My Rheumy has suggested that it is probable that my adrenals have packed up by now and I will have to take steroids for the rest of my life- great! I'm not sure I can believe this as I have never yet got down to a low enough rate, I think to even test them out . I have been on Pred. for 14 months, nearly all that time between 9mgs and 14 mgs variable and that seems to be the only evidence he is using to say that. Fatigue has not even been much of a factor in my journey so far. He also said that there would be no point in ding a Synacthen (spelling?) test as these are not accurate.
On top of this, he also said that he thinks that the PMR has burnt out- I wish that were true but have no evidence of this- I am still recovering from a huge flare before Xmas which was confirmed in my CRP going up dramatically.- he said that that was probably just withdrawal pain.
I just really wonder sometimes why I bother going to a Rheumatologist- all I seem to get is questionable conclusions that are really upsetting.
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suzy1959
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I have to say Suzy - I agree with you wondering why you are going to see that particular rheumy.
In the first 3 years of my PMR journey I never got below 9mg, was well above 10mg for the majority of the time. No one ever suggested that was anything unusual or indicative that my adrenal glands had packed up or that returning pain in a flare was "withdrawal". In the last 2+ years I have finally reduced to 4mg - with no suggestion at a dose below the physiological level that my adrenal glands aren't up to snuff. And you are are quite right - IF they weren't working you'd probably only be on about 5mg/day for life.
If synacthen tests "aren't accurate" - why are they done at all? Is he a jointly qualified rheumy/endocrinologist?
You're in the London area aren't you? If I were in that neck of the woods I know who I would be going to see.
Yes, Suzy, I'm sure I know who PMRpro has in mind with suggesting who you should see for a second opinion! Whereabouts in the London area are you - would Chertsey in Surrey be an option?
Being on Pred for 14 months and suffering a flare before Christmas is not at all unusual - flares can in fact be quite common in the first 12 months of treatment.
As for your being told at this stage that you will have to take Pred for the rest of your life, is this man definitely a consultant rheumatologist, I ask myself!! If he is, he certainly sounds as though he's never read any of his papers on PMR! He should be more caring and reassuring you rather than "really upsetting" you with ignorant comments. Chin up, stay positive in spite of him.
Sorry- brain fog- I have been on Pred. For 26 months and have lost count of the flares I have had especially last year which is why I have decided to try the very very slow taper this year to see if I can get down below 10 mgs. Sorry to have been misleading!
No need for apologies, Suzy - I still blame Pred for "brain-fog" moments even though I'm off it! Ah yes, if you haven't tried the 'slowly slowly' approach to reducing after experiencing so many flares, why not?!!! It has worked for everyone I know who has tried it/is trying it so far. Let's hope it works for you too.
Hi Suzy,
I do get the impression that he is upset that your PMR is not behaving in a " textbook " way!
As far as the adrenal fatigue goes it's not something I have a huge deal of experience of but I do know that lots of the vasculitis patients are on prednisolone for 5 years or more and manage to taper off so I would question his reasoning ( especially given your raised CRP ).
The bottom line is do you have faith in this Dr to treat you and does he have your best interests at heart ( as opposed to his ). If the answer is no then you know what you have to do.
I have an appointment with the Prof on 10th March, basically because my Rheumy feels he is "the godfather of GCA". I have already seen an expert that my GP referred me to who agrees I have "probable GCA", but my Rhrumy won't take her view and insists I see the Prof. Having read your experiences over the past year I am slightly anxious as I'm 49, with normal bloods, and like you have been on Pred for 26 months. I have visions of him telling me to stop Pred, even though I have so many GCA symptoms, and Polymyalgia that is reasonably well controlled. I agree with the others re Chertsey for a second opinion, and who ever heard of withdrawal pains causing a raised CRP!! It's worrying when this is the country's "top expert"
Thank you everyone for your support. I think I am going to do my own thing at the moment, reducing the Pred. , getting off any superfluous medication, and sorting out my diet and weight . I am hoping really that I don't need a Rheumy for the time being, as long as all goes to plan. I am sick of feeling "wrong" just because my PMR is not textbook and I am resolved to believe that I will beat this thing and I will not have any lasting damage, despite having had a miserable 3 years so far......
Hello suzy1959 ..sorry to read your posts and find you are still having a hard time on this PMR journey .. It is interesting for me to read that you haven't got text book PMR as I have never had it and its always caused problems with my medical team in a previous hospital to where I am now ..I have been up and down on the pred and tried every trick in the book for over 11 years with various medications and thank Goodness for Celtic and advice from pmrpro as well .I seem to have my PMR just like you and I managed to get back down on the pred to the 14- 14.05 mg after having a fall in November 2014 and I had to go up to 17 mg but the last few weeks have been impossible .. I am with a good Rheumy and Celtic knows who he is !! BUT I am still in constant pain unless I stay up in high figures on Pred and I just can't walk , my pain moves around and I do everything possible to help myself including watching my diet ..going to osteopath for gentle ultrasound and light massage ..I wish you all the best Suzy and hope things improve for you , I am usually a happy person by nature but PMR does take that smile away at times .. I am back on 12.05 mg methotrexate injections which has been a nightmare because the Hospital Nurses managed to lose my prescription so I have had to start all over again.. The methotrexate is upsetting me but I must continue with it until I see my Rheumy in May .. Next week I see my GP for my medical review but he is never helpful and usually thinks its all in my mind and I hate that .. I don't imagine my PMR symptoms ..my pain and the fatigue /brain fog..Like you I need to come off these medications and pray for a miracle to help me walk again.. I have never heard or read anyone else saying they are wrong for not having PMR in the text book way ,BUT we know our bodies and how WE feel , I am constantly saying sorry for having it and one or two people say to me ..I know someone who HAD PMR but THEY got rid of it within 2 years so you must be doing something wrong . No WE are all different.I have shed so many tears in the last few weeks over the missing prescription and I think why am I fighting this battle ..Pmrpro gave me lots of good advice last week when I just wanted to lay on the bed and give up but I am feeling just a little bit better ..Good Luck Suzy and I will continue to read your posts all the best .I would be so lost without this Forum trish29
I wasn't diagnosed for 5 years because I was "atypical" - the symptoms were pretty typical of PMR (and GCA in fact but I was never asked the right questions except about headache which I didn't have) but I was "too young" and had "normal bloods". The 2 rheumatologists I saw 5 years apart acted as if PMR was beneath them and why was I wasting their time. I get the impression from the stories I hear that that is a common occurrence.
It isn't good enough - I don't expect miracles but I do expect to be listened to and NOT shoved into the "hysterical", "menopausal", "depression", "fibromyalgia" pigeon holes.
There is some dispute from the medics about the proportions of patients who get off pred that are quoted in the literature - but they fit what I have seen over the last 5 years on the forums. 25% get off pred in a couple of years or less - but are more likely to relapse later. 50% take up to 4 to 6 years - and the remaining 25% take much longer, some even remaining on pred for life.
Just because you don't fit their picture doesn't mean you are a "failure". You just occupy one or other of the little corner bits on the statistical bell-shaped curve - one of the 5% who always remain outside the normal range by definition. Normal range includes 95% of the population - ONLY 95%. Someone has to be in that other 5%.
Hi Pmrpro all you say is ringing a bell for me in the early stages all those years ago when it was YES you have got PMR and No you haven't got PMR ..I have always had awful headaches/ migraine with it but no- one listened to me .I had too many years at a previous hospital and not treated with much respect ..told eventually that I was Atypical and would probably be on 5mg steroid for the rest of my life .. I told that Rheumy who was supposed to be one of the top ones and is now retired, about my legs and the ice cold feeling I kept getting and she mentioned a lady specialist in this field so I said that's good when can I see her and was told I would have to be a lot worse to get an appointment .That was very disappointing as NOW I am in constant pain and can't walk,and I frequently think WHAT IF ..I had got to see that Specialist .Sometimes its come up did I have Fibromyalgia or Thyroid problems but that came up Negative .. I feel you are not told enough about the consequences of the medications , I have taken every steroid sparing agent out there but to no avail all giving such bad side effects including the oral Methotrexate .. I feel in my heart that the Methotrexate injections could work this time round but hoping that the medical team will let me stay with the slowly slowly approach .. I know my GP isn't going to be too happy next week when he sees that I am still in the 14 mg dose of pred but when I see my rheumy in May I hope to be down another mg. At least he is kind and listens and knows that I try to help myself .. Nobody would want to take these awful medications for the sake of it .. I find the Methotrexate makes me very agitated and tearful and if anyone sees me like this they look at me like I'm stupid and why can't she pull herself together , but there is a lovely Blue sky here in Surrey this morning and the birds are happy and playing in the tree outside, I Do feel better than i did a week ago apart from the pain , but better days are around the corner and yes PMRpro it would be lovely to be in that 5% that manage to get rid of PMR. trish29
Can I just say that if you visit pmr-gca-northeast.org.uk and read the Newsletters (Summer and Winter 2013 in particular), you will find tips and tricks to help you on your way towards the light at the end of the tunnel.
Maby a different Rume.. Dont be afraid to tske your health into your hands. Might checo out DrLam.com he is a adrinal gland specialest and has many free books and info on his site.. i am also going down on my pred. I started at 60mg 16 mo ago after being diagnosed with grand mall artritis, So far so good but will not reduce faster than I feel is good for ME. Best of luck Betty
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