Update after Dr appointment

[suzieh]

Visited the Dr for PMR and thyroid blood results,and a chat, as I haven't seen her since Jan. The last contact was a phone consultation in May.

Explained I am reducing 0.5 mg at a time using the very slow method, and also that each time I drop I seem to have a few days feeling wobbly and unwell. Now on 2.5 mg per day. She thought I should persist in dropping slowly and to take paracetamol if necessary. Gave me very strong advice not to take ibuprofen with Steroids. Apparently Paracetamol is far less likely to cause any problems, even at the max dose per day.

Dr also said, in her experience, most people can reduce Steroids without problems and I must be very sensitive to the withdrawal. She also said she thought people started to tune in to analysing every ache and pain when unwell and tended to blame them on the original diagnosed problem. (Probably true in my case!)

My Inflammation markers were up a little since last time but not significantly; thyroid status changed too but not enough to warrant upping my dose just yet. Next blood tests 3 mths for PMR and thyroid. She was pleased to hear I'd been doing Pilates, yoga, walking and allotment again - all helping muscles. Came to a joint decision that I should stay at my present dose for a week or two then try reducing again when I feel ready.

[trish29]

Good Morning suzieh .. Why do our GPS think that it is easy to reduce steroids .. You and I and a lot of others on this Forum have problems otherwise we wouldn't get flare- ups during the reduction. You at least get regular blood tests ..I seem to get missed out in that area but maybe that is because of 10 years with PMR I have always been classed as Atypical. I hope you are coping with the Methotrexate ? I was on it for a long time but I got very Nauseaus with it . I have now started on 10 mg of Leflunomide which I think might be starting to work but I've also been put back on 2.o5 mg of Ramipril but I feel so drugged up all the time . since I was on holiday in July I've managed to get down 2 mg on the steroids but I still hurt .. I see my Rheumy in October and I hope to be down a little bit more .. I am very tearful and my partner is very fed up with me because I can't concentrate and help more around the home and unfortunately our cleaner is away this month , I havent got a lot of energy to go out on my mobility scooter. I believe if I can persevere with the Leflunomide that it will work but its going to take time ..The only good thing this week was I was able to go to our Surrey PMR meeting at Chertsey and it was a wonderful meeting .To be with so many other people that know what you are going through is comforting .. Take care and I hope you manage to go further on your reduction. trish29

[suzieh in reply to trish29]

Thanks Trish for your reply and sorry to hear that you are feeling tearful. It is horrible when you get low. Try and take it easy with a few treats to brighten the day. You have managed to get to 2 mg of steroids which takes some doing. I only take prednisolone - and thyroxine ( for sluggish thyroid function), have not been prescribed anything else. I am lucky in that I have " only " had PMR for 2 years and I am starting to feel as if it is going. Good to know the support group meeting helped to cheer you up. I get a lot of support from this on line group ..... Especially when I don't want to burden family with woes!! It is hard for them all to understand as I suppose we look mainly ok ( no broken limbs or terrible cough or suchlike to remind them constantly) I have been getting better at asking husband to do certain housework jobs etc like Hoovering which is quite strenuous... Usually say " while I make lunch can you Hoover please". Like most men of his generation he doesn't think about what needs doing but will do the job if asked. Keep smiling!

[trish29 in reply to suzieh]

Hi again suzieh ..my post to you must have mislead you .. I am nowhere near 2mg on the steroids ..I meant that since my bad flare- up and I was put back up to 17.05 mg steroid I am now down to mainly 15mg everyday which is still high . Decreasing down by 2.05mg is the biggest decrease I have had for a while and still with a long way to go..A 10 year roller- coaster ride has been a long one ..its like playing Snakes and Ladders and getting nowhere. I must stay strong and keep going .. Its good that Hubby helps you .. Pete my Partner has been wonderful but this has been a bad year and its taken its toll . I just hate saying ..that needs doing and could you do it please.. Let's hope it gets better for you soon and enjoy this Bank Holiday weekend .. I have family coming on Monday with my youngest Granddaughter and my daughter- in - law is a hairdresser and is going to do my hair for me so that will be a treat. Take care trish29

[trish29 in reply to suzieh]

Hi again suzieh ..my post to you must have mislead you .. I am nowhere near 2mg on the steroids ..I meant that since my bad flare- up and I was put back up to 17.05 mg steroid I am now down to mainly 15mg everyday which is still high . Decreasing down by 2.05mg is the biggest decrease I have had for a while and still with a long way to go..A 10 year roller- coaster ride has been a long one ..its like playing Snakes and Ladders and getting nowhere. I must stay strong and keep going .. Its good that Hubby helps you .. Pete my Partner has been wonderful but this has been a bad year and its taken its toll . I just hate saying ..that needs doing and could you do it please.. Let's hope it gets better for you soon and enjoy this Bank Holiday weekend .. I have family coming on Monday with my youngest Granddaughter and my daughter- in - law is a hairdresser and is going to do my hair for me so that will be a treat. Take care trish29

[PMRpro Ambassador]

Most people can reduce easily eh? If by that she means of all her patients on pred very possibly. If she means her PMR patients - I doubt she has seen that many. And PMR is not COPD, asthma or any of the other reasons for taking pred. They get pred for a short time and yes, then it is relatively easy to reduce since you have dealt with the inflammation and swelling once and for all, it won't reappear until the next flare of the illness. PMR is a long term autoimmune activity and as long as that's going on the pred is needed. I wonder how it is possible to educate them - some of them are so fixed in their ideas they won't even listen to the research that shows better ways of doing things. We've little change of changing their minds.

Never mind, it'll all come out in the wash as my mother used to say!!