(I originally posted this as a further comment on an older post and then it occurred to me that I should post it as new so apologies if the duplication is irritating.)
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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AnnS
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You could do worse than to tell him exactly what you've told us. And print it off to leave it with him, in case you don't remember to say everything. I do hope you have found an angel who will be able to help you.
Sorry to hear you are feeling so rotten, would guess at the moment it's probably steroid withdrawal if it came on so quickly. You can either try and ride it out for a couple of days, if it's withdrawal it shouldn't last much longer than that. You may find that paracetamol helps - you can take alongside Pred no problem.
If you have gone below the level of Pred you actually need, and if the pains are not helped by paracetamol then the only option if to go back to 35mg (were you okay at that level?) stay for a week or so, and then try reducing again - either by 2.5mg this time (the 5mg might have been just too much), or use a slower taper which takes weeks rather than overnight. You might be one of those unlucky people who is very susceptible to a change in dosage.
Pred can cause depression, so it might be worth running that past your GP if you are concerned about it.
I haven't been taking painkillers because I generally like to know what the pain's doing but I did take two paracetamol earlier and there's already quite an improvement in the back pain. Interestingly, the head, jaw and eye pain is also better which is a surprise because if this is GCA, I understood that painkillers usually have little effect.
Regarding the previous Pred dose of 35mg, I was less ill than I am now but can't say I was OK on that either because I really haven't felt any benefit from the steroids since outset, other than the fevers have gone and the blood results have improved dramatically. As described previously, I also suspect they've caused side-effects of their own which, because they're similar to disease symptoms, are hard to pinpoint. All I know is, most people seem to improve when taking them so I might need to explore different types, as suggested previously by PMRpro
I think my main worry is that the docs aren't convinced it's PMR/GCA, I'm not convinced it's not and whereas I am sure it is something autoimmune, the fact that the steroids aren't improving whatever it is scares me because they tend to be the mainstay of treatment for all such conditions.
Hopefully you may get a confirmation whether it is GCA tomorrow - do hope so. The fact that the paracetamol helped somewhat could indicate it’s not GCA, or that it’s just withdrawal pains - they do vary from person to person.
You explain your problem so articulately in the posts. It's good to take notes with you. I hope, really hope, that this random doctor turns out to be one of our rare angels who will help you row your little boat back to shore. I have never been on your high doses but can well believe that Pred withdrawal is capable of biting you hard like that. I have had enough lesser hints of its capabilities.
Try not to panic ( or is that just me). No wonder you are sobbing with those lousy rotten symptoms.
Let us know what happens to you. All the blessings, hugs and handholds you can cope with!
Jane x
PS. Never worry about repeating in a post. We all do it all the time. If truth be told we only have about 6 stories to tell and maybe 3 solutions. Well you know what I mean.
Thank you for the comforting words, Jane. Hugs are definitely what's missing in my life and yes, panic is definitely a bit of an issue because 3 months of being confined to barracks, feeling as horrible as this, makes me feel like I'm never going to get better and it's hard to keep cheerful and motivated.
Don't have high particularly hopes of tomorrow's rheumy being a 'rare angel' but you never know where one might be lurking. If I don't like him, I'll just have to find another one. Everyone seems to either be booked well into the future or on holiday at the moment so it's not an easy quest.
I do know how you feel, never mind " confined to barracks" in the " cooler" sometimes. Is that the term for the windowless box they put naughty soldiers in?
Hello, it may be 5mg drop is too big in one go for you. I found it a smoother ride doing 2.5 mg at the higher doses but I still felt it. In these early months much of the learning is about what is withdrawal and what is flare in your body. Once that became clear in time, it was easier to stop panicking. I did get biopsy wound pain during withdrawal for some reason and mistook that as flare. As a rule, for me, withdrawal comes 1-4 days and GCA having a think about it is one week plus. Looking back I can't believe how scarily weak the Pred made me and emotional. Hang in there. It is so tempting to reduce faster just to stop the hell. I could never have done Tesco on 30mg Pred, delivery was my saviour.
This is helpful, thank you Snazzy. The return of body pain was so dramatic that I also think it was probaby the steroid reduction. The head, jaw and eye pain has been a feature since outset but it's not really typical GCA pain. It tends to be sporadic but I've only had a handful of full days completely without it. I've definitely had pain in the biopsy region too so I guess that stirred everything up.
I felt totally awful in Tesco but was a bit relieved to have people around. At least if I passed out in there, someone would call an ambulance and then I might get some much needed attention. I thought people normally had almost superhuman powers when on high doses of steroids so haven't been able to understand why it's hard for me to even stagger across the road to the post box. I haven't had sleeplessness, my appetite hasn't increased and I haven't really felt any benefit at all. I do, however, notice the chipmunk effect starting on my face!
Well, I didn't get the Superwoman effect! I had to do everything in slow motion, I was so weak. Quite a shock for a previously fit 54 year old! If you read posts of people who do go into overdrive, they crash in the end. I think it was a blessing because it stopped me over doing it so my body could get better. Unless you have PMR the idea isn't to have Pred so we can feel great and carry on regardless, it is to cut down inflammation to stop worse things happening. You need to heal yourself but in the early days of bewilderment and distress keep your head down and rest as much as you can. The better days do come as the dose drops.
I think it probably is due to steroid withdrawal since it happened so quickly - some people don't cope with reductions well, no reduction should be more than 10% of the current dose so 5mg at 35mg is a bit too much.
If paracetamol is helping it does cast a bit of doubt on GCA - but what the doctor needs to do is decide WHAT it is if it isn't GCA...
It sounds as though you are having an absolutely horrible time and as a fellow sufferer have total sympathy. I started at 60 mg for my GCA and Everytime I reduced by the doses the Rheumatologist had specified I felt extremely ill, so I had a second opinion and never dropped by more than two and a half mg a time, waited for my body to adjust and then dropped again. No rule fits all and the one thing I have learnt over the last 15 months is to listen to your body. I am now on 11 mg and feeling so much better and getting a life again.
Thank you, Sho-Sho. I've read your previous posts and can see you've had a real struggle so it's good to know there's light at the end of the tunnel. I can't believe how ill I've been feeling and it just seems to go on and on. Life has been cancelled and it's hard to keep emotionally healthy when all you can do is sit very still... and sweat from the head. I've seen lots of posts from people who immediately feel better once the steroids kick in but that hasn't happened for me... in fact I feel worse... so even the diagnosis is suspect at the moment. As you may have seen earlier, my regular trusted rheumatologist has let me down badly this time so this morning, I'm off to see another one. If he looks like he knows what he's doing, and I like him, I'll change. Otherwise I'll keep searching until I find a good one. It seems to me that proper medical support is the key to dealing with this and it appears to be thin on the ground. As with most chronic conditions, chasing around for your medical care gets more exhausting and stressful than dealing with the disease itself. I'll report back later when I've seen 'the man'.
Well I've now had a very long and very interesting consultation with the new rheumatologist. I took with me reams of stuff - test results, letters, a 4-page potted history and 'the spreadsheet', which sometimes sends doctors running for the hills. His nurse took it all in advance of the consultation, he was a long time reading it, and when I got in to see him, it was spread all over his desk and he said he thought it was fantastic. He's even asked me to dig out some other stuff and e-mail it to him tonight. He said that life as as a rheumatologist can sometimes be a bit dull and with no disrespect meant to me, he loves having something this complicated to get his teeth into.
He is not convinced it's GCA either so is organising a whole load of other tests which I am now trying to 'persuade' my insurance company to pay for because they are mega-expensive and I want them done as quickly as possible because I've had more than enough of feeling this awful.
In the meantime, he agrees with the previous rheumy that I should continue to taper the Pred down to 20mg but has given me an e-mail address on which I can contact him urgently if anything untoward happens in the meantime. And he promises he will respond!
So, so far, so good. It obviously remains to be seen how good he turns out to be but he was very interested and seemed very keen to get to the bottom of what's going on so that's a very good start. I also liked him... and he had a sense of humour... which is always a good thing to me and I do feel a lot better for having seen him.
As an aside, on the way back I dropped into another hospital to take them a fingernail in a box, to be analysed for fungus etc. in a different quest to find out why my nails have become ugly and deformed. Life is such fun these days... NOT! My lovely nails were the last thing to go!
Yes I did and the finger where the nail came off is bandaged so he asked me about it anyway. I also took photos of an impressive full-body rash I had last year, when I asked the dermatologist to test for Lyme Disease, and he was really pleased with them. When I left, the poor man's desk looked like a bomb had hit it but he seemed quite happy. He's asked me to send him other historic reports too so he appears to be hungry for more. In the meantime, he's sending me for an Isotope Bone Scan; CT chest, abdo, pelvis; MRI angiogram of brain and neck and a full autoimmune blood screen. Can't say I'm looking forward to the angiogram but because my existing autoimmune diseases were diagnosed 10 years ago, he thinks they should be revisited.
I think you got a rare angel Ann. Pretty empowering when you think about it. Hope the blessings continue towards your good health. You must be pleased with yourself, in a good way! 🌸
Yes, thank you. It definitely does feel better now that someone's showing some proper interest but even now, the euphoria is wearing off a bit as I sit here with a return of the stabbing head pain. It's the fear and uncertainty of this horrible disease that's harder to deal with than the symptoms, for sure.
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