advice on dropping dosage

Amycakes

I am not the best person to advise you on dropping as I do not have PMR, but do have GCA.

I had blood tests every month whilst I dropped down.

The CRP rate was more important than the ESR and its also how you feel.

I dropped by 2.5mg each time till I reached 10mg, then it was a question of 1mg per month until I reached 5mg then it was 1mg every three months.

This was the pattern set by the Rheumy.

However it did not go to plan, as I had two flare-ups at different times, but each time was able to drop down more quickly to 10mg.

There are many ways to drop down and if you read Ragnar's story on www.pmr-gca-northeast.org.uk, you will see a method that lots of people have used. Its also on this site, just type in Ragnar or RDSwede and his posts will come up.

However, I am sure that someone with PMR will be along shortly.

Hello Amycakes

MrsK has already given you good advice about dropping. My experience in suffering from both PMR and GCA has been that both my ESR and CRP blood tests were carried out prior to each reduction - if my markers were raised, I was advised to stay put for a bit longer. I was lucky in that my markers always corresponded to how I felt at the time - if my pain level increased then so did my markers.

Although I experienced 2 or 3 flares, they were always flares in PMR not GCA.

Perhaps I was lucky in that my blood test results always corresponded with my pain levels and I was able to follow the usual recommended reductions down to 5mgs (then the fun began!) and on the rheumatologist's advice I managed to reduce from 40 to 15mgs in 6 weeks.

If I were you, I would go by how you are feeling at present......has your pain improved and stabilised at a comfortable level? If so, then perhaps a reduction of 2mgs from 21mgs to 19mgs could work, bearing in mind that any increased pain following the reduction can be due to steroid withdrawal which should ease up after a week or so. If you feel happier to take it more slowly then you could try 1mg, staying there for a few weeks and if ok then you could try a further 1mg drop.

As our bodies are all so different in how they react to both the disease and the steroids, then there really is no hard and fast rule - it seems very much to be a case of finding the reduction routine that works for you. Mainly, as you are someone who has experienced raised blood test markers, then those tests prior to reducing can be a very helpful guide as to whether you should reduce or not, plus, of course, your pain levels at the time.

MrsO

Hello amycakes......... I have been coming down from 20mg at 1mg a month..... the first drop was from 20mg to 18mg and then 1mg a month after that...... have had no problems and have felt quite comfortable apart from the usual steroid side effects and a week after the drop where I hurt and have tingling in feet and lower legs...... pred withdrawal.....

Good Luck with your reductions... 8)

Forgot to say I don't have blood tests now, before a drop, to look at 'markers' as they have never been very elevated even when I have been rolling around in pain :roll: Rheumy just goes by how I feel and pain levels..

Hi Amycakes

I have always had blood tests before my reductions Every month at the beginning but now Im on a lower dose its every 2 months My bloods do show how I am feeling even though my raised levels are much lower than everyone else !

Your Dr really should have gone through this with you They should have said how often they wanted to see you and have given you a plan for the next month or 2 months as they are also supposed to do reg tests for blood pressure , diabetes , ( weight My Dr and I have agreed to skip that one at present !! )

It is more difficult to see how people are doing if their bloods arent an indication of how you are feeling

Best wishes

Mrs G

Hi Amycakes - given 20 is a nice round no, if it were me, I'd try the 1mg drop to 20mg and if that feels good after 2 to 3 weeks, drop again to 19mg. What seems to cause most problems is big steps whilst keeping the steps as small as possible allows many people to continue on a smooth downwards curve without too much discomfort. This isn't a race, it's called titrating the dose to find the lowest you can manage on. If you try dropping 2mg and it makes you feel bad, you haven't achieved anything. If you drop 1mg and it works, you'll be able to do the next attempt and still have arrived at the same place. :D

Eileen

Thanks to you all for your advice, much appreciated.

Because I first went private , & then my insurance ran out, I hadnt seen my G.P.

Anyway I have managed to get an appointment with the private doc in his clinic on the N.H.S Probably wont see him , but one of his team I guess, this is in August, so I also will make an appointment with my G.P, who has shown an interest, & has been pretty good in the past.

My private doc didnt seem to be interested in blood tests though, & I had them done with my G.P. last time.

Will make sure in future to ask for bloods to be done.

Also when I asked for vit d test, was told my surgery doesnt do them, but I am taking calcium & vit D supplement , I have also had a bone scan & all was well.

No osteoporosis.

Havent felt as good these past few days, so will take things easy & wait till I feel better & after bloods to see how things are.

Thanks again to you all, great to be able to ask these questions .

I have managed to come down from 50 mg just before xmas, so feeling pleased to have managed that without flare ups so far, want to keep it that way, so taking all you have told me on board & keeping my fingers crossed all will be well.

Thank you again my friends.

Amycakes.

Hi Amycakes

Im assuming that as you started on 50mg you have GCA& PMR ?? (Sorry cant remember everyones stories )

If this is the case you will need to see Dr reguarly for a few years It is easier if you can either see your own Dr or if you are overseen by a Rheumy to see the same one reguarly so I think it would better for you to have reg appointments so your Dr can get a better picture of how everything is affecting you

As my bloods do tell the story I keep records of my bloods and my doseage and when I reduce or have to go up and why Its so easy to forget all these things with steroid brain ! Even my Dr didnt think I needed a Vit D test and she is very good on tests and things

Hope you feel better today

Mrs G

Good morning everyone!

My Dr told me last week that he doesn't do Vit D blood tests and was surprised to see I'd had one! I sneaked in through the back door on a previous appointment with a new young Dr to the practice and asked him! :wink:

MrsO

Yes Mrs O, I have G.C.A. as well.

I paid to see a rhuemy, but he was a waste of money, even though I told him I had blurred vision & lost sight partially for a few seconds , & on that day I was crying as I had to drag myself there, he said I didnt have P.M.R. he just referred me to a Neurologist for an M.R.I. scan. I later saw the Neurologist who straight away said P.M.R. & G.C.A. & put me on 50mg.

Improvement straight away.

So as you can tell I have no faith in some of the medical profession at the mo.

I shall probably keep with my G.P. as he is understanding & the lady doc, in fact he said P.M.R first & put me on 15mg, then everything went weird & I ended up in hospital pains in back, which after 3 emergency admissions [they said panic attacks] turned out to be a clot on my lung, anyway, another private doc stopped the steroids & things went from bad to worse, wont go into it now, but I have put it on here before when I first joined .

So scared to death ,I am dropping very slowly, usually doing my own drops, not with docs help as yet. as I said before , I have learned more here than any doc.

I just think I should get more blood tests done , so I am aware of the numbers etc.

Thanks again for your concern.

Amycakes.

sorry that should have said Mrs G

Amycakes with treacle brain!!

Amycakes

I see you live near Hastings and wondered if you would be interested in a new Support Group which is being set up in the West Sussex and Brighton area.

I am unsure how far it is from you, but the people who are starting it up have both PMR & GCA, one longterm.

The details to contact them can be found on the North East website, under Support Groups.

It can help to be able to talk to people face to face.

Just a thought.

Thanks Mrs K,

I will look into it.

Cheers Amycakes.

Hi Amycakes

I do remember now It would be nice if when someone posted you could just click on a very quick precis of their story !!

I think you just have to think longterm with this which is why I have suggested your GP but Im not complicated ( yet !!) There was 6years from the start of my 1st bout of PMR to my 2nd one and my Dr remembered it was my CRP which was the best indicator of how I was !! which is why I like her and she was very supportive when I had to go back to 15mg from 4mg 18 months ago

Some people need Rheumys if they have more problems and lots of people on here see them so the only thing is to see how it goes and obviously you have gained a lot of knowledge yourself

Best wishes

Mrs G

Yes, Amycakes, you can find our contact numbers on the website so if you want a natter at any time, do give us a call - we've also got an email address there too.

Nefret/Catie