Hello knowledgeable people. I need to pick your brains. A quick recap of my saga: A year ago I saw a Rheumatologist privately because my GP practice was ignoring me because my esr readings were normal. He confirmed what I already knew, that approximately 18% pmr sufferers don't have raised inflammatory markers. He gave me 120ml intramuscular Depomedrone which had miraculous results. He wrote to my GP asking her to repeat these as necessary. I did, eventually, manage to get two over the following months from a paramedic at the practice. I wanted to speak to a Dr just to confirm that someone was monitoring my progress, but no reply of course. Then, out of the blue I received a phone call from a GP I had never heard of informing me he was sending me oral steroids. I tried to query this but he would not listen to me. (There are reasons why my Consultant did not want to give me oral medication) As soon as I started on the pills I became extremely unwell. To cut a long story short, it took a GP from a different practice to insist I taper off them as soon as possible, which of course takes time. I wrote a complaint letter to my GP (who is head of the practice and whom I have not seen in over three years.)Eventually I received a long, very apologetic letter saying that the reason the 'unknown' Dr had switched me from I/M to oral was because I'd had three injections 'which was a lot'. This was 3X120mls in 5 months..A lot??? I don't think so. First question then is, does anyone know how to compare dosage of oral pred with intramuscular. He put me on 30mg. Surely, as explained by Consultant and GP who took me off them, you have a far lower cumulative dose when taken by injection. I'd like to be able to go back to him and say 30mg orally = xyz depo.
He has apologised for making me ill, but he also blocked me having an injection to get me off the pills more rapidly. I had to go back privately for that.
Meanwhile, I am in a worse state now than I was this time last year as all my PMR symptoms are back with a vengeance and I have to contend with side effects of pred i.e. loose teeth, one broken off at gum which meant a very painful, awkward, extraction as there was little to get hold of to extract. My jaws are very painful, all my teeth hurt. I've lost a lot of my hair and still bruise for little reason. I finally stopped pred at Easter. At least now I can get into my clothes again. For the five months I was on oral pred my stomach was so swollen and painful I could only wear a dressing gown or trousers where I had cut the front seam open.
So, second question: Has any of my fellow sufferers managed to keep their symptoms bearable with injections? How frequently did you have them? Did you have a treatment plan?
I did have an appointment for an injection with the paramedic for next week but that has been changed to end of June. I've tried asking the surgery to try to bring it forward but no luck. It just seems I have to fit in with what suits them, not what my body needs. It is getting increasingly difficult again to do anything. It's soothing to take a hot shower in the mornings but then I can barely dry myself and dress. I can't risk taking pred pills again to tide me over. (I was prescribed Phenylbutazone at the age of 12 for juvenile inflammatory arthritis. That didn't do my stomach much good! I've been on various antiinflammatories over the years (I have widespread advanced OA now)but it's only since Celecoxib came onto the market that my stomach has been able to tolerate any. That's been stopped now too by Dr #%@#$%!!!!!!)
Sorry this has been such a long post, but I am becoming more and more desperate to help myself since GP so useless.
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Countrykitten
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I can't comment on the difference between your oral and injected steroids except to express shock about the doctor who changed your medication without knowing what they were doing.
However, you may begin to get some relief for your teeth if you add Vitamin K2 (not K1) to whatever other supplements you're taking. It has been shown to improve dental health and I personally have found it has, over time (it's not an instant fix) alleviated my previously very sensitive teeth so that they not longer bother me at all. Vitamin K2 is important for bone health, and sends calcium to the bones. Vitamin D enables us to absorb calcium, but it doesn't tell that calcium where to go. We need Vitamin K2 for that.
It is a lot if they were intraarticular injections for a joint. It ISN'T a lot when being used as deep intramuscular injections for PMR. Then the appropriate dose can be given approximately monthly as required and long term.
However - you can't base oral dose on that since 100% of the injected dose is available, considerably less of the oral dose is absorbed/attaches to the receptors. The basic approach is 120mg every 3 weeks and later tapering as described in the full text - click on the PDF symbol to read it all, the details are on p2 under Methods.
"When we feel like it" is NOT the way to manage depot steroid injections for PMR. Since the rheumatologist approved and initiated the management is there any way of getting them to send a letter to the GP with instructions? Asking PALS may be helpful - I can't find it now but I recently saw a page saying PALS can also help with GP complaints.
The primary problem you have is that if the GP is also the practice manager you are a bit stuck and PMs have a habit of sticking with their GPs so you will need to find a way round that.
Is there another GP practice on your area? I changed practices years ago when I had a similar situation arise where the treatment I thought my daughter required for depression was thrown out by an arrogant senior partner - I went directly to her former consultant since he wasn't going to refer her and the consultant not only saw her but agreed with me and told me to change practice to a different village. It was a whole new world!
Such things are managed in the rheumy clinic here - the nurses staff the helpline and supervise the adminstration of injections and infusions with a doctor doing the things they can't by appointment, One lady - not sure if she was on this forum - managed GCA with injections as she, like you, couldn't take oral pred. She was about to go on honeymoon for a couple of months so her husband was taught to give the depot injections while they were away. It is a bit difficult to give them to yourself! But the practice/community nurse in the UK should be able with fixed, non-moveable appointments.
Thanks PMRpro. I have made an appointment to see private Rheumatologist for an injection on 5th June because surgery finally rang back to say no earlier appointment with paramedic. I've been trying to print off papers you suggest but printer playing up so I'll just give GP links and she can look it up herself (or not bother!)However, I am supposed to have an appointment with my GP end of June. Last week's appt. cancelled because she's off sick, so hoping it won't get cancelled again. I know she will just want to try putting me on statins ( last cholesterol test ok but both parents died of heart disease) I have decided I will, politely of course, decline to discuss any other subject until I have a proper PMR treatment plan. Wish me luck! Currently feeling dreadful. Went to bed at 7.30 last night because in so much pain.
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