Apologies for this post but I am so frustrated and don’t really know what to do. I was diagnosed back in September by GP with PMR. ESR 49. Prescribed 15 mg pred. The improvement was amazing. No pain anywhere (even old osteoarthritis was masked). I was euphoric. More tests discovered I had an abnormal protein in blood so referred to haematology. MGUS diagnosed and to be monitored. OK, another shock but I read up about it and was comforted by the thought it was being monitored.
After 6 weeks, reduced pred to 12.5 (coincidentally at same time as flu and booster jabs) but got banging headaches, pain in jaws and left temple. Another blood test. Face to face with GP. WBC is up, ESR is at 60. GP concerned it was GCA, pred raised to 60mg. Appt at Ambulatory Care next day, nurse practitioner thinks not likely GCA but referred to Rheumy for assessment and/or biopsy to rule it in/out. So, three weeks later I’m still waiting to hear.
Out of the blue an appt came for ophthalmology which I thought might be connected to GCA. I asked GP for further blood test to see if 60mg pred was bringing down ESR. Apparently not, ESR now 73 (3-15) and elevated WBC 16.8 (4-11). GP orders CT scan, ACR urine test, and another face-to-face for next week after appt with eye clinic.
Eye appt yesterday, behind eye looks OK, said something about optic nerve, and colour blindness, further tests for peripheral vision next week, said didn’t think it was GCA but noticed I’d been referred to Rheumy and Vascular. He said about reducing slowly with pred but when I told him ESR was rising he said perhaps not.
I was concerned I hadn’t heard about Rheumy referral in the 3 weeks since I’d been referred, thought I’d dig a bit deeper. It seems Rheumy were waiting for me to be seen by Vascular, and Vascular were waiting for me to be seen by Rheumy but neither dept had contacted me! I have to say this is a very, very shortened version of my experience of having to deal with health staff some of who have been absolutely excellent and gone above and beyond duty to try and find out what is happening and some who don’t know the difference between an ACR urine test and a CT scan (don’t go there)! Also, my GP has been brilliant, keeping in touch by phone and face to face.
So now – the 60 mg pred experience – I read somewhere about pred being the Devil’s tic tacs and I couldn’t agree more. Moon face (not moon really cos it’s bright red) and camel’s hump not too bad, but it’s the weightlifter’s neck and no chin that I’m struggling with. No weight gain just weight redistribution (my backside has disappeared and is now on my back and neck!) Matches nicely with the hairy werewolf face. Constant thirst and peeing bubbles (steroid-induced diabetes? But I've no sugar in urine). Cramping feet and hands. Weird pains in forearms and elbows. Stiff eyelids. Horrendous acid reflux and inflamed throat, so now I’m taking 40mg Omeprazole and 20 mg Famotidine. The euphoria I felt when I was on 15 mg has vanished and now, I’m about as down in the dumps as I’ve ever been (probably because of my vanity). Brain fog (which possibly accounts for this rambling post).
I’m normally very fit and before all this was walking 6 miles three or four times a week. For the last three weeks I’ve had no enthusiasm to do anything. In fact, I long for my life before when I was in pain but what I would call real pain not this prednisolone fake. Reading posts on here about other PMR sufferers I don’t even think that’s what my diagnosis should be. Surely ESR shouldn't have risen from 49 to 73 while taking pred. My initial pains were in hips and thighs not shoulders. Other PMR sufferers seem to be in far more pain than I ever was.
If you’ve have managed to read this far, I salute you, thank you and apologise. It has been a good exercise for me to try to get things sort of straight in my head. I appreciate you taking the time to read. This forum has been an education for me.
Everything will be OK in the end. If it’s not OK – it is not yet the end.
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Oh dear, poor you, no wonder you are feeling so rotten.
Ideally ESR shouldn’t be rising when on Pred, but it can be raised by other things besides GCA/PMR, so maybe more investigation required.
Don’t really follow nurse practitioner view not GCA, you have many of classic signs, but at least things were put in motion in case it was…pity didn’t pan out as should have! What’s the situation re Rheumy appt?..if GCA considered should be urgent…think you need GP to follow that up.
Agree at 60mg Pred can have some horrible side effects (been there) - which if saving sight can be tolerated, but if it’s not GCA then you obviously need to reduce.
Please let us know how next week’s appointment goes, but you need to be pressing to see Rheumy and/or Vascular consultant - sorry to keep on about that, but you’re not going to get anywhere until you are certain what you have!
Goodness what a trial and sadly, not an unusual confused and protracted diagnostic journey. No, your email is not rambling, any less detail and it wouldn’t have enough information. For those who don’t know about MGUS, me included -
Did they repeat the test to make sure it wasn’t an anomaly?
Yes, 60mg is a beast and especially hard to deal with when having to fight your corner in an informed and rational way. Try lowering your salt to reduced the puffy eyes ( watch hidden salt) but apart from keeping weight in check, having your buttocks holiday on your neck and hump is routine. Yes, 15mg is a breeze isn’t it compared to these levels? All your experiences are usual for high dose Pred but it does get better! Life will return to a more acceptable state but that is not much help now, but try to hang on to that.
There’s a lot to unpack and I’ll go for point form.
1. Given your normal Pred head and distress, do you have anybody, however unlikely, who could go with you to appointments? This is not a time to worry about bothering people. This avoids you coming out remembering bits but not the detail that could be really important, especially when it is so difficult to get information retrospectively. Plus if you don’t, your advocate can keep asking, “why do you think that”? Docs and nurses making far reaching pronouncements without any rationale so the patient can’t make an informed choice, needs to be challenged politely. Especially if there is any passing of the buck. It’s poor practice.
2. If you can try to find out what was said about your optic nerve. That could be important. But bear in mind that GCA can affect other head arteries, not just the optic ones and that wouldn’t show up. So an optician can say they can’t see any evidence of optic nerve problems but not that there is no GCA elsewhere.
3. It is tricky, if your symptoms started with the vaccine you may have been just having an inflammatory response that mimicked GCA or the act triggering of GCA. The raised ESR could have been just from the vaccine too, but it’s now hard to say. When was it last checked?
4. Neutrophil count is commonly raised in response to Pred, plus the vaccine can do funny things with it. So it’s hard to see the wood for the trees on that one too.
5. Have you reduced your carbohydrate in your diet? You can have raised blood sugar without it showing in your urine so don’t rely on that. You need to try to avoid adding to the sugar spikes induced by the Pred. Eat lots of potassium rich foods and take magnesium because Pred causes loss of these making you prone to muscle spasms. You should also be on calcium and vitaminD. When this confusion settles, a DEXA scan for bone density will valuable too in the next few months.
6. Your pain pattern certainly sounds like it could be PMR if others’ descriptions are anything to go by.
7. Don’t pin your hopes too much on the biopsy. They can have up to 20% false negative results though opinion varies between docs. Also, the longer you are on Pred at this dose, the more likely it’ll be negative. In my case it was negative but I was still treated as GCA based on symptom history and good response to the correct dose of Pred.
8. Is your GP chasing up some sort of urgent specialist opinion?
Thanks for taking the time to reply and unpicking my ramblings. I'll take on board what you've said. Although I am on a low carb diet and never add salt to food I might be eating a little more than usual. I've read magnesium is recommended for cramps so I'll look into that. Thanks again for your reply.
Even if the NP only THOUGHT it might be GCA she was totally remiss in not treating it as a medical emergency - i.e. immediate medical investigation as you would for a stroke or heart attack. In Scabs A&E (for example) that means admission to the AMAU and possibly transfer to York as they have all the gear.
Your GP can send you to A&E if there isn't a local fast-track option. Where in the UK are you? It might not be GCA (in terms of the cranial version) but it could be LVV (large vessel vasculitis) but even that is not usually referred to vascular medicine. But there is a whole range of things it could be - and if the ESR is still rising on 60mg pred, they need to investigate quickly,
I am intrigued by the area you said not to go - but, dear lord, that definitely sounds like "Here be dragons ..."
First of all, you are neither moaning nor rambling! It is very clear from your post that you need a specialist consultation and diagnosis ASAP. The good thing is that your GP is supportive. However, if you don’t get specialist attention today, I can only suggest you go to A & E where they should have protocols for dealing with your condition (s).
Take care of yourself, it will get better, and please keep in touch.
Thank you for your detailed post. This is often very useful to other people. You have had a lamentable experience. Everything that occurred to me has been said to you very eloquently by our most experienced contributors. My GCA/LVV was diagnosed by a specialist ultrasound scan. I wish you could get access to this test. It is accurate and non invasive. My temple arteries were clear and the signs were found in my left armpit, my symptoms were not classic. Many on here will recognise your high dose Prednisalone, ,albeit extreme, side effects and empathise with you. It does pass I promise. Agitate for urgent medical investigation , this is not good enough. I am astonished at that nurse practitioner. Even my brilliant, experienced Rheumatologist would never, never assume with so much at stake. Let us know what happens, wishing you all the good luck, you are owed, big time!
I don't know how anyone copes on high dose pred. I had normal pmr dose and nearly lost my mind on it and physical side effects. Still on it over 5 years. Please let us know how it goes for you. Do not worry about ranting or moaning if you need to you've had a horriblde time. Without this forum i think a lot of us wouldnt know where we were!! I hope yoy get sorted soon.
“I don't know how anyone copes on high dose pred.”….
Sometimes you don’t have a choice other than to get on with it, no matter how difficult.
Me - 2 weeks at 80mg, 8 weeks at 60mg ….then another 20 weeks at doses higher than 15mg. When the possibility of further sight loss is on the table - you’re between a rock and a hard place.
You have my utmost sympathy and understanding. You are not vain. Confidence is so important and how can you feel confident when rightly or wrongly you think you look awful! You cannot get your appointment with your rheumatologist soon enough. I too was started on 15mg prednisolone in September and am now down to 10mg. Even on that dose I have a puffy face. As I have severe scoliosis I cannot really determine whether my pain is coming from that or my PMR. My ribs are impinging on my hips and I am a very strange shape. I really dislike the way I look. Although I am very slim, lots of my clothes no longer fit as I am a different shape. My advice to you is to avoid looking in mirrors, wear something cheerful and give yourself lots of treats!
I can relate to the scoliosis. Despite for corrective surgeries I am pain-free but my chest is still quite deformed but I am upright and the shoulders are even. I had a corrective of surgery at the age of 60 at a specialized Hospital. I had to do it because it was affecting my breathing and even now my breathing is not 100% as other people.
I am so glad that your corrective surgery helped you even though the result was not perfect. This forum has shown me that there are so many people far less fortunate than I am. I spend most of the time keeping going and lying through my teeth that I am perfectly alright! The best of luck to you and thank you for your message.
Like everyone else on this forum, I am so sorry to read of your experiences. I hope you can soon find out the root cause. Even 15mg Pred gave me a moon face and at 8.5 now I am still waiting for it to reduce. At 60mg I cannot imagine how sudden a change it must have made. It is distressing to look at a stranger in the mirror. I do hope your GP is able to sort out specialist investigations for you quickly. You are fortunate that you can get in touch with him/her - unlike many of us who are told there are no appointments for the next three weeks. There is at least something youcan be grateful for!
Hi. I see this was written a month ago. I am wondering how you are doing now.. and what was the outcome. I hope it has all gotten much much better. Lots of smart caring people on this site. They are life savers... are you here?
It's very thoughtful of you to get in touch. You are absolutely right there are a lot of helpful knowledgeable people on this site. My situation has changed. I have recently seen a rheumatologist who says I don't have PMR or GCA and need further blood tests. I am tapering pred from 60 mg now on 20 mg, so side effects are easing off, thank goodness. Communications, results and appointments are taking an age. The wheels of the NHS are turning very slowly, unfortunately.
Thank you. Not doing too bad on the tapering at the moment but there's a long way to go. Rheumy says I have an inflammatory arthritis which can be identified by more blood tests hopefully. Once I'm off pred there's another drug he wants me to take (the name of the drug I've forgotten and I've not got his letter yet). It was a very thorough appointment and I have confidence in the rheumy. He seemed to think that the GP had been too eager to diagnose PMR and should have done more bloods. Once I got my diagnosis I can look further on site for help. Everybody on this PMR site has been very helpful.
I wouldn't say that was conclusive - it affects hips and/or shoulder girdles. But to be honest - other things make me feel it maybe isn't just PMR. But I still wouldn't rule it out entirely. Do let us know what he decides
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Update after getting to see rheumy
Long Haul advice and prednisone, please.
To taper or not to taper, that is the question
Complication To Diagnosis.
Feeling low. Sorry to moan
