Confused

[Countrykitten]

I'm sorry if this is a bit long and rambling, but I'm feeling a bit lost and confused and not sure where to turn. I originally posted on here in June when my Osteopath suspected PMR and wrote to my GP asking her to investigate. Eventually, I was given an ESR test which came back 'normal' so no further action from GP. I was aware that about 20% PMR sufferers have normal results, and as I have been taking NSAIDs for many, many years I would expect it to be suppressed. I tried to speak to a GP to ask where I go from here but after four days of trying and failing to get through I had an appointment with my Orthopaedic consultant who also thought I have PMR and arranged a private appointment with a Rheumatologist colleague. When I saw him he said he cannot give a 100% diagnosis as there is no definitive test, but my symptoms did point that way. He gave me an intramuscular injection which he prefers to oral therapy as smaller doses can be given thus decreasing chances of side effects. The result was little short of miraculous, within two days I went from being barely able to push myself up out of bed in the morning to tying up tomatoes in the greenhouse at 6.30 in the morning! The crushing fatigue disappeared and I felt like the old 'me' again. When I went back to the consultant after four weeks he recommended I carry on with injections and wrote to my GP asking her to continue to administer them. I was feeling very positive and optimistic until I tried to arrange another injection. I was told by a very rude receptionist that I would just have to wait my turn as there is a long waiting list. I tried to explain that this is not a one off joint injection ( I have those as necessary at the Arthritis centre) but she insisted I had to ring at eight in the morning and try to get on the list! Eventually I managed to speak to another, more helpful receptionist who explained that 'the chap who does the injections is only there every few weeks'. She did make me an appointment for a few weeks ahead, by which time (12 weeks after the original injection) I felt complete!y 'seized up' again and exhausted. The 'chap who does the injections' is not a Doctor, but a Paramedic and he has only ever done joint injections, but was happy to go ahead if I was. He had to root around to find sufficient (Methylprednisolone?? I think that's right) so I had 3x40 ml vials. He said he thought these injections should be administered by a doctor. The results were nothing like as dramatic as the first one, but I did feel less exhausted and slightly less stiff. I had another injection two weeks ago. There's no doubt these injections are helping me a bit, but I feel this 'hit and miss' approach can't be the right way to go about it. I would have expected some sort of treatment plan. I keep wondering if I should try to at least get a telephone appointment to talk to a Doctor, but I'm afraid whoever I speak to might just stop me being able to have the injections. I have been a patient at that practice for over 23 years. It used to be good but is now the worst one locally. Everyone complains about it, but nothing improves. Everything now is done by the Nurses, Paramedics and Pharmacist. I could go back to the Rheumatlogist for the injections but that's over £200 a time!

My profile is I'm 77. I've been registered disabled for over 30 years with osteoarthritis,(I developed juvenile inflammatory arthritis aged 12) spondylosis, cervical stenosis, etc.etc.. I had to give up work, as a Chiropodist 25 years ago because nerve compression in my neck affects my hands and I could no longer hold a scalpel, so I'm used to pain/mobility problems, but the bilateral shoulder/arm stiffness is a recent ( this year) phenomenon. I'm also Hypothyroid so used to the exhaustion from that. These days my whole shoulder girdle/collarbone area is painful. I've just folded some towels out of the dryer and feel as if I've been lifting heavy weights above my head. Does this sound like PMR ? Mornings are always worse and some mornings my arms are so shaky I can't lift a spoon to my mouth.

Once again, sorry this is so long and rambling, but I don't know anyone else who understands.

Thank you.

[DorsetLady PMRGCAuk volunteer]

Certainly does sound very PMR like. Is there another GP in the surgery you can see who takes account of your symptoms rather than your blood results…and you are correct, not everyone has raised markers.

Or any chance of seeing another Rheumy privately who goes down the more conventional route of oral Pred. If you say roughy where you live, we can perhaps recommend someone.

Maybe have a look through this as well for your own info /probably sent it before, if I did just ignore!

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Sounds very PMR-ish and the rheumy did agree. It is all very well HIM preferring i.m. injections and they ARE a recognised means of managing PMR. However - they have to be done properly, about once a month initially and not getting them in a timely manner means flares which is also really not ideal because every time you flare it becomes that bit harder to get things under control.

As DL says, either you need a sensible GP who will accept the rheumy's opinion but switch you to oral pred (75% of PMR cases are managed by the GP, it isn't beyond them) or you need a private session with a more sensible rheumy. i.m. injections aren't commonly used - and in fact you could be trained to do them yourself, one lady in the south managed her GCA with injections and her partner did them for her. But the simplest way is oral pred and tapering the way we do it to find the lowest dose that works for you.

[Bridge31]

Gosh poor you, that is a dreadful way to be treated especially with all your other medical issues.

As Dorset Lady said you need to find a Rheumatologist or a GP who understands PMR as soon as possible.

[Loyd]

Oh dear you poor thing. It’s just awful you can’t see a doctor! I had the same problem with my blood tests being normal and the doctor changing her mind about putting me on prednisolone. I had a friend who offered me some to try and on 15mg I was miraculously ‘cured’ in 2 days. The doctor then agreed to prescribe it for me. That was 4 years ago - after 3 flairs I’m still struggling to get below 3mg. I hope you can see a different doctor who can help you. Could you not take pills rather than injections? - you have more control that way. I wish you the best.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

Although they worked for you, taking somebody else’s tablets is really not a good idea.

[Loyd in reply to DorsetLady]

I agree. I was not recommending anyone to do that. At the time for me I was desperate and it was only to see if all my pain and exhaustion was PMR or not. The doctor was going to do nothing because my inflammation had dropped from being high to back to normal rang which made her change her mind about prescribing pred.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

I know you are not recommending, and aware you were desperate , but we do have to be very careful not to “suggest” anything like that-especially if a new member sees it.

That’s all I was trying to get across, no personal attack on you. 🌸

[Loyd in reply to DorsetLady]

I understand. 👍

[Smithie49 in reply to Loyd]

I did the same as I was desperate. The GP refused to prescribe steroids as my bloods were normal but I could barely function. When offered prednisolone (once prescribed for my 2 Yr old granddaughter and by this time we'll out of date) I debated long and hard before taking them out of desperation. They worked overnight then a letter to a different GP got me the treatment I needed. Difficult isn't it?

[Loyd in reply to Smithie49]

Oh that’s amazing! You were just like me desperate! I don’t understand why Doctors don’t use it as a diagnostic tool. One week on 15mg is not going to harm anyone. If it doesn’t work I’m sure a very rapid taper is fine.

[Smithie49 in reply to Loyd]

Thanks Loyd. I've read loads of papers and other things about PMR and apparently the incredibly fast response to steroids is used as a diagnosis as a fairly high percentage of sufferers don't have raised blood markers. Crazy that GPs don't know this though they do have to cover a lot of ground 😳

[Loyd in reply to Smithie49]

That is absolutely correct Smithie. So many of us don’t have the markers - up to 20%! Of course they should use a few days of steroids to reach a diagnose. I’m sure no other diseases react so quickly. I couldn’t get out of bed or dress without help then 48 hours after first dose of 15mg I was pain free. My family were astounded and couldn’t believe the difference.

[PMRpro Ambassador in reply to Smithie49]

It is actually a discredited concept from some years ago. There are several versions of PMR - it is not the benign and simple disorder some thought it was - and some still think. The idea that 15mg is enough to produce relief in 6 hours - as it did for me - is very nice but doesn't always apply. Just like the "2 year myth" as Prof Sarah Mackie in Leeds says. Maybe a third of patients come under that heading - which means the majority have it for longer and a very small proportion have it for life.

But just because I had a miracle in a few hours doesn't mean I've had an easy time - I've had PMR for 18 years, the first 5 without the benefit of pred. I had an amazingly fast response but it has been a perpetual struggle to reduce, I only got to 5mg once and then had a relapse. There are a few of us on this forum.

[Loyd in reply to PMRpro]

I stand corrected and accept your vastly more knowledgable approach. I’m sure you’re right it’s not as simple as it was for me for many people. I do think however the doctors need more knowledge too!

[PMRpro Ambassador in reply to Loyd]

Oh they do and the charity has funding available for a GP education programme but Covid rather got in the way just as it was about to be launched. That is why we try to make sure patients are well informed and able to question the process of management. There are a lot of doctors - GPs and rheumatologists who have learned a lot in the last 12 years one way and another.

[PMRpro Ambassador in reply to Loyd]

See my reply to Smithie49 just above this reply. It isn't as simple as taking 15mg for a week and getting an answer. For many 15 mg isn't enough and it can take a few weeks. Your concept would leave many without a diagnosis because they need more or longer to get a response - there are so many variables at play. In fact, if you take 15mg for a week you can just stop. But it isn't a totally harmless approach and something you should never do without a doctor on board. It may not be so harmful - but if you take someone else's medication because "the symptoms are the same" you can get into real trouble and miss the real diagnosis.

[Grammy80 in reply to Loyd]

Any horrible side effects? I know when my 3mg time comes, I'll stay on it forever if I have to. Some rheumatologists recommend this.💞

[Loyd in reply to Grammy80]

This is my fourth attempt in four years! I’m going so slowly. All good to date. If I get to 2 and a half mg (single pill) I’ll stick for a long while. Good luck with your journey. 🤞

[Grammy80 in reply to Loyd]

I don't have MD after my name, Loyd, but I'd be happy with that also.💞

[Tiggy70]

So sorry to hear you’re having a tough time. I can’t advise you what to do but I’m sending you a virtual hug 🌸

[Iamfedup]

Oh bless you that’s dreadful!You really need oral Pred and I can’t understand why you are not getting it. Sending love and healing ❤️

[Grammy80]

So sorry, I hope you find the caring here strengthening and can get on some oral steroids~!💞

[Zebedee44]

What a rough time you have had with your surgery. Have you tried writing a letter to your GP? I always find that old method the best to get straight to the doctor.

[Countrykitten in reply to Zebedee44]

Thanks. I think I might have to, although I know even letters from Consultants are just filed 'in the system' and you have to chase then up on the 'phone so I'd still have to go through the receptionists.....I have just wasted more of my life hanging on the phone only to get the same message, they are too busy to take calls!!!! WHAT are they doing?I have to go for my thyroid blood test next week so might ask the nurse if there's any way she can get me a face to face appointment.