Letter from Rhuemie

[Suffererc]

I ave received a letter from the Rhuemie am going to add a paragraph if I can. I was angry when the Rh used my landline as I am hard of hearing. My husband (At my request) answered many of the questions put without me knowing what the questions were. He also gave inaccurate info which I now read in this letter. My husband remembered me going up to 30mg but didn’t explain what for. Here the Rhuemie is saying ‘off steroids within 2 years’. I am now starting to taper to 61/2 mg using DLs plan. The drug he wants to introduce is Methotrexate. I didn’t say I wouldn’t take it. I said I want to discuss first face to face not thru someone else

[Koalajane]

Amazed that he says be off steroids within 2 years. Who is he?

He doesn’t seem to know much about PMR

[Suffererc in reply to Koalajane]

A Rhuemie

[DorsetLady PMRGCAuk volunteer]

So much for the “Excellence in rural healthcare” banner at top of page!

Has he referred you back to GP? And does GP sign off your prescriptions?

He obviously didn’t listen to what was said either by you or your husband.

My advice, stuck with your tapering plan - don’t see the point in adding on MTX when you’ve managed to get down to 6.5mg without it.

[Suffererc in reply to DorsetLady]

Yes referred back to GP. Waiting appointment. I wasn’t included in the consultation much of the time. GP signs my prescriptions but she will agree to his plan because she also thinks 2 years the limit

[DorsetLady PMRGCAuk volunteer in reply to Suffererc]

Oh dear....well I think she’s about to be proved incorrect in her thinking.... and she cannot force you to take MTX.

[ChinaWuntoo in reply to DorsetLady]

I refused to accept my rheumatologist's suggestion of tapering from 10 to 71/2 and he referred me back to GP who agreed to my very slow taper after discussion. Rheumatologist said he'd write to GP and copy the letter to me. After two weeks I sent an email asking for my copy. Still waiting, will give it to a third week and then call GP to ask for a copy. I fear what he might have said. On this will depend whether I complain about his various bad bits of advice and offhandedness (to put it politely).

The rheumatologist gave me no opportunity to discuss the matter and didn't explain why he was suggesting such a major taper.

[DorsetLady PMRGCAuk volunteer in reply to ChinaWuntoo]

No wonder we despair at times!

[PMRpro Ambassador]

A perfect example of why the rheumy should have complied with YOUR request. His advice is based on incorrect information. It is one thing to tell a patient on 30mg after 2 years of PMR that they need to try a steroid-sparer, another matter altogether for a patient on 6.5mg where the mtx isn't going speed things up because the adrenal function aspect is key.

I have to do the same thing for my husband as he can't cope on the phone - but I probably know more about his medication than he does!!!!

Keep detailed notes and don't be bullied.

[Suffererc in reply to PMRpro]

Yes I can hear on my mobile with ear phones. Not everyone tho. I have high frequency deafness. I was supposed to have a virtual consult but asked to rebook so was surprised by the landline call. My GP always rings my mobile

[Pippah45]

Can you hear on your mobile phone? If so I would insist and I mean insist! On a consult that way. I too am quite deaf but my mobile works for me. I had an issue trying to use mobile banking to send my daughter money when away from home. Had to go to a local branch and fraud dept wanted me on landline in the bank. It was impossible! Shocking treatment for a disability! Not the first of course but i insist on hearing what is said!

[PMRpro Ambassador in reply to Pippah45]

We finally ended up with a "special" lady in the fraud department at one of our banks - she is kept as free as possible for the over 80s on the phone!!!!! It's their insistence on speaking to the specific account holder that ends up snookering us as I just cannot cope with all the security stuff. Anyway - this lady specialises in dealing with the hard of hearing and she was amazing - spoke slowly, clearly and had no strong local accent (also seriously important) so that even himself understood!

[Suffererc in reply to PMRpro]

That’s the thing with the hard of hearing .... people talk so fast as tho their seat is on fire. Accents make things difficult too even to the hearing folks.

[PMRpro Ambassador in reply to Suffererc]

My hearing is still excellent. I had a long running problem with Vodafone (don't a lot???). Initially my calls went to the Scottish office and the techies - the only people who knew what the problem was and that there was nothing I could do about except ask for my money back, it was their problem. No problem there, I lived in Scotland for a long time. Anyway - then the call centre was moved to Yorkshire - I lived in the NE, I couldn't understand a word the young man said! Then it was moved to South Africa - also difficult to understand. I felt sorry for anyone with hearing difficulties fighting Vodafone ...

[Pippah45 in reply to PMRpro]

Mine was a real beast and when I got home I complained to my bank manager. He said he puts them on speakerphone so he can be sure the client has understood and assist if necessary. Much more sensible. I have a Big Tom for my landline and can hear the cordless but not the corded phone.

[Suffererc in reply to Pippah45]

Sorry my Reply message went to PMRPRO In error

[Pippah45]

No worries.

[kulina]

You don't say how long you've been on Pred but at this point that doesn't matter, you're on a low dose. Don't rush the reduction, make sure you listen to your body, not the doctor's timeline. When I was at 5 mg, and so excited about my progress, my doctor wanted to give me Methotrexate and I refused. I felt that I was making really good progress and disappointed he didn't share in my excitement. I stuck to my guns and now I'm down to 3 mg. I didn't see a point of adding another medication that has its own side effects. Good luck and don't let the doctors stress you.

[PMRpro Ambassador in reply to kulina]

Especially at 5mg!!! Whatever was he thinking of?

[Jackoh in reply to kulina]

😱😱x