Follow up from Dr Hughes appointment

[Lochy]

Well I must say I had a very successful appointment yesterday with Rod Hughes. A long way to travel from Edinburgh but well worth it.

Summarised my symptoms to date and he explained in comprehensible language where he thinks I am at and suggested a plan for me to hopefully move forward.

He noted my regularly elevated liver function tests, which have pre dated my PMR diagnosis but continue to be out with ‘normal’ levels. I explained the knee problems I’m having with swelling and pain which have been treated with steroid injections and fluid removal.

He suggests I try hydroxychloroquine as it is not a hepatotoxic drug and would be a far safer alternative to methotrexate considering my liver issues. He feels my PMR is morphing into something else either RA or an inflammatory arthritis or something a bit unknown. My tapering had been going fairly well but I was a bit stuck at 10mg and it had taken me better part of 2.5 years to get there and with the knee pain all in all it was getting me down. I recognise I need to try something else.

He also came out with one of the most sensible statements I’ve heard on this long journey. In response to my saying I didn’t feel I absorbed whatever steroid dose I was on and I fortunately didn’t suffer too many steroid side effects he said “ those people who don’t show many steroid side effects often are those who aren’t getting the full benefit of the dose” I know PMRpro has often mentioned different absorption rates for different people but none of my health professionals acknowledged this.

Dr Hughes has encouraged me to find the correct dose for me and stabilise on that for a few weeks and in particular whilst I start the new drug. He’s writing to my GP and local rheumatologist with his suggestions so hopefully we are all aligned. I’m seeing my GP on Thursday so am hoping I’ll get the prescription. He has also suggested that I get an updated rheumatoid factor blood test to see if I have changed from sero-negative which can happen apparently! I might be one of the 1 in 6 who’s PMR gets rediagnosed

So I feel happier at the moment and have everything crossed that the hydroxychloroquine has some positive affect on whatever I have!

[SheffieldJane]

That sounds like a very productive appointment. Let us know how you get on.

[Lochy in reply to SheffieldJane]

Thanks Jane. I will let you all know once I’ve seen my GP and hopefully start the drug.

[Hidden]

👏🏻👏🏻👏🏻 I loved Dr Hughes! I'm so happy for you!!!! Good luck!

[Lochy in reply to Hidden]

He is a lovely man, with such a nice manner.

[Hidden]

Hi Lochy

Glad your Appointment went so well! Did you see him Privately or did you manage to get an NHS Referral?

Thanks

MrsN

[Lochy in reply to Hidden]

No I went privately and as I live in Scotland we can't have referrals south. Also I was pretty desperate to see him so happy to pay. He was worth it.

[Hidden in reply to Lochy]

I’m moving Surgeries from Wales to England so l’m obviously being discharged, so when the dust settles l think l might have get a referral to The Man Himself for an overview.

Thanks for the information.

Angela x

[bunnymom in reply to Hidden]

What ever came of your liver issues? Did you get some answers?

[Hidden in reply to bunnymom]

Hi Bunnymom

Yes afraid so & waiting on more tests, hadn’t felt much like writing about it as a post yet.........

I have a Severe Fatty Liver & my Pancreas is affected also, they took some more specific blood tests to check for any clotting issues etc. I have to have a Fibroscan but that will have to arranged via my new GP/Consultant as we now live in England

The positive news my Cholesterol is Normal, so No Statins & No evidence of Diabetes or even a suggestion of so that’s good.

I’ve started my new diet & joined the NAFLD Group on HealthUnlocked. Diet is the only way of making any changes to the Liver but we’ll know more when l have the Fibroscan done, as that shows any stiffness of the Liver, which is not good as it indicates it’s progressed further. It’s completely symptom free as is all things with the Liver, it’s OK until it isn’t! The diet is fine so far but No Wine ☹️ still hopefully l’ll shed a few pounds!

So that’s kind of where I’m up to at the moment & I’m just on 7.5mg Pred (last day of taper today from 8mg) so that’s great!

Hope you’re doing OK?

Angela xx

[bunnymom in reply to Hidden]

Keeping you in my prayers. We do face many physical challenges. Wishing you the will power to do what you need to do to regain your health. I am holding at 8 till Xmas is over then a slow reduction to 7.5. Finally feeling pretty good today. Happy Thanksgiving or is that the US?

[PMRpro Ambassador in reply to bunnymom]

It used to be said we had thanksgiving because we got rid of you...

[Hidden in reply to bunnymom]

Yes, my initial plan was to stay at 7.5mg until after Christmas too but l’ll see how l feel next week?

Glad you’ve had a good day, l’ve had a good day too, staying in all cozy & warm avoiding November!

Thank You for remembering me in your prayers 🙏🏼

Thanksgiving is a American Tradition, l’ll have to get sending Greetings on Facebook in the morning.

Take Care

Angela xx

[York54]

Sounds like lots of positives have come out of your appointment. Good luck 👍👍👍👍

[Jackoh]

So pleased all went well with your appointment. I see Dr Hughes and he Is very supportive and actually listens to you!!