The Coals are cooling down - update

After my last post, I really hit rock bottom. In my case this means that I could barely use the loo, couldn't hold a cup, turn a tap, clean my teeth properly or shift around in bed. I was either too rigid or the pain was so excruciating that my protective brain simply wouldn't allow me to do that to myself. I even had difficulty taking my pills. Living on my own, it was very difficult to cope, and quite scary. Going back to 5 mg didn't do the trick, which I thought it might as it was below that when the flare happened. I wanted to stay really low until my appointment with the (new) registrar on the 24th, but after speaking with tbe specialist nurse, I reluctantly agreed to go up to 20gm. She suggested 40gm, but I said just want to walk, not fly. I am hyper-sensitive to the side effects of this drug and know from experience that would go crazy on any higher - manic to begin with, then suicidally depressed. It's liked a chemically-induced bipolar disorder. Even on 20mgs, I barely sleep a wink and feel really twitchy. Including the initial injections, I have now been on steroids for 16 months, and fear that I might have to stay on them.

My RA was called Polymyalgia-onset RA. The Methotrexate and Enbrel have definitely helped with inflammation of the joints, but Prednisilone seems to be the only drug that will deal with the soft tissue. It seems that Pokymyalgia Rheumatica can burn out after two-three years, so I am praying that this aspect will disappear. I'm disappointed that the Pred. will be masking my symptoms when I see him/her next week, but I had no choice really.

I know of a rheumatologist in the north of England who instead of the tablets regularly subscribes to some patients intramuscular steroids; 160 mg depomedrone. It sits in the muscle and leaks out over 3-4 weeks at constant low level rather than the swings which the tablets give. Apparently, the strategy is recognised in NICE guidelines. It's what I had at at my first crisis private appointment and I don't remember any emotional roller-coasting then. I'm going to see if the registrar will agree to it ( though I might have to taper down the tablets first, to say 10 mg) and a see if my GP is prepared to do it for me. If it really does prevent the horrid emotional side effects, I'm surprised it's not more widely used on a regular basis ; it's probably more expensive! I've had local injections I to affected joints, but I'm talking about ongoing steroid intramuscular jabs.

I wonder if anyone has experience of this? If so, are they as effective, etc.

I would go back and edit this, but one can't do that on an iPad. Well, not in mine. Boo!

Jo

22 Replies

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  • Hi jora

    So pleased you are feeling a little better, hope it continues and you have a productive appt next week

    I'm not sure about steroid injections for pmr, haven't heard of it but I have had both intra muscular and joint injections over the past year.........tablets have never been mentioned, and reading people's experience on here I'm glad!

    I obviously can't compare the two, but I've found injections fine, I do feel more awake and perhaps just a little hyper for a few days, but I actually like that as opposed to sluggish and exhausted! I do notice when it's wearing off as pains etc start returning......am still waiting for the day when the drugs kick in to take over! But I don't feel I get depressed or anything, just a bit fed up usually because it means drugs still not working enough.

    i would think it's worth asking about if tablets are making you feel so horrible.

    Have you had a look on the pmr site to see if anyone there has injections?

    Good luck x

  • Thanks Beaches. That's really helpful. Do you have to go to hospital for your injections, or does your GP give them? I am sure you do get fed up each time you find that the other stuff isn't working as well as you would like, but at least it gives you a chance to have a peek at what's going on. With tablets, as you can't reduce faster than 1mg PM, you really don't have a clue until you get below 5mg. How often do you have injections? 80 or 160 mg? Hope you don't mind my asking. I know we are all different, but I'm doing as much fact-finding before my appointment on Monday.

    Yes, I have looked at the PMR site too. For those, there is no alternative to high dose steroids, but often for only 2-3 years. I'm not quite sure where my PMR ends and RA begins, and if there is an overlap.

    I'm going to try and arrange for blood monitoring to coincide with a waning of IM injection, so that it will give the most accurate reading, if you see what I mean.

    Thanks a lot. You have given a boost to my confidence.

    Jo x

  • Hiya

    Yes I have them at the hospital, but have been having appts every 6-8 weeks so plenty of opportunity ( sorry to all those who wait an age for appts!)......think it's just while we get things " under control" ! I only see consultant every 6 months or so, but rheumy nurse in between. Sorry to say I don't even know or ask the dose.....I was told dose is less into joint and slightly different make up for joint inj......larger molecules to stay in joint better. I think most GPS would do a general steroid though if that's what you wanted. it's hard to say how often I've had them cos sometimes it's just been a joint injection and that tends to mop up other bits as well so I'm thinking maybe every 2-3 months for General one.......something like that! I was hoping to do without now am on enbrel but no such luck yet, like you am giving it another month or so before we decide! .....oh well, what can we do but keep hoping? X

  • Thanks a lot, very helpful. I think they are also going to inject the MTX ( or I am) to see if that's more effective. Jo x

  • Hi Jo. I have exactly the same response to yours with Prednisolone re bipolar/ suicidal thoughts etc. my GP is always very reluctant to let me have it now. I have only ever been on them for short bursts - between a week and a month.

    My rheumy said he prefers his patients to have the IM injections usually. I had one (Kenalog) in the run up to my first rheumy appointment. Crazy because it masked my sympyoms and so it took another 4 months to get diagnosed! It seemed to strip my hands of all inflammation but my OA in finger tips started then and I had a week of really bad depression so that husband phoned my GP as he was so concerned. Could have just been the uncertainty and terror of getting a diagnosis of RA

    though plus the OA in hands.

    Good luck x

  • Glad to have your empathy, though sorry you have been through that again. Last time I said " I'm never going onto steroids again unless it's life or death". But last week, when I couldn't move at all, I relly had no alternative. I haven't heard of Kenalog ( sounds more like a dog food!) but if it masked your symptoms for four months, it must have been a monster dose. Above I wrote 'again' . I meant 'too'. Can't edit on iPad, so it's easier to type this errata! Beaches response has reinforced my confidence. Of course, they might want to try another Biologics or give Enbrel another couple of months to work. Take care. Jo X

  • Hi again Jo - I think it was just a bog standard shot of Kenalog which is fairly bog standard IM steroid I believe but my body holds onto things - good and bad - for dear life so that a steroid injection will work much longer with me than it does for most people. This could possibly be why my RA still hasn't really come back in a clear cut form despite having been five months now since my last MTX injection. I guess in another month's time I might know whether this is the case - just in time for Christmas ;-) x

  • I'm pleased you've got through the other side of your horrible period Jo even if it meant increasing your prednisolone. I've been taking low dose steroids now for over 3 years & flare if I try to taper them & also since OA decided to progress more rapidly my Rheumy's decided it's best to stay on them until my next appointment when we'll discuss my options, if it's her I see that is. After my appointment with a Registrar last January I think it would be wise to ensure any decision made is ok'd by her!

    I've never been prescribed pred, only ever deflazacort, & recently found a likely reason I don't gain weight. It appears when used as maintenance therapy it prevents fat accumulation and leads to an improvement in the lipoproteins but quite why I don't experience the hyper/depressive symptoms I haven't fathomed yet. It must be so frustrating for you to react to something that otherwise helps but I really hope your appointment with the new Registrar goes well & alternatives are offered to get you back to more like yourself...... & back to painting. :) x

  • Bless you Heels. Yes, it's been tough, especially living on my home. I have some wonderful friends and neighbours but I don't want to use up all their goodwill. I must look into that thing about improvement in lipoproteins; never heard of that. I fear I have put on weight. I wonder what you call a low dose, and whether deflazacort is much the same as Prednisilone. I'd better look into that too!

    Are you still finding you can't edit on iPad? I can't and it's maddening. It's OK on my iMac, but I use my iPad whenever I can.

    Thanks so much for your support.

    Jo

    x

  • Oh Jo, please don't be afraid to reach out to your friends. They are plentiful & would think they'd be more than happy to help if they knew how you'd been struggling. Why not broach the subject of your recent particularly bad time next time you meet up with one or any of them, I bet you'd be surprised.

    I'll send you the link I'd bookmarked about deflazacort. I started looking into it a little while back & it's comparisons to other glucocorticoids.

    Yes, still having problems editing. Must check back because one of the tech team said it should be sorted in about a fortnight & that must have been about a fortnight ago! I'll get back to you about it. x

    ncbi.nlm.nih.gov/pmc/articl...

  • Oh, I do reach out. Well, actually I can't reach too well ant the moment (!), but they reach in. I'm very very lucky, but I'm aware that they have also got their lives to live. I just wish I had a partner who would be here. I've got lots of people to,do things with. More and more, I want someone to do nothing with! My ex-partner is still around and supportive, but always wants to DO things! Heigh ho! I look at that link after supper. Many thanks.

    Jo

    x

  • Oh 'eck, I do hope I've not raked over old coals but I know just what you mean about having someone to do nothing with.

    I've contacted tech support again but I don't expect an answer til tomorrow earliest. Have you tried holding & dragging the cursor to see if that works? x

  • No raking of coals, don't worry. I was just explaining.

    I've Just tried dragging the cursor. It sort of works but in a laborious way; it's a very different action to how it works elsewhere on my iPad - in emails, for example. Still a bit better, thank you.

    Inflammation going down, but still aching all over ( flu-like ache, but no fever)

    Night night Jo x

  • So sorry you are having such a rotten time Jora. Oral steroids send me into crazy land, and when you are in complete agony it's so difficult. Your GP should be able to give you an IM steroid injection, I've had kenalog in the past and it has worked for a longer period. It must be soooo hard coping with this wretched disease on your own. I sincerely hope you see some progress soon and you can get back to doing your lovely paintings. Sending love and support x

  • Bless you Metal Legs. Yes, it's not getting any easier. I'm not quite as bad as I was at the outset; I gave in to it rhen because I really had no option. But the sheer chronicity of it wears one down. I've aged about 20 years over the past 16 months and I don't think I'll ever get that strength back. My muscles have just atrophied, despite my attempts ar pilates and trying to walk a little every day. . still I try to be positive. Although I'm very sad not to have children, at least I don't have to worry about them worrying about me.! I'm a bit worried about my open studio on 28-30 November, but I'll probably find just enough energy in my reserve tank to get through it and the weaver, potter and jeweller showing with me will prop me up.

    I'm definitely going to try and get Kenalog. Thanks for that.

    What I really need is a break at the knoll House Hotel at Studland and a soak in the hot tub there. But it's very expensive and I believe the ferry is out of commission. Ah well, I'll close my eyes and visualise it. Love and support to you too. Jo x

  • I know how much pain can really wear you down Jo. I'm sure you would feel a bit of a lift after an IM injection and it would help you with your open studio weekend. Studland is a beautiful beach, sending you lots of energy and sea air xx

  • Hi Jora

    Sorry to hear about your flare, I have had one like that and had my husband to brush my teeth and cut up my food and open doors for me. Luckily for me after Enbrel, Infliximab and Humira I got on Rituximab and those days are behind me. Perhaps you do need a diff biologic? I have had lots of steroids over the years in all the forms. In the early days lots of oral pred which gave me anxiety weight gain and high blood pressure. Now I either get localised flares like me wrist at the mo or milder generalised one which my rheumy prescribed intramuscular injection of steroids. I've always had depomedrone which doesn't appear to give me any side effects except atrophy in the muscle. ( I had too many in my left buttock and ended up with a first side hole which eventually resolved) the dose I have is 120mg which my gp and local emergency centre thought was a huge dose????? Their lack of experience !! My rheumy doesn't like to give me too many but if I needed them he would see that as a sign my treatment wasn't effective and time for something else. Sorry I meant fist size hole. I can't edit on my iPhone !

    ( very annoying). Side effects such as depression, anxiety and mania are well documented with steroids. Have you been prescribed something to protect your bones? I take calcichew ( calcium and vit D) and have a bone density scan every 3 years. So far no probs. let us know how you get on. Take care KiKi x

  • That is enormously helpful

  • As I was saying, until that last brief message decided to send itself ....

    That is enormously helpful, Kiki. Thank you so much. I think I do need a different Biologics, and will find out more about Rituxumab. I have my Rheumy appointmebt on Monday so will go in well armed. I had a terrific rapport with the last one, and am a bit apprehensive about seeing someone new, but maybe a fresh appraisal is good. i wish I'd been able to keep off the steroids until I had seen him/ her, but I coldnt do a thing without them. I'm now cross with myself for having succumbed as he/she won't see the full horror of my condition. But I was beginning to panic about the exhibition I have opening on the 28th. Yes, I take CalciChew and had a bone scan last month. I should know the results on Monday. Thankfully, my blood pressure is Quite normal ( it was low, so has gone up, but I can afford that). Thanks again, especially for doing all that on your iPhone. I know how frustrating that can be. Jo X

  • I shouldn't worry too much about having the steroids, the rheumy will listen to you describe why you needed them and take that into account. I'm always asked at clinic when I last had a steroid injection. Like you say I think you will find some hidden reserves for your exhibition but I would block the few days after it in your diary as pj days! That's what I do when I have an event. Maybe make some food and pop in the freezer ready?

  • 6 DAYS LATER .,,

    Got to the hospital well prepared with notes and questions and a clear idea of my desired outcome -ie: slow reduction of Prednisilone down to 10 mg, then substitute tablets for IM injections, timing it so that blood monitoring is just prior to the jabs. I was very early and to my surprise, was summoned in to see the Big White Chief, rather than the new registrar. I'd seen him once before, for my initial private consultation. But I got no smile or eye contact on NHS. He looked at the notes, but not at me (anyone hear the Reith Lexture this morning?!) he wouldnt agree to IM injections, wants me to taper very rapidly from 15 mg to. 6mg, regardless of my previous horrendous experience. He then accused me of having taken myself off Hydroxy and Sulfa; of course, I'd only done this on instruction, prior to starting on Enbrel. So it's now Hydroxy, Sulfa, methotrexate, Enbrel, Prednisilone plus amitriptyline and painkillers. That's very heavy weaponry, but if that's what it takes ... Whether or not I'll be able to tolerate the rapid tapering 15 for 2 days, 12.5 for 4 days, 10 for 7 days, then down to 6 by 1 mg per 5 days - remains to be seen. Right now, it feels like a tough choice - Sanity v Mobility!

    i see my GP on Thursday.she is caring and a good listener, but no RA expert, so she may not want to challenge the consultant's proposal. But maybe she can help with the Pred tapering. I hope so, because I have my open studio next weekend. Up to 300 people through the house over 3 days is quite demanding at the best of times. Before anyone makes the well-intended suggestion that I give up the exhibitions, I'd better say that I can't!. Not yet. With no family, my art is my raison d'être.

    Thank you everyone for such wonderful support. I promise I'll do more 'Living with RA' sketches very soon. x

  • Found it..... eventually. I was looking for a separate post so went into your recent activity & there it was.

    How frustrating, little wonder you needed a bit of time to compose yourself. I understand about tapering your prednisolone, it does seem awfully quick. I'm on long term low dose deflazacort but whenever I'm been asked to taper, even low dose, it's been over 3 months.

    I don't know if you've seen your GP by now but I'd ask her opinion if it was me. As you suspect, probably not your "specialist" meds but my GP was able to help me when I went into a flare towards the end of April & reinstated my steroids. My Rheumy agreed it was the correct approach & considered I needed them so still on them (a Registrar asked me to taper).

    Is there any way you could have a couple of days or even just one doing nothing in the lead up to next weekend? You're running on reserve as it is at the mo & fear you'll tip over the edge otherwise. Only you know Jo but please listen out for the signs. x

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