IAM having a moan,so I'm sorry.

[Harrywogan]

My sister who has very bad arthritis, and was on methotrexate for years was taken off it, has had such a bad time having had sepsis and deep vein thrombosis and always in pain, hate to say even with my PMR I feel lucky I know what a comment to make as we all hate this illness. She had to fight to see her Rummy, and then he phoned her at home and she saw him next day, she now tells me she has PMR, on 20mg for a week then 10 for a week, I was very concerned after she told me she lost sight in one eye at top of stairs but didn't have any pain in the head or jaw I told her about GCA and to see GP don't want to put wind up but she has to be aware of this hope I've done right thing, xx

[SheffieldJane]

you absolutely did the right thing. One in 5 PMR patients go on to develop GCA and many have had it all along. She does need to be investigated for it as a matter of urgency and for her dose to be increased to deal with the dangerous inflammation that could end up costing her, her eyesight. You did the right thing. You used your knowledge to protect her. This is even though the presentation was unusual with the loss of sight in one eye being the presenting symptom. I hope it was just a warning and not a permanent loss. She is lucky to have you. Let us know what happens.

[Harrywogan in reply to SheffieldJane]

Thanks SJ IAM very concerned, she doesn't realise how bad it could be, and I don't want to worry her to much, phoned this morning and she told me she had case packed for hospital just it case she get a quick call, x

[PMRpro Ambassador]

Absolutely if you ask me. But I am concerned about that approach - met no-one yet that drop in dose would have worked for! Has she told anyone else she lost vision? It could also be a sign of a mini-stroke so it needs keeping an eye on (sorry about the pun). And if it happens again - call 999 and hope for an ambo.

[Harrywogan in reply to PMRpro]

Hi ambassador, she got a steroid Jag 2weeks ago and was told it would last 3 months but only lasted 2 weeks, don't understand the drop she has yo do ,but that's the Rummy telling her that and he wants to see her after Xmas, her inflamation level must be high, I told her to ask about it ,xx

[PMRpro Ambassador in reply to Harrywogan]

She needs a different rheumy who knows what they are doing. A steroid jag will never last 3 months in PMR - the original work used them every 3 WEEKS at the outset.

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

So your job at the moment is to get her to see that!!!!!

[BLUEPMR in reply to PMRpro]

I was worried about the handling of the steroid treatment too and the sudden drop in dose. Now with the sight problem too wondering if the pain around the eye went unnoticed because she was suffering so much pain already. How good she has such a caring brother

[DorsetLady PMRGCAuk volunteer]

Yes you have, and always best get any sight disturbance checked out with or without headache..

hope it's treated as asap..

[Harrywogan in reply to DorsetLady]

Hi DL hope you don't get my post twice maybe didn't go. my sister is very head strong and does what she wants, told her Rummy that I had it so she didn't really listen to him as I know all about it and I'll help her have to say that did Piss me off,hope that doesn't sound selfish but feel I've enough dealing with my own.

[DorsetLady PMRGCAuk volunteer in reply to Harrywogan]

No only once….and yes you do have enough issues dealing with your illness… and siblings don’t always listen… but if you can she does need to be “persuaded” to discuss with doctor…. Good luck… 😊

[Harrywogan in reply to DorsetLady]

She does know I'll always be there for her but very very hard work, she is widowed and lives on her own, x

[DorsetLady PMRGCAuk volunteer in reply to Harrywogan]

Don’t blame all widows that live on their own -otherwise you’ll have PMRpro and me to contend with…😳😂🤣

… but I get what you are saying. 😊

[PMRpro Ambassador in reply to DorsetLady]

DId my ears burn????

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

🔥🙉🔥….

[Grammy80]

As others have said...you certainly did the right thing. I have GCA and that method of medication would never work for me. I truly hope she can get this looked into ASAP.

You have a lot to contend with yourself....you can only try to get her on the right track...if she doesn't listen or take steps to care for herself, you can do no more; it is out of your control. Obviously, you care...but you just can't control others. 💞

[123-go]

Hello Harry. Your post has only just now appeared in my ‘Daily Digest’!

I’m able to empathise with you as my husband was diagnosed with GCA some months ago and I know the sinking feeling of possibly having to cope with someone else’s illness on top of your own. I suggest that you try to convince your sister to contact her rheumatology department and ask for an urgent call from the specialist nurse where the question of pred dose at least could be discussed and concerns expressed. Your sister won’t know at this stage what questions to ask so you will need to advise her and get her to write them down. If you are close geographically to your sister and a call is arranged could you be with her to act as her advocate with the call on speaker?

How was PMR diagnosed?