This is a shot in the dark as I don't recall anyone else posting about anything similar, but someone out there may be able to advise me. As I posted a while ago, I started on I/M steroids from a private rheumatologist for PMR which had miraculous results. He wrote to my GP asking her to continue injections and that's where the problems started. The practice uses a paramedic from another practice to administer steroid joint injections and (eventually) referred me to him. He had never given them I/M for PMR but was happy to do so. I had the injection, which helped, but was a little concerned that no Dr was overseeing the treatment. I eventually managed to speak to someone on the phone (foreign locum) who insisted on putting me on oral pred. Big mistake. That was three months ago and I have been very unwell since. I managed to see a GP at an after hours clinic who said I needed to get off oral pred as soon as possible and return to I/M. I've come down from 30mg to just started on 7.5. Dr says I can now overlap with injections as I phase out pills..I have the worst of both worlds now, horrible pred side effects and PMR symptoms back with a vengeance since down to 15mg. I'm waiting for an injection from the paramedic but I am wondering what sort of dose I should have whilst still on 7.5 oral. I doubt anyone at the GP surgery has thought about that. In the past be has had to root around in the Nurses' room to find sufficient for my dose as he uses 40ml usually and I have 120. I wondered if I should ask for 80??? It's all very hit and miss! I do envy those of you who write about seeing your GP. It's a fight every time just to speak to one. I only saw an actual Dr last time because I requested a call back to tell me what to do to taper when I reached 10mg. They gave me a callback from a nurse who, thankfully, insisted they gave me a face to face with a Dr. Has anyone any experience of this? I'm thinking I might go back to private Rheumy but at £250 a time it gets expensive, but I'm in so much pain, struggle to get around the house, can't eat properly, haven't slept more than a couple of hours a night for months, struggle to get dressed/undressed etc.
Sorry for long whinge!! Thanks.
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Countrykitten
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No - you should be OK to take the injection and stop the oral pred within a couple of days at most. The amount released from the injection immediately is slightly more than the dose you are on
shows the rate at which steroid is released from the injections that he worked out so really I think you have to try the jab and no oral pred and see how long you go before symptoms return. It is a good discussion there.
I think if you want to go 3 weeks you need a 120mg dose and then see what happens
Thanks. Things have just got worse! The Dr who put me on oral pred has stuck his nose in and decided I need a blood test first before he decides if I can go ahead with the injection. I have never met this Dr, he has no idea how ill his decision to put me on pills has made me. I have rung private rheumy secretary and left a message to make an appointment. Feeling totally fed up now. Family coming down for Easter and I really don't even feel well enough to see them.
I think I would put in a whinge about that doctor. Pontificate all you like about my treatment but only when you have had the courtesy to speak to me face to face. And I sure as hell would put in a complaint over the result of his switch to oral pred.
Out of interest - what dose of oral pred was it? And not methyl pred I assume?
Hi, I’m fighting for IM Pred instead of oral because I can’t cope with the steroids. My rheumatologist says I can only have three per year and wants me I take Methotrexate which I don’t want. I am coming up against a major brick wall. The IM injections have a cumulative effect and need to be administered every month. Fat chance of that for me! I’m almost bedbound and have been for the last year because the Rheumy delayed diagnosis because he said I was too young for PMR - I’m 52 now. I’m unable to fight anymore. I give up. I hope you get a better response than I have. I too saw a private rheumatologist who also said that injectable was a perfectly reasonable solution but I can’t afford to see him once a month! X
You don't need him once a month - he needs to write to your GP telling them how to use the injections and even the nurse can administer them. One lady who used them for managing GCA because she had had severe gastric problems with oral pred got them from her husband as they left on honeymoon just after she started them so he was taught how.
My sympathies. Why does everything have to be such a battle just to get someone to listen to us. My rheumatologist never said anything about injections every month, in fact he said he had PMR patients who manage on about four a year. I had to wait three months after seeing him before surgery got around to giving me an appointment for an injection there.. (Delay caused mainly by receptionist who insisted I had to take my turn in the queue like everyone else....she didn't know the difference between steroid joint injections and I/M.) By then I had stiffened up and had less energy but still nothing like as totally incapacitated as before the first injection. I do hope you manage to get some sense. You are young but my mother wasn't much older when she developed PMR. Fortunately, she had an excellent Dr who treated her immediately. I'm 78 in a couple of weeks and am resigned to being ignored. I'm lucky(if being disabled is lucky) to get Disability Living Allowance mobility for my arthritis and spinal problems so that helps to pay for some of the things I have to fund myself. Don't give up. I know how it feels to feel totally abandoned and nobody cares, but then WE have to fight for ourselves. I'll let you know what my private chap says about frequency of injections.Good luck.x
im afraid i have no experience of injections or a combination of both - but after one failed attempt i am coming very slowly from 5mg prednisolone with no obvious strange side effects like i used to - other than having the odd fatigued day. Im coming down by dropping HALF a tablet every 4 weeks and recognise that it is a slow way to do it but so far so good - Im now about start to go 3.1/2
Sorry to hear you have had such problems, I live in Somerset and it can sometimes be as bad as your experience to get a face to face doctor, although recently it has been good for me. If they ask if it is an emergency at the reception, say yes as you will get seen that day, that is how it works here. I have experience of steroid injections in my knees, done by oasis at Bridgwater hospital, I do not know what dosage will ask when I go in two weeks, it was my first injections 3 months ago and absolutely marvelous straight away almost skipping! I can't praise oasis enough and I was free from prednisolone for three months. The injections wore off one week ago and that has been really painful, stiff and great difficulty walking, have had to go back on prednisolone for some mobility am now on 15mg that is what I started on five years ago. PMR and osteoarthritis never seems to end. The doctor stopped prednisolone tabs 3 months ago and I slowly ground to a halt that was after being told I would probably need the then dose of 2mg for life. Do try and find an oasis in your area, it is free through the doctor.
I am so sorry you are having such a bad time, but afraid I can’t be of much help. I am back on 20mgs after being up and down with doses for 4years. I am so fortunate to have an excellent Rheumatologist and GP and a Rheumatology nurse I can ring. I do get times when the aching is so bad I can’t do much and have put on a lot of weight, also stressful situations bring it on, but as I am 82, it’s also Old Age. I do hope you get some proper he.lp soon. Thinking of you and wishing you well.
Just looked at your previous posts under you original name - and sorry to hear you are back at 20mg - that seem very high considering how long you have been diagnosed with PMR….
Have you been given any reason why you seem to be struggling so much?
To me it sounds as if the doctors aren't actually that good at PMR - have they been telling you to taper in big steps at short intervals resulting in flares?
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