Hi Everyone

[shekinah66]

Thank you all again for being here for me. I did end up at the Rheumatology day unit yesterday afternoon to be given an infusion of 500mgs of a different steroid Solumedrone and then a blood thinner or water to flush through the steroids.

I was told they would start taking effect this weekend and this would decrease over two weeks plus from Monday to take 20 mgs a day of prednisolone in tablet form.

Its 00.45am and woke at midnight with another migraine and my jaw hurting and it hurts to type from my phone plus my right eye is painful too. I will see how I am later today.

Oh and i was weighed on two different hospital scales and i had gone down to 100 - 1001 kgs which is 15.7 - 15.9 stones, basically I had lost 8lbs in weight between 4pm wed to 4pm yesterday, i got home and my digital scales had gone up to 16.1 stone and then I weighed myself just now and the scales read 15.13 stones. I know when i weigh myself in 5-6 hours my weight is going to go down again. Tell me surely the hospital scales should be more accurate!!!!.

I've ordered myself a new up to date amazon choice/best seller scales and all the reviews were excellent plus £20/$25 off the price.

I'm going to try and go back to sleep now

Thank you all again💞🌺

[SheffieldJane]

Great to hear from you. You must feel pretty wired up but hopefully, safe, safe, safe. That’s what I do, Chuck some money at it and go to sleep. They clearly seem to be treating you for GCA. Let us know when you know more yourself.

[Judyliz]

Just wanted to mention about the scales, I retired recently having worked for many years as a health visitor in the NHS. Our baby scales were checked and calibrated every 6 months as were all the scales in the GP surgery in which I was based.

I know the neonatal unit and children's units in local hospital had all their gadgets checked regularly too.

I don't know if the other specialties in the hospital are the same but can't help thinking there is probably some sort of contract in place.

It is a big difference so I can see why you mentioned it.

Hope when you are up and around today your head is more settled albeit with a level of tension that is bound to be there.

A scary time for you.

[PMRpro Ambassador]

The only truly accurate scales are the old-fashioned analogue ones where you move a weight on a bar, which are calibrated regularly and standing on a perfectly level surface. Digital ones are not as reliable and can vary a lot just because of moving them from one position to another. But the hospital ones are checked regularly - or should be,

You can only compare results from the same scales otherwise to track weight gain or weight loss, otherwise the weight is more a guideline. The odd couple of pounds is neither here nor there.

[S4ndy]

I have kept to the same scales in my GP's surgery. I know from that I've lost 6kg . I am just fine knowing the weight is going in the downwards direction 😀

[anutycrixp]

Hope all your treatment is successful ! Scales,just out of interest one lent I weighed myself twice a day..same time,same birthday suit and plotted a graph.No dietary changes etc.I was intrigued by the fluctuation in weight ;sometimes 5-6 lbs in a day .When plotting average weight however it was stable.So no odd few pounds are immaterial,there is no "absolute weight "for a living body, just average weight measured over a period of time I suppose.Best wishes.

[HeronNS]

You've been given a large dose of methylprednisone. But if the serious symptoms don't settle you need to go back. I suspect you should have received good relief by now, and if you haven't please phone or see someone. Furthermore, if you do have GCA, fairly quickly reverting to 20 mg pred will not be enough.

Just to clarify - you have been given one infusion of Solumedrone and told to start taking 20 mg pred on Monday? Or are you having ongoing infusions for a few days?

I'm not sure about this, hopefully another contributor to this forum will know the answer, but I think the prednisone class of drugs is absorbed and then excreted fairly quickly so I am a bit puzzled about the plan to have you on only 20 mg pred as of Monday.

[shekinah66 in reply to HeronNS]

Hi no I am not having any more infusions but I dont know why I am being cut down to 20 mgs of prednisolone per day either. As of tomorrow apparently though this should last two weeks it starts becoming less effective. I will speak with the consultant next week and a nurse on monday

[PMRpro Ambassador in reply to shekinah66]

Did they say they thought it might be GCA? If so - that is not the way to go about treating it. Starting with high dose infusions is OK - but should usually be for 3 consecutive days and then switching to about 60-80mg/day and tapering steadily.

I know it is hard as a patient to question what they are doing - but it may be the difference between success and failure.

[shekinah66 in reply to PMRpro]

Hi yes GCA was confirmed two weeks ago Friday. Do upu know how long I should be on 60-80mgs for and how slowly I should taper the dosage down please?

I take it you are a doctor but apologies if I'm wrong

[PMRpro Ambassador in reply to shekinah66]

No, not a doctor.

DorsetLady and Snazzy are the GCA patient gurus - they have both had it.

But this

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

discusses the use of i.v. initiation therapy - and they support 3 days of 1000mg/day followed by oral prednisone "maintenance therapy at an initial dose of 1 mg/kg/d" which for most people would be IRO 60mg/day and possibly more. A single dose i.v followed by 20mg day is cearly not considered enough.

[shekinah66 in reply to PMRpro]

Hi i sent the article above to the rheumataology dept im under at the Oxford hospital and i received this reply just now

Thanks Page.

If you google Prof Raashid Luqmani, he is a world expert in vasculitis including GCA, he in fact co-wrote many of the current guidelines, and he is the head of our department.

Best wishes,

Helen