Hi folks. I am new and have a PMR/Gca question.

[3daysinjuly]

Diagnosed PMR mid September 18 and 15 mg seemed to be working well. But for the last month I noticed my vision is really off. Got new glasses, saw the ophthalmologist. My cpr went down from 15 to 3.4 as of last week. So yesterday I saw the Rheumatologist and she said we can see if upping the pred to 40 for the next 3 days gives some improvement in the vision. If so we can take it from there with a TAB. If the vision problems remain I should see the eye doctor again. She said I could go back to the 15mg after this sort of test. Sound pretty reasonable?

[DorsetLady PMRGCAuk volunteer]

Hi,

Couple of things -

Personally I would get another eye appointment to ascertain exactly what’s causing your vision to be “off”!

The increase in Pred may resolve the problem, or it may not - sometimes the Pred itself can cause vision problems!

Plus if you have a TAB as you have been on Pred for some time it may prove nothing. If the sample of artery taken does not show GCA cells it will be deemed as negative, but that doesn’t prove you don’t have it in other vessels.

However if your CRP has decreased then it shows the Pred is working on the inflammation which again may give a negative result.

As the 15mg worked initially I would doubt you have GCA (the dose needs to be higher) but with any eye irregularities it’s best to check.

[3daysinjuly in reply to DorsetLady]

Thank you DL. I didn’t mention I had to fire my original rheumy because he told me to take 5mg and 10 if 5 did not work! So I went 2 weeks-on 10mg.When my markers did not come down he told me I wasn’t treating the inflammation! He was the one to blame not me! So I have another rheumy and since Oct 24, 15mg has been good. I hated the thought of vision loss so as I said, I agreed to this 40mg for 3 days to see what happens. I hope nothing happens so I can go back to my PMR dose of 15.

[PMRpro Ambassador]

If you don't have any symptoms other than strange vision I'm surprised she is going straight off for ?GCA. Even I had "strange" vision - and spent a few years shifting my specs up and down my nose to fit rather than spend a fortune on lenses every few months!

Has she no access to temporal artery ultrasound? Otherwise - everything DL has said...

[3daysinjuly in reply to PMRpro]

Thanks for responding PMR Pro. I guess I was pushing for something to eliminate GCA since the vision loss possibility alarmed me. I’m having a hard enough time accepting PMR since I have been athletic all these years. I have no jaw tiredness even though I have Tmj. I have no scalp tenderness. I did have some mild headaches for 4 days but gone now. This has been stressful for me. The one thing I am not sure about is a cough. I did have a head cold but I also coughed for about 3 weeks afterwards and when I went to 15 mg it seemed to leave me. I can ask about the ultrasound. I sort of regret taking that 40 mg this morning but now that I did I suppose I should see it through for 2 more days. Of course no pain on this dose but vision still off. Do you think I should see this 3 day thing through? Tony in NJ

[PMRCanada in reply to 3daysinjuly]

Getting to the point of being able to accept that you have PMR can be challenging journey emotionally. I experienced a range of feelings/emotions from anger and denial, to grief/loss and finally acceptance. With acceptance came peace and focus on what I could control (diet. activity, rest) while the uncontrollable PMR chugs along in my body.

Take time to feel what you feel. As someone who is 6 months into my PMR journey, I can assure you things will get better as you master listening to your body and manage your medication, activity and rest. Patience is required, and this forum is very helpful and an invaluable resource.

Hope the trial results in no new diagnosis and you manage to address your vision issues.

[3daysinjuly in reply to PMRCanada]

Thank you, Canada. The range of emotions you mentioned have been mine... the final one is so hard. But I will have to accept.

[PMRCanada in reply to 3daysinjuly]

It sure is hard to accept! I had just got married sold a house and moved into a new community and house. Had just retired and was in the middle of major renovations, and now I could hardly get around, couldn’t help...couldn’t even do the basics for myself.

Diagnosis was a blessing, and so was pred. Still couldn’t golf, play tennis, dance....not the retirement I had planned for and dreamt of.

It’s an adjustment for sure.

You will get there eventually, and we’ll be with you along the way.

[3daysinjuly in reply to PMRCanada]

Yes, that was a lot going on for you pre PMR. Do you think all that stress was the cause...possibly? I guess we can’t know. Golf was my game, too, by the way. I’m just flat out pissed off. Tony

[PMRCanada in reply to 3daysinjuly]

Yes, I had a lot of (good) stress going on at the time symptoms emerged. I also was recovering from a nasty upper respiratory infection that was so bad I ended up in the emergency department of our local hospital the night before we moved. I think this was the last straw that pushed my immune system to go haywire. I’ve also read some people’s PMR/GCA came on after an immunization such as the flu shot.

I was mad as h*#l too Tony. The anger would come in waves along with feelings of loss over my former lifestyle pre PMR. The good news is that even though our PMR ravaged muscles are intolerant of acute exercise, and prone to DOMS (delayed onset muscle soreness), you can SLOWLY build in some activity such as aqua fit (deep water exercises-my favourite), walking, and bike riding.

Other tasks may need to be done in smaller parts with breaks in between. Readjusting to the “new normal” takes awhile. I still sometimes feel like a 76 year old as opposed to my age (56).

Here’s hoping you are able to participate in golf again perhaps next season...just try the driving range first to see how your shoulders make out, and a cart might be best. If all else fails, there is always mini putt.

Leslie

[3daysinjuly in reply to PMRCanada]

Interesting about your infection. I had an infected cyst removed from the back of my neck (was also on antibiotics) probably a week or so before I started having trouble getting up from a chair and getting started moving. That was how mine started. And then one day I simply could not even get out of bed or raise my arms. Agony. Coming in waves is a good way to describe both my anger and sadness. One little thought about ANY day pre PMR brings it on and I can’t seem to turn it off. My release was always extremely long walks and hikes. Sometimes 8 miles. It was my stress buster. I hope to do my walking again....maybe the driving range also in time. But like you said, the shoulders....and that damn upper arm thing. Why there, I wonder. Maybe due to the fact that you are younger your remission will be quicker. I hope so.

[PMRpro Ambassador in reply to 3daysinjuly]

There is nothing to eliminate GCA - even a TAB doesn't do that as there are many reasons for a TAB to come up negative even though the patient does have GCA in other arteries. But a GCA diagnosis is fairly specific in terms of symptoms and you demonstrate none except blurry vision which can happen with PMR as well and even with pred. Even the 3 days of pred won't really show if it IS GCA. But it may well improve the management of your PMR for a while so it isn't useless.

As PMRCanada says, learning to accept what you have and then being aware of your body is the best way to live with PMR - it is possible, it doesn't stop me doing much...

[Hidden in reply to PMRpro]

I'm shifting my glasses up and down on my nose and was pleased to hear someone else has experienced fluctuating vision. Sometimes things are as they should be and other times I need to tilt my glasses for better clarity. It is comforting to know that this is yet another 'thing' related to PMR. Thanks for mentioning it.

[SnazzyD]

What is “off” exactly? Pred really monkeys around with focus, so what is it in your vision that points to GCA?

[3daysinjuly]

Yes, Focus is exactly what is off. I can’t seem to comfortably watch the television. I should say I have had ptosis or droopy eyelid forever in my left eye and these days it is lower than normal. The eye doctor said no inflammation in the optic nerves recently. So now that you are letting me know Pred really monkeys with focus maybe I got overly worried about GCA? Tony in NJ

[SnazzyD in reply to 3daysinjuly]

So my ‘monkeyed’ eyes kept changing which focal length they were happy at. I also found it difficult to change depth of focus quickly, so that if I read some print, the garden would be blurred for minutes and I’m meant to be long sighted. As the dose has reduced it has slowly improved. I also found that this inability to change focus quickly meant walking past close object made me feel a bit motion sick eg open field fine but woodland path no. Before GCA I had a few black spots when I was exercising hard and short of oxygen. I also was occasionally waking in the night for a wee but my right eye only saw grey. I hope that helps.

[3daysinjuly in reply to SnazzyD]

Thanks. I am hoping these visual changes are pred related and not related to Gca. I have no other symptoms really. No scalp, jaw pain etc. Well, my prayers for all of us.

[Chihuahua1 in reply to 3daysinjuly]

I had issues with focus while on pred which was bad enough some days to stop me driving. Other times it was ok. Since coming off pred my vision has returned to normal. I was also prone to mild but annoying headaches.

[Hidden in reply to SnazzyD]

Thanks for that post. I have had those exact experiences with my vision. It is comforting to know that this is normal given the circumstances of our conditions.

[pmrkitty in reply to 3daysinjuly]

Yes, I also had vision problems with the Prednisone. I was on 15mg. of Rayos.

[Linny3]

Hi

I have the exact same problem. Some days are pretty good and I forget to wear my glasses. Other days even the glasses don't allow me to have clear focus while watching tv.

Over the last year I have spent much time and a lot of money at the ophthalmologist before we figured out it was the prednisone. Now I have 4 pair of glasses with differing prescriptions. Oh Well, the joys of pmr.

Good Luck

[3daysinjuly in reply to Linny3]

Hey Linny,

Well that is encouraging for me to know that. Thanks. Yesterday I just shut off the tv because it was driving me crazy. And it was worse when I lowered my gaze. Sometimes I get a diagonal double. When I was at the ophthalmologist office I told him that and he said well we can try playing around with...I think he said refractive lenses or something like that. He also said I have cataracts but that and a buck will get you a coffee. In other words meaningless.

[Chrob in reply to 3daysinjuly]

My focus has been monkeying about , some time fine ,others not . I’ve found myself looking over the top of reading glasses as you do , also looking over distance glasses when out . Perhaps I’m thought of as the weird woman who likes glasses on the end of her nose . Prednisolone 2 years January. Yes I also believe stress physical or mental can tip this thing .

[3daysinjuly]

I just want to say I am glad and grateful that I found this informative and supportive group. I don’t do well alone and I always feared that after my divorce something would befall me and the other half would not be there for comfort and support. At 67 it sure did happen with suddenness. I always wonder if being rear-ended pretty violently back on April 25 had anything to do with this. If stressed lives count for some causation you can surely add me to the list. Tony

[PMRCanada in reply to 3daysinjuly]

Hope your discovery of this forum reduces your feelings of loneliness/isolation. We are here for you!

[Pym1]

Started a reply but seem to have lost it. Grrrr. Aged 74 and active sportsman (for my age!). PMR arrived a year before yours. Initially almost any activity hurt and muscles quickly got tired SO quickly. My personal experience is that gentle and gradually increasing exercise helps me. Pred takes a lot of the aches away but doesn’t stop muscle tiredness. Warm up well. Avoid sports with aggressive activity eg squash. My knees don’t like jogging. Swimming, cycling and walking I find ok. Managed to ski last season but could only tolerate short gentle runs at first. If you do start exercising again and find a bit of euphoria because you CAN do something DONT OVER DO IT AT FIRST. I did and was wrecked for a few days! But if it works the adrenalin buzz and satisfaction is worth it. Stretch and stretch afterwards more than you ever did before. I’ve taken up Yoga and amaze myself by loving it.

Good luck. It does gradually get better, but more than a year in I’m beginning to realise that learning to live with it takes time. Take it easy.

Pym

[3daysinjuly in reply to Pym1]

Thanks Pym. Good advice. I was so active before this just as you were. Hard to come to grips with the suddenness of it all.

[Pym1 in reply to 3daysinjuly]

It is hard. Try not to compete with it too much. ‘it’ probably doesn’t enjoy being with you any more than you enjoy hosting ‘it’ Good luck.

[Qubbie]

Get checked for gca

[Patience_1]

Hi, problems with vision can be really scary. (I also feel anxiety if I get a headache these days!). I have had pmr for nearly 3 years. Can't add much to all the other replies, but I know it does help to find that experiences are share - and it's certainly wise to get symptoms checked out as far as possible.

I've only had a couple of strange visual experiences (wavy lines), both in the early days, and after discussing with my optician and gp put it down to probably the effect of steroids. Pre pmr I had very good long distance vision, though I've used glasses for close work for many years. My regular tests showed very little change in the last 4-5 years. Then, after pmr I noticed I was needing my glasses for tasks a little further away (for example, watching tv) and there really was a rapid deterioration.

Now I seem to have levelled off again (and the pred has come down very gradually and steadily from 15mg to 5.5mg). I am however left with slightly blurry vision at all distances. I seem to have collected a huge array of specs for various tasks (driving, computer work, embroidery), and it's a real pain! The right glasses are never in the right place at the right time! I don't know if my vision will sharpen again when (if) I finally come off the pred - of course, in the meantime I've been getting older so I suppose I have to expect age will catch up with what the pred leaves undone. Oh joy!

[Lonsdalelass]

Hi there 3daysin july, just to say you are not alone at all, and I also found (and still do) acceptance of this PMR hard. Am only 6 weeks into my journey. Getting tough days when I have overdone things, and depression strikes for a bit, but have to tell myself that what we have is not life threatening and there are far worse things going on in the world and with others. And this forum REALLY helps. Its still hard I know, it was my birthday yesterday and i was in tears for most of it as I had overdone things and had a busy week! Like you I have always been active and loved walking, done aerobics and cycling, so it hit me hard. Hopefully we will get our mijos back sooner than we think! All the best.

[Lonsdalelass]

...even our mojos! Ha!