Confused and angry... and scared...

[Grammy80]

I received an email from my rheumatologist this morning telling me that he does not believe the blurry vision is the result of GCA and not to take the 20 mg the ophthalmologist told me to take and to take only 6mg per day...starting tomorrow because my labs were normal. That sounds familiar.

I called both offices today to see if they could get on the same page...if your vision gets blurry and you are shown all the blind spots in your eyeball...if it isn't GCA, what is it? It's ..."well your vision is blurry and I have no idea why, it is not your GCA."

One doctor wants to save me from the perils of too much 'dangerous toxic Medrol' and the other wants to save my sight.

I'm pissed off, can I say that? I did. I'm emotional because once before I was having issues and went to bed and woke up blind in one eye. I feel like a piece of taffy pulled between the two of them. I'm sad too. I've talked to my son and DIL and I think they may reach out.

So Miss Positive is having ....a not very positive time. xoxo

[jinasc]

Change that Rheumatologist fast and stick with your instinct - your remaining sight is precious so do not take any chances with the residue. xx

[Grammy80 in reply to jinasc]

I know...you are right...xo

[DorsetLady PMRGCAuk volunteer]

You know what I think....but I’ll be polite and say listen to the Ophthamologist!

......and find yourself another Rheumy.

🌺

[Grammy80 in reply to DorsetLady]

Yes... you are polite and smart and experienced. xo

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Seething actually - but swearing won’t make it better ... Viking Goddesses don’t - good job don’t have a sword to hand.

[jinasc in reply to DorsetLady]

You should have seen me when I read this 😡😠😡😠 then the sky turned Blue. .........................and the sky turned Blue.

[Luciejc]

Stay with the prednisone. If it were me. I would probably take more than 20 mg. My greatest fear is losing sight....as is for all of us! Listen to your gut. Hugs and prayers.

[MrsNails]

Oh Grammy, this is so awful for you, a conflict between Consultants is not good for anyone & leaves you stuck in the middle but it so much more serious because it is your eye site.

As the others have said it’s the Ophthalmologist who has your best interests at heart, has the Rheumatologist even seen you?

Wishing you Good Luck 🍀 maybe the time has come for your Son & DIL to intervene.

Keep us updated.

Thinking of You 💗

Angela x

[Grammy80 in reply to MrsNails]

Funny thing is I just had a rheumatology appointment on Thursday, the 16th. When I told him as I was tapering from 8 to 6 my vision was blurring and fuzzy more frequently....I keep a calendar taped to my cupboard and note any symptoms. He simply said...the Medrol can make you vision blurry but on Saturday it was like someone smeared Vaseling on my glasses..it wouldn't clear up.

My labs were normal...so his take is it can't be GCA....I've seen the opposite many times on this site...treat the symptoms. I have a feeling they will be calling tomorrow. I don't think the rheumy will change...so maybe I have to~! Thanks Angela~! 💖

[MrsNails in reply to Grammy80]

Thinking of you 💗 Hang in there 💗

[PMRpro Ambassador in reply to Grammy80]

Of COURSE the labs are normal - that is what Actemra does and so it is the SYMPTOMS that must be used for monitoring. And there is evidence that GCA can continue actively even though the patient is on Actemra and so some pred is needed.

It really worries me that rheumies are using the drug without knowing this basic information.

I think you need a second opinion - preferably from a rheumy who was involved in the trials.

[Melti]

Marilyn,

we "met" recently on a zoom meeting (,I'm mel from kent) and I very much enjoyed your positive and upbeat company on zoom.

I'm so sorry to hear you have since then been having these problems. In fact we talked about the problems some of us have in getting hold of enough pred to adjust our dose when we think necessary, and I hope you now have enough pred to follow the advice of your ophthalmologist.. (can they prescribe it?)

I find it extraordinary that the rheumatologist is making decisions that don't seem to take into account your previous GCA history and your very understandable concerns.

I do hope you find a more proactive and understanding rheum, perhaps with the support of your son and DiL.

All good wishes, mel x

[Grammy80]

So thoughtful of you, Mel~! I could probably get my hands on some from the opthmologist but then...what do I do about monitoring down the line. It is supposed to be the rheumy's territory when it comes to steroids, the other practitioners usually steer away.

So good of you to share your thoughts with me...we will be working on getting it together and getting to that positive space! xo

[Blackcatlover]

When I was having vision problems I played the “it’s your fault if I lose my vision “. I told him I was scared and wanted to do whatever would save my vision. Don’t be conservative. Give me my best chance to save my vision. Don’t guess. He sent me to the hospital for an IV of methyl Prednisone. It’s not what he chose to do but I played the” if you’re wrong I lose my sight”. Be strong like you always are! You are an inspiration!❤️

[Grammy80 in reply to Blackcatlover]

💖

[SnazzyD]

😖 I suppose the only positive is that there is one professional who does recommend the 20mg as opposed to none. The risk of getting them together is that the rheumy persuades the Optho that he is right. As for normal labs....Pissed off indeed.

[DogAgilityObsessed]

I’m not surprised you are pissed off. I would be too. But as SnazzyD says you have got one professional in your corner. I’ve no advice but wanted to send a virtual hug across the water to you

[HeronNS]

Not to mention that GCA can be present with normal markers:

ncbi.nlm.nih.gov/pmc/articl...

Hang in there - we are in your corner, as is the ophthalmologist. The eye specialist is the one who sees more of these problems and is the one who really knows.

[Topcar]

Really feel for you 😢 go with your instinct and stick to the higher pred nothing is more precious than your eyesight!!!! My markers have come down since GCA diagnosis in April but can't shake off late night symptoms so my GP said not to hesitate in upping my pred immediately as the risk is too great to wait for another rheumatology appointment. Wishing you well hang on in there 🙏

[Grammy80 in reply to Topcar]

💖

[SheffieldJane]

I would also feel p***** off in your situation. I had a conflict between my Rheumatologist and Endocrinologist once, that really wobbled me and made me feel very alone. I never quite restored my equilibrium.

Definitely err on the side of caution and go with your Opthalmologist’s opinion and evidenced advice! They have the most relevant expertise. We can deal with the luxury of avoiding Pred side effects when the potential crisis is passed. Keep the bulletins coming. Be strong! 🌸🍀🌸

[tomma]

Sorry to hear this. I had the same issue. After 2 weeks of finally tapering completely I woke up one morning and couldn’t see out of right eye for about half an hour. Rang rheumatologist who got me into the fast track stroke unit to make sure no underlying issues as my markers showed normal, all tests were clear. Also saw ophthalmologist who confirmed gca still active so back to square one with 60 mg steroids.

Good luck with your journey

[Grammy80 in reply to tomma]

Oh, I'm so thankful that your sight returned and the ophthalmologist was right on it. Please keep in touch. Remember, you don't have to travel alone with this wonderful bunch. They have kept my chin off the floor more than once. You will be in my prayers!! xo

[herdysheep]

What a horrendous situation to be in. If it were me, I would up the pred. What little sight you have left is too precious than the consequences. Changing rheumy would be next step. I like the threat of if I loose my sight it is down to you, to see if some change in attitude can be gained.

Wishing you well

[Tawnyowl1]

I just wanted to send you positive vibes and hope you get the correct treatment that you need. Best wishes xx