resolved after an hour or so and moved to the left and disappeared. I took an extra 5 mg of pred. It was the first time I had any visual symptom, (except blurriness and worsening nearsightedness), since diagnosed with PMR/GCA. The eye specialist, I called, recommended continuing to take the 30 mg over the weekend and call if any more symptoms, also call the rheumy on Monday. The eye doctor thought it was probably an "ocular migraine", where you see visual patterns but no pain. I've had several similar episodes of this, but it's been years. Happened when stressed. This pattern was different though. I continue to have some double vision when reading, being monitored by the eye doctor.

The rheumy wanted me to come in, so I see her tomorrow. I took 30 for 4 days, then yesterday and today I took 27.5.

My bloods from yesterday show no inflammation. lower than last time.

So her expected response will probably be "keep reducing".

I know stress is probably helping to cause a lot of this, but the visual thing really frightened me, I feel confident and trust the eye specialist, they are associated with a teaching hospital, University of California, Davis

I'm not confident in the rheumy, altho she is also affiliated with UC Davis. Her MO seems to be to see me every 2 weeks and if bloods are fine "keep reducing".

I would like to stay on 27.5 a few weeks before trying 25 again. Hopefully stress will ease by then.

thanks for any comments

[jinasc]

No, I would not agree to any drop at all.

The reduction they have made has not suppressed the inflammation and it must be got under control.

If not you could well lose total or partial vision.

It took me 6 months to get from 60mg to 20mg and then I ran into problems and up to 40mg and then no more than 10% at a time.

This is the third post tonight with this link pmr-gca-northeast.org.uk/as... read, download and digest, knowledge is power.

Dr Eric Matteson is a world wide expert on GCA and operates out of the Mayo Clinic, put his name in your search engine as you are in the USA/

[SheffieldJane]

Your inflammation won’t show up because you are being treated with Prednisalone.your symptoms do sound like GCA don’t they? I hope you get some useful doctoring tomorrow, you really can’t be too careful. You can get stuck in a situation when a senior doctor puts an opinion in your notes and then it doesn’t ever get challenged by the others. Please emphasise this grey wavy area that obstructs your vision, this could well be a warning that might lead to sight loss. You might be safer in an emergency room.

[HeronNS]

It sounds like ocular migraine, which in itself is a nuisance but probably not a real problem, but as others have said you are at risk for GCA. The other thing to be aware of is macular degeneration which I think can show up initially as a visual disturbance such as you describe, of wavy lines.

webrn-maculardegeneration.c...

Perhaps, as you are being monitored by an eye doctor, you should ask about these different things?

[Hidden]

Ohhhhh Mstiles, So sorry this has not been easy for you! It must feel like you're caught between a rock and hard place... bad enough GP and Rheumy want you to "reduce, reduce, reduce, with your son laid up and you not being 100% it puts even more stress on an already stressful situation! Hang in there, I hope you decide what's right for YOU as far as the tapering goes. Good luck my friend.

[PMRpro Ambassador]

It may have been an occular migraine - but you are describing typical GCA symptoms.

"Doesnt' do anything for swollen jaws or major tinnitus.

occasional nightsweats, lost a few pounds.

more jaw swelling, sometimes stiffness in tongue and jaw when eating, not pain, just sometimes hard to get through some peanut butter!

more tinnitus"

To take the dose down from 37.5 to 20 in a month is totally irresponsible in my opinion - not to mention really unfair to any patient who will almost certainly suffer steroid withdrawal problems. Also, the stress won't have helped - and on that basis alone your doctor should be moderating her approach to reduction.

[Mstiles in reply to PMRpro]

Thanks I never got to 20. I stopped reducing at 25 when symptoms got worse. Then took 30 over the weekend and 27.5 the last two days.

Hopefully when I see her this morning we can reach an understanding. Symptoms . Are still the same. No visual symptoms though.

[DorsetLady PMRGCAuk volunteer]

Nothing to add, but just to re-iterate everything PMRpro has said. Irresponsible approach from Rheumy, who obviously doesn’t fully understand the implications of not enough Pred and GCA.

Just because bloods are okay, does not mean everything is tickety boo - symptoms show it’s NOT!

[Grants148]

I too have nothing to add ,l really think you need a higher dose of steroids,it is too risky to lower too much with the symptoms you are experiencing.l wish you all the best,l hope you will feel a lot better soon.