Still problems with tapering

[Poppylop]

Hi all, hav'nt written for a few weeks but just wanted to fill you in on what's been happening taper wise, as I've said before had the scans, told no GCA, told to reduce 5mg every 3 days from 40mg, got to 30mg and started getting temple pain, scalp tenderness and slight blurry eyes, emailed rheumatologist told to go back up to 35mg and wait for appointment, I put it up to 40mg to be on safe side, well I've had my appointment in the flares clinic, had the scans done again, still told no GCA, the Dr even said he didn't think I had PMR either because I was too young at 53, they don't seem to take any notice when I tell them ive spoken to loads of people my age on here with it 🙄, anyway I had 7 tubes of blood taken and urine sample as he was testing me for other stuff, which I still havnt had results back . He told me I needed to get off the pred because I had been on a high dose for about 8 weeks and he kept saying how dangerous it was for someone of 8 stone to be on a high dose and said I could have a stroke or heart attack, talk about scare mongering , I pointed out to him that I had been on it so long because my rheumatology appointments kept getting cancelled. He said I had to reduce by 5mg every week instead of every three days, I asked him if that was still too quick and told him about how people on here do it but I don't think they like us going on forums, he said no it's not too quick, well guess what, I got to 30mg and the same happened again, I emailed again and have been told to go back up to 35mg and wait for appointment, my appointment is on 3rd Dec so I will be on 35mg for a few weeks so I'm hoping that will help, the headaches have only just started to ease off a bit after taking 35mg for 2 weeks, I'm also having a dexa scan that day which I had to ask for, I asked the first rheumatologist and she said I didn't need one, at least this one has agreed. I'm going to be firm this time and tell them I need to reduce a lot slower, because it's just a vicious circle, same thing happening each time. I would love to get off them quickly as I've not been having a great time on them but it's just not do-able. I've felt so fed up the last week that I've been really bad with my eating, I had pretty much cut out all carbs and most sugars, but we've been in Edinburgh this week and I've eaten everything in sight🐷, mostly carbs and sugar, so back to being good next week😔, sorry for the long post x

[SnazzyD]

Ooh dear, I’m not surprised you feel down hearted. I think it is very unfair to blame you for their perceived extended period on high dose when it is the system that is forcing it. It may be a blessing in disguise though. I’m not sure about the validity of the scans now given that you’ve been on Pred for a while and sensitivity of them is probably impaired. It rings alarm bells when anyone says low 50’s is too young because it makes one think they haven’t kept up to date which isn’t confidence inspiring. Any chance of a second opinion?

As for the Edinburgh carbs fest trip up, adjust your hat and carry on walking. Don’t beat yourself up as I expect some of that gave you comfort in all the worry, but do restart with renewed resolve so you don’t come a cropper later down the line.

[jinasc]

Where do you live?

[Poppylop in reply to jinasc]

In banbury, Oxfordshire, it's the nuffield hospital in Oxford that I've been going to

[jinasc in reply to Poppylop]

Professor Raschid Lugmani University Hospital Oxford and the Nuffield.

Put him in your search engine.

One of the top people in GCA..............he helped us when we were looking for information in relation to the 'Your Ears' research. He was also the leader in the UK of the TABUL study. (Tabul Study - use of Ultrasound in GCA).

Raschid has been the medic of a close friend who has one of the most complex cases of GCA and PMR for the past 10 years. Without him, goodness knows where my mate would be now.

If I were you I would ask to see him as you are already at the Nuffield.

[Blearyeyed in reply to jinasc]

Great advice , surely if anyone can help would be able to sort out the confusion in this diagnosis and let poor Poppylop finally get comfortable on whatever medication and steps she needs to take.

I would definitely ring up , explain the chaos and politely request via his Secretary if he can either be your lead , or at least sit in or review your consultation.

Good luck and stick with your 35 mg until you get to see them , a few more weeks without the Stress and fiddling about won't make much difference.

[Poppylop in reply to jinasc]

I think I'm due to see him when I go, we'll it says Dr Lugmanis clinic, so hopefully I will

[SheffieldJane]

Edinburgh does that to you. Dust the crumbs off and carry on. We need some comfort!

I am sorry that you seem to be surrounded by incompetent medics who simply have’t kept up with the latest research or treatment protocols we discuss on here. Then the “ patient blaming” that is reprehensible really. Stick to your guns. My Rheumatologist loves that I come on here and I suspect she comes on herself.

[PMRpro Ambassador]

That's the trouble with Scotland - far too lovely carbs! I confess - even I get tempted!!!!

Just because it is his clinic doesn't mean that is who you will see. You could be stubborn and insist on seeing him.

But what is the point of the fight by us and doctors who HAVE seen the light to get the age criterion changed if doctors don't take notice? Or read all the other publications in the medical literature that warn against assuming that you can't have GCA in under 50s? Or, if they HAVE got a young patient not look for evidence of Takayasu's??????

[guitarzan]

Way too fast on that taper from what I've seen. I feel effects at a 1 mg taper. I think sometimes that the Drs. don't have as good an understanding of our bodies as we do. They look at numbers and sometime they just don't listen. I would take it slow and let your body tell you, If you are feeling pain typical with your disease do what you know to make it right so you can function. Hope you feel better.