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Improving I hope !!

Posted , 2 users are following.

Mrs_G
Mrs_G

Saw the Dr yesterday and had good blood results 5 and 5 and I havent been that low for a while

I had a cold and sore throat last week and had a blood test booked for my local surgery Friday but I know this had affected the results before so I cancelled this and went up to my nearest city hospital on Monday when I hoped I would feel better and it paid off !! I have struggled since Jan so wanted a lift and wouldnt have wanted a false reading

I have been on 10 successfully for a month and the aim is now 7.5 where my Dr said they like to get you there as they feel at that level steroids arent damaging you

I discussed with her the things mentioned to her on this forum alternate day therapy and the very slow regime suggested by Lissie Ellens Rheumatologist 1mg every 7 weeks She is open to suggestions and has just said to play around with it and see how I feel and has again offered me another Rheumatologist appointment if I want it but I do get excellent care

I am considering 10 10 7.5 and see how that goes When I get say to 5 I am definately going to look into the alternate day therapy to try and kick start my Adrenal glands ( so I will be looking for nadvise on that )

Off to Spain for a week on Saturday so will be relaxing then only the travelling to contend with and unfortunately its Heathrow as it is our transferred BA flight from Xmas !! I just love my local airports now

When I get back it will be tackle the weight gain and more exercise but that has just increased generally with the better weather and being out and about and I do find I am moving at my more normal speed rather that a slow shuffle !!

Best wishes to all and hope my bubble doesent burst !! Mrs G

0 likes, 6 replies

6 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello Mrs G

    Oh, well done and I'm so pleased for you - isn't it such a lift when those blood results come back normal!

    If it's any help, when I was at a similar stage to you having flared andincreased back up (for a second time!) from a very low dose (around 3mgs I think without looking it up), I was advised to do 10mgs for 2 weeks then 7.5 for 2 weeks, then alternate days of 7.5 and 5mgs for 2 weeks, then 5mgs for 10 weeks. (I then stayed on 5mgs for 5 months in all including the 10 weeks).

    The rheumatologist was of the opinion that as I had already reached a much lower dose before the flare-up, then an increase to 10 followed by a faster reduction to 5 would work. It did following which my readings were both 8 having been 54(ESR) and 56(CRP) prior to the increase.

    He was of the same opinion as your GP that they like to get you down to 7.5 as fast as possible (pain permitting!) as 7.5 down to 5mgs mirrors the amount of steroid that your body would normally be making, hence less risk.

    I think the secret is still to have those blood tests along the way just to be reassured that things are going in the right direction.

    As for tackling the weight gain after your holiday, I was going to tackle the weight gain after Christmas, then after my birthday last week and now I'm looking for another excuse :lol: !!!

    Have a lovely holiday 8) and do hope you continue successfully with whatever regime you try so that we have good news from you again soon!

    MrsO

  • Mrs_G
    Mrs_G

    Posted

    Thanks for the good wishes Mrs O

    I had to go back up to 15 in Jan unfortunately from 5 to sort the pain and it has taken me 3 months to get to 10 so I am going to be careful It was quite a shock to have such a blip as with my first bout of PMR I just sailed through in 2 years with the final year only on 1mg This forum has been invaluable to me

    The other thing I forgot to mention was that they are trying to get patients of enteric coated 2.5 and 5 mg !! This came up on a post a few days ago Enteric coated cost 10 times as much so the logic behind it is obvious She asked how I felt about it As I havent had a problem on 1s I am giving them a try BUT she did say to come back if I did I havent had a problem with Alecdronic Acid or Calcium either so worth a try

    Yes my weight has to be priority after my holiday as it was mentioned She did say would you like me to weigh you after I admitted a stone gain but as I had just been for a very nice lunch and a friends Birthday cake I thought I would give it a miss or it might have been 2 stone !!

    She always gives me a blood test form so if I need it I have a monthly test otherwise it is 2 monthly I managed to go 2 months this time as I was a bit obsessed with them !

    Hope my optimism continues !

  • mrs_k
    mrs_k

    Posted

    Hello

    Dropped in with a spare minute.

    I am a bit puzzled about this 'enteric coated'. I have always been on enteric coated since the beginning, unless when dropping have to use 1mg non-enteric coated.

    We even wrote to all the drug manufactureres and asked why the 1mg were not enteric coated. There was, as usual, a monetary reason.

    The use of enteric coated is to protect the stomach.

    My Mother had PMR&GCA over 21 years ago. There were no enteric coated tablets and no gastro protection. Mam ended up with, gastric ulcers and anaemia and needed blood transfusions.

    Immediately I was diagnosed with GCA, my GP put me on a gastro inhibitor - \"belts and braces\" as he knew and I did not that I was in for a long haul.

    It is the same with most drugs, and the classic is statins. The cheapest statin to proscribe is Simvastatin. When you look on the side effects, it can mimic PMR symptoms. People can have problems with Simvastatin and not with other statins which are more expensive.

    The rule is, READ THE SIDE EFFECTS and watch like a hawk.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Shock-horror :shock: ! I hope my GP doesn't suggest non-enteric coated tablets if I have to increase back up again as I'm unable to take the stomach protection tablets normally prescribed alongside the steroids and I would have thought that the higher the dose the more risk of stomach problems.

    As Mrs K says, the same principle seems to be applied to statins in particular and I have several friends who have been switched to the cheaper drug and are not happy!

    Mrs G - the Alendronic Acid and Calcium supplements you mention are to protect your bones. It is a gastro-inhibitor such as Omeprazole or Lanaprozole to protect the stomach.

    I take a live yoghurt before the steroids in place of the stomach protection tablets and so far so good.

    MrsO

  • Mrs_G
    Mrs_G

    Posted

    Hello again Mrs O I know about the Calcium and Alecdronic Acid I just mentioned them as I dont have a problem with taking them and I know they do upset some peoples stomach

    Yes Mrs K it is all down to cost with the enteric coated tablets My Dr did show me the exact costings on the Computer and they have had a directive to prescribe non coated where possible

    She did ask first had I ever had a problem with the 1mg of steroids and I havent and this is of course my second bout of PMR so I am going to try them but she said to come back if I wasnt happy with them so we will see

    It was just strange that other people had mentioned them in the last couple of days on the forum so I assume it is a national directive

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello again Mrs G and I'm sorry I misunderstood about the Alendronic Acid and Calcium tablets :? - I was really just concerned in case you weren't prescribed stomach protection as well. Oh gosh, it's a wonder we don't all rattle isn't it!!!

    Have a great holiday.

    MrsO

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