Back up to 15mgs of pred AGAIN!

[lynabelle]

Hi everyone , just thought I would let you all know that I am still here , well having got down to 11mg my head pains and jaw pains were so bad I rang the doctor rather than go to a&e as I did not have the energy to wait around for hours.

Am I having a flare or is it because I am coming down on the steroids ?

I asked, the reply was stay on 12 mg for 4 weeks , so I upped the dose by 1mg and it made no difference so this morning I went back to 15mg and I am beginning to feel better all ready.

Can't wait to see the rhemy in 2 weeks who wanted me to be down to 7.5mg by now, boy does he have a shock coming to him, do these doctors not know that we are all different and what works for one person , does not always work for another. I have so much to tell him , got down to 9.5 , doctor put me back to 15 as my esr went up , then came down to 11 and back again to 15.

My daughter said the other day that she did not think they put me on a high enough dose in the beginning , they put me on 30mg what do you think?

[polkadotcom]

30mg does seem to be a bit of an undecided starter dose, generally it's 40mg if GCA is suspected, 60mg if TA is also suspected (or proven) and 15/20mg for PMR, although the lower dose is becoming increasingly used for new patients.

Now that you are back on 15mg, you could keep a daily diary until you see the Rheumy - by that time you should know if that dose eliminates all symptoms or if there is still some pain in the head/cranium which should at least be noted.

I agree that a lot of the Rheumatologists still seem to have very odd ideas about treating us, but they won't know that (or take any notice) until they are told so - firmly! That's our mission to educate doctors and rheumatologists now. I've told several in the past that the only thing I claim to be an expert on is me and they aren't sitting in my chair.

[corralie in reply to polkadotcom]

Hello pokadotcom

Can you enlighten me, please.

I thought GCA and TA were the same thing?

Thanks

Corralie

[lynabelle]

Last time I saw him I asked him if I had pmr and he said no as my neck and base of my back lock so I can hardly walk , he said I have a degenerative spine? How does he know that I have not even had a dexa scan done yet! I am going to be more forceful this time and write everything down that has happened in the last 3months , will let you know how it goes x

[BromleyPen in reply to lynabelle]

Polkadot's suggestion of the daily diary is really good thought.

Last time I visited my GP I was worried as I took a chart I had worked out for my reduction - only half a mg per four weeks of pred - not as much as he had suggested on the previous visit. (I had a mini flare up about a month before and had to go back to a higher dose). I was also expecting a rocket as I had made major changes to my diet and cut out all inflammatory foods. I was very pleasantly surprised as he seemed pleased that I was taking responsibility for myself. Said 'good' to my reduction plan and checked the diet and said 'looks good'. So far, touch wood, both reduction and diet are working exceptionally well.

You know already what hasn't worked for you so why not go with the diary and a plan for the future.

Penny x

[polkadotcom]

Corralie, they are the same thing but that you can have GCA without the temporal arteries being affected - in that case the inflammation is usually in the medium large arteries. If you have TA i.e. inflammation in the temporal arteries (and sometimes cranial arteries) then you have TA which is also GCA by definition. It is confusing, but occasionally now you do get a medic making the distinction which confuses new patients even more!

[suzy1959]

Hi Lynabelle, if it's any consolation, I am also back up to my starting dose of 15mgs following a horrible 6-week flare. I still have some pains in my upper legs/ groin and can't walk very far but don't want to take any more pred. as I have just started to take methotrexate which the rheumy is hoping will take over from the pred and allow me to reduce it. It takes a couple of months to take effect. what a pain it all is and good for you that you are going to be more forceful with the doc!!

[lynabelle]

Hi Suzy it is soul destroying isn't it, but I am not going to beat myself up , I had a couple of good weeks on 15mgs so hopefully I can look forward to more before I start my drops again.

My granddaughter has gone back to her mother and I just have me to look after now so I can concentrate on getting better .

[Hidden]

Hi lynabelle,

I realise that you've had to go back up on the pred, but you sound much more positive and in control now and I'm so pleased for you.

Each time I see my rheumy I take a list of all my reductions and increases in the past 2 years with the reasons why I had to put the dose up and how I felt afterwards - they can't argue with it and it proves you understand the illness from your point of view, not theirs.

Best wishes,

Pats.

[lynabelle]

Hi pats

Yes thanks I am more in control again now, my granddaughter has gone back to her mother and I am now concentrating on myself , it will take time like we all now know, and I am so sorry you have had a flare when you were doing so well.