LUPUS UK
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How are you?

How are you?

David Shrigley has it about right.

I've deteriorated quite badly in the last couple of weeks, with increasing muscle weakness and fatigue now making it hard to stand. I've seen my rheumy and endo and had muscle MRIs last week. Tomorrow, a muscle biopsy.

Rheumy says he is sure I will need IV methylprednisolone, given repeatedly over a couple of weeks. I've spoken to both him and my endo about the horrible reaction I have to oral pred doses over 4mg (shaking, sweats, nausea, racing heart etc) . Sadly, neither have any idea what might be causing it or what could be done to stop it.

So I'm booked in as an inpatient so I can be monitored throughout.

Be happy to hear anyone who has traveled this road before. x

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Sorry that things are deteriorating for you Mike. Thankfully I don’t have much muscle pain despite my ANA pattern pointing to Scleroderma or Myositis. But I can relate to the shaking and sweating and have met and admire the work of Shrigley.

My Addison’s/ Sjögren’s friend was asking after you the other day. She told me she couldn’t cope with Pred and was annoyed with her endo for getting her onto it experimentally. She’s back on cortisone now which she says is the usual treatment for Addison’s. I really hope the infusions work magically. I think she was on them when originally in complete adrenal crisis - having been misdiagnosed with ME. She feels now that the Sjögren’s is her main problem with colossal fatigue and pain but really I guess it’s pretty hard to separate the two out. She forced her previous endo’s hand to get Levothyroxine even though her thyroid bloods were indeterminate and this has helped her too. She had terribly advanced osteoporosis of the spine but has been on cortosteroids for 25 years.

I also don’t do well on Pred - it makes me a bit psychotic at higher doses and gives me terrible gastritis at lower doses even with PPIs.

And I was put in hospital under ob when I my facial problems first kicked off in 2015. I thrived briefly on IV Paracetamol, ended up monitoring 3 self harmers on my ward bay for the rushed-off-their-feet nurses. But otherwise emerged after a week none the wiser about what turned out to be a mix of Sjögren’s and Azathioprine induced pancreatitis. Just lots of concerned but baffled shrugs from my 2 consultants who kept telling me whatever was happening was rare and autoimmune. But this was all they could say - and to be fair it was a small general island hospital so 🤷🏼‍♀️

Let us know when you’re going in please so we can all root for you. Sounds like it can’t come soon enough to me. Xx

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Thanks TT, Cool to have met DS. I went to an exhibition of his at the Tate modern a few years ago - the only time I've ever laughed at loud at an art installation. I've a postcard from that beside my bed which still makes me chuckle.

I'm very keen to get treatment, of course.

But I'm also very anxious about these sweat/nausea/shake episodes. This is not like me at all - I'm generally very sanguine about drug side effects and can tolerate quite a lot. But in this case, I am very worried at how closely they resemble neuroendocrine transmitter toxicity symptoms - they are identical to what one sees in MAOI or SSRI toxicity ("serotonin syndrome"). These are very dangerous conditions, so until that has been definitively ruled out, I may feel forced to decline IV steroids....x

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Oh thanks for explaining your fears a bit more fully Mike. I admit I’m out of my depth here but feel you really ought to be in hospital under ob anyway don’t you think? It is all sounding scary from where I’m sitting eating my tea.

I know that my own horrible year started with me coming abruptly off the lowest dose of Duloxetine after 5 months. My GP had been grumpy about this because he felt we were “running out of options”. But he said if I insisted then I may as well stop - no need to taper off such a slow dose. But I went into meltdown - shaking, retching constantly to the point where my face was covered in tiny red petechae - I shook from head to toe and had a headache that make me scream. After only 48 hours of this my hubby read up and I went back on it. After this we followed what others online advised and I tipped tiny amounts of my one capsule down the sink each day until I was off it. Then I got pneumonia, UTI sepsis and pancreatis all in succession. During each week long hospital stay I saw patients and consultants gape at each other over the impact of drug combinations and drug reactions over and over again. Doctors just don’t know enough about stuff like how mast cells are activated, terrifying chemical sensitivities and of course about autoimmunity. And of course there are those who are antibiotic resistant etc. Only yesterday I discovered that propranolol - my newest beta blocker med - is contraindicated in those with asthma and those who are prone to anaphylaxis. I don’t have asthma but I’ve had anaphylaxis several times and last week had a very OTT allergic response to a bunch of tiger lilies 😬

So if you feel this way about Pred in all forms then this absolutely shouldn’t be disregarded by your medical team. X

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That's great that you're booked in as an in patient and going to be monitored. If you do have a shaky sweaty episode then hopefully they will be able to find what it is.

My only experience with iv pred was a few years back when I was having some strange nerve issues. Had 3 days of 1000mg per day. It was wonderful to walk out of there on day one feeling half normal and by day two I was almost completely normal. However, day 3 I crashed. Wobbled home escorted by family and laid up for next 2 days barely able to function. Slowly recovered but was an awful time. Eventually though things did settle so I guess I could say it worked.

Despite it all though, I'd do it again.

Really hoping it works well for you and please keep us posted. X

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Thanks, Georgie-girl,

That's very good to know. I'm not surprised that after getting blasted like that, you would have had some trouble! What a trouper you are! x

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Hi whisperit

Good luck for the muscle biopsy tomorrow and for your treatment. So sorry you've deteriorated a lot but glad you will be monitored in hospital. Maybe its the only way to get an answer to those awful symptoms!. Also, you may not react in quite the same way to the IV pred as you have to the oral pred!. I too have no experience of this but its just a thought. Will be thinking of you and sending healing vibes thru the ether. Keep us postedX

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Thanks misty. Will do! x

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I'm sorry this is happening for you whisperit. My best wishes to you.

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Thank you, that's very kind, MrsMouseSJ x

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I've been thinking about you, wondering what they've found out and how you are. I've no doubt that they'll start treatment with great caution but I'm sure you're very anxious nevertheless.

A big hug for you Mike xx

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Thank you Clareb67. A hug back x

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Hi whisperit. Sorry to hear you're in so much pain. I can't help with that unfortunately, but the Pred maybe. Sounds like you have built up an allergic reaction without the welts. I had one with all of those symptoms and had to take a break from all Pred. I can now take it cautiously. Any sign of reactions and I'm off of it. Surprised your doctors don't know this can happen especially after high doses over prolonged periods of time. I am not saying it happens to everyone, far from it. It's a rare breed who travels down the allergy road with Pred.

You're doctors really need to look into it. Hope this info helps. Loriel

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That's interesting, Loriel, thanks. How are you treated without pred? x

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Hey whisperit, When the allergy kicks in I have to use antihistamines to control the reaction. I have to have a break from it using nothing else, then we try again. Mostly ok, just now and then for some reason. I do find that Indocid Suppositories work especially well for my legs, shoulder and back. Just can't use long term as it can constipate you.

How are you now? Loriel

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Thanks for that, _Lori-el, I was wondering about antihistamines actually, from a different perspective - some types apparently have an effect on the serotonin syndrome symptoms that I am looking into. Yesterday was quite bad and this morning, I couldn't get out of bed till 15 minutes ago, so I am definitely going to give this a try. Thank you x

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Hey whisperit, Just a word of caution when choosing an antihistamine. Make sure, if using during the day, to use the non-drowsy ones. At night you can use the one that makes you drowsy. Differen one range from a2mg tablet to 180mg. Depending on needs and which things you are treating. The lesser dosed ones are generally used for things like aiding in s sinus infection to the 25mg Phenerghan in which you can take up to 2 tablets at a time depending on need again for allergic reactions(this one is the drowsy one), and the the 180mg Telfast(non-drowsy) used again for allergic reactions. I hope this helps. Loriel

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How are things this morning? We're all keeping an eye on you from afar! x

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Just back from the hospital now - and straight onto LUK. I feel I've been the victim of a knife attack. Oh yeah - I have been x

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Sorry, I'm late as usual. Your explanation of the reaction being like Serotonin Syndrome made me understand much better. Very scary. All the best to you old chap x

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Thank you Lupiknits; I had an awful night with sweats, muscle spasms and nausea, but one good things that came out of it was a fresh determination not to accept those big iv doses until he has fully explored the risks and alternatives. x

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Spot on x

Here comes the unexpected ( having a strange day)

I think I've just remembered a line of Marvell's "Dialogue Between the Body and Soul"

" Constrained not only to endure disease, but, what's worse, the cure"

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Excellent, lupi! x

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Hi Mike,

Sorry to hear you are having such a bad time still.

My experience of IV methylpred was a good one. It turned me round completely in that I could suddenly walk, not suffer from agonising joint pain. It made me very hungry though..

I had two doses 1000mg 2 days apart. The second dose gave me some mild night sweats and palpitations but I expect you've felt worse with the current situation.

Good luck with it and keep in touch!

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That's good to know. Hungry would make a nice change! x

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I ate/my fridge, almost literally! Get some supplies in for when you get home. You won't want to go shopping after your infusions as you might be quite tired

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Sounds good to me. Current life goals = "not feeling like *%£$ every day". Everything else is a bonus! x

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That is a good life goal. When are the infusions? Let's hope they turn you around.

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And I get that you are concerned about allergic reactions and seratonin syndrome, its rare but I've seen it three times, two from ODs but as you know allergic reactions are treated with IV Hydrocortisone, IV chlorphenamine and IV fluids, so essentially steroids are the main ingredients because they have a longer action. And seratonin syndrome is treated with supportative measures from IV fluids to benzos. You're 100% in the right place for the methylpred.

Its entirely up to you but what's the risk of not having it?

When I was told I had to have IV MP I was bricking it because I had seen one patient have a psychosis on it. They had a much longer course for transplant rejection. I had given the stuff 100s of times all to the benefit of the patient but you dont remember them, as a medical person you always think of the worst case scenario that you've seen. I was convinced I'd be sectioned by the end of the day after methylpred. But I was fine (apart from developing such an appetite that we had to stop at a takeaway for food on the way home). I didnt want to wait, I wanted to eat ;)

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That's a really thoughtful and sensible reply, HT, thanks. Yeah, allergies are no prob. Its that serotonin syndrome that is giving me the fear. [20 yards of negative cognitions deleted here] Time to watch someone falling over on Youtube x

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Good Luck! Whisperit.

Hope it goes well for you.

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Thank you baba x

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Hope the IV works or gives you the answers you need. Take care and good luck. Lou x

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Thanks Lou. Hope things are well with you x

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I haven't traveled your road....I only know how, well for me, scary when I was being tested for dermatamyositis....kind of like Polymyositis but with skin involvement.. while waiting for my test markers, I read what I could be up against......I am sorry you are actually having to treat and cope all that goes with your DX.....Sometimes when I over do things and my legs get tired I fear that my test results(DM) were wrong...I go to my Rheumy today...some of my blood work that I just took for today's appointment were off...... I am glad to know that you will be monitored carefully..hopefully that will help with your fears....My Best

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Thank you, hope all goes well for you today. Do let us know. x

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Thank You...I will be waiting for your results of your biopsy and IV therapy...GEEEeeee I hate this train ride we are on...

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