The ups and the downs

[Gaycreasey]

We don’t have any other option but to ‘grin and bear it’. Just coming out of a horrendous few weeks which started with a headache and being put on 40mgs of Pred due to possibility of GCA. GP decided as blood results ‘normal’ that I should come off the 40mgs pretty quickly. Half way down and a massive flare which resulted in paramedics as my husband thought I was having a stroke! Poor thing, he does go through the mill with me falling over and passing out! Still very dizzy and stomach not right but hopefully coming round to something like normal.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this Gay, it must have been very frightening for both of you. Not sure what dose you were on prior to 40mg, but any GP should have known that amount would bring your blood results back within the normal range pretty quickly.

What dose are you on at the moment, and what’s the taper plan for immediate future?

Any concrete evidence for GCA other than headaches?

[Gaycreasey in reply to DorsetLady]

Hi Dorset lady. I was on 4.5mls prior to the 40mls. I was heading down to 4 but had a headache and feeling very tired for about a week. The headache settled on the right side around the temple and ear. Yes, by the time I had the blood tests I’d had 80mls. My GP just shook his head when I mentioned the possibility that the high level of Pred had masked the results. He decided it was a virus and prescribed some medication for the dizziness. This I have not been able to take because it contained lactose and the pharmacist cannot get hold of any that do not contain lactose. So, still dizzy on and off and was down to 5mls after the GP’s advice to go 40, 30, 20, 15, 10 and 5. It was in the middle of that that I had the crash! I did go up a couple more today as the dizziness and tiredness are still there and some of the inflammation in my back. I feel confident enough to do this without recourse to the GP, who wants me off the Pred as soon as possible because it’s in liquid form and twice as expensive as the tablets. What a game it all is but we keep b......... gering on!!!!!

[DorsetLady PMRGCAuk volunteer in reply to Gaycreasey]

We certainly do!

As headache was one sided mainly, would question the GCA connection like your GP. But one can never be 100% sure, so best to take precautions.

Just as an aside, have been to Pilates this morning, and instructor said she’d had a lot of short notice cancellations recently due to a virus doing the rounds - with the common denominator being a headache at the beginning! May be a coincidence?

Hope you soon feel better.

[Gaycreasey in reply to DorsetLady]

Yes, he may be right. Why is it I can’t bear the thought?

[PMRpro Ambassador]

Have you seen a rheumatologist? What did the paramedics say/do?

[Gaycreasey in reply to PMRpro]

I have never seen a rheumatologist. I have only ever seen a GP. As I moved in August I’m now with another practice. Not impressed, as before I had even seen a GP I was phoned by someone at the surgery and told that I had to change to dissolvable tablets. I eventually agreed to try them but within a few weeks was back to all the symptoms. I saw a GP and told her I had to go back on the liquid Pred. She told me I should have come off that anyway within a year. ( into my third year now!) I didn’t mince my words and told her that, having told me that, I realised she knew very little about pmr.

The paramedics were brilliant, very calm and did all the tests. They were with us for about two hours and didn’t leave until my blood pressure had come down. They also contacted my GP and gave him a run down on my symptoms.

[PMRpro Ambassador in reply to Gaycreasey]

It may be just the liquid they object to - I found a directive from a hospital trust requesting doctors avoid using it as they said it is 30x more expensive than standard pred. So if yours was merely double the price she shouldn't complain!! And if you need lactose-free - you need lactose-free. I know someone whose doctor said "but there's only a LITTLE bit of lactose..." You are left to wonder which lecture HE had slept through.

Has no-one considered trying depot-Medrol injections? No absorption problems and they are included in the 2015 Recommendations.

[Gaycreasey in reply to PMRpro]

Yes, one GP I was having to deal with wanted me to take diuretics and when I explained that I couldn’t take that kind because of the lactose and that my pharmacist had found another kind that didn’t contain lactose, he became very angry and said that there was a reason he had prescribed those and if I wasn’t going to take them I would have to put up with the fat ankles! And anyway it would only be a little bit of lactose!

[PMRpro Ambassador in reply to Gaycreasey]

I hope you made a complaint!

[Gaycreasey in reply to PMRpro]

You couldn’t make it up could you? I’ve now left that surgery but do gave issues with my new GP. He seems unable to make eye contact and he has quite a cold and distant manner. The difference in the warmth and humility of the locum I saw was quite marked.

[PMRpro Ambassador in reply to Gaycreasey]

Maybe he is shy? That was the answer with the one like that at our practice - why on earth he chose general practice lord knows! Was brilliant (at lots of things other than medicine) but should have been at least a surgeon who did everything under GA or, better still, a pathologist...

[Gaycreasey in reply to PMRpro]

Well, maybe I don’t know him very well yet. He was probably right about the virus so I’ll give him the benefit of the doubt. Generous eh?

[EdithWales in reply to Gaycreasey]

How very rude, I would complain and ask to see someone else

[Gaycreasey in reply to EdithWales]

Yes, thankfully not at that surgery any more. He was not my regular GP and I was sad to leave him when we moved. I had a final appointment with him and said goodbye and thank you and he told me he was also leaving. So I didn’t feel so bad.

[EdithWales in reply to Gaycreasey]

Good