Overall, how satisfied are you with your treatmen... - PMRGCAuk
Overall, how satisfied are you with your treatment for PMR?
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Hi Kate,
I'm very satisified with the treatment I get from my 2 rheumys!! Still really struggling but I feel they could not do any more and actually feel they go way beyond their duty to help.
Very pleased to begin with, but having a change of GP (within the practise) I feel a bit out on a limb. Perhaps it's time for me to jump up and down?
My GP seems up to speed about PMR but I feel she is guessing about what to do.
I know she can only go by what I tell her, but I sometimes find it difficult to explain how I am feeling. I sometimes wish she had referred me to a Rheumy whom would maybe tell me how I am meant to feel, and what should happen to me as my treatment progresses, as I don't really know if I should be feeling the way I am (hope that makes sense)
In the past year, I've been treated by four GPs in my surgery for PMR, 2 of whom have been very good and two of whom have been pretty poor. The first GP(a GP trainee) was excellent, making a prompt diagnosis but she left the practice and after that I worked my way through the GPs until I found one who seemed more proactive and have some understanding of PMR and I am now sticking with her.
The second GP(a partner) wanted me to reduce from 15mg to 10mg after it had taken 2 months for my blood tests to return to normal. Instinct told me that this was too much and I argued successfully to go to 12.5 for a month and then 10 having consulted this website. The drop from 12.5 to 10 was a real struggle and I could never have gone from 15 to 10 in one go. Totally unsatisfactory, I moved onto GP number 3.
The third GP(another partner)was very laid back, kept asking me what I wanted to do and just dished out blood test results which were a bit borderline. He did little talking and provided little input. When I hit stomach problems with the PCT change to uncoated pred he just wanted to prescribe more drugs to get my stomach to accept pills which were causing agony. Again totally unsatisfactory, I moved onto GP number 4.
The fourth GP(another partner) has been excellent. What a difference! She has made me an exemption case so that I can have enteric coated pred and devised a slow reduction plan from 10 to 5 which did not involve coated pred. She has checked my BP, discussed diet, weight, activity, impact of the illness on my life, carried out a vitamin D check. Even when all is well and I could be sent out quickly she has spent the time being proactive. I intend to stay with her. I am now having 3 monthly blood test and check ups. The only drawback is that she is part time and understandably very popular. I am much more relaxed with a GP whom I have confidence in and this has been reflected in improved blood test results.
Once a year I have a cancer check up due to a skin condition(probably another immune system problem). With treatment the skin condition no longer bothers me. I decided to try out another GP(young long term locum). She was surprised that I had problems with my shoulders as PMR normally affects the thighs most!! Needless to say I do not wish to see her either. Thank heavens it is a very larger practice!
I therefore found myself unable to translate my experience into any kind of mark.
Thanks to all of the support team which I found a great help when I was struggling with inadequate support and which also enabled me to argue with one GP who wanted to reduce the pred at a ridiculous rate.
Hi Kate and all members,
I have been off duty for a while now - with good reason! I have been through one awful fight with this illness, PMR. I have struggled between the doses of 8 and 6.5mg for weeks, dropping only half a mg every three to four weeks, to no avail. I ended up, yestererday, virtually bed ridden, in pain, with awful tiredness and virtually suicidal. I've tried desperately to avoid going up on dosage of pred thinking that the symptoms would surely subside if I stuck it out. Doctors really encourage us to get the doses down as quickly as possible, but I have now realised that we take pred to get rid of the pain, and if we are still suffering, the last thing we must do is drop the dose if we are not pain free. Being in pain means that the illness is probably still very active and raring to go! The feeling that I must be quite near to losing the battle completely were not withdrawal symptoms, but were caused by PMR. Today I upped the dose from 8mg to 10mg and the improvements in my pain, lethargy and stiffness were remarkable. Although I have still felt tired, I have been able to do my housework, cooking etc without going back to bed.
My last hospital visit was soul destroying, to say the least. It was a few days ago. Instead of seeing my current Rheumatologist, I saw a young registrar, who seemed to know only the basics about PMR and told me the extra pain I was feeling in my joints was probably due to osteo arthritis. He said that as I have had PMR for nearly 2 years, I must be almost better. I tried to explain how I was feeling, both mentally and physically, but he gave no advice. I felt he was completely out of his depths. I have been depressed ever since. I feel completely unsupported. On my own except for my long suffering partner who has to carry this burdon as well as running his business. I really worry about him. My GP let me down in the beginning of my illness by encouraging me to come off pred as quickly as possible because he said that I probably didn't have PMR, just a wrench injury. By the time I was diagnosed with PMR by a very experienced Specialist a few weeks later, I was only taking 3mg of pred plus 6 tabs of ibuprofen per day. As soon as the ibuprofen was withdrawn the prednisolone dose had to be increased to 30mg to cure the pain.
Tommorrow it's 10mg again. I wish I could be free of this drug, but at least I can pull my weight if I'm on a high enough dose.
I know I'm not on my own in this fight, but what is the answer?
Pats.
How frightening was the pain from undiagnosed PMR,,,,Soaking the bed from night sweats. my whole body in such pain, night times unable to turn over or get pain free and yes actually crying out for my husband to help me. G.P did blood tests ESR 35 did tests again ESR 95. Then fast tracked me to hospital to Consultant Haematologist. ESR now 135 Diagnosed with maybe Lymphoma......waited 2 weeks for CT scan.......bank holidays another 2 weeks for results......not Lymphoma prescribed Tramadol........now maybe Leukemia need MRI scan should have appointment within two weeks......phoned after three weeks no appointment will call back......no call back received..... phoned hospital again, told to get back to consultant. Consultant phoned and said hospital would not allow MRI. But he thought I may have bone cancer and to see him in two weeks. End June Went to GP to tell him that my condition was unbearable told him hospital had prescribed Tramadol, could I please have stronger pain killers as these were not working at this rate would be needing a wheelchair. G.P. said I think you may have PMR please trust me if I am right steroids will show a quick improvement start at 40mg.....so at 11 a.m. straight from collecting prescription took first dose, by 3 p.m. showed slight improvement in movement of lower arm following day improvement in knees.......after 7 days went back to GP with a massive smile on my face congratulating him on diagnosis.... my body was almost back to normal. Following week appointment with Consultant Haematologist to tell him good news. He explained how difficult PMR is to diagnosis etc.......But this whole experience from start to finish for diagnosis took 4 - 5 months.
However, my G.P. said I dont need to see a Rheumatologist he can monitor me. Have not had blood tests since the hospital ESR135 diagnosis But in my heart of hearts would prefer to be monitored by a Rheumatologist. Will try to ask again when I next see GP in two weeks time
I started steroids end June 40 mg to date 28th November down to 13mg. A couple of ups when trying to get under 20mg.....but a massive thankyou for the website, the experience and expert advice of others has been a wonderful learning curve.. I know my body reactions and have been going down at 1 mg a time every two weeks and all seems to be working.out well Stiffness in the mornings. but back on track after breakfast and medication.
I was always a very fit heallthy lady and really have no complaints when you read other members sufferings. My husband has been wonderful, looking after me, and the worry of the whole experience I think was worse for him....... I would like to add that I have regained my former fitness and really feel well.
Fressia,
I think yours, for me, is the worst case yet to have been described in terms of mis diagnosis. What you have endured to obtain a correct result must have been terrifying to say the least.
I am so glad that you are so much improved - you really deserve this respite from the suffering you have had.
One word of advice - watch those drops! The lower you drop, the harder it can get. So if it gets harder, either extend the time between reducing or reduce the dose to half a mg if you can't cope.
Best wishes to you and your lovely husband. Pats.
Hi Kate
Been a sufferer since July, riga mortis had set in,Dr diagnosed,treatment followed,36 hrs and 35 days pratically back to normal but then seem to come and go - possibly stress,not
taking it easy - swimming twice weekly.walking twice daily.No advice what to expect, Dr some
but Rheumy nothing-just keep taking the pills!But with PMGCAAuk and fellow sufferers,
bless them all,I am now reducing Pred(20 to 17) Knowing what to expect and feeling it,but with all your Help I am in charge of myself without you , well............Happy Christmas all
especially PMGCAAuk - Scubadiver,(John,77yrs)- will get back to it!
ps(Rheumy threw in for good measure a PSA test without asking or explaining and it came back high at 20,via a Biopsy I get the results tomorrow ,-Hey ho
Very satisfied so far ,still early day' Keith
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