I have never definitively been diagnosed with PMR , merely responded to Pred last year to upper arm pain. Having tapered right down with no problems after a year, in January, I got really bad pains both arms and legs, worse than last year by far. I was referred to Rheumatologist ( NHS) again in February. GP didn’t want me to start Pred until I had seen one. I went private in March, he organised for me to have Muscle Scans and Electrical stimulation tests which I had within 6 weeks ( NHS) I cant access the results at all , since I haven’t 6 months later been given an NHS app. Private sector says can’t access, NHS sec says she can’t as I haven’t had NHS Consult, GP says can’t, I couldn’t deal with the pain and begged to go back on Pred anyway. So I started on 15 mg, to 12.5 to 10 then 9. After a month of each was due to go to 8mg, but I’m back where I started, pain and stiffness and terrible tiredness. I don’t know what to do. I didn’t think the private Consultation was brilliant, he told me it couldn’t be PMR as I got hand pain as well but 6 months down the line I am no nearer an NHS app ( Southmead, Bristol) it’s shocking I had two lots of tests and nobody can access results. Honestly I could cry. All I did today was take my 3 yr old GD swimming and I’m flaked out writing this! Do you think I should raise the Pred dose to 10mg? I’m afraid GPS are pretty unsupportive prob because I also keep getting Urinary Tract Infections every few weeks and they are sick of me 😢😢
Pain again on 9mg Prednisonone: I have never... - PMRGCAuk
Pain again on 9mg Prednisonone
Your doctors just need to do their job and treat you , without you feeling like a nuisance. Under the data protection act, I understood that we were entitled to see our own medical notes. That might be an angle to try. Something has gone wrong.
I believe that hand pain and weakness can be part of PMR. I certainly have it and I feel as if PMRPro posted about it, some time ago. He sounds worth the dollars ( 😏).
I would be tempted to try 10mgs and my next taper would be 0.5 every 4 weeks ( in the absence of coherent medical guidance). You are probably as diagnosed as most of us on here tbh.
There does seem to be a proneness to UTIs with PMR and Prednisalone treatment. I certainly experience bladder discomfort on-going. It got better when I stopped the Adcal in favour of just vit D.
Please get plenty of rest and daily naps. The fatigue is a bad symptom and most of us get it. The stress you are being put under will not be helping. Bobbing about in Luke warm water with a 3 year old GD, sounds like bliss to me. Let us know how you get on.
I agree with Sheffieldjane. You are as diagnosed as any of us and pred works so take as much as you need to so you can see the Dr feeling better and fight your corner.
I can't believe you can't access your results. Surely the consultant you saw has some sort of contact details or an assistant etc. It's not right and with no results how could s/he take your money?!
I hope you feel better soon. That fatigue is horrid.🌻
•
This is a paragraph from guidelines for go at interface of private and NHS....it's a pdf file that is almost impossible to read on a phone...I will try and link it. There must be a way to get someone shifting.
"All doctors have a duty to share information with others providing care and treatment for their
patients. This includes NHS doctors providing information to private practitioners.
Issues for consultants
Guidelines first red writing..
bma.org.uk/about-us/patient...
"
Never mind being sick of you - they should be referring you!
And as for "You have hand pain so it can't be PMR" - how wrong can you be???? RS3PE syndrome is associated with PMR and only affects hand and feet. Leeds rheumatologists have done a study - and are pretty sure hands and feet are involved in PMR.
Mine certainly were/are!!!
I discovered that the private sector have totally different computer systems that do not talk to each other or the NHS ones. My GP cannot access my private info, the consultant has to write it out by hand and send as a letter. In my area NHS. primary care and secondary care also have different computer systems, it is total chaos. In fact secondary care have two or even three systems which do not talk to each other as our main hospital was classified as special needs or whatever they call it and they got taken over by another hospital trust. Also I discovered my private consultant cannot email my NHS GP and vice versa as he must be on NHS net. One integrated computer system would solve endless problems and make things so much more efficient.
Let's face it - never mine the private sector, some NHS ones don't speak to other NHS ones!!!
Exactly, my GP cannot access my xrays from one hospital. I think they should buy Facebook’s software.
My husband always takes a photo of his X-ray when he sees his nhs consultant! He just says “ Oh excuse me, could you move over a little, I’ll just snap this for my records! 😜
I just have the x-ray and do not see a consultant so cannot do that. Although I was able to when I went privately. It is ridiculous we are spending £129 billion a year on the NHS and we have to take photos of a computer screen. So much for the digital age.
Absolutely true! It is appalling and frustrating.
Taking photos of any resulting X-rays has at least given my OH a record ——-I’m pretty sure our GP hasn’t got them —- though he should have!
It's like some sort of challenge between hospitals to keep as much secret as possible
Not having access to your medical records rarely happens in the US. They have 30 days to send them or be subject to fine. They can only charge 10 cents pp for photocopying. If it is a whole hospital chart, no more than $100. That pertains to all health care providers.
Before retiring I practiced law. Prior to that I was a RN and fell into medical negligence law, mostly defence, but an occasional plaintiff's case.
Sometimes we would file a complaint against all healthcare providers in a situation just to get discovery, ie.patient records. Then if the records showed no wrongdoing, we would dismiss the case. We didn't do it for free, but at least our clients had their records .
Tou are entitled to see your medical records although most hospitals will charge you at £50 for this!! The only thing they an dk to your records is to withhold anything in your file that they think would be detrimental to your health (mental or physical). If you dont get anywhere with your gp.who seems useless I would definitely ask to see your record. Just remember you might not understand everything in them!YBB
And please ask to have a copy if all correspondence between hospital and gp. It can take ages but at least you get it. I only had a good look at my scans and x-rays at the dental hospital....a sneaky look.
It is so bizarre - here I get all letters sent to me and can have all scans/imaging of all sorts as a DVD for 5 euros a throw ...
I think if I asked now I may be able to get a copy but before it's been looked at there's no chance. I will ask next time.
Problem is the tests weren’t done by X Ray dept but by Neurophysiology and GP wasn’t sent copy . Really, the private Rheumatologist should be able to get results ( as he ordered them ) but of course he won’t remember or be motivated as the results will prob be in NHS notes though whether any created yet as I haven’t yet seen him under the NHS I don’t know! I’m not to keen to shell out to see him again privately as he won’t have been sent the results to his private practise..
I would still ring/write or email his office asking when you can expect his report to be shared with GP as per guidelines so you can move into treatment phase if necessary.
netdoctor.co.uk/health-serv...
I am not sure the guidelines refer to private consultations etc just NHS.
It's just worth noting that the back and forth between them is supposed to happen. I should imagine there's only guidelines for NHS. Certainly that's all I could find and I would imagine it's difficult to get the private side to embrace that even though sometimes it's the same dr. Mad isn't it. Really they shouldn't get their money until things complete...or at least part of their money.
In my case the private side were keener to help than the NHS who did not want to know and said that my consultant could not email them or contact them electronically only by letter. Great having xrays by letter!
🤣🤣🤣 omg you have to laugh or you would cry and smash them. I know it's different and not life and death but if I had meetings with people I would email them within 48 hours a summary of the meeting and an action plan. That way I knew our business was done. The narratives they have to write within their specialisms cant be so different that they can't deal with them when x-rays/scans done. Certainly the letters my rheumy sends are proforma like.
I had an NHS rheumy who used to take notes into a lined book she kept in her over large handbag. I am not sure she did anything with them except drag them out the next time you saw her. If you saw someone else - tough.
That's awful. At least mine writes on a blank sheet in my file then it gets typed up. Otherwise how on earth do you get continuity of care when they have no idea who you are and previous appt was months ago..
<how on earth do you get continuity of care when they have no idea who you are and previous appt was months ago.>
The answer is you don’t! Even at the local surgery I have a different doctor each time and they have not got time to look through my notes. I reckon I could do a better job sometimes.
Sadly I seem to be known among the 3 oldest serving gps. But I am sure that you could!!
I know, it’s really sad. The app is scheduled to be 10 minutes long, by the time you get in, they are already running behind , so they are stressed out.I really pity anybody with mental health problems, this certainly can’t be adequately helped in 10 minutes ( or less if surgery about to close)
Should I go back up to 10mg? If you get break through pain is that what one does?
If it's the same pain as PMR at "diagnosis" and 10mg worked it might be wise. You should explain to the doctor that if the pred worked at low dose (15) then given symptoms it's highly likely it's PMR and if you need to go to 15mg then suggest it at the gp appt. Then wait for NHS rheumy appt. Not ideal but you need to decide on the route that less stressful as stress will not help any long term condition. Basically most of us have symptoms, blood inflammation markers for around 80% are raised and 15 to 25mg of pred can help up to 80/90% of symptoms within a week of two. The rheumy will check for RA, lupus etc to discount them. My PMR symptoms have been in feet, hands, shoulders, neck, arms and legs. Fatigue has been a significant issue since it started. If any of this sound familiar along with PMRpro's explanation of hand issues above, then it needs treating. Please keep in touch and let us know if 10mg helps in the next few days. 🌻
Thank you. I am getting really stressed out, and also have really bad jaw pain and sore throat , so I don’t know if I’m imagining all symptoms of GCA as well. I have read Pred has side effect of anxiety which I have never suffered but am now! I have requested a GP phone call today but I never think they know much about PMR. All wasn’t helped by Husband asking before he left for work, if he left the lawn mower out could I please cut the grass ? 😩
What sort of jaw pain? All the time or just when chewing/talking a lot and does it then go when you stop the action?
Pretty much all the time . I have had pain in the jaw joints for a couple of years and can’t open v wide, but then a couple of days ago I’ve got constant pain all along bottom jaw line ( ear to ear chin ) I had the GP phone consult ( I think a trainee GP) I’m going in soon for a blood test, for inflammatory markers and Thyroid function, but it’s always normal . Plus a face to face app tomorrow. Oh, I cut the grass... I thought I’m going to do this if it kills me! I hope he notices, and when he does , it’ll be ‘ oh, sorry, you shouldn’t have , I would have done it ...’ and I walked dog so I’m not that bad 👌🏼just upset as only last week I had no pain anywhere .
If it is all the time then I'd be suspicious it was something other than GCA - TMJ problems maybe? (Temporomandibular joint)
You said no I hope. As PMR said what sort of jaw pain are you having?
Lord - didn't register the lawnmower bit. A resounding NO I hope ...
Sorry Brec.b, but the last sentence made me laugh. At least you helped someone (me) to have a good day today!😂😂
Your story is so like mine. I too have never been diagnosed with PMR/GCA and your symptoms seem the same as mine.I am now on 9mg from 40mg with "frozen shoulder" and endless urinary tract infections. I struggle with the NHS system and feel guilty over making a fuss.I had panic attacks which the Rheumy did not believe,she also said that I probably needed a psychiatrist. (I am in the process of moving from her) Thankfully my GP suggested Lorazepam,a tranquilizer? which worked to a point . The most helpful for these attacks was digging on a friend's allotment and being talked to by tolerant friends! I had a second opinion which said it was difficult to tell but it may just be a urinary infection and I now have an appt for November having booked it some months ago! It was so cheering to read there is someone else out there with the same problems. Incidently I am 83 and very fit normally. Keep going - I see you have a ragdoll cat, so do I !
No, I have a blue British Shorthair! Nearest catty photo I could find😍 that’s amazing about your diagnosis , as it would be easier if there was a positive blood test wouldn’t it? I have a private app in London for Embedded UTI , but both problems mean I feel I’m constantly at GP and sure I’m on letters as ‘ frequent attender’ I used to work in NHS , I’ve seen these shaming letters.
Do let us know what the outcome to the private visit gives you- that's if you are ever told!
You have a legal right to test results and all your records. You may have to find the person who conducted the tests to at least get the raw data for someone to interpret. Something is very wrong with not being able to access your records. You can send a letter threatening to sue for them. I agree with Sheffieldjane, hand and finger pain can be a part of PMR; I had it at the outset.
Very interested in your experience, as I saw a private rrheumatologist in Bristol too, (wonder if it was the same person) and to cut a long story short he told me I probably didnt have pMr because my response to pred took 8 days instead of 3, though he adj usted this to a working diagnosis later. Altog ether he didn't seem to know much. I'm still floundering, but at least he has sent me copies of all his letters. And I have foot pain which he said was irrelevant too. Also I had a lot of u t I s before diagnosis last year and then got some advice from a urologist about how not to get them from swimming pools, which I can pass on if you like. Do hope things sort out for you. I have unilaterally upped my pred to 20 temporally.too.
You can swap name on a private message...it may help both of you. Click the speech bubbles and type a breconblue in.
Is it not ok to say publicly who the Rheumatologist is? As long as we don’t ramble on and libel them? I can’t actually see any speech bubbles
I think HU doesn't like it. I will pm you and you can see if a notification comes up!
Why on earth would a doctor be unsupportive if you have physical issues? That's why we go to them; for help. Personal opinion - you may have reduced the pred. too quickly. There's lots of info. on workable tapers here. Also, sounds like your disease is just getting started so perhaps no taper yet is advisable and you need to deal with the pain well first. Also find a doctor who knows what they are doing. I truly hope you get some relief.
Just back from GP. As expected, urgent blood test done yesterday was normal ( as always!) He dictated a letter to the Private Rheum., who ordered the other tests asking him to track down results and try and expedite NHS app. Also go back up to 10 mg Pred.. so hopefully that will do the trick ... now where was that lawn mower ? 🤪
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