Longterm PMR
Posted , 15 users are following.
I don't want to depress this group by my longterm PMR (diagnosed 2007)- I like everyone else was keen to reduce my steroids as soon as possible after diagnosis and although i have managed to reduce to 2mgs twice ,using the dsns method I have then flared and this last three years I have flared each year and now cannot seem to get much below 9mg before trouble flares!! In desparation following a flare last Easter requiring me to to increase to 20 mgs yet again I was persuaded to go onto Methotrexate in an effort to get me off steroids. I am also in need of a hip replacement operation and have been asked to wait this year whilst the Rheumatologist investigated whether this was RA with a PMR presentation and to try and reduce my steroids prior to the operation.
I now have been on MTX plus folic acid once a week for 5 months. I have become increasingly fatigued - more then ever before during my PMR journey and am in constant pain with my hip which prevents me excersing now. It has been discovered I am now anaemic and so have been put on iron supplements alongside the multiude of pharmacologies to prevent and support other diagnoses that have developed since being on steroids. I sleep all night apart from if my hip pain wakes me or the need for the toilet but if I do any activity in the garden, go shopping , housework or look after the grandchildren then I have to sleep in the day to recover!! I am so frustrated. It is not iron deficient anaemia, my thyroid levels are fine and according to further tests it does not appear to be RA. The fatigue I now have outweighs the stiffness from PMR - I have now been advised by rheumatology to increase the Folic acid to 6 days a week and MTX as previously prescribed plus to stick at 9 mg steroids. To continue with the iron tablets and to give it 4 weeks to see any result. I am too tired to think it all through, to process it all and was wondering if any of this group has experienced any of these problems - especially with MTX .
On a more positive note whilst I have been reducing on steroids the majority of the time, as long as I have paced myself and was not undergoing a flare, then my life style has been little affected - it is only lately that I have been restricted mainly by the hip pain and more lately by this fatigue. The experience of this group is invaluable to its members. Wishing you all the best.
0 likes, 29 replies
ptolemy gillian75478
Posted
I have tried to redo Gillian's post that some if you could not read.
"I don't want to depress this group by my longterm PMR (diagnosed 2007)- I like everyone else was keen to reduce my steroids as soon as possible after diagnosis and although i have managed to reduce to 2mgs twice ,using the dsns method I have then flared and this last three years I have flared each year and now cannot seem to get much below 9mg before trouble flares!! In desparation following a flare last Easter requiring me to to increase to 20 mgs yet again I was persuaded to go onto Methotrexate in an effort to get me off steroids. I am also in need of a hip replacement operation and have been asked to wait this year whilst the Rheumatologist investigated whether this was RA with a PMR presentation and to try and reduce my steroids prior to the operation.
I now have been on MTX plus folic acid once a week for 5 months. I have become increasingly fatigued - more then ever before during my PMR journey and am in constant pain with my hip which prevents me excersing now. It has been discovered I am now anaemic and so have been put on iron supplements alongside the multiude of pharmacologies to prevent and support other diagnoses that have developed since being on steroids. I sleep all night apart from if my hip pain wakes me or the need for the toilet but if I do any activity in the garden, go shopping , housework or look after the grandchildren then I have to sleep in the day to recover!! I am so frustrated. It is not iron deficient anaemia, my thyroid levels are fine and according to further tests it does not appear to be RA. The fatigue I now have outweighs the stiffness from PMR - I have now been advised by rheumatology to increase the Folic acid to 6 days a week and MTX as previously prescribed plus to stick at 9 mg steroids. To continue with the iron tablets and to give it 4 weeks to see any result. I am too tired to think it all through, to process it all and was wondering if any of this group has experienced any of these problems - especially with MTX .
On a more positive note whilst I have been reducing on steroids the majority of the time, as long as I have paced myself and was not undergoing a flare, then my life style has been little affected - it is only lately that I have been restricted mainly by the hip pain and more lately by this fatigue. The experience of this group is invaluable to its members. Wishing you all the best."
gillian75478 ptolemy
Posted
Thank you ptolemy for your efforts to sort my computer / forum problems. I have been a member on this forum since 2007 and although I don't often submit comments I often read other discussions and have gained vital information over the years. However I must say that the forum was far easier to use in 2007 than now !! Thank you so much - computer problems was the last straw!!
ptolemy gillian75478
Posted
I think life is becoming more and more complicated. I remember being able to change channels on the TV and it was immediate, also I could phone a company and someone would answer in a minute, not take half an hour going through menus, music and a recorded voice apologising for them being very busy. They are very busy any time of day or night you phone them, just employ more staff! I also remember the days of common sense.
Anhaga ptolemy
Posted
Glad to be able to read your comments thanks to Ptolemy and r.d.s. Sorry about what you've been going through, however.
I'm not surprised you are fatigued. That would be normal with anemia so hopefully you will start to regain some energy soon. Also PMR/pred can exhaust us. Having pain from the hip is another thing. I'd say your reactions are perfectly understandable given what you have to put up with. It's also good that they aren't making you reduce the pred too quickly just now while you are feeling so unwell. I hope you start to feel better soon and get an accurate diagnosis which can be effectively treated. Not ever having to take mtx I can't add anything to that conversation. All the best.
EileenH ptolemy
Posted
Methotrexate made me feel awful - the fatigue was overwhelming. I refused to continue with it after 4 weeks - I felt as if I was in a permanent flare and it emphasised the so-called pred side effects.
I'm surprised you have been put on iron supplements - they are not recommended for the anaemia of chronic disease for various reasons.
Thyroid test levels are affected by being on pred - the TSH is suppressed and so you can have an apparently normal TSH level that is hiding that it should be higher, telling your thyroid to produce more.
I know a few people who have had successful hip replacements at around 10mg and who were then able to reduce their pred dose - it was as if the hip pain was feeding the PMR.
Anhaga EileenH
Posted
Why not the iron supplements? I took a liquid iron supplement, plus was a bit careful to eat iron rich foods, and I improved so don't need the supplement any more. Wouldn't have taken pills if told to as I can't tolerate them.
EileenH Anhaga
Posted
Something to do with the mechanism of the anaemia of chronic disease - the iron can end up being deposited into body stores which can get to toxic levels. The serum ferritin must be checked too.
http://www.irondisorders.org/anemia-of-chronic-disease
The cure for the anaemia of chronic disease is managing the disease ...
Anhaga EileenH
Posted
Perhaps that's why my doctor only checked ferritin level - which was practically nothing when we started.
gillian75478 EileenH
Posted
Thanks for replying Eileen. Your comments are very interesting as always. I am interested to hear what you say about the iron supplements - do you know WHY they aren't recommended for anaemia of chronic disease. I did ask the question why I was advised to take iron supplements if it wasn't iron deficient anaemia but I was told that it would still make be feel better!!
Good to know about people who had hip replacements whilst still on 10mg steroids - I am so concerned because the rest of my fitness is suffering now with lack of walking. I do hope I get some way forward soon.
EileenH gillian75478
Posted
Look at my post 2 above yours - there's a link to read.
Emis_Moderator gillian75478
Posted
Hi all,
I edited the initial discussion when it was reported by Eileen. The only thing that was "odd" about it was there were spaces at the start of the paragraphs but that shouldn't mess the format up and I don't know why it was ok for some of you but not others. I am going to do some testing around this to see if I can recreate the issue and will report any bugs or issues to the development team. If any other format issues are noticed please use the "Report" link to let us know so we can investigate.
Regards,
Alan