please read my bio, any response is appreciated

[Unfortunate1]

see bio

[piglette]

There is no link???

[Kendrew in reply to piglette]

Click on the little round photo and it'll take you to the bio.

[piglette in reply to Kendrew]

Ah, I had not thought of that!!

[Kendrew in reply to piglette]

Haha!😄 ..... it's sometimes the simplest thing isn't it! We've all done it!

[DorsetLady PMRGCAuk volunteer]

You need to say what you are experiencing - or look at this from FAQ -

healthunlocked.com/pmrgcauk....

or this -

healthunlocked.com/pmrgcauk...

As it is, its a bit of a random question.

[Unfortunate1 in reply to DorsetLady]

Headaches, more on the outside not in, temple pain, jaw pain. Now flashes and loss of vision in my left eye, very brief and inconsistent. Saw my GP he is not sure, so he told me to bump up the steroids just in case, and of course now I feel like superman, with a laundry list of test.

What I am afraid of is backing down to zero to get these test done, and losing sight. Am I correct to be concerned about this.

[DorsetLady PMRGCAuk volunteer in reply to Unfortunate1]

Yes you are right to be concerned -and yes you will feel like superman - and tests need to be done as a matter of urgency.

Do have a date for them? What dose have you gone up to? Why didn’t prednisone will for you?

[Unfortunate1]

Sorry for delayed response, I am at work. I do have test set up, but I am going to do this slowly. I have to get off the steroid, otherwise it will be a waste of money and time. I have been dealing with PMR since 2018 I just turned 57 and my future is a little scary right now. But I know how this works, I can't just jump off. I bumped up to 8mg of Medrol, this is equal to about 24mg Prednisone. I tried Prednisone in the beginning, and no matter how much I took, it just didn't work. When I got diagnosed my GP he put me on a pack to slowly work down over a weak, well by the time I was done , it just all came back. That was Medrol, and he then got me on a full script of Prednisone, and it did nothing! I told him get me back on the Medrol, and boom I was back.

[aewin in reply to Unfortunate1]

"8mg of Medrol, this is equal to about 24mg Prednisone"

Fwiw, the steroid medical protocol where I live is mainly the Medrol (methylprednisolone) which is just slightly stronger than prednisone. Your 8mg Medrol is equal to 10 mg Prednisone, not 24mg!

You can check it here: mdcalc.com/calc/2040/steroi...

[singingloud in reply to Unfortunate1]

Have they offered to do an ultrasound on your temples? Then no need to taper off and take a chance of losing your sight.

[Unfortunate1 in reply to singingloud]

yes that is scheduled no appointment yet

[DorsetLady PMRGCAuk volunteer]

Can you clarify your comment - When I got diagnosed my GP he put me on a pack to slowly work down over a weak, well by the time I was done , it just all came back.

Do you mean original diagnosis or this time around ?

If you were only on a trial for 1 week then I’m not really surprised it didn’t work…for some it a miraculous few hours result, but certainly not for everybody.

If it is GCA, then seriously doubt 8mg Medrol/24mg Pred is enough… and at that dose, it’s isn’t going to get the GCA under control… so also won’t necessarily affect the usual tests used. Plus you cannot afford to dilly and dally with GCA - especially with headaches, jaw and sight issues.

[Unfortunate1]

That was my original diagnosis, the pack was Medrol, 6 4mg the first day then 5 then4 and so on. I woke up at Midnight after starting, and it was like a miracle, I even woke up my wife to tell her. Pretty disappointing looking back, I thought I was all good, boy was I in for a surprise.

I appreciate that input, and I need to see how this goes, I just started. Also driving to work this morning I did have a spot in my left eye for about 3-4 minutes then gone.

[DorsetLady PMRGCAuk volunteer in reply to Unfortunate1]

I’m sorry to be blunt -but you can’t “see how this goes”.

I was undiagnosed for 18months so obviously not on any steroids ( long story so won’t bore you) but once I started having a problem with sight issues (blurry in my case) it only took 4 days for all sight in that eye to be irreversibly lost.

Your experience this morning is a common occurrence and a red flag. Please get it looked at asap -and ER is best option.

A wasted journey and a few hours in ER is better than lifelong sight loss….

[Unfortunate1]

I have an appointment Tues next week, earliest I could get. Please be blunt, I need all I can get right now.

Thank you, need to get through my day today. I will keep you up to date, again thank you.

[Grammy80 in reply to Unfortunate1]

My story is just like DorsetLady.....Go to the emergency room or get into a rheumatologist...you can't fool around and time is critical. If it isn't GCA...super!! You need to find out ASAP......if I may be even blunter~! Get on it....💞

[Unfortunate1 in reply to Grammy80]

Thankyou

[PMRpro Ambassador]

You aren't quite right about the dose equivalents - 4mg of methyl pred is equivalent to 5mg of prednisone or prednisolone. They are all used in various parts of the world. Prednisone does have problems if a patient has a liver issue as prednisone must be processed by the liver to produce the active form prednisolone.

On that basis - if 8mg medrol is working, I'd be sceptical this is GCA. It is a pretty low dose. But what tests are you talking about? I can't make sense of your bits of info.

[Unfortunate1 in reply to PMRpro]

biopsies and ultrasound first an eye exam Tuesday

Need to ask the doc why I was told those numbers

[random901 in reply to Unfortunate1]

Relieved to hear tests being done Tuesday, even though that's 4 days away. It's not just your sight that's at stake. My undiagnosed GCA caused a heart aneurism leading to major surgery.

[Lenore58]

With the possibility of GCA, and particularly because it is already affecting your eyesight, it would be utterly foolish not to head straight to the ER. Please listen to DorsetLady and others who know whereof they speak. They have lost sight in one or both eyes. Time is of the essence !

[Unfortunate1]

this is getting very overwhelming

I understand the urgency. Now that I have double my dose all is good. Please realize I’m in the states, an ER visit is similar to walking on a tight rope when you’re a middle class white male with poor insurance. I am trying to reduce the stress and just rest right now and it is working.

But you guys are great resources I will continue to keep all informed, thanks

[sidra1968 in reply to Unfortunate1]

Medrol packs were how I figured out what I most likely had, too..like a miracle..until I finished the pack..then it all came back. I am in the US, too and work in a hospital..go to the ER if the sight issues continue. Mid-sized city, waits aren't long at all now. Please keep us posted

[Unfortunate1 in reply to sidra1968]

👍thanks

[AtopicGuy]

Please declare an approximate age on your profile. A history of your CRP and ESR tests would be helpful, too.

Methylprednisolone is only 25% more potent than prednisone/prednisolone, so 4mg/dy is equal to 5mg/dy, not 11mg (see link below). So you may be on less than the dose of steroid you think you are. That might explain your deteriorating symptoms, especially if you needed an increase rather than a cut in dose.

drugs.com/medical-answers/d...

[Unfortunate1 in reply to AtopicGuy]

57 I have no idea where that stuff went to. I’m starting to swing in that direction that I need to up it, but really feeling pretty darn good right now. Just rolling with it and so far no vision issues since yesterday mornings small event.