Hi, I have recently been diagnosed with PMR and wanted some advice and thoughts.
I was in the States at the end of September, and had what I now know was a TIA. I was wrongly prescribed barbiturates so decided to return back to the UK asap. GP sent me to A & E. CT and MRI showed an old stroke. But when blood tests came back they changed from wanting to send me to the TIA/stroke clinic to investigating my liver not ‘functioning properly’, raised ESR and significant, unexplained weight loss (14 lbs in a matter of about 8 weeks). No one seemed interested that I had pain/stiffness everywhere, couldnt get out of bed, without huge struggle, difficulty walking, and just sitting crying to try and not worry my husband too much. Eventually the Gastroenteritis consultant said no cancer present. And questioned PMR. I went to the GP who prescribed 20 mg of Prednisolone. Within 18 hrs I could get out of bed and was nearly pain free.
However the steroids made me absolutely manic. I have the tidiest flat in Nottinghamshire, very little sleep etc. I wondered if anyone else has had this reaction to steroids. (I think my metabolism must be weird, as I have only had a sleeping pill twice and both times it made me not able to sleep for 12 hours+ (I am now down to 15 mgs and seen the Rheumatologist, who has devised a reduction plan for the steroids. I went down to 15 after having purpura bruising and what seemed like kidney pain. But I am getting quite a lot of pain again.)
Sorry about long story, but I would be so grateful to hear what others have found.
Hello, oh yes, I The early months of Pred my house has never been so clean. It was the sort of cleaning like backs of drawers and recesses that never got any attention before.
Others will comment on your reduction but a couple of questions spring to mind. The reason for asking is that you may get to a point where they want you to reduce but your PMR says no and you need to get the docs to justify it a bit more. Was this purpuric bruising widspread or just the odd patch? On Pred I’ve had broken veins type, purpuric and your normal type in response to a seemingly insignificant bump. This it can be a side effect of Pred and not concerning. So, what was it about this bruising that made it more worrying than usual?
Pred also lowers your resistance to infection and urinary tract infections is one type that comes up a lot on here. I’ve had 4 in 10 months having not had one properly in decades. Did your kidney pain prompt anyone to check you didn’t have an infection and did any kidney function blood results warrant the Pred reduction?
We all (well nearly all) had houses like that at the beginning of our journey!
Don’t worry - it doesn’t last!
As a SnazzyD says the bruising is very common as well. Have a look at one of my posts written for newcomers like you. Hopefully it will help a little, as will reading the posts on here. All the things you are experiencing are par for the course with PMR, they just new to you.
Just typed a reply and lost it, so hope this doesn’t come twice. Thanks to Snazzy D and Dorset lady for your replies. I have only been for my first Rheumatology appointmentrecently, despite having been on the steroids for 6 weeks. The br,uising was quite bad, dark black patches, spreading. And no my acupuncturist was the only one to pick up on possible kidney infection, and the “pins” she stuck in last Thursday seemed to help. I guess it is a toss up been being in pain/ managing the pain and being manic. Will read past postings so I don’t ask questions that others have asked previously.
I think you gone down in dosage too far , too fast. Some people it seems can do that 5mg drop from 20mg to 15mg, but others cannot. So the disease is reasserting itself.
Difficult for you when you are like a Duracell bunny on the higher dose. The alternative though is PMR symptoms back again.
Be sure and have a dexa scan BEFORE you agree to take any bone medicine because of the prednisone and be sure and read everything you can on this site about alternative treatment! Good luck. I miss the speedy feeling prednisone gave me in the beginning and I sure could use my clean house again.. but I'm back to thinking no one ever stood up at an award ceremony and said: I owe this all to my mother's clean house!!!
A lot of people get the Duracell Energiser Bunny effect with pred, even at realtively low doses. Purpuric bruising is also absolutely standard.
However - what worries me more than anything is that noone seems to have considered that your TIA/ministroke may have been due to GCA - which would also cause all the other PMR symptoms.
I'd say you have probably dropped too far, too fast - via 17.5mg would have been better - and you probably need to work on learning to pace yourself!
Yes GCA has been considered, dismissed by the Registrar I saw, but I have written to the TIA/Stroke consultant who I saw, to query this again. When I saw him just before New Year, he did say he thought I was down that end of PMR, but what made him think I perhaps wasn't, is that my ESR has never been above 50, and he said that he would have expected it to be over 70 in someone with GCA. But I think I definitely was probably up there last March, when I had a sudden onset, 8 hr headache from hell, with temple sore, and sore jaw, and all the classic things of GCA. And I think the Registrar is wrong, I have had, or have all the symptoms. I watched the interesting lecture on the PMR GCA website by Prof Dasgupta, and was interested that they can now do an ultrasound of the temporal arteries rather than a biopsy. I go to see Prof Walsh, Director, Arthritis Research, UK pain Centre, Nottingham Faculty of Medicine as well as consultant at our local hospital in Mansfield, at my next appointment at the end of April, so am hopeful that I can have a proper discussion with him then.
The Rheumatology Registrar dismissed my question about bone density scan, saying I wouldn't be on steroid for long enough to warrant that, I would only be on steroids for 2 years she said. However from what I read on this site, 3 - 4 yrs is more the norm, and my mother had bad osteoporosis so I will pursue that - thanks.
20% of patients with PMR and GCA do not have raised inflammatory markers at all - there really is no correlation between the level of the markers and whether it is GCA, LVV (large vessel vasculitis) or PMR. There is considerable overlap:
Five years is more the norm - and 2 years of pred can be enough. However - you have to have a baseline dexascan to find out whether you have good bone density or not, it should really be done in the first few months and is recommended in the BSR guidelines.
Regarding the osteoporosis question which always comes up in relation to prednisone. You shouldn't take any OP meds without the DXA scan first. The doctors shouldn't even be allowed to prescribe them unless there is a definite need. Furthermore it is possible to maintain and even improve bone density whilst on pred, this is proven so don't let any doctor tell you otherwise. If the OP meds were benign substances which didn't come with their own lovely suite of side effects it wouldn't matter so much, but as PMR/GCA already makes up feel rotten, and pred has a few side effects of its own especially at higher doses, it makes sense to avoid throwing other serious meds into the mix especially when in most cases it will turn out they were never needed. Diet, supplements and exercise will take care of many of the pred side effects, including possibility of bone thinning.
I seem to have changed my username, without meaning to but it wouldnt Google wouldnt accept my Bridget1001. For anyone who is interested - it means Hello lady/ma in Setswana.
Hi Bridget1001, with regards to your worries of Prednisolone I would just say to you don’t stay on them for too long and try to get down on your doses ASAP when and if they go up.I was on the drug and was put on 60m a day for a few weeks then down to 50 for a few days then down to 40 for 3or 4 days and so on until I was on 20m but my doctor kept putting it up and then 6 months later my specialist started taking me down again but I could never get below 15m and was up and down for over2 years before I went on Methotrexate which worked for me, the main thing to tell you is Predlisolone gave me really bad arthritis which has caused me to have 2 new hips and 2 full knees in 3 years and also rheumatoid arthritis as well so keep your eye on your bone density and try to get off them and don’t worry about Methotrexate if it’s offered to you. All the best Mick
Doctors may tell you that prednisone can cause osteoporosis, but I've never heard of it causing arthritis. In fact it is one of the treatments used for rheumatoid arthritis. My cousin has RA and she was on prednisone at the beginning when her disease was very acute.
It is also mentioned as a treatment for osteoarthritis, particularly as intraarticular injections. Too many injections is bad for joints so they are limited to 3 in a year or so. Oral is a different matter.
Bell4796. I have arthritis in all my fingers. I have been on Pred for 12 years for GCA. I do not blame the Pred. It is hereditary in our family. If Pred has not worked for you/or you do not want to take it, you cannot tell someone, esp. if a newbie, that they mustn't stay on them too long. Everyone is different, and it's not a race to come off Pred. It's to find the lowest dose at which the inflammation is controlled, thus making you pain-free.
I know about getting to a pain free level as I had that for 7 years up and down and I only said about arthritis as that’s what I was told by my doctor who also said that they wanted to get me of them as they can cause damage I know about pain I have had it for 7 years since I was 57 and I am now disabled because of arthritis in my body, I only said what I was told and if it’s wrong fair enough but I know that prednisone has bad side effects in the long term
Yes my doctors told me that if your dose is to big for too long it can cause arthritis, I have it in nearly all my joints, as I said about my hips and knees and waiting for a wrist to be done and maybe a new shoulder, the worst is if you have a small fall the damage is worse due to your bone conditions
I would be really interested where they heard about the fact that pred causes arthritis. I can understand it causing osteoporosis which is well documented.
Not sure but I am not a doctor only a patent, I do have osteoporosis as well but also like I said after my Methotrexate my bones did get better and I have had my term of that and I had an infusion of a liquid which coated my bones to hopefully keep them were they are now.
I was on an injection of Denusiab every 6months and Methotrexate kept my bones from going worse when they got better is what I was told then after 2 years I had an infusion of another drug which kept my bones as they were
Hi Bell, as PMRPro says it is not the Methotrexate that is keeping your bones from getting worse, whoever told you that? It is the Demosumab which is used with osteoporosis.
Not a witch hunt - we like to have accurate info here for the benefit of people looking in and it sounded as if you were crediting the mtx for the bone density improvement. If only...
Sorry PMRpro,its just i was only saying what i have been told in the past and i had piglet asking your questions to me after you had asked so i thought i was being ganged up on.When i was first diagnosed with PMR i had 1 doctor telling me one thing and another something else,i have had 7 years of hell with it,i was told i had PMR and then i did not,i was told i had GCA and then i had an op but 1 doctor put me on 60m of pred so it didn't show up in the biopsy,then my main man kept saying pred was bad for the bones and he had to get me off them as i had been on for 3 to 4 years so he put me on Methotrexate,my doctor said it was bad but the only bad thing i had was the weekly tablet with lots of water so thats when i went on the injection.In the meantime i had bad hip pain and had 6 hip operations which my doctor said was due to the pred and then i had 4 knee operations all in just over 2 years the last one being a full knee 4 weeks ago,i am on so many painkillers i get a bit confused but my doctor (not my specialist) was the one who told me all my knee and hip trouble which is down to arthritis was down to the pred,i also have osteoporosis and my doctor who has now gone told me i also had Rheumatoid Arthritis but my specialist says i don't have that so thats a bonus.
Sorry about the witch hunt but i was just getting same questions 1 after another.
Because we are often posting at the same time and haven't seen other comments - it's the way this forum works unfortunately. Plus - if more than one person provides such info it is more credible.
You sound as if you have a had a selection of doctors with either some very dodgy background info or the attitude "I can tell the patient anything I like - they won't know the difference...". And that is something we are allergic to and do our best to dissipate
Prednisone is well recognized for inducing psychosis or depression. I actually just came across this very informative article this past week on this topic and wanted to share it here with you. I hope things are going better. I am newly diagnosed October 2017 age 55. Prednisone is contraindicated for me personally due to Mental Health contraindication. Not sure where this treatment with prednisone up in the air is going. Take good care.
I find it extraordinary that the medics dont warn people going on Coriticosteroids about the dangers of how manic you can get. Luckily someone thought of this for you. I kept going by talking to people constantly, and using my husband to monitor if I was being stupid. I felt invincible and that all my ideas were wonderful (similar perhaps to being on cocaine??) and had to constantly check myself to see if what I was doing or saying was barking mad! I am a bit better since going down from 20mgs of Prednisolone to 15mgs, but think that was too much of a leap, so am going to go back to GP and ask for 2.5 mg tablets so I can up or down a bit.
The thing that would have helped me enormously was finding this forum earlier. It would have been so helpful if the Rheumatology people had give a link/leaflet about this site, it is so helpful to hear others experiences and get advise, dont you find?
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