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PMRGCAuk
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Getting nowhere... fast

Since I last posted I've been sitting here, waiting to feel better, reading everything I can find on the subject, but now I'm totally confused.

For suspected GCA/PMR I started 40 mg of Prednisolone a month ago, reducing two days ago to 35 mg, but still have pretty much all the symptoms, except for the fever which only makes the odd appearance now, and is only slightly raised. However, my blood inflammation levels have dropped dramatically and did so very quickly. A temporal artery biopsy on 14th Sept was negative and two complete evaluations at my local eye hospital revealed nothing sinister.

All the original symptoms are still there, e.g. stabbing pains in head and eyes, jaw pain (although not triggered by eating), and a general feeling of being too unwell to do anything, other than sit still. Profuse head sweating has got even worse, my eyes are terribly dry and my vision is blurred, spells of irregular and/or fast heartbeat, two fingers on my right hand have gone numb and now I have worse weakness below the waist than I had at the start of this horrible episode. My dermatologist said he thought the weakness was probably due to steroid-induced myopathy and my rheumatologist said that the steroids could be responsible for some of the other things so how the blazes can you separate symptoms of the disease from side-effects of steroids?

What I am really concerned about is that the steroids aren't improving how I feel at all and it seems that most people experience a quick and often quite spectacular improvement. Neither have I had an increase in appetite or disrupted sleep which I was expecting with such a high dose.

My life has been totally paralysed by this for more then two months now so I need to at least understand why because at the moment, it's all quite overwhelming and totally depressing.

Sorry this is a bit of a moan but I wondered if anyone else has experienced such a lack of response to steroids. I do have other autoimmune diseases but definitely this was a severe inflammatory episode of some kind so surely, whatever it is, there should have been a better response to the drugs.

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Oh boy, it's rubbish isn't it? When I was on 40mg for GCA 5/6 months ago, I was feeling absolutely awful. In fact I felt worse than the few days before I started Pred as it blew up so quickly. I then wasn't sure if it was a delayed GCA or the steroids. Four days previously I was fit an active (well I thought I was) but I was suddenly weak as a kitten, blurry eyes, heart doing funny things, sweats, feeling like I had flu, a bit funny in the head, dizzy, needing to lie down frequently, anxiety, depression, the list goes on. I ended up taking my Pred in the evening because it zonked me out like I was drunk for the first few hours. I didn't have any head pains though other than from my biopsy. I still get pains there and in my jaw when I reduce on about day 4. I felt like the bottom had fallen out of my world until about 20mg, when slowly I felt a bit more human.

I think at these higher doses the spectacular improvements aren't always apparent because the Pred monkeys around with everything else. Hang in there, but be careful of reducing if you are getting GCA symptoms. I found that a 5mg drop was too much in one go.

Above all, take it easy and just accept that things are a bit rough at the moment but they will pass.

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Thank you for sharing your horrors because I also think I feel worse now than I did when it all started, probably due to the steroid experience. Come to think of it, the stabbing pains in my head had subsided and reappeared after the biopsy so perhaps it's that that's responsible. I've had all the things you mentioned, including the anxiety and depression, which is really unusual for me, and then it's easy to get in a bit of a spiral, worrying yourself into a frenzy which then makes all the symptoms worse.

The steroid response is a bit of a mystery though because initially, I tried an injection which did provoke a dramatic improvement but only for a couple of days. The tablets, however, not the same. In fact for the first week I wouldn't have known I was taking them- no improvement and no side effects whatsoever.

I am nervous about dropping the dose at all while the head symptoms are still around, and didn't really want to drop it a whole 5 mg either, but when I said that to my rheumy, he got a bit irritable. He will be finding another e-mail waiting for him on Monday though.

It's good advice to just accept things and take it easy and I really don't feel well enough to do anything else so getting frustrated won't help at all. I'm just so thankful for the Internet... and my dishwasher... and you lovely ladies who always spring into action to give help and advice.

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Oh My Dear, no advice to offer, just a giant virtual hug for you.

I trust this rough spell shall pass, and in the meantime, try to snuggle with your favorite blankie, breathe deeply and let the discomfort ease away.

Kind regards, Jerri

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Have you seen the biopsy procedure on YouTube? It really is quite an invasive thing with different layers of damage and not your average needle in and out job. Lots of healing needs to happen underneath and nerves have been cut through. I have found the wound has healed a treat but I still get pains around the TMJ and back of head that I know are nothing to do with the GCA. At first I thought it was a flare and got myself into a right tizzy. Then I looked at the pattern, the fact that normal pain killers got rid of it, Bowen therapy got rid of it almost immediately and no other GCA symptoms went with it. Took me about three months to work this out.

When you've got anxiety and Pred brain fuelled by general disappointment at the whole thing it doesn't help with keeping calm and going through the logical thinking list. Time helps with learning your body's new language.

As for reducing, you have to become annoyance proof unless there is good medical evidence. Having been successfully reducing at my rate and not the fastest rate on their guidelines, I went to the Rheumy this week. Had to go listen their displeasure, feel flat and scared and then pick myself up and get back on my path. As long as my GP keeps funelling through the Pred, I'll be ok until such time there is some other medical reason, rather than what ifs, that I must go faster.

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I have PMR/GCA and had 2 flares earlier this year thanks to the Consultant who kept getting me to reduce although I had all the symptons back. I was put back up to 30mg by my Dr and I have been on that for 4 months. It is only now that I feel I can reduce and I will only be doing 1.5mg following Dorset Lady's plan. Stick to your guns and do what you feel is right for you, we are all different and it is not a race to get off steroids. You need the right amount to control the inflammation. Good luck.

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This is all familiar to me, although my journey is now 20 months. On at least 3 occasions I have had a short but large increase in dose which has worked for a short while, so the thing is susceptible to the steroids, but the steroid side effects always take over. I find like Snazzyd that from 20 mg downwards I feel more human. For example hair stops falling out and is now growing curly for the first time in 67 years! The answer seems to be to find a balance between feeling steroid awful and GCA/PMR awful! As to dose reduction I did it slower than 5 at a time, if all seemed fine then I reduced again quite soon. I now find myself stuck on 18 for the 5th time this year but have managed to go for a ride and tidy the summer house this week.I suspect rheumy will insist on further reductions when I see them week after next and the dance will start again!

I know the feeling of confusion and anxiety very well and I do think it would help if the doctors admitted they really don't understand these horrible diseases either, I can accept don't know as an answer what I find trying is endless attempts to explain every symptom as something else, TMJ, steroid myopathy, old age (active 65 yrs at outset!).

All I can say is hang on in there and you will find a way forward and enjoy good days when they occur.

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You have had a long and frustrating journey to where you are now and I know we all have to make a career out of learning how best to take care of ourselves. With my other autoimmune diseases, I've always been encouraged to take ownership of it by my rheumatologist and he's previously been open to considering all my theories but not this time, it seems. For a start, he's not convinced I have GCA/PMR so seems anxious to get me off the high-dose steroids as quickly as possible and I haven't yet had the opportunity to discuss with him the reasons why I think I DO have it.

How interesting about your hair. Mine was already thinning and I've been plagued all my life with unruly curly hair so perhaps this will ultimately change it to straight and lustrous.

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Hi AnnS

I am very new to the pmr diagnosis but know it must be awful to feel what you are going through. The only thing that I can add is to keep positive and don't worry about off loading to your fellow sufferers. They keep us going and help us to get through any difficult stages. Keep telling yourself that it will get better. We are all thinking of you.

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Thank you. The support really helps xx

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My initial thoughts are that if you haven't responded to 40mg pred the chances that the PMR-type symptoms are PMR is small. If your jaw pain is not triggered by chewing the chances of THAT being claudication is negligible - the definition of claudication is ischaemic pain that occurs with activity and stops when you stop that activity only to return when you resume. The temporal artery biopsy is meaningless - being negative just means they didn't find what they were looking for, not that you categorically do not have GCA. A positive result, on the other hand, is 100% confirmation you have GCA. I also think it is highly unlikely that the weakness is steroid myopathy after such a short time - although it might be how you respond to high dose pred.

I think your doctors are looking at something and not seeing the trees for the wood - they have decided you have PMR/GCA and it possibly isn't. They really need to think laterally/outside the box to use modern parlance.

BUT - and this is a big but, having read your reply to Snazzy: maybe you are not absorbing the pred properly or have another problem with the version you are on. I had been fine on 10mg of gastro-resistant prednisolone until I was dispensed tablets from a different manufacturer - previously they had been in blister packs, suddently they were loose and dispensed in a bottle. The 5mg ones simply didn't work - the 2.5mg ones used at the same dose did: I flared in a day or so if I used 5mg, was fine on 2.5mg tabs at the same dose. On medrol I got to the stage where 20mg didn't work for ages, mid-afternoon. I was switched to 15mg prednisone as Lodotra and had the miracle response the first day and speedily reduced to 10mg and below.

If the injection helped - ask your doctors to try Depot Medrol injections - avoids any gastric problems and is now suggested in the 2015 Recommendations, Recommendation 5, for PMR

rheumatology.org/Portals/0/...

I know a couple of people who have had it for GCA because they were unable to use oral pred.

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This is very interesting and whereas I feel like I'm already making a career out of searching for adequate care, I think I'll have to up my game (more modern parlance) and search for further answers. The main problem at the moment is that my rheumatologist, who has been looking after me admirably for the past 10 years, seems to be having a funny turn and I haven't been able to see him since the first (rushed) consultation a month ago, at the beginning of this episode. He said we could do things by e-mail but then doesn't answer what I send him. I complained to his secretary last week and he did then call but was rather irritable and reminded me that I'm not his only patient and that he couldn't understand what I was so worried about re reducing steroids whilst still having symptoms. Incidentally, he doesn't think I have GCA/PMR but hasn't explained why or what he thinks it might be. In the meantime, my GP won't interfere but gets bloods done and has given me a further supply of Prednisolone.

The history of this is very long and very strange, summarised as follows:

July 2015 - sudden and dramatic onset of PMR/GCA symptoms - cranial ultrasound, full body PET/CT, nerve and muscle conduction tests, blood inflammatory markers - all normal. An 80mg Depot Medrol injection had no effect whatsoever. Docs decided it wasn't PMR/GCA, upped my normal meds and sent me away to live with it. Symptoms gradually improved on their own but the right-sided head and jaw pain continued for a good year before going away completely. Following this though, I felt as if I'd aged 20 years and never got back to where I was beforehand. Told everyone who would listen at check-ups etc. but no further action was taken because there was no clinical evidence. Just regarded as part of my existing autoimmune conditions, getting older etc. etc.

July 2017 - Suddenly felt particularly lousy, overwhelming fatigue, stiffness, weakness and pain all over my body. GP did blood tests and a chest x-ray - all clear. 3 weeks later, felt even worse and developed a fever that wouldn't go away. GP repeated bloods - ESR 107. CRP 14. Went to see my rheumy's partner who didn't think it was GCA/PMR because he said if it was, my CRP would be higher???? At my request he reluctantly gave me a 120mg Depot Medrol injection and this time it worked. There was a quite dramatic improvement in the pain and weakness but it only lasted for 3 days. Back with my usual rheumy we agreed that we couldn't take chances so I started the 40mg Pred and he organised the biopsy.

What you say about the drugs is interesting too because I have a history of reacting differently to different brands of the same drug and already have to insist on some particular brands but steroids are a new thing to me. The rheumy gave me Prednisolone Gastro-resistant and my GP has already tried, and failed, to give me the presumably cheaper uncoated ones instead. They are 5mg tabs but what you've experienced with the different doses is fascinating. You must have a very good relationship with your doctors because I suspect if I tried to discuss this with mine now, they'd think I'd gone completely bonkers as they seem to be regarding me as bordering on hysterical as it is. This is why it's particularly disappointing that my rheumy is behaving so strangely as he knows me very well and we usually have a great relationship. I reckon he's over-stretched himself but that's really not my problem so perhaps I need to find someone else and start all over again.

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Oh for ***** sake - some patients only have raised ESR, some only have raised CRP, some have raised both - and some have raised neither. All combinations are possible and there is plenty in the medical literature about it. I'll find you refs if you think they'd help.

GPs were told that plain plus a PPI was cheaper than gastro resistant (it was claimed g/r was 17x more expensive) - it might have been at the time but the manufacturers immediately increased the price of plain pred. The difference after that was 30 tabs plain £1.31, 30 tabs g/r £1,86. A PPI was also £1.86 - and required 2 dispensing fees instead of just one, another quid or so. g/r work out cheaper when you do the arithmetic with the right figures.

I now live in Italy - so changing brand wasn't an option, I had to start Medrol as prednisolone isn't available here - downright disaster over about 8 months. Then my GP suggested we try Lodotra - because we can. You have to pay for it yourself in the UK because it IS expensive.

Where in the UK are you?

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I'm in Brighton and the owner of one of the worst NHS trusts in the country, now in special measures. From many past experiences I will do anything to avoid their awful services so go to London for rheumatology and Worthing in the neighbouring county for dermatology. On hearing of my plight, Worthing have this week offered to take over my rheumatology care but only if I square it with London first. The problem is, where I go in London is a world-renowned centre of excellence for autoimmune diseases and even mention of the doctor's names seems to have a strange effect on local doctors. This time, they've been anything but excellent though and I'm truly shocked, particularly as I saw them privately, so it's hard to figure out what to do next.

Frankly, right now, I'd pay whatever anyone asks for a sound diagnosis, the best drugs and some proper advice because I'm not spending it on anything else, sitting here... except cake and vaping juice.

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Our favourite southern recommendation is Rod Hughes in Chertsey - does private and NHS. Very worth the journey and the £s.

Why not start a new thread and ask if anyone can recommend any of the Worthing rheumies?

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Hi. Sorry to hear about your problems. I attend Worthing and found my Rheumy ok to start off with but not now. Last appt came away thinking what a clot he is! Go on to Worthing hosp Consultants and decide which one you would prefer. Good luck.

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Thanks for this. I know who it's going to be... just not if he really knows his stuff. It's all a bit of a shot in the dark, isn't it, unless we take ourselves off to one of the few recommended experts in the UK.

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I was diagnosed with GCA having had a Temporal biopsy, treated with 60mg of steroid which certainly stopped the headaches, then reduced to 40mg where I stayed for seven weeks at that level before trying to reduce. I felt rubbish, unwell and exhausted for the next six months and unable to do anything. So don't be surprised by your symptoms - my Rheumatologist kept reassuring me that I would begin to feel better as the inflammation slowly subsided and also the side effects from the steroids would be less once I got to a lower dose. This all happened when I got to 15mg, it has taken nearly a year - I still feel very fatigued but I don't feel ill - there is hope at the end of the tunnel but you have to be patient!

Good luck.

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Thank you for the encouragement. I could cope with the fatigue but feeling this ill is horribly scary. I do think reducing the dose already is a mistake so I'll have to start battering my rheumatologist by e-mail again tomorrow. Strangely, the inflammatory markers in the blood subsided very quickly and the CRP is already back to normal so the ongoing symptoms are my main concern. I'm not very good at patience but I know I'll have to learn.

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Hi Ann, Sorry you are suffering so much right now. This probably sounds bonkers but I suspect that you are not on enough Prednisalone to zap the inflammation, so you are getting the worst of the disease plus the steroid side effects. I would return to your doctor and tell them that you are still plagued by these symptoms. On the correct dosage you can expect much better relief. Many weird symptoms come and go, fear makes them worse. They don't always mean something sinister or lasting, you are just on high alert right now. Good luck. Let us know how you get on.

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Thank you Jane. I have also suspected that the dose might not be high enough but none of the medics agree. I've said it to my rheumatologist (on the phone) and during both my visits to the local eye hospital A & E but they all say I'm on the correct dose. I guess they're just playing it by the book, i.e. 40mg if you haven't had any visual symptoms. And you're definitely right about fear. I'm not normally a panicker but I really think I have to accept that anxiety is playing a part in all this. I noticed that I felt quite a lot better on the day I spent in the hospital for my biopsy and I think that's because I felt cared for and safer while I was there. Otherwise, "on high alert" is a very good description of how I feel while I'm sitting her alone.

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Some patients only absorb 50% of the oral dose they take, others absorb up to 90% - it is called the bioavailability. It is usually quoted at 70% but as you can see - that is just the average.

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That's very interesting - I wasn't aware of that!

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Neither, it seems, are a lot of doctors...

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Reading through this I have to add my two cents for what it is worth. I have been having trouble absorbing the prednisone and have had to get lodotra from the UK. That appeared to be working some until I discovered it Whole upon re entry. My doctors were clueless....it took a trip to the hospital with adrenal insufficiency to restore me . While in the hospital they had to give injectible steroids and for some reason gave me decadron. Upon arriving home ...I asked to be put on that. It is so far working beautifully ....it has only been a week...but I just can't help but wonder why doctors can never look beyond the normal things. I kept telling them I was just not absorbing i the prednisone after five years. I know the drawbacks of decadron...but it is stronger and also harder to taper but for right now I am willing to try. They kept telling me there were no other options.

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They need to read the 2015 Recommendations.

rheumatology.org/Portals/0/...

"Recommendation 5: The panel conditionally recommends considering intramuscular (i.m.) methylprednisolone as an alternative to oral GCs. The choice between oral GCs and i.m. methylprednisolone remains at the discretion of the treating physician."

I can't believe the level of ignorance of guidelines - especially when they can see a patient isn't doing well on oral pred.

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I know ...it makes me very angry. I had a young doctor in the emergency room. Fresh out of training and he was more knowledgeable rhan my world renown rheumatologist. Very frustrating. Thanks for the help.

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Well here I am again... having made absolutely no progress and feeling the worst that I've felt since the outset of this horrible episode. Since I last posted I still haven't felt well enough to do anything at all and now I've also run out of things to research. With all the variables re. uncertain diagnosis, continuing symptoms, different types of steroids, possible failure to absorb them properly, etc. etc. it's just too complicated. Add to the mix the continued failure of my normally excellent rheumatologist to respond to any of my queries and a GP who doesn't want to get involved and really... I'm at my wits' end.

Having been on the reduced dose of Prednisolone (35mg) for 2 weeks, I organised another blood test - ESR 13, CRP 0.7 so on Friday, I reduced the dose to 30mg as instructed. Woke up the next morning feeling absolutely terrible. Head was spinning, vision blurred, weak and shaking all over, nausea, and the worst thing was severe sciatic-type pain in my lower back which made it almost impossible to walk. Also, I'm getting bouts of uncontrollable sobbing now, which I could really do without!

As this happened the day after reducing I suspect it might have something to do with that but once again, dramatic symptoms without understanding what's causing them. As the cupboard was bare, I struggled out for a quick trip to Tesco last night but that made me feel so dreadful, I've been laying down ever since. Does anyone have experience of such things happening when reducing Pred?

I definitely need to see a rheumatologist, and quickly now, so have made an appointment with somebody completely random, just on the basis that he could see me tomorrow. Now I'm struggling to peer through my excessively dry and blurred eyes to produce a 'potted history' of this saga to present him with, poor man.

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Please tell us how you get on with your random rheumy...

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