PET/CT Scan Normal, Bloods Normal, but Responds to Steroids!

[AtopicGuy]

I tapered off prednisolone completely to prepare for the scan, as requested. I had been reducing by 1mg/day every 3 weeks. When my appointment letter arrived, I accelerated this to -1mg/day every week. That meant I took the last pill the day before the scan. I had to be driven there and back because I felt so stiff, sore and weak, and that’s despite lying down most of every day. By then, I couldn’t raise my arms over my head (the upper arms won’t go past the horizontal) even if I do no exercise for a couple of days.

The result came through about 10 days later. It said the scan was all clear, so the rheumatologist concluded I do not have an inflammatory disease (apart from eczema, asthma, hay-fever, perennial rhinitis and allergies to house dust, mould, feathers, fur and penicillin).

My GP now says I have an “unknown disease”. I said “but one that responds to steroids; I can do so much more when I’m on them”, to which he replied, “give steroids to any man in the street and he’ll feel better.” He says he can’t prescribe any more steroids. Nor can he try methotrexate, which I had thought would be the next step, while I was still off prednisolone. He asked me if I had considered fibromyalgia. I said I had read about it, and met people who had it at a pain clinic, but the symptoms have never matched my experience. He squeezed my “pressure points”, which didn’t hurt, and decided to try me on a course of duloxetine.

The side effects of duloxetine kicked after a day or two: I now feel queasy, have a dry mouth, am off my food, am having even more headaches than usual, and have developed a tremor. But the stiffness, muscle weakness and fatigue are still the worst. I’ve only ventured out nine days in the last month and spend 18 hours a day in bed the rest of the time. Just showering makes me exhausted and it's sore raising my arms to wash my hair.

I’ve given up on doctors at other times in my life; but I'd hoped it would be different when the strange pattern of muscle weakness became clear. Some hope, eh? My wife and I have a holiday scheduled for 3 months’ time. We booked it when I was on 20mg. Now I wonder whether I dare attempt to go. I really want to try a steroid-sparing immunosuppressant.

Apologies for the saga!

[PMRpro Ambassador]

This utter fear of pred and complete belief in scans is a bit of a pain. when it has such a drastic effect on life.

Is a private discussion with a rheumy an option? Going back a long time, a rheumy gave me a 6 week taper of pred to get me through a business trip to the USA - at a point when he didn't think it was PMR and even my miracle response to 15mg pred didn't change his opinion, he wanted to use sulphasalazine but couldn't as I was about to move and needed to have a rheymy specialist to monitor it. Phew! In under 6 hours I could move normally!

But given your state - it is downright appalling they are leaving you confined to bed.

As for this belief "give steroids to any man in the street and he'll better" - it's a load of hooey but a commonly held belief. It depends on the dose ...

[AtopicGuy in reply to PMRpro]

Thanks for the reply. I agree. Twice I've had doctors tell me I've got rheumatoid arthritis when I don't have a single diseased joint in my body. I almost wish I had gone along with that nonsense, because I'd still be on steroids now if I had! PMR seems to be incredibly mysterious. The only reason they think it's caused by vasculitis is its link with GCA. Now they say they can rule it out with a clear PET/CT scan or normal bloods. But these can only show severe, active inflammation, not "scarred" or "hardened" arteries from long-term damage.

[Longtimer]

I am pretty much in your position....only difference had scan while on 5 mg, no inflammation, told to slowly lower pred. You didn't mention if you had adrenal/cortisol test now you are off pred.My symptoms are not as severe as yours, but I am still on 5 mg pred......this is a horrible painful life restricting battle....I wish I had the answers for us!

[AtopicGuy in reply to Longtimer]

I haven't been tested for adrenal insufficiency since I came off pred. But I did watch out for anything unexpected as I tapered. All that happened was my condition returned to where it was 2 years ago, but about 5% worse. It has always been chronic and slowly progressive, not acute.

[Longtimer in reply to AtopicGuy]

Hope things improve for you….

[SnazzyD]

Sounds like your inflammatory condition is on the match. However in addition, you may be suffering from poor adrenal function due to the withdrawal of Pred before the glands have started to make their own cortisol. It can make you feel rough with deep fatigue, weakness, low blood pressure, low sodium, anxiety, fluey aches and more. I can also lead to adrenal crisis which can be life threatening. Normally, the patient is reduced at a far slower rate when under 10mg in order that as the Pred is withdrawn the adrenal glands feedback registers the fact that cortisol needs to be made to replace the Pred. It seems some doctors forget this bit. Do read the information in the link below.

healthunlocked.com/pmrgcauk...

Regards your pain, sounds like you need a second opinion pronto.

I have also come across this belief that we all want to stay on Pred because it is so damned great and makes all your physical cares melt away whatever they may be.

[AtopicGuy in reply to SnazzyD]

Hi! Thanks for your reply. I have none of those extra symptoms: just the same pattern of stiffness, pain and weakness I had last time I was off steroids 2 years ago; I was tested then and it was normal. Back then it took me 2 hours to get out of bed; now it takes so long, there's no point. I try to get up for lunch and dinner and to shower. In between, I return to bed. I have to save up energy for the occasional days I have to go out. I have now had 2 GPs (the first retired) and consultations with 2 rheumatologists. I think I might have to go private, but don't know where or how. I read something about Sheffield.

[Bennijax]

are you in the UK?

[DorsetLady PMRGCAuk volunteer in reply to Bennijax]

Profile says so…

[Exflex]

I feel like asking: ‘do rheumatologists get bonus points for not prescribing steroids’?

[AtopicGuy in reply to Exflex]

I think they are terrified of being blamed for illness caused by the side effects and so ignore the benefits. I'd like to try steroid-sparing drugs, like methotrexate, while I'm off steroids, but have been denied that, too.

[darkred in reply to AtopicGuy]

I can't understand why they don't let you try it.

[AtopicGuy in reply to darkred]

Because of the normal blood tests and PET scan, they have concluded that I cannot possibly have an autoimmune or autoinflammatory disease. Therefore, they do not believe me when I report huge benefits from prednisolone, saying "everyone feels better on steroids". Therefore, they have withdrawn treatment. What I find most bizarre is that they refuse to conduct an ESR test, because they say the other tests do just as good a job. The good news is that my private GP has now found a private rheumatologist in Scotland who has gone on record as saying that significant numbers of PMR patients do have normal blood tests! I've booked an appointment and am pursuing the Immunology route, privately, too.

[darkred in reply to AtopicGuy]

What the private rheumatologist is saying seems to be the consensus of knowledgeable people on this forum. I'm glad you have an appointment and hope you get some support and help .

[AtopicGuy in reply to darkred]

Thank you. I agree. What worries me is that this rheumatologist must rub shoulders with the other one!

[PMRpro Ambassador in reply to AtopicGuy]

" saying "everyone feels better on steroids""

I do wish they would stop this stupid assumption. I only felt better on pred because I was in less pain! I actually said this to Prof Mackie when she was asking about things we wish doctors would stop claiming!

[AtopicGuy in reply to PMRpro]

Indeed. When I'm off prednisolone - especially in the morning, or after I've pottered around - the pain and stiffness is so bad, I feel like I've been beaten up or in a road-traffic accident. Perhaps it's that starting point they can't comprehend?

[PMRpro Ambassador in reply to AtopicGuy]

Maybe it is. After all, most people put on pred have something making them feel rubbish - be it PMR, asthma or a chest infection. Of course you feel better when it works!! I think a lot of them have no idea how much pain PMR is capable of causing. I have a superb rheumy - but I don't think even he gets how much back pain I have and how standing for a short time becomes excruciating.

[MiloCollie]

oh I feel for you. Here’s a hug 🤗

[Sharitone]

One of the worst things is being ill and not having a diagnosis. Inevitably people imply you are making up.

I think I would be saving my pennies to have a private consultation and not with just any old rheumy, because you have already struck unlucky twice, but one who specialises in PMR.

All the best.

[HeronNS]

What I always hate is when a patient is told no sign of inflammation (scan or blood test) when they've been on pred. If pred does its job, the inflammation is mopped up and invisible to the tests. Doesn't mean you haven't got an active disease process. I hope you soon find a doctor who understands PMR and pred better than the lot you've had to deal with so far.

[AtopicGuy in reply to HeronNS]

Thanks for all the support, everyone. It's much appreciated. After 5 days in my pyjamas, I've just forced myself to shave, shower and get dressed! I was incredibly stiff and sore before I got out of bed. Now I'm stiff, sore and exhausted!

[darkred]

I read all of your history. As a person interested in all things medical, I became very curious about your fight to get a diagnosis. I now realize there is so much to learn and many answers can be found on this forum, but the often-mysterious PMR also causes me to have questions. Your long struggle to find answers is amazing.

[AtopicGuy]

Thank you. If you haven't seen them already, here are links to epidemiological studies that show:

a) The risk of PMR increases by 9% for every 10 years of smoking 20/day; 19% for every 10 years smoking 40/day; 30% for every 10 years smoking 60/day; etc. This tends to support the hypothesis that PMR results from chronic vascular damage, not just active, acute inflammation.

acrabstracts.org/abstract/c...

b) Merely suffering with adult eczema (atopic dermatitis) doubles one's risk of also being diagnosed with an autoimmune disease. For PMR, the increased risk is about 35%.

onlinelibrary.wiley.com/doi...